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Davila C, Nouri S, Chan SH, Feltz B, Gosline A, Arenas Z, Kavanagh J, Paladino J, Dow LA, Jackson VA, Sudore R, Ritchie CS, Lindenberger E. Perceptions of Patient-Clinician Communication Among Adults With and Without Serious Illness. JAMA Netw Open 2025; 8:e250365. [PMID: 40063024 PMCID: PMC11894496 DOI: 10.1001/jamanetworkopen.2025.0365] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/13/2024] [Accepted: 01/05/2025] [Indexed: 03/14/2025] Open
Abstract
Importance High-quality, person-centered patient-clinician communication is critical in health care and may be less effective for patients with serious illness. Little is understood about differences in patient-clinician communication experiences of adults with and without serious illness. Objectives To determine whether perceptions of patient-clinician communication experiences differ between adults with and without serious illness. Design, Setting, and Participants This population-based cross-sectional survey was fielded from April 20 to May 31, 2021, and data were analyzed from January 27, 2023, to December 10, 2024. Participants included a nationally representative sample of US English- or Spanish-speaking adults, including people from historically marginalized groups (eg, Black and Hispanic or Latino individuals, people with low income), responding to an online or telephone survey. Exposure Participants were categorized by serious illness status. Participants with serious illness replied yes to (1) having a diagnosis from a list of medical conditions and (2) reporting feeling sicker or having decreased functionality during the last year. Main Outcomes and Measures The survey asked about community partner-derived measures of patient-clinician communication experiences, including trusting clinicians, feeling afraid to speak up, and being unsure about next steps. Multivariable logistic regression models were used to estimate the association of serious illness with these communication experiences, adjusting for sociodemographic characteristics. Percentages were weighted according to the National Opinion Research Center's statistical weighting methods to account for differences in nonresponse. Results Of 6126 individuals invited, 1847 (30.2%) completed the survey and were included in analysis (mean [SD] age, 48.4 [17.5] years); 950 (51.8%) identified as female; 191 (11.9%) identified as Black and 287 (16.7%) as Hispanic; and 434 (17.8%) had an annual income less than $30 000 (here called low income). Among respondents, 363 participants (18.5%) had serious illness (mean [SD] age, 50.2 [18.1] years; 218 [64.5%] female; 34 [12.4%] Black; 54 [16.4%] Hispanic; 131 [27.3%] with low income), and 1484 (81.5%) had no serious illness (mean [SD] age, 48.0 [17.4] years; 732 [48.9%] female; 157 [11.8%] Black; 233 [16.7%] Hispanic; 303 [15.6%] with low income). Compared with adults without serious illness, adults with serious illness were more likely to report leaving a visit unsure about next steps (adjusted odds ratio [AOR], 2.30; 95% CI, 1.62-3.27); being afraid to ask questions or speak up (AOR, 2.18; 95% CI, 1.55-3.08); believing they were talked down to or made to feel inferior (AOR, 1.90; 95% CI, 1.24-2.91); and believing that they were treated unfairly by clinicians (AOR, 3.26; 95% CI, 2.43-4.38). Conclusions and Relevance In this cross-sectional study, adults with serious illness more often had worse patient-clinician communication experiences. Further research is needed to better understand and develop interventions to improve perceptions of patient-clinician communication experiences for adults with serious illness.
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Affiliation(s)
- Carine Davila
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
- Center for Aging and Serious Illness, Mongan Institute, Massachusetts General Hospital, Boston
| | - Sarah Nouri
- Division of Palliative Medicine, Department of Medicine, University of California, San Francisco
| | - Stephanie H. Chan
- Massachusetts Coalition for Serious Illness Care, Boston
- Blue Cross Blue Shield of Massachusetts, Boston
| | - Brian Feltz
- 3D Research Partners LLC, Harvard, Massachusetts
- Flowetik, Boston, Massachusetts
| | - Anna Gosline
- Massachusetts Coalition for Serious Illness Care, Boston
- Blue Cross Blue Shield of Massachusetts, Boston
| | | | - Jane Kavanagh
- Massachusetts Coalition for Serious Illness Care, Boston
| | - Joanna Paladino
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
- Center for Aging and Serious Illness, Mongan Institute, Massachusetts General Hospital, Boston
| | - Lindsay A. Dow
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
| | - Vicki A. Jackson
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
- Center for Aging and Serious Illness, Mongan Institute, Massachusetts General Hospital, Boston
| | - Rebecca Sudore
- Division of Geriatrics, Department of Medicine, University of California, San Francisco
| | - Christine S. Ritchie
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
- Center for Aging and Serious Illness, Mongan Institute, Massachusetts General Hospital, Boston
| | - Elizabeth Lindenberger
- Division of Palliative Care and Geriatric Medicine, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston
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Jensen HI, Farmer SLH, Skaarup LO, Løkke A, Hygum A, Ipsen MJ, Gamst LH, Klausen MB. Development and testing of a generic patient decision aid for end-of-life care. PATIENT EDUCATION AND COUNSELING 2025; 132:108608. [PMID: 39705964 DOI: 10.1016/j.pec.2024.108608] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/23/2024] [Revised: 12/05/2024] [Accepted: 12/12/2024] [Indexed: 12/23/2024]
Abstract
OBJECTIVES The objective of this study was to develop and test a patient decision aid for end-of-life care to be used when some or all life-sustaining treatments have been withheld or withdrawn. METHODS A multi-professional, multi-sectorial group together with patients and relatives used a systematic process to develop and test the patient decision aid, including alpha and beta testing. RESULTS Healthcare professionals, patients and relatives were involved in the development and testing. The final Decision Helper included three areas with nine options: follow-up (outpatient clinic and general practitioner), palliative care (primary care, specialised palliative care team, hospital admission and hospice) and treatment level (intensive care, resuscitation attempt and nutrition via feeding tube). Most participants agreed that the amount of information in the Decision Helper was appropriate, that it clearly presented benefits and disadvantages and that it was useful in the value clarification process, helping to verbalise preferences and what is most important for patients. CONCLUSIONS Most patients and healthcare professionals found that the decision aid would be helpful in facilitating shared decision-making in an end-of-life conversation. PRACTICE IMPLICATIONS The decision aid will be usable in different healthcare setting ensuring that end-of-life care is in accordance with patients' wishes.
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Affiliation(s)
- Hanne Irene Jensen
- Department of Anesthesiology and Intensive Care, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark; Department of Anesthesiology and Intensive Care, Kolding Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark; Department of Regional Health Research, University of Southern Denmark, Odense M, Denmark.
| | - Sarah Leeth Hansen Farmer
- Department of Medicine, Hematology, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Lillian Oxholm Skaarup
- Department of Medicine, Hematology, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Anders Løkke
- Department of Regional Health Research, University of Southern Denmark, Odense M, Denmark; Department of Medicine, Vejle Hospital, a part of Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Anette Hygum
- Department of Oncology, Palliative Care Unit, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Mette Jo Ipsen
- Department of Quality, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Lisbeth Høilund Gamst
- Center for Shared Decision-making, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
| | - Maybritt Brunsgård Klausen
- Center for Shared Decision-making, Lillebaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
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Fowler C, Edmonds SW, Cullen L. Avoid a Blind Spot by Engaging Patients as Collaborators in Evidence-based Care. J Perianesth Nurs 2025; 40:225-231. [PMID: 39892924 DOI: 10.1016/j.jopan.2024.07.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/16/2024] [Accepted: 07/11/2024] [Indexed: 02/04/2025]
Affiliation(s)
- Cassandra Fowler
- Department of Nursing Services and Patient Care, University of Iowa Health Care, Iowa City, IA
| | - Stephanie W Edmonds
- Department of Nursing Services and Patient Care, University of Iowa Health Care, Iowa City, IA; Abbott Northwestern Hospital, Allina Health, Minneapolis, MN
| | - Laura Cullen
- Department of Nursing Services and Patient Care, University of Iowa Health Care, Iowa City, IA.
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Nøhr LM, Simony A, Abrahamsen C. Older patients' experiences of shared decision-making when choosing treatment for their distal radius fracture; A qualitative study. Int J Orthop Trauma Nurs 2025; 56:101153. [PMID: 39603012 DOI: 10.1016/j.ijotn.2024.101153] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/28/2024] [Revised: 11/13/2024] [Accepted: 11/18/2024] [Indexed: 11/29/2024]
Abstract
OBJECTIVE This study aims to understand how older patients experience shared decision-making (SDM) when making decisions about the treatment of their distal radius fracture (DRF). METHODS An exploratory qualitative study was designed using individual in-person and telephone interviews. Twelve DRF patients were recruited during their first follow-up visit to a Danish outpatient clinic, with ten of them participating in interviews. Data was analysed using content analysis. RESULTS Three themes emerged: 1) An acute situation, 2) Considerations influencing the treatment choice and 3) The treatment decision. CONCLUSION In conclusion, our study represents a pioneering effort in reporting the use of Shared Decision Making in fracture management. The sudden onset of DRF proved to be highly distressing for the patients. Providing SDM material to patients in the Emergency department (ED) aimed to empower them and prepare them for their subsequent outpatient clinic visit. However, its effectiveness varied. The demeanour of doctors played a crucial role in shaping patient experiences.
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Affiliation(s)
- Louise Marie Nøhr
- Department of Orthopaedic Surgery and Traumatology, Hospital Lillebaelt Kolding- University Hospital of Southern Denmark, Kolding Hospital, Sygehusvej 24, 6000, Kolding, Denmark
| | - Ane Simony
- Department of Orthopaedic Surgery and Traumatology, Hospital Lillebaelt Kolding- University Hospital of Southern Denmark, Kolding Hospital, Sygehusvej 24, 6000, Kolding, Denmark; Department of Regional Health Research, University of Southern Denmark, Odense, Denmark.
| | - Charlotte Abrahamsen
- Department of Orthopaedic Surgery and Traumatology, Hospital Lillebaelt Kolding- University Hospital of Southern Denmark, Kolding Hospital, Sygehusvej 24, 6000, Kolding, Denmark; Department of Regional Health Research, University of Southern Denmark, Odense, Denmark; Department of Emergency Medicine, Hospital Lillebaelt Kolding- University Hospital of Southern Denmark, Kolding Hospital, Sygehusvej 24, 6000, Kolding, Denmark.
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Fink TL, Hansen TF, Kristiansen C, Hansen TS, Thing RS, Timm S, Steffensen KD. Enhancing patient engagement: the influence of an in-consult patient decision aid on shared decision-making for lung tumour radiation - protocol for the randomised trial 'SDM Lung SBRT'. BMJ Open 2025; 15:e088595. [PMID: 39833001 PMCID: PMC11751786 DOI: 10.1136/bmjopen-2024-088595] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/14/2024] [Accepted: 12/12/2024] [Indexed: 01/22/2025] Open
Abstract
INTRODUCTION Patient engagement is continuously being promoted by patients as well as politicians and healthcare professionals. One way of increasing patient engagement is by using shared decision-making (SDM), which is a joint effort of clinicians and patients making decisions together.When planning stereotactic body radiation therapy (SBRT) for a lung tumour located close to the thoracic wall, there are conflicting interests between (1) delivering the highest possible dose to obtain local tumour control and (2) reducing the dose to the thoracic wall to decrease the risk of chest wall pain and rib fractures following treatment. The radiation oncologist often makes the choice of dose without any engagement of the patient. We believe that the patients should be engaged in such a decision.To explore this matter, we have designed a randomised trial, 'SDM Lung SBRT', for which we present our study protocol with a special focus on a patient decision aid (PtDA), which is being tested in this trial. METHODS AND ANALYSIS This study includes patients with a lung tumour located ≤1 cm from the thoracic wall. Patients are randomised to have the primary consultation with or without use of the PtDA. Treatment options are a radiation dose of either 66 Gray (Gy) in three fractions, 45 Gy in three fractions or no treatment. The primary outcome is patient engagement in decision-making measured by the validated observer-rated OPTION-12 score. Secondary outcomes are patient-reported outcomes, quality of life and side effects following treatment. ETHICS AND DISSEMINATION All patients give informed consent to participate. According to Danish legislation, ethical approval is not required for this study as studies using questionnaires, observations or other non-biological studies are not considered interventions according to the Committee Act. Results from this study will be presented at scientific meetings and published in English peer-reviewed journals. TRIAL REGISTRATION NUMBER ClinicalTrials.gov (NCT04940936).
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Affiliation(s)
- Thomas Leth Fink
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
- Department of Regional Health Research, University of Southern Denmark, Vejle, Denmark
| | - Torben Frøstrup Hansen
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
- Department of Regional Health Research, University of Southern Denmark, Vejle, Denmark
| | - Charlotte Kristiansen
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
| | - Torben Schjødt Hansen
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
| | - Rune Slot Thing
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
| | - Signe Timm
- Department of Oncology, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
- Department of Regional Health Research, University of Southern Denmark, Vejle, Denmark
| | - Karina Dahl Steffensen
- Department of Regional Health Research, University of Southern Denmark, Vejle, Denmark
- Center for Shared Decision Making, Lillebaelt Hospital-University Hospital of Southern Denmark, Vejle, Denmark
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Dengsø KE, Berg A, Hansen CP, Burgdorf SK, Krohn PS, Sillesen M, Spiegelhauer N, Bach MT, Melton M, Nielsen B, Christensen BM, Finderup J, Hillingsø J. Have a vital end-user been overlooked? Developing a shared decision intervention for patients with potential pancreatic cancer regarding the choice of surgery. PEC INNOVATION 2024; 4:100269. [PMID: 38435237 PMCID: PMC10907832 DOI: 10.1016/j.pecinn.2024.100269] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 05/01/2023] [Revised: 02/21/2024] [Accepted: 02/21/2024] [Indexed: 03/05/2024]
Abstract
Objective To develop a patient decision aid facilitating shared decision making for patients with potential pancreatic cancer deciding about no treatment, surgical or medical treatment. Methods Based on a user-centred design by Wittemann et al., we developed a shared decision making intervention in three phases: 1) Understanding decision needs 2) Development of a patient decision aid (PtDA) based on a generic template 3) Assessment of the intervention from interviews with patients (n = 11), relatives (n = 11), nurses (n = 4) and surgeons (n = 2) analysed with thematic analysis, and measuring patients' perceptions of choice of options with the Decisional Conflict Scale. Results Results showed varying experiences with the use of the PtDA, with surgeons not finding PtDA useful as it was impractical and constraining with patients' conversations. There was no difference in patients' perceptions in choosing options for those being presented vs those patients not being presented for the PtDA. Conclusion The format and structure of the PtDA was not feasible for the surgeons as fundamental users in the present clinic. Innovation This study highlights the urgent need to consider clinical context before introducing a predefined tool and shows the importance of a multistakeholder approach. Research should focus on finding means to successful implement shared decision making.
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Affiliation(s)
- Kristine Elberg Dengsø
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Anne Berg
- Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Carsten Palnæs Hansen
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Stefan K. Burgdorf
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Paul S. Krohn
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Martin Sillesen
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Nina Spiegelhauer
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Mette Tholstrup Bach
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Marianne Melton
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Betina Nielsen
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Bo Marcel Christensen
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
| | - Jeanette Finderup
- Department of Renal Medicine, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, 8200 Aarhus, Denmark
- Department of Clinical Medicine, Aarhus University, Denmark
- Research Centre for Patient Involvement, Aarhus University & Central Region, Denmark
| | - Jens Hillingsø
- The Department of Surgical Gastroenterology and Transplantation, Center for Cancer and Organ and Disease, University Hospital Rigshospitalet, Blegdamsvej 9, 2100 Copenhagen, Denmark
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Toft BS, Ellegaard T, Nielsen BK, Rossen CB, Hørlück JT, Ludvigsen MS, Bekker HL, Rodkjær LØ. Health service provider views on measuring patient involvement in healthcare: an interview study with researchers, clinicians, service managers, and policymakers. BMC Health Serv Res 2024; 24:1417. [PMID: 39548481 PMCID: PMC11568535 DOI: 10.1186/s12913-024-11904-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/08/2023] [Accepted: 11/08/2024] [Indexed: 11/18/2024] Open
Abstract
BACKGROUND There are several strategies used to assess involvement in their healthcare across service providers. However, there is no consensus on the most appropriate measurement tool to use when evaluating patient involvement initiatives. This qualitative study aimed to explore the perspectives of stakeholders from micro, meso, and macro levels within the Danish healthcare system on measuring patient involvement in their healthcare. METHODS This descriptive, explorative study employed semi-structured interviews with open-ended questions to elicit participants' views and experiences of patient involvement and measurement tools. A purposeful sample of participants was identified, to include decision makers, researchers, and health professionals (n = 20) with experiences of measuring patient involvement in healthcare at micro, meso, and macro levels across Danish organizations. Data underwent reflexive thematic analysis. RESULTS Three main themes were identified: 1) Determining the purpose of patient involvement practices and measurement alignment; 2) Reflecting on the qualities, fit, and usefulness of measures; 3) Recognizing conflicting stakeholder paradigms. Despite the interest in and positive attitudes toward patient involvement innovations, views on the meaning and value of evaluating involvement varied; in part, this was attributable to challenges in selecting criteria, methods, and measures for evaluation. CONCLUSION The findings indicate the need to integrate the perspectives of all key stakeholders in designing the evaluation of patient involvement initiatives. The application of a multiple stakeholder approach and co-production of a multidimensional evaluation may provide some common ground for selecting evaluation criteria and measurement tools in the healthcare setting. TRIAL REGISTRATION Danish Data Protection Agency (1-16-02-400-21) 15 October 2021.
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Affiliation(s)
- Bente Skovsby Toft
- Research Centre for Patient Involvement, Aarhus University Hospital, Aarhus, Denmark.
- Department of Clinical Medicine, Department of Cardiothoracic and Vascular Surgery, Aarhus Universityand, Aarhus University Hospital, Central Denmark Region , Palle Juul-Jensens Boulevard 99, 8200, Aarhus N, Denmark.
| | - Trine Ellegaard
- Psychosis Research Unit, Aarhus University Hospital, Psychiatry, Aarhus, Denmark
| | - Berit Kjærside Nielsen
- DEFACTUM, Social & Health Services and Labour Market, Central Denmark Region, Aarhus, Denmark
| | - Camilla Blach Rossen
- University Clinic for Interdisciplinary Orthopaedic Pathways, Silkeborg Regional Hospital, Silkeborg, Denmark
- Department of Clinical Medicine, Aarhus University, Aarhus, Denmark
| | - Jens Thusgaard Hørlück
- DEFACTUM, Social & Health Services and Labour Market, Central Denmark Region, Aarhus, Denmark
| | - Mette Spliid Ludvigsen
- Department of Clinical Medicine, Randers Regional Hospital, Aarhus University, Aarhus, Denmark
- Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway
| | - Hilary Louise Bekker
- Research Centre for Patient Involvement, Aarhus University Hospital, Aarhus, Denmark
- Department of Public Health, Aarhus University, Aarhus, Denmark
- Leeds Unit of Complex Intervention Development (@LUCID_Leeds), Leeds, UK
- School of Medicine, University of Leeds, Leeds, UK
| | - Lotte Ørneborg Rodkjær
- Research Centre for Patient Involvement, Aarhus University Hospital, Aarhus, Denmark
- Department of Public Health, Aarhus University, Aarhus, Denmark
- Department of Infectious Diseases, Aarhus University Hospital, Aarhus, Denmark
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Zhou T, Luo Y, Li J, Zhang H, Meng Z, Xiong W, Zhang J. Application of Artificial Intelligence in Oncology Nursing: A Scoping Review. Cancer Nurs 2024; 47:436-450. [PMID: 37272743 DOI: 10.1097/ncc.0000000000001254] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/06/2023]
Abstract
BACKGROUND Artificial intelligence (AI) has been increasingly used in healthcare during the last decade, and recent applications in oncology nursing have shown great potential in improving care for patients with cancer. It is timely to comprehensively synthesize knowledge about the progress of AI technologies in oncology nursing. OBJECTIVE The aims of this study were to synthesize and evaluate the existing evidence of AI technologies applied in oncology nursing. METHODS A scoping review was conducted based on the methodological framework proposed by Arksey and O'Malley and later improved by the Joanna Briggs Institute. Six English databases and 3 Chinese databases were searched dating from January 2010 to November 2022. RESULTS A total of 28 articles were included in this review-26 in English and 2 in Chinese. Half of the studies used a descriptive design (level VI). The most widely used AI technologies were hybrid AI methods (28.6%) and machine learning (25.0%), which were primarily used for risk identification/prediction (28.6%). Almost half of the studies (46.4%) explored developmental stages of AI technologies. Ethical concerns were rarely addressed. CONCLUSIONS The applicability and prospect of AI in oncology nursing are promising, although there is a lack of evidence on the efficacy of these technologies in practice. More randomized controlled trials in real-life oncology nursing settings are still needed. IMPLICATIONS FOR PRACTICE This scoping review presents comprehensive findings for consideration of translation into practice and may provide guidance for future AI education, research, and clinical implementation in oncology nursing.
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Affiliation(s)
- Tianji Zhou
- Author Affiliations: Xiangya School of Nursing (Drs Zhou, Luo, Li, and Jingping Zhang; Mr Meng; and Miss Xiong) and Xiangya Hospital (Dr Hanyi Zhang), Central South University, Changsha, Hunan, China
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Lawson McLean A, Lawson McLean AC. Integrating Shared Decision-Making into Undergraduate Oncology Education: A Pedagogical Framework. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2024; 39:374-382. [PMID: 38448671 PMCID: PMC11219368 DOI: 10.1007/s13187-024-02419-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 02/29/2024] [Indexed: 03/08/2024]
Abstract
The integration of shared decision-making (SDM) into undergraduate oncology education represents a critical evolution in medical pedagogy, reflecting the growing complexity and patient-centric focus of contemporary healthcare. This paper introduces a comprehensive pedagogical framework designed to embed SDM within the undergraduate medical curriculum, particularly in oncology, where the multiplicity of treatment options and their profound impact on patient life underscore the necessity of this approach. Grounded in a systematic literature review and aligned with established educational theories, this framework proposes twelve strategic approaches to cultivate future physicians proficient in both clinical acumen and patient-collaborative decision-making. The framework emphasizes real-world clinical experience, role-playing, case studies, and decision aids to deepen students' understanding of SDM. It advocates for the development of communication skills, ethical deliberation, and cultural competence, recognizing the multifaceted nature of patient care. The inclusion of patient narratives and evidence-based decision-making further enriches the curriculum, offering a holistic view of patient care. Additionally, the integration of digital tools within the SDM process acknowledges the evolving technological landscape in healthcare. The paper also addresses challenges in implementing this framework, such as curricular constraints and the need for educator training. It underscores the importance of continual evaluation and adaptation of these strategies to the dynamic field of medical education and practice. Overall, this comprehensive approach aims not only to enhance the quality of oncological care but also to prepare medical students for the complexities of modern medicine, where patient involvement in decision-making is both a necessity and an expectation.
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Affiliation(s)
- Aaron Lawson McLean
- Department of Neurosurgery, Jena University Hospital - Friedrich Schiller University Jena, Am Klinikum 1, 07747, Jena, Germany.
| | - Anna C Lawson McLean
- Department of Neurosurgery, Jena University Hospital - Friedrich Schiller University Jena, Am Klinikum 1, 07747, Jena, Germany
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Scheibler F, Geiger F, Wehkamp K, Danner M, Debrouwere M, Stolz-Klingenberg C, Schuldt-Joswig A, Sommer CG, Kopeleva O, Bünzen C, Wagner-Ullrich C, Koch G, Coors M, Wehking F, Clayman M, Weymayr C, Sundmacher L, Rüffer JU. Patient-reported effects of hospital-wide implementation of shared decision-making at a university medical centre in Germany: a pre-post trial. BMJ Evid Based Med 2024; 29:87-95. [PMID: 37890982 PMCID: PMC10982630 DOI: 10.1136/bmjebm-2023-112462] [Citation(s) in RCA: 6] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 09/28/2023] [Indexed: 10/29/2023]
Abstract
OBJECTIVES To evaluate the feasibility and effectiveness of the SHARE TO CARE (S2C) programme, a complex intervention designed for hospital-wide implementation of shared decision-making (SDM). DESIGN Pre-post study. SETTING University Hospital Schleswig-Holstein (UKSH), Kiel Campus. PARTICIPANTS Healthcare professionals as well as inpatients and outpatients from 22 departments of the Kiel Campus of UKSH. INTERVENTIONS The S2C programme is a comprehensive implementation strategy including four core modules: (1) physician training, (2) SDM support training for and support by nurses as decision coaches, (3) patient activation and (4) evidence-based patient decision aid development and integration into patient pathways. After full implementation, departments received the S2C certificate. MAIN OUTCOME MEASURES In this paper, we report on the feasibility and effectiveness outcomes of the implementation. Feasibility was judged by the degree of implementation of the four modules of the programme. Outcome measures for effectiveness are patient-reported experience measures (PREMs). The primary outcome measure for effectiveness is the Patient Decision Making subscale of the Perceived Involvement in Care Scale (PICSPDM). Pre-post comparisons were done using t-tests. RESULTS The implementation of the four components of the S2C programme was able to be completed in 18 of the 22 included departments within the time frame of the study. After completion of implementation, PICSPDM showed a statistically significant difference (p<0.01) between the means compared with baseline. This difference corresponds to a small to medium yet clinically meaningful positive effect (Hedges' g=0.2). Consistent with this, the secondary PREMs (Preparation for Decision Making and collaboRATE) also showed statistically significant, clinically meaningful positive effects. CONCLUSIONS The hospital-wide implementation of SDM with the S2C-programme proved to be feasible and effective within the time frame of the project. The German Federal Joint Committee has recommended to make the Kiel model of SDM a national standard of care.
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Affiliation(s)
- Fülöp Scheibler
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Köln, Germany
| | - Friedemann Geiger
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- Department of Psychology, MSH Medical School Hamburg, Hamburg, Germany
| | - Kai Wehkamp
- Department of Internal Medicine I, University Medical Center Schleswig-Holstein, Kiel, Germany
| | - Marion Danner
- DARUM Marion Danner und Anne Rummer GbR, Cologne, Germany
| | - Marie Debrouwere
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Constanze Stolz-Klingenberg
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Anja Schuldt-Joswig
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Christina Gesine Sommer
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Olga Kopeleva
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
- Department of General Surgery, University Hospital Schleswig Holstein, Kiel, Germany
| | - Claudia Bünzen
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Christine Wagner-Ullrich
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Gerhard Koch
- Department for Orthodontics, University Hospital Schleswig Holstein, Kiel, Germany
| | - Marie Coors
- Department of Health Economics, Technical University of Munich, München, Germany
| | - Felix Wehking
- Department of Emergency Medicine, University Hospital Jena, Jena, Germany
| | - Marla Clayman
- Center for Healthcare Organization and Implementation Research (CHOIR), Veterans Administration, Bedford, Massachusetts, USA
- Department of Population and Quantitative Health Sciences, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USA
| | - Christian Weymayr
- Department of Paediatrics I, University Hospital Schleswig-Holstein, Kiel, Germany
- National Competency Center for Shared Decision Making, University Hospital Schleswig Holstein, Kiel, Germany
| | - Leonie Sundmacher
- Department of Health Economics, Technical University of Munich, München, Germany
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Kohut K, Morton K, Turner L, Foster R, Eccles D, Foster C. Codesign of Lynch Choices TM : Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways. Psychooncology 2024; 33:e6330. [PMID: 38502032 DOI: 10.1002/pon.6330] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/29/2023] [Revised: 02/29/2024] [Accepted: 03/08/2024] [Indexed: 03/20/2024]
Abstract
BACKGROUND Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM , a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care. METHODS Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM . An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA. RESULTS Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map. CONCLUSIONS Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset to translate research findings into clinical practice.
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Affiliation(s)
- Kelly Kohut
- Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK
- St George's University Hospitals NHS Foundation Trust, London, UK
| | - Kate Morton
- Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK
| | - Lesley Turner
- Patient and Public Contributor, University of Southampton, Southampton, UK
| | - Rebecca Foster
- Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK
| | - Diana Eccles
- Faculty of Medicine, University of Southampton, Southampton, UK
| | - Claire Foster
- Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, UK
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Kohut K, Morton K, Hurley K, Turner L, Dale C, Eastbrook S, Gold R, Henwood K, Patton S, Punjabi R, White H, Young C, Young J, Bancroft E, Barnett L, Cable S, Connolly G, Coad B, Forman A, Hanson H, Kavanaugh G, Sahan K, Snape K, Torr B, Way R, Winchester E, Youngs A, Eccles D, Foster C. 'A good decision is the one that feels right for me': Codesign with patients to inform theoretical underpinning of a decision aid website. Health Expect 2024; 27:e13844. [PMID: 37705192 PMCID: PMC10768874 DOI: 10.1111/hex.13844] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2023] [Revised: 07/17/2023] [Accepted: 08/01/2023] [Indexed: 09/15/2023] Open
Abstract
INTRODUCTION Patient decision aids (PtDA) complement shared decision-making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision-making. METHODS Short presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small-group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis. RESULTS The overarching theme was: It's personal. Contextual factors important for decision-making were varied and changed over time. There was no one 'best fit' theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback. CONCLUSION Meaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision-making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care. PATIENT CONTRIBUTION Patients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi-structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.
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Affiliation(s)
- Kelly Kohut
- School of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC)University of SouthamptonSouthamptonUK
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Kate Morton
- School of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC)University of SouthamptonSouthamptonUK
| | - Karen Hurley
- Stanford R. Weiss, MD Center for Hereditary Colorectal NeoplasiaCleveland ClinicClevelandOhioUSA
| | | | | | | | | | | | | | | | | | | | | | | | - Elizabeth Bancroft
- Cancer Genetics Unit and Academic Urology UnitThe Royal Marsden NHS Foundation TrustLondonUK
- Oncogenetics TeamThe Institute of Cancer ResearchLondonUK
| | - Lily Barnett
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Sarah Cable
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Gaya Connolly
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Beth Coad
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Andrea Forman
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Helen Hanson
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Grace Kavanaugh
- Division of Genetics and EpidemiologyThe Institute of Cancer ResearchLondonUK
| | - Katherine Sahan
- Nuffield Department of Population Health, The Ethox CentreUniversity of OxfordOxfordUK
| | - Katie Snape
- St George's University Hospitals NHS Foundation TrustLondonUK
| | - Bethany Torr
- Division of Genetics and EpidemiologyThe Institute of Cancer ResearchLondonUK
| | - Rosalind Way
- Division of Genetics and EpidemiologyThe Institute of Cancer ResearchLondonUK
| | | | - Alice Youngs
- St George's University Hospitals NHS Foundation TrustLondonUK
| | | | - Diana Eccles
- Faculty of MedicineUniversity of SouthamptonSouthamptonUK
| | - Claire Foster
- School of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC)University of SouthamptonSouthamptonUK
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Hæe M, Wulff CN, Fokdal L, Olling K, Jensen KM, Hansen DG, Knudsen AØ, Lemley B, Blou D, Büchmann H, Steffensen KD. Development, implementation and evaluation of patient decision aids supporting shared decision making in women with recurrent ovarian cancer. PEC INNOVATION 2023; 2:100120. [PMID: 37214495 PMCID: PMC10194391 DOI: 10.1016/j.pecinn.2022.100120] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 04/21/2022] [Revised: 11/12/2022] [Accepted: 12/26/2022] [Indexed: 05/24/2023]
Abstract
Objective Shared decision making (SDM) and use of patient decision aids (PtDAs) are key components in patient-centered care in relapsed ovarian cancer. This paper describes the development and implementation process of PtDAs into a clinical routine in three departments. Methods Two PtDAs were developed in collaboration between patients and clinicians. Acceptability and usability of the PtDAs were tested on clinicians and patients using items from the internationally validated questionnaire "Preparation for Decision Making Scale". Results Ten patients and 15 clinicians participated in the study. Most patients indicated that PtDAs would be helpful as preparation for the decision-making process with the clinicians. Ten (75%) of the clinicians responded that the PtDAs helped the patients to understand the benefits and disadvantages of each treatment option. Generally, the clinicians indicated that they would use SDM if they had a PtDA tailored to the clinical situation. Conclusions Two PtDAs were systematically developed, tested, and implemented thereby supporting an SDM intervention. The PtDAs are still in use at the participating departments. Innovation This study was successful in reusing a generic template for a patient decision aid (PtDA) developed at one institution and implemented in two other institutions. This was guided by a well-described systematic development process for PtDAs.
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Affiliation(s)
- Mette Hæe
- Department of Clinical Oncology, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, DK- 8200 Aarhus N, Denmark
| | - Christian Nielsen Wulff
- Department of Clinical Oncology, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, DK- 8200 Aarhus N, Denmark
| | - Lars Fokdal
- Department of Clinical Oncology, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, DK- 8200 Aarhus N, Denmark
| | - Karina Olling
- Centre for Shared Decision Making, Lillebaelt University Hospital of Southern Denmark, Beridderbakken 4, DK-7100 Vejle, Denmark
| | - Karina Mølgaard Jensen
- Centre for Shared Decision Making, Lillebaelt University Hospital of Southern Denmark, Beridderbakken 4, DK-7100 Vejle, Denmark
| | - Dorte Gilså Hansen
- Centre for Shared Decision Making, Lillebaelt University Hospital of Southern Denmark, Beridderbakken 4, DK-7100 Vejle, Denmark
- Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | - Anja Ør Knudsen
- Department of Clinical Oncology, Odense University Hospital, J. B. Winsløws Vej 4, DK-5000 Odense, Denmark
| | | | - Dorte Blou
- Patient Representative
- KIU (Patient organisation)
| | | | - Karina Dahl Steffensen
- Centre for Shared Decision Making, Lillebaelt University Hospital of Southern Denmark, Beridderbakken 4, DK-7100 Vejle, Denmark
- Department of Oncology, Lillebaelt Hospital – University Hospital of Southern Denmark, Beridderbakken 4, DK-7100 Vejle, Denmark
- Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
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Orstad S, Fløtten Ø, Madebo T, Gulbrandsen P, Strand R, Lindemark F, Fluge S, Tilseth RH, Schaufel MA. "The challenge is the complexity" - A qualitative study about decision-making in advanced lung cancer treatment. Lung Cancer 2023; 183:107312. [PMID: 37481888 DOI: 10.1016/j.lungcan.2023.107312] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/02/2023] [Revised: 07/15/2023] [Accepted: 07/18/2023] [Indexed: 07/25/2023]
Abstract
INTRODUCTION The value of shared decision-making and decision aids (DA) has been well documented yet remain difficult to integrate into clinical practice. We wanted to investigate needs and challenges regarding decision-making about advanced lung cancer treatment after first-line therapy, focusing on DA applicability. METHODS Qualitative data from separate, semi-structured focus groups with patients/relatives and healthcare professionals were analysed using systematic text condensation. 12 patients with incurable lung cancer, seven relatives, 12 nurses and 18 doctors were recruited from four different hospitals in Norway. RESULTS The participants described the following needs and challenges affecting treatment decisions: 1) Continuity of clinician-patient-relationships as a basic framework for decision-making; 2) barriers to information exchange; 3) negotiation of autonomy; and 4) assessment of uncertainty and how to deal with it. Some clinicians feared DA would steal valuable time and disrupt consultations, arguing that such tools could not incorporate the complexity and uncertainty of decision-making. Patients and relatives reported a need for more information and the possibility both to decline or continue burdensome therapy. Participants welcomed interventions supporting information exchange, like communicative techniques and organizational changes ensuring continuity and more time for dialogue. Doctors called for tools decreasing uncertainty about treatment tolerance and futile therapy. CONCLUSION Our study suggests it is difficult to develop an applicable DA for advanced lung cancer after first-line therapy that meets the composite requirements of stakeholders. Comprehensive decision support interventions are needed to address organizational structures, communication training including scientific and existential uncertainty, and assessment of frailty and treatment toxicity.
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Affiliation(s)
- Silje Orstad
- Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway
| | - Øystein Fløtten
- Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway; Department of Clinical Science, University of Bergen, Norway
| | - Tesfaye Madebo
- Department of Pulmonary Medicine, Stavanger University Hospital, Stavanger, Norway
| | - Pål Gulbrandsen
- Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway; Health Services Research Unit HØKH, Akershus University Hospital, Norway
| | - Roger Strand
- Centre for the Study of the Sciences and the Humanities, University of Bergen, Norway
| | - Frode Lindemark
- Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway
| | - Sverre Fluge
- Department of Pulmonary Medicine, Haugesund Hospital, Haugesund, Norway
| | | | - Margrethe Aase Schaufel
- Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway; Department of Clinical Science, University of Bergen, Norway; Bergen Centre for Ethics and Priority Setting, University of Bergen, Norway.
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Murphy M, McCaughan E, Thompson G, Carson MA, Hanna JR, Donovan M, Wilson RH, Fitzsimons D. Trusting relationships between patients with non-curative cancer and healthcare professionals create ethical obstacles for informed consent in clinical trials: a grounded theory study. BMC Palliat Care 2023; 22:85. [PMID: 37393250 DOI: 10.1186/s12904-023-01204-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/16/2023] [Accepted: 06/21/2023] [Indexed: 07/03/2023] Open
Abstract
BACKGROUND Clinical trial participation for patients with non-curative cancer is unlikely to present personal clinical benefit, which raises the bar for informed consent. Previous work demonstrates that decisions by patients in this setting are made within a 'trusting relationship' with healthcare professionals. The current study aimed to further illuminate the nuances of this relationship from both the patients' and healthcare professionals' perspectives. METHODS Face-to-face interviews using a grounded theory approach were conducted at a regional Cancer Centre in the United Kingdom. Interviews were performed with 34 participants (patients with non-curative cancer, number (n) = 16; healthcare professionals involved in the consent process, n = 18). Data analysis was performed after each interview using open, selective, and theoretical coding. RESULTS The 'Trusting relationship' with healthcare professionals underpinned patient motivation to participate, with many patients 'feeling lucky' and articulating an unrealistic hope that a clinical trial could provide a cure. Patients adopted the attitude of 'What the doctor thinks is best' and placed significant trust in healthcare professionals, focusing on mainly positive aspects of the information provided. Healthcare professionals recognised that trial information was not received neutrally by patients, with some expressing concerns that patients would consent to 'please' them. This raises the question: Within the trusting relationship between patients and healthcare professionals, 'Is it possible to provide balanced information?'. The theoretical model identified in this study is central to understanding how the trusting professional-patient relationship influences the decision-making process. CONCLUSION The significant trust placed on healthcare professionals by patients presented an obstacle to delivering balanced trial information, with patients sometimes participating to please the 'experts'. In this high-stakes scenario, it may be pertinent to consider strategies, such as separation of the clinician-researcher roles and enabling patients to articulate their care priorities and preferences within the informed consent process. Further research is needed to expand on these ethical conundrums and ensure patient choice and autonomy in trial participation are prioritised, particularly when the patient's life is limited.
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Affiliation(s)
- Mary Murphy
- Resuscitation Services, Elliott Dynes Building Royal Victoria Hospital, Belfast Health and Social Care Trust, Belfast, UK
| | - Eilís McCaughan
- School of Nursing and Midwifery Institute of Nursing and Health Research, Ulster University, Coleraine, UK
| | - Gareth Thompson
- School of Nursing and Midwifery Medical Biology Centre, Queen's University Belfast, Belfast, UK
| | - Matthew A Carson
- School of Nursing and Midwifery Medical Biology Centre, Queen's University Belfast, Belfast, UK
| | - Jeffrey R Hanna
- School of Nursing and Midwifery Medical Biology Centre, Queen's University Belfast, Belfast, UK
| | - Monica Donovan
- School of Nursing and Midwifery Medical Biology Centre, Queen's University Belfast, Belfast, UK
| | - Richard H Wilson
- Institute of Cancer Sciences, University of Glasgow, Glasgow, UK
| | - Donna Fitzsimons
- School of Nursing and Midwifery Medical Biology Centre, Queen's University Belfast, Belfast, UK.
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Sabbagh A, Weiss J, Tawk B, Mohammed MA, Abdulbaki H, Moraes FY, Grover S, Yap ML, Zubizarreta E, Lievens Y, Rodin D, Mohamad O. Hypofractionation Adoption in Prostate Cancer Radiotherapy: Results of an International Survey. JCO Glob Oncol 2023; 9:e2300046. [PMID: 37319396 PMCID: PMC10497301 DOI: 10.1200/go.23.00046] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/22/2023] [Revised: 03/22/2023] [Accepted: 04/14/2023] [Indexed: 06/17/2023] Open
Abstract
PURPOSE Hypofractionation is noninferior to conventional fractionation in the treatment of localized prostate cancer. Using results from the European Society of Radiation Oncology's (ESTRO) Global Impact of Radiotherapy in Oncology (GIRO) initiative survey on hypofractionation, this study identifies rates of adoption, facilitating factors, and barriers to adoption of hypofractionation in prostate cancer across World Bank income groups. MATERIALS AND METHODS The ESTRO-GIRO initiative administered an international, anonymous, electronic survey to radiation oncologists from 2018 to 2019. Physician demographics, clinical practice characteristics, and hypofractionation regimen use (if any) for several prostate cancer scenarios were collected. Responders were asked about specific justifications and barriers to adopting hypofractionation, and responses were stratified by World Bank income group. Multivariate logistic regression models were used to analyze variables associated with hypofractionation preference. RESULTS A total of 1,157 physician responses were included. Most respondents (60%) were from high-income countries (HICs). In the curative setting, hypofractionation was most often preferred in low- and intermediate-risk prostate cancers, with 52% and 47% of respondents reporting hypofractionation use in ≥50% of patients, respectively. These rates drop to 35% and 20% in high-risk prostate cancer and where pelvic irradiation is indicated. Most respondents (89%) preferred hypofractionation in the palliative setting. Overall, respondents from upper-middle-income countries and lower-middle- and low-income countries were significantly less likely to prefer hypofractionation than those from HICs (P < .001). The most frequently cited justification and barrier were availability of published evidence and fear of worse late toxicity, respectively. CONCLUSION Hypofractionation preference varies by indication and World Bank income group, with greater acceptance among providers in HICs for all indications. These results provide a basis for targeted interventions to increase provider acceptance of this treatment modality.
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Affiliation(s)
- Ali Sabbagh
- Department of Radiation Oncology, University of California San Francisco, San Francisco, CA
- American University of Beirut Medical Center, Beirut, Lebanon
| | - Jessica Weiss
- Department of Biostatistics, Princess Margaret Cancer Centre, University of Toronto, Toronto, ON, Canada
| | - Bouchra Tawk
- Clinical Cooperation Unit—Translational Radiation Oncology, National Center for Tumoral Diseases NCT Heidelberg, German Cancer Research Center (DKFZ), Heidelberg University Hospital, Heidelberg, Germany
| | - Mohammed A. Mohammed
- American University of Beirut Medical Center, Beirut, Lebanon
- Department of Radiation Oncology, University of Pittsburgh Medical Center, Pittsburgh, PA
| | - Hasan Abdulbaki
- Department of Radiation Oncology, University of California San Francisco, San Francisco, CA
| | - Fabio Y. Moraes
- Department of Oncology, Division of Radiation Oncology, Queen's University, Kingston, ON, Canada
| | - Surbhi Grover
- Department of Radiation Oncology, University of Pennsylvania, Philadelphia, Philadelphia, PA
- Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
| | - Mei Ling Yap
- Collaboration for Cancer Outcomes, Research and Evaluation (CCORE), Ingham Institute, UNSW Sydney, Liverpool, NSW, Australia
- Liverpool and Macarthur Cancer Therapy Centres, Western Sydney University, Campbelltown, NSW, Australia
- The George Institute for Global Health, UNSW Sydney, Newtown, NSW, Australia
| | | | - Yolande Lievens
- Ghent University Hospital and Ghent University, Ghent, Belgium
| | - Danielle Rodin
- Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada
- Department of Radiation Oncology, University of Toronto, ON, Canada
| | - Osama Mohamad
- Department of Radiation Oncology, University of California San Francisco, San Francisco, CA
- Department of Urology, University of California San Francisco, San Francisco, CA
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Mortelmans L, Bosselaers S, Goossens E, Schultz H, Dilles T. Shared decision making on medication use between nurses and patients in an oncology setting: A qualitative descriptive study. Eur J Oncol Nurs 2023; 64:102321. [PMID: 37146350 DOI: 10.1016/j.ejon.2023.102321] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/29/2022] [Revised: 02/25/2023] [Accepted: 03/10/2023] [Indexed: 03/14/2023]
Abstract
PURPOSE (i) To explore patients' and nurses' experiences with medication-related shared decision making (SDM) (i.e., familiarity with the concept, application of medication-related SDM, barriers and facilitators towards its application) and (ii) to explore their role perceptions, respectively. METHODS A qualitative study was conducted in which seven interviews with oncological patients and a focus group interview with six nurses were performed. Prior to the interviews, observations of the application of shared decision making were conducted using the OPTION-12 scale. The observations were used exclusively to trigger the group discussion. Data were collected from November 2020 until March 2021. RESULTS According to participants, the application of SDM regarding medication by nurses in oncology is limited. Barriers mentioned were health status, medication-related knowledge, the therapeutic nurse-patient relationship, time pressures and workload. Patients valued nurses' contribution to SDM regarding medication and perceived them as key persons because of their advocating, informative, facilitating and supportive role. Individual and contextual factors determined patients' desire for involvement in medication-related decisions. DISCUSSION Participants solely concentrated on SDM concerning drug choice and management of therapeutic and adverse effects. The patients' and nurses' experiences and perceptions towards SDM in other domains of pharmaceutical care need further investigation.
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Affiliation(s)
- Laura Mortelmans
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Research Foundation Flanders (FWO), Leuvenseweg 38, 1000, Brussel, Belgium.
| | - Sarah Bosselaers
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Department of Oncology, Gasthuiszusters Antwerpen (GZA Hospital), Oosterveldlaan 24, 2610, Wilrijk, Belgium
| | - Eva Goossens
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium; Department of Patient Care, Antwerp University Hospital (UZA), Drie Eikenstraat 655, 2650, Edegem, Belgium
| | - Helen Schultz
- Surgical Department, Odense University Hospital, J.B. Winsløws Vej 4, 5000, Odense C, Denmark; Institute of Clinical Research, University of Southern Denmark, Campusvej 55, 5230, Odense M, Denmark
| | - Tinne Dilles
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium
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18
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Housten AJ, Kozower BD, Engelhardt KE, Robinson C, Puri V, Samson P, Cooksey K, Politi MC. Developing an Educational and Decision Support Tool for Stage I Lung Cancer Using Decision Science. Ann Thorac Surg 2023; 115:299-308. [PMID: 35926640 DOI: 10.1016/j.athoracsur.2022.07.019] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/28/2022] [Revised: 05/26/2022] [Accepted: 07/19/2022] [Indexed: 02/07/2023]
Abstract
BACKGROUND Guidelines recommend shared decision-making about treatment options for high-risk, operable stage I lung cancer. Patient decision aids can facilitate shared decision-making; however, their development, implementation, and evaluation in routine clinical practice presents numerous challenges and opportunities. METHODS The purpose of this review is to reflect on the process of tool development; identify the challenges associated with meeting the needs of patients, clinicians from multiple disciplines, and institutional workflow during implementation; and propose recommendations for future clinicians who wish to develop, refine, or implement similar tools into routine care. RESULTS In this review, we: (1) discuss guidelines for decision aid development; (2) describe how we applied those to create an education and decision support tool for patients with clinical stage I lung cancer deciding between radiation therapy and surgical resection; and (3) highlight challenges in implementing and evaluating the tool. CONCLUSIONS We provide recommendations for those seeking to develop, refine, or implement similar tools into routine care.
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Affiliation(s)
- Ashley J Housten
- Division of Public Health Sciences, Department of Surgery, Washington University in St Louis, St Louis, Missouri
| | - Benjamin D Kozower
- Division of Cardiothoracic Surgery, Department of Surgery, Washington University in St Louis, St Louis, Missouri
| | - Kathryn E Engelhardt
- Division of Cardiothoracic Surgery, Department of Surgery, Washington University in St Louis, St Louis, Missouri
| | - Clifford Robinson
- Department of Radiation Oncology, Washington University in St Louis, St Louis, Missouri
| | - Varun Puri
- Division of Cardiothoracic Surgery, Department of Surgery, Washington University in St Louis, St Louis, Missouri
| | - Pamela Samson
- Department of Radiation Oncology, Washington University in St Louis, St Louis, Missouri
| | - Krista Cooksey
- Division of Public Health Sciences, Department of Surgery, Washington University in St Louis, St Louis, Missouri
| | - Mary C Politi
- Division of Public Health Sciences, Department of Surgery, Washington University in St Louis, St Louis, Missouri.
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Steffensen KD, Hansen DG, Espersen K, Lauth S, Fosgrau P, Pedersen AM, Groen PS, Sauvr C, Olling K. "SDM:HOSP"- a generic model for hospital-based implementation of shared decision making. PLoS One 2023; 18:e0280547. [PMID: 36693036 PMCID: PMC9873173 DOI: 10.1371/journal.pone.0280547] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/11/2022] [Accepted: 12/09/2022] [Indexed: 01/25/2023] Open
Abstract
BACKGROUND Shared decision making (SDM) is a core element in the meeting between patient and healthcare professionals, but has proved difficult to implement and sustain in routine clinical practice. One of five Danish regions set out to succeed and to develop a model that ensures lasting SDM based on learnings from large-scale real-world implementation initiatives that go beyond the 'barriers' and 'facilitators' research approach. This paper describes this process and development of a generic implementation model, SDM:HOSP. METHODS This project was carried out in the Region of Southern Denmark with five major hospital units. Based on existing theory of SDM, SDM implementation, implementation science and improvement methodology, a process of four phases were described; development of conceptual elements, field-testing, evaluation, and development of the final implementation model. The conceptual elements developed aimed to prepare leaders, train SDM teachers, teach clinicians to perform SDM, support development of patient decision aids, and support systematic planning, execution and follow-up. Field testing was done including continuous participant evaluations and an overall evaluation after one year. RESULTS Data from field testing and learnings from the implementation process, illustrated the need for a dynamic and easy adjustable model. The final SDM:HOSP model included four themes; i)Training of Leaders, ii) Training of Teachers and Clinicians, iii) Decision Helper, and iv) 'Process', each with details in three levels, 1) shared elements, 2) recommendations, and 3) local adaption. CONCLUSIONS A feasible and acceptable model for implementation of SDM across hospitals and departments that accounts for different organizations and cultures was developed. The overall design can easily be adapted to other organizations and can be adjusted to fit the specific organization and culture. The results from the ongoing and overall evaluation suggest promising avenues for future work in further testing and research of the usability of the model.
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Affiliation(s)
- Karina Dahl Steffensen
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
- Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | - Dorte Gilså Hansen
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
- Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | | | - Susanne Lauth
- West Jutland Hospital of Southern Denmark, Esbjerg, Denmark
- Aarhus University Hospital, Aarhus, Denmark
| | | | | | | | - Christian Sauvr
- Department of Clinical Development, Odense University Hospital, Odense, Denmark
| | - Karina Olling
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
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20
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Carvalho F, Qiu S, Panagi V, Hardy K, Tutcher H, Machado M, Silva F, Dinen C, Lane C, Jonroy A, Knox J, Worley L, Whibley J, Perren T, Thain J, McPhail J. Total Pelvic Exenteration surgery - Considerations for healthcare professionals. EUROPEAN JOURNAL OF SURGICAL ONCOLOGY 2023; 49:225-236. [PMID: 36030135 DOI: 10.1016/j.ejso.2022.08.011] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/11/2022] [Revised: 07/22/2022] [Accepted: 08/12/2022] [Indexed: 01/24/2023]
Abstract
BACKGROUND Associated with considerable risk of morbidity, Total Pelvic Exenteration (TPE) is a life-altering procedure involving a significant prolonged recovery. As a result, and with the view of achieving the best outcomes and lessen short and long-term morbidities, a well-thought-out and coordinated multidisciplinary team approach, is crucial to the provision of safe and high-quality care. METHOD Using a nominal group technique and qualitative methodology, this article explores the current practices in the care of oncology patients who undergo TPE surgery, in a tertiary cancer centre, by highlighting considerations of a collaboratively multi-disciplinary team. RESULTS This article provides guidance on the multi-disciplinary team approach, relating to TPE surgery, with discussion of clinical concerns, and with the goal of high patient satisfaction, provision of effective care and the lessening of short and long-term morbidities. CONCLUSION Oncology patients that undergo TPE surgery benefit from the contribution of a diversified multidisciplinary team as skilled and competent care that meets patient's health and social care needs is provided in a holistic, comprehensive, and timely care manner. Improving patient's care, pathway and postoperative outcomes, with the use of clinical expertise and support from professionals in the multidisciplinary team, can maximise care.
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Affiliation(s)
- Filipe Carvalho
- The Royal Marsden Hospital NHS Foundation Trust, London, UK.
| | - Shengyang Qiu
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Vasia Panagi
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Katy Hardy
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Hannah Tutcher
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Marta Machado
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | | | - Caroline Dinen
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Carol Lane
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Alleh Jonroy
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Jon Knox
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Lynn Worley
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | | | - Tobias Perren
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
| | - Jane Thain
- The Royal Marsden Hospital NHS Foundation Trust, London, UK
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21
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Mushonga M, Weiss J, Liu ZA, Nyakabau AM, Mohamad O, Tawk B, Moraes FY, Grover S, Yap ML, Zubizarreta E, Lievens Y, Rodin D. Hypofractionation in Breast Cancer Radiotherapy Across World Bank Income Groups: Results of an International Survey. JCO Glob Oncol 2023; 9:e2200127. [PMID: 36706350 PMCID: PMC10166450 DOI: 10.1200/go.22.00127] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/28/2023] Open
Abstract
PURPOSE Hypofractionated breast radiotherapy has been found to be equivalent to conventional fractionation in many clinical trials. Using data from the European Society for Radiotherapy and Oncology Global Impact of Radiotherapy in Oncology survey, we identified preferences for hypofractionation in breast cancer across World Bank income groups and the perceived facilitators and barriers to its use. MATERIALS AND METHODS An international, electronic survey was administered to radiation oncologists from 2018 to 2019. Demographics, practice characteristics, preferred hypofractionation regimen for specific breast cancer scenarios, and facilitators and barriers to hypofractionation were reported and stratified by World Bank income groups. Variables associated with hypofractionation were assessed using multivariate logistic regression models. RESULTS One thousand four hundred thirty-four physicians responded: 890 (62%) from high-income countries (HICs), 361 (25%) from upper-middle-income countries (UMICs), 183 (13%) from low- and lower-middle-income countries (LLMICs). Hypofractionation was preferred most frequently in node-negative disease after breast-conserving surgery, with the strongest preference reported in HICs (78% from HICs, 54% from UMICs, and 51% from LLMICs, P < .001). Hypofractionation for node-positive disease postmastectomy was more frequently preferred in LLMICs (28% from HICs, 15% from UMICs, and 35% from LLMICs, P < .001). Curative doses of 2.1 to < 2.5 Gy in 15-16 fractions were most frequently reported, with limited preference for ultra-hypofractionation, but significant variability in palliative dosing. In adjusted analyses, UMICs were significantly less likely than LLMICs to prefer hypofractionation across all curative clinical scenarios, whereas respondents with > 1 million population catchments and with intensity-modulated radiotherapy were more likely to prefer hypofractionation. The most frequently cited facilitators and barriers were published evidence and fear of late toxicity, respectively. CONCLUSION Preference for hypofractionation varied for curative indications, with greater acceptance in earlier-stage disease in HICs and in later-stage disease in LLMICs. Targeted educational interventions and greater inclusivity in radiation oncology clinical trials may support greater uptake.
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Affiliation(s)
- Melinda Mushonga
- Sally Mugabe Central Hospital, Harare, Zimbabwe.,Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, Canada.,Department of Radiation Oncology, University of Toronto, Toronto, Ontario, Canada
| | - Jessica Weiss
- Department of Biostatistics, Princess Margaret Cancer Centre, Toronto, Ontario, Canada
| | - Zhihui Amy Liu
- Department of Biostatistics, Princess Margaret Cancer Centre, Toronto, Ontario, Canada.,Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
| | - Anna-Mary Nyakabau
- Department of Oncology, Faculty of Health Sciences, University of Zimbabwe, Harare, Zimbabwe
| | - Osama Mohamad
- Department of Radiation Oncology, University of California San Francisco, San Francisco, CA
| | - Bouchra Tawk
- German Cancer Research Consortium, Core Site Heidelberg, German Cancer Research Center, Heidelberg, Germany.,Division of Molecular and Translational Radiation Oncology, Department of Radiation Oncology, Heidelberg Faculty of Medicine and Heidelberg University Hospital, Heidelberg, Germany
| | - Fabio Y Moraes
- Department of Oncology, Division of Radiation Oncology, Queen's University, Kingston, Ontario, Canada
| | - Surbhi Grover
- Department of Radiation Oncology, University of Pennsylvania, Philadelphia, United States; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
| | - Mei Ling Yap
- Collaboration for Cancer Outcomes, Research and Evaluation (CCORE), Ingham Institute, UNSW Sydney, Liverpool, Australia.,Liverpool and Macarthur Cancer Therapy Centres, Western Sydney University, Campbelltown, Australia.,School of Public Health, Faculty of Medicine and Health, University of Sydney, Campbelltown, Australia
| | | | - Yolande Lievens
- Ghent University Hospital and Ghent University, Ghent, Belgium
| | - Danielle Rodin
- Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, Canada.,Department of Radiation Oncology, University of Toronto, Toronto, Ontario, Canada
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22
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Impact of surgery and chemotherapy timing on outcomes in older versus younger epithelial ovarian cancer patients: A nationwide Danish cohort study. J Geriatr Oncol 2023; 14:101359. [PMID: 35989185 DOI: 10.1016/j.jgo.2022.08.008] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/05/2022] [Revised: 05/30/2022] [Accepted: 08/12/2022] [Indexed: 11/21/2022]
Abstract
INTRODUCTION To explore differences in surgical complexity, chemotherapy administration, and treatment delays between younger and older Danish patients with epithelial ovarian cancer (EOC). MATERIALS AND METHODS We included a nationwide cohort diagnosed with EOC from 2013 to 2018. We described surgical complexity and outcomes, the extent of chemotherapy and treatment delays stratified by age (<70 and ≥ 70 years), and surgical modality (primary, interval, or no debulking surgery). RESULTS In total, we included 2946 patients. For patients with advanced-stage disease, 52% of the older patients versus 25% of the younger patients did not undergo primary debulking surgery (PDS) or interval debulking surgery (IDS). For patients undergoing PDS or IDS, older patients underwent less extensive surgery and more often had residual disease after surgery >0 cm compared to younger patients. Furthermore, older patients were less often treated with chemotherapy. Older patients had PDS later than younger. We did not find any differences between age groups concerning treatment delays. Two-year cancer-specific survival differed significantly between age groups regardless of curatively intended treatment. DISCUSSION This study demonstrates that older patients are treated less actively concerning surgical and oncological treatment than younger patients, leading to worse cancer-specific survival. Older patients do not experience more treatment delays than younger ones.
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23
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van Veenendaal H, Peters LJ, van Weele E, Hendriks MP, Schuurman M, Visserman E, Hilders CGJM, Ubbink DT. Effects and Working Mechanisms of a Multilevel Implementation Program for Applying Shared Decision-Making while Discussing Systemic Treatment in Breast Cancer. Curr Oncol 2022; 30:236-249. [PMID: 36661668 PMCID: PMC9857756 DOI: 10.3390/curroncol30010019] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/25/2022] [Revised: 12/19/2022] [Accepted: 12/21/2022] [Indexed: 12/28/2022] Open
Abstract
Background: Enhancing the application of shared decision-making (SDM) is critical for integrating patient preferences in breast cancer treatment choices. We investigated the effect of an adapted multilevel SDM implementation program in breast cancer care. Methods: Breast cancer patients qualifying for (neo)adjuvant systemic treatment were included in a multicenter before−after study. Consultations were audio recorded between June 2018 and July 2019 and analyzed using the five-item Observing Patient Involvement in Decision-Making (OPTION-5) instrument to score SDM application by clinicians. The Shared Decision-Making Questionnaire (SDM-Q-9) was used to rate patients’ perceived SDM level. Consultation duration, decision types, number of options discussed and consultations per patient were monitored. Regression analysis was used to investigate the correlated variables and program components. Results: Mean OPTION-5 scores increased from 33.9 (n = 63) before implementation to 54.3 (n = 49) after implementation (p < 0.001). The SDM-Q-9 scores did not change: 91.1 (n = 51) at baseline versus 88.9 (n = 23) after implementation (p = 0.81). Without increasing consultation time, clinicians discussed more options after implementation. The regression analysis showed that exposure to the implementation program, redistribution of tasks and discussing feedback from consultations was associated with a higher level of SDM. Conclusion: The multilevel program helped clinicians achieve clinically relevant improvement in SDM, especially when it is tailored to (individuals in) teams and includes (e-)training, discussing feedback on consultations and redistribution of tasks.
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Affiliation(s)
- Haske van Veenendaal
- Erasmus School of Health Policy & Management, Erasmus University Rotterdam, 3000 DR Rotterdam, The Netherlands
- Dutch Association of Oncology Patient Organizations, Godebaldkwartier 363, 3511 DT Utrecht, The Netherlands
| | - Loes J. Peters
- Department of Surgery, Location University of Amsterdam, Amsterdam University Medical Centers, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
| | - Esther van Weele
- Dutch Association of Oncology Patient Organizations, Godebaldkwartier 363, 3511 DT Utrecht, The Netherlands
- Vestalia, Acaciapark 136, 1213 LD Hilversum, The Netherlands
| | - Mathijs P. Hendriks
- Department of Medical Oncology, Northwest Clinics, Wilhelminalaan 12, 1815 JD Alkmaar, The Netherlands
| | - Maaike Schuurman
- Dutch Association of Breast Cancer Patients, Godebaldkwartier 363, 3511 DT Utrecht, The Netherlands
| | - Ella Visserman
- Dutch Association of Oncology Patient Organizations, Godebaldkwartier 363, 3511 DT Utrecht, The Netherlands
| | - Carina G. J. M. Hilders
- Erasmus School of Health Policy & Management, Erasmus University Rotterdam, 3000 DR Rotterdam, The Netherlands
- Board of Directors, Reinier de Graaf Hospital, Reinier de Graafweg 5, 2625 AD Delft, The Netherlands
| | - Dirk T. Ubbink
- Department of Surgery, Location University of Amsterdam, Amsterdam University Medical Centers, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
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24
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Wulff CN, Hæe M, Hansen DG, Olling K, Jensen KM, Knudsen AØ, Fokdal L, Steffensen KD. Shared decision making in recurrent ovarian cancer: Implementation of patient decision aids across three departments of oncology in Denmark. PEC INNOVATION 2022; 1:100095. [PMID: 37213765 PMCID: PMC10194381 DOI: 10.1016/j.pecinn.2022.100095] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 10/29/2021] [Revised: 10/17/2022] [Accepted: 10/31/2022] [Indexed: 05/23/2023]
Abstract
Objective Patients with relapsed ovarian cancer are offered multiple treatment options. To match treatment with the individual patient's life situation and preferences, healthcare professionals can apply shared decision making (SDM) including patient decision aids (PtDAs).This study aimed to evaluate the implementation of two different PtDAs in consultations with patients suffering from relapsed ovarian cancer. Methods We analyzed the following data before and after implementation of the PtDAs: 1) observed SDM using the OPTION instrument, 2) physician treatment recommendations, and 3) patients' and physicians' evaluations of SDM in consultations using the CollaboRATE, SDM-Q-9, and SDM-Q-Doc. Results Significant improvement in observed SDM was found after the implementation (p = 0.002). Improvement of SDM was detected in consultations conducted by physicians reporting more than two hours of SDM-training (p < 0.001), but not when physicians reported less than two hours of SDM-training.No before/after differences in treatment recommendations and in patients' and physicians' evaluations were found. Conclusion Implementation of PtDAs improved the level of observed SDM. Training of physicians in SDM is necessary for improved SDM practice. Innovation Discussing oncological treatment options with the use of PtDAs is not standard practice in Denmark. The present study is one of the first Danish studies focusing on how to implement SDM and PtDAs in oncological consultations.
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Affiliation(s)
- Christian Nielsen Wulff
- Department of Oncology, Aarhus University Hospital, Denmark
- Department of Clinical Medicine, Aarhus University, Denmark
- Corresponding author at: Department of Oncology, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, Krydspunkt C618, 8200 Aarhus N, Denmark.
| | - Mette Hæe
- Department of Oncology, Aarhus University Hospital, Denmark
- Department of Oncology, Gødstrup Hospital, Denmark
| | - Dorte Gilså Hansen
- Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
- Institute of Regional Health Research, University of Southern Denmark, Denmark
| | - Karina Olling
- Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
| | - Karina Mølgaard Jensen
- Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
| | - Anja Ør Knudsen
- Department of Clinical Oncology, Odense University Hospital, Denmark
| | - Lars Fokdal
- Department of Oncology, Aarhus University Hospital, Denmark
- Department of Clinical Medicine, Aarhus University, Denmark
- Department of Oncology, Vejle/Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
| | - Karina Dahl Steffensen
- Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
- Institute of Regional Health Research, University of Southern Denmark, Denmark
- Department of Oncology, Vejle/Lillebaelt Hospital, University Hospital of Southern Denmark, Denmark
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25
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Ubbink DT, Damman OC, de Jong BA. Shared decision-making in patients with multiple sclerosis. Front Neurol 2022; 13:1063904. [PMID: 36438979 PMCID: PMC9691958 DOI: 10.3389/fneur.2022.1063904] [Citation(s) in RCA: 13] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/07/2022] [Accepted: 10/25/2022] [Indexed: 09/09/2023] Open
Abstract
Multiple sclerosis (MS) is a chronic and progressive neurological disorder impacting physical, cognitive, and psychosocial health. The disease course, severity, and presence of symptoms differ within and between persons over time and are unpredictable. Given the preference-sensitive nature of many key decisions to be made, and the increasing numbers of disease-modifying therapies, shared decision-making (SDM) with patients seems to be key in offering optimum care and outcomes for people suffering from MS. In this paper, we describe our perspective on how to achieve SDM in patients with MS, following key SDM-elements from established SDM-frameworks. As for deliberation in the clinical encounter, SDM communication training of professionals and feedback on their current performance are key aspects, as well as encouraging patients to participate. Concerning information for patients, it is important to provide balanced, evidence-based information about the benefits and the harms of different treatment options, including the option of surveillance only. At the same time, attention is needed for the optimal dosage of that information, given the symptoms of cognitive dysfunction and fatigue among MS-patients, and the uncertainties they have to cope with. Finally, for broader communication, a system is required that assures patient preferences are actually implemented by multidisciplinary MS-teams. As SDM is also being implemented in many countries within the context of value-based health care, we consider the systematic use of outcome information, such as patient-reported outcome measures (PROMs) and Patient Decision Aids, as an opportunity to achieve SDM.
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Affiliation(s)
- Dirk T. Ubbink
- Department of Surgery, Amsterdam University Medical Centers, Public Health Research Institute, University of Amsterdam, Amsterdam, Netherlands
| | - Olga C. Damman
- Department of Public and Occupational Health, Amsterdam University Medical Centers, Public Health Research Institute, Free University of Amsterdam, Amsterdam, Netherlands
| | - Brigit A. de Jong
- Department of Neurology, Amsterdam University Medical Centers, MS Center Amsterdam, Amsterdam Neuroscience Research Institute, Public Health Research Institute, Free University of Amsterdam, Amsterdam, Netherlands
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26
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Sultan L, Alsaywid B, De Jong N, De Nooijer J. Current Trends in Interprofessional Shared Decision-Making Programmes in Health Professions Education: A Scoping Review. SUSTAINABILITY 2022; 14:13157. [DOI: 10.3390/su142013157] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/03/2025]
Abstract
Background: Shared decision-making (SDM) is considered a patient-centred approach that requires interprofessional collaboration among healthcare professionals. Teaching interprofessional shared decision-making (IP-SDM) to students preparing for clinical practice facilitates the accomplishment of collaboration. Objective: This review seeks to provide an overview of current IP-SDM educational interventions with respect to their theoretical frameworks, delivery, and outcomes in healthcare. Methods: A scoping review was undertaken using PRISMA. Electronic databases, including OVID-MEDLINE, PubMed, OVID- EMBASE, ERIC, EBSCO-CINAHL, Cochrane Trails, APA PsycINFO, NTLTD, and MedNar, were searched for articles published between 2000 and 2020 on IP-SDM education and evaluation. Grey literature was searched for additional articles. Quality assessment and data extraction were independently completed by two reviewers, piloted on a random sample of specific articles, and revised iteratively. Results: A total of 63 articles met the inclusion criteria. The topics included various SDM models (26 articles) and educational frameworks and learning theories (20 articles). However, more than half of the studies did not report a theoretical framework. Students involved in the studies were postgraduates (22 articles) or undergraduates (18 articles), and 11 articles included both. The teaching incorporated active educational methods, including evaluation frameworks (18 articles) and Kirkpatrick’s model (6 articles). The mean educational intervention duration was approximately 4 months. Most articles did not include summative or formative assessments. The outcomes assessed most often included collaboration and communication, clinical practice and outcome, patients’ preferences, and decision-making skills. Conclusions: Overall, these articles demonstrate interest in teaching IP-SDM knowledge, skills, and attitudes in health professions education. However, the identified educational interventions were heterogeneous in health professionals’ involvement, intervention duration, educational frameworks, SDM models, and evaluation frameworks. Practice implications: We need more homogeneity in both theoretical frameworks and validated measures to assess IP-SDM.
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Affiliation(s)
- Lama Sultan
- Department of Clinical Nutrition, Ministry of National Guard Health Affairs, King Abdulaziz Medical City, P.O. Box 9515, Jeddah 21423, Saudi Arabia
- School of Health Professions Education, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands
| | - Basim Alsaywid
- Urology Department, King Faisal Specialist Hospital and Research Center, P.O. Box 3354, Riyadh 11211, Saudi Arabia
- Education and Research Skills Directory, Saudi National Institute of Health, P.O. Box 75050, Riyadh 12382, Saudi Arabia
| | - Nynke De Jong
- Department of Health Services Research, School of Health Professions Education, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands
| | - Jascha De Nooijer
- Department of Health Promotion, School of Health Professions Education, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands
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27
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Kuo CY, Wei PL, Chen CC, Lin YK, Kuo LJ. Nomogram to predict permanent stoma in rectal cancer patients after sphincter-saving surgery. World J Gastrointest Surg 2022; 14:765-777. [PMID: 36157368 PMCID: PMC9453330 DOI: 10.4240/wjgs.v14.i8.765] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/04/2022] [Revised: 06/21/2022] [Accepted: 07/22/2022] [Indexed: 02/07/2023] Open
Abstract
BACKGROUND Approximately 20 percent of patients with a tumour localized in the low rectum still encounter the possibility of requiring permanent stoma (PS), which can cause drastic changes in lifestyle and physical perceptions.
AIM To determine the risk factors for PS and to develop a prediction model to predict the probability of PS in rectal cancer patients after sphincter-saving surgery.
METHODS A retrospective cohort of 421 rectal cancer patients who underwent radical surgery at Taipei Medical University Hospital between January 2012 and December 2020 was included in this study. Univariate and multivariate analyses were performed to identify the independent risk factors for PS. A nomogram was developed according to the independent risk factors obtained in the multivariate analysis. The performance of the nomogram was assessed using a receiver operating characteristic curve and a calibration curve.
RESULTS The PS rate after sphincter-saving surgery was 15.1% (59/391) in our study after a median follow-up of 47.3 mo (range 7–114 mo). Multivariate logistic regression analysis demonstrated that local recurrence, perirectal abscess, anastomosis site stenosis, perineural invasion, tumor size and operative time were independent risk factors for PS. These identified risk factors were incorporated into the nomogram, and the concordance index of this model was 0.903 (95%CI: 0.851-0.955). According to the calibration curves, the nomogram represents a perfect prediction model.
CONCLUSION Several risk factors for PS after sphincter-saving surgery were identified. Our nomogram exhibited perfect predictive ability and will improve a physician’s ability to communicate the benefits and risks of various treatment options in shared decision making.
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Affiliation(s)
- Chih-Yu Kuo
- Department of Surgery, Taipei Medical University Hospital, Taipei 11031, Taiwan
| | - Po-Li Wei
- Division of Colorectal Surgery, Department of Surgery, Taipei Medical University Hospital, Taipei 11031, Taiwan
- Department of Surgery, School of Medicine, College of Medicine, Taipei Medical University, Taipei 11031, Taiwan
| | - Chia-Che Chen
- Division of Colorectal Surgery, Department of Surgery, Taipei Medical University Hospital, Taipei 11031, Taiwan
| | - Yen-Kuang Lin
- Graduate Institute of Athletics and Coaching Science, National Taiwan Sport University, Taoyuan 33301, Taiwan
| | - Li-Jen Kuo
- Division of Colorectal Surgery, Department of Surgery, Taipei Medical University Hospital, Taipei 11031, Taiwan
- Department of Surgery, School of Medicine, College of Medicine, Taipei Medical University, Taipei 11031, Taiwan
- Taipei Cancer Center, Taipei Medical University, Taipei 11031, Taiwan
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Sorensen von Essen H, Poulsen FR, Dahlrot RH, Piil K, Steffensen KD. Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:7396. [PMID: 35742644 PMCID: PMC9223526 DOI: 10.3390/ijerph19127396] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 05/18/2022] [Revised: 06/09/2022] [Accepted: 06/14/2022] [Indexed: 12/21/2022]
Abstract
When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.
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Affiliation(s)
- Helle Sorensen von Essen
- Department of Neurosurgery, Odense University Hospital, Kloevervaenget 47, Indgang 44, 46, 1. sal, DK-5000 Odense, Denmark;
- Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark;
| | - Frantz Rom Poulsen
- Department of Neurosurgery, Odense University Hospital, Kloevervaenget 47, Indgang 44, 46, 1. sal, DK-5000 Odense, Denmark;
- Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark;
- BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark
| | - Rikke Hedegaard Dahlrot
- Clinical Institute, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark;
- Department of Oncology, Odense University Hospital, Kloevervaenget 19, DK-5000 Odense, Denmark
- The Danish Center for Particle Therapy, Palle Juul-Jensens Blvd. 99, DK-8200 Aarhus, Denmark
| | - Karin Piil
- Department of Oncology, Center for Cancer and Organ Diseases, Copenhagen University Hospital, Blegdamsvej 9, DK-2100 Copenhagen, Denmark;
- Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000 Aarhus, Denmark
| | - Karina Dahl Steffensen
- Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, J.B. Winsloews Vej 19, DK-5000 Odense, Denmark;
- Center for Shared Decision Making, Region of Southern Denmark, Beriderbakken 4, DK-7100 Vejle, Denmark
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Sorensen von Essen H, Stacey D, Dahl Steffensen K, Guldager R, Rom Poulsen F, Piil K. Decisional needs of patients with recurrent high-grade glioma and their families. Neurooncol Pract 2022; 9:402-410. [PMID: 36127893 PMCID: PMC9476966 DOI: 10.1093/nop/npac046] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/07/2023] Open
Abstract
Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients’ and family members’ decisional needs when making the decision. Methods We performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted. Results A total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients’ decisions. Conclusion This study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support.
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Affiliation(s)
- Helle Sorensen von Essen
- Department of Neurosurgery, Odense University Hospital , Odense , Denmark
- Clinical Institute and BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark , Odense , Denmark
| | - Dawn Stacey
- Center for Shared Decision Making, Region of Southern Denmark , Vejle , Denmark
- Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark , Odense , Denmark
- School of Nursing and Ottawa Hospital Research Institute, University of Ottawa , Ottawa, Ontario , Canada
| | - Karina Dahl Steffensen
- Center for Shared Decision Making, Region of Southern Denmark , Vejle , Denmark
- Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark , Odense , Denmark
| | - Rikke Guldager
- Department of Neurosurgery, Copenhagen University Hospital, Rigshospitalet , Copenhagen , Denmark
| | - Frantz Rom Poulsen
- Department of Neurosurgery, Odense University Hospital , Odense , Denmark
- Clinical Institute and BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark , Odense , Denmark
| | - Karin Piil
- Department of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital , Copenhagen , Denmark
- Department of Public Health, Aarhus University , Aarhus C , Denmark
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Dahl Steffensen K, Mølri Knudsen B, Finderup J, Willemann Würgler M, Olling K. Implementation of patient-centred care in Denmark: The way forward with shared decision-making. ZEITSCHRIFT FUR EVIDENZ, FORTBILDUNG UND QUALITAT IM GESUNDHEITSWESEN 2022; 171:36-41. [PMID: 35606311 DOI: 10.1016/j.zefq.2022.04.005] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/14/2022] [Revised: 04/06/2022] [Accepted: 04/12/2022] [Indexed: 06/15/2023]
Abstract
LEGAL AND POLITICAL LANDSCAPE IN SHARED DECISION MAKING Current Danish legislation empowers patients in securing their rights, but there are no present legislative developments in Denmark to support patient involvement. Policy initiatives within health care, however, show positive trends by, for example, including recommendations for shared decision making (SDM) in national clinical guidelines and the allocation of resources to fund projects in SDM. Within the last five years, three out of five regions have launched centers in patient involvement and SDM to focus on training, implementation of patient decision aids (PtDAs) and to foster the cultural change in SDM. A national dissemination of a template for easy building of PtDAs accessible via an online platform is one of the latest initiatives. THE WAY FORWARD Although the political discourse on SDM is gathering speed, an unclear definition and purpose of SDM is a barrier to real-life implementation. Politicians, leaders and clinicians seem to be moving at different paces and in different directions and are lacking consensus on SDM as a paradigm requiring training, leadership and a patient-centered mindset. CONCLUSION Many relevant initiatives are underway. However, SDM is also challenged by the lack of legislation and a central push for real SDM implementation in Denmark.
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Affiliation(s)
- Karina Dahl Steffensen
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark; Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.
| | - Bettina Mølri Knudsen
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark; Institute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | - Jeanette Finderup
- Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Medicine, Aarhus University, Aarhus, Denmark; ResCenPI - Research Centre for Patient Involvement, Central Region Denmark & Aarhus University, Aarhus, Denmark
| | | | - Karina Olling
- Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark
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Blake Gornall A, Hutchinson AM, Redley B. Clinician perspectives of pregnant women's participation in antiemetic decision-making: A qualitative study. Nurs Health Sci 2022; 24:54-64. [PMID: 35174947 DOI: 10.1111/nhs.12930] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/29/2021] [Revised: 01/30/2022] [Accepted: 02/07/2022] [Indexed: 11/30/2022]
Abstract
This study explored clinician perceptions of women's participation in decision-making about antiemetic treatments during pregnancy, and the suitability of the five Choosing Wisely questions to increase women's involvement. The qualitative interpretive descriptive design used semi-structured interviews to capture data. Participants were six obstetricians and six midwives experienced in providing care for pregnant women seeking support for nausea and vomiting at a single private, obstetrician-led maternity health service in Australia. Thematic analysis revealed four themes that captured clinician perspectives about women's participation in decision-making about antiemetic treatments: (i) information gathering; (ii) developing an understanding; (iii) using knowledge; and (iv) making decisions. Clinician attitudes and perspectives, as well as their self-reported styles of communication and negotiation, influenced how they engaged with women during decision-making. While unfamiliar with the five Choosing Wisely questions, almost all participants considered them potentially useful, but for other clinicians. Strategies to actively involve women in decision-making about antiemetics were inconsistently used. The five Choosing Wisely questions may provide a useful tool for clinicians, but further research is needed to better understand women's perspectives and clinician-related barriers to shared decision-making.
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Affiliation(s)
| | - Alison M Hutchinson
- School of Nursing and Midwifery, Deakin University, Burwood, Victoria, Australia.,Centre for Quality and Patient Safety Research in the Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia.,Monash Health, Clayton, Victoria, Australia
| | - Bernice Redley
- School of Nursing and Midwifery, Deakin University, Burwood, Victoria, Australia.,Centre for Quality and Patient Safety Research in the Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia.,Monash Health, Clayton, Victoria, Australia
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Tuesen LD, Bülow HH, Ågård AS, Strøm SM, Fromme E, Jensen HI. Discussing patient preferences for levels of life-sustaining treatment: development and pilot testing of a Danish POLST form. BMC Palliat Care 2022; 21:9. [PMID: 35016665 PMCID: PMC8749111 DOI: 10.1186/s12904-021-00892-2] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2020] [Accepted: 12/08/2021] [Indexed: 12/02/2022] Open
Abstract
BACKGROUND Medically frail and/or chronically ill patients are often admitted to Danish hospitals without documentation of patient preferences. This may lead to inappropriate care. Modelled on the American Physician Orders for Life-Sustaining Treatment (POLST) form, the purpose of the study was to develop and pilot test a Danish POLST form to ensure that patients' preferences for levels of life-sustaining treatment are known and documented. METHODS The study was a mixed methods study. In the initial phase, a Danish POLST form was developed on the basis of literature and recommendations from the National POLST organisation in the US. A pilot test of the Danish POLST form was conducted in hospital wards, general practitioners' clinics, and nursing homes. Patients were eligible for inclusion if death was assessed as likely within 12 months. The patient and his/her physician engaged in a conversation where patient values, beliefs, goals for care, diagnosis, prognosis, and treatment alternatives were discussed. The POLST form was completed based on the patient's values and preferences. Family members and/or nursing staff could participate. Participants' assessments of the POLST form were evaluated using questionnaires, and in-depth interviews were conducted to explore experiences with the POLST form and the conversation. RESULTS In total, 25 patients participated, 45 questionnaires were completed and 14 interviews were conducted. Most participants found the POLST form readable and understandable, and 93% found the POLST form usable to a high or very high degree for discussing preferences regarding life-sustaining treatment. Three themes emerged from the interviews: (a) an understandable document is essential for the conversation, (b) handling and discussing wishes, and (c) significance for the future. CONCLUSION The Danish version of the POLST form is assessed by patients, families, physicians, and nurses as a useful model for obtaining and documenting Danish patients' preferences for life-sustaining treatment. However, this needs to be confirmed in a larger-scale study.
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Affiliation(s)
- Lone Doris Tuesen
- Department of Anaesthesiology and Intensive Care, Vejle and Middelfart Hospitals, University Hospital of Southern Denmark, Beriderbakken 4, DK-7100, Vejle, Denmark.
- Department of Regional Health Research, University of Southern Denmark, J.B.Winsløwsvej 19, DK-5000, Odense, Denmark.
| | - Hans-Henrik Bülow
- Department of Anaesthesiology and Intensive Care, University Hospital Holbaek, Holbaek, Denmark
| | - Anne Sophie Ågård
- Department of Intensive Care, Aarhus University Hospital, Palle Juul-Jensens Boulevard 100, DK-8200, Aarhus N, Denmark
- Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000, Aarhus C, Denmark
| | | | - Erik Fromme
- Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA
| | - Hanne Irene Jensen
- Department of Anaesthesiology and Intensive Care, Vejle and Middelfart Hospitals, University Hospital of Southern Denmark, Beriderbakken 4, DK-7100, Vejle, Denmark
- Department of Regional Health Research, University of Southern Denmark, J.B.Winsløwsvej 19, DK-5000, Odense, Denmark
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Cilluffo S, Bassola B, Pucciarelli G, Vellone E, Lusignani M. Mutuality in nursing: A conceptual framework on the relationship between patient and nurse. J Adv Nurs 2021; 78:1718-1730. [PMID: 34873740 DOI: 10.1111/jan.15129] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2021] [Revised: 10/12/2021] [Accepted: 11/27/2021] [Indexed: 11/27/2022]
Abstract
AIMS To describe and develop a conceptual framework for the process of mutuality between nurse and patient. DESIGN This was a qualitative study with a grounded theory (GT) design following the constructivist approach of Charmaz (SAGE handbook of research, 2014). METHODS A sample of 33 patients with one or more chronic diseases and 35 nurses were interviewed between July and October 2020. Comparative and simultaneous data analyses were conducted. Theoretical sampling and saturation of categories were used to define the sample size. RESULTS A conceptual framework for mutuality between nurse (mean age 42 SD ±7 years, 89% female) and patient (mean age 63 SD ±8 years, 42% female) was developed, including the mutuality process, potential influencing factors for both nurses and patients, and outcomes. The mutuality process was characterised by three dimensions: developing and going beyond, being a reference, and deciding and sharing care. Influencing factors for nurses were personal characteristics and professional organisation, while for patients these were age and past experiences. Nurse outcomes were satisfaction and quality of life; patient outcomes were improved self-care and reduction of hospitalisation and emergency admissions. CONCLUSION This study described a new conceptual framework for mutuality between nurse and patient, which could improve our understanding of the relationship between nurses and patients, thus enhancing both nurse and patient outcomes.
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Affiliation(s)
- Silvia Cilluffo
- Department of Biomedicine and Prevention, University of Rome "Tor Vergata", Rome, Italy.,School of Nursing, Niguarda Hospital, University of Milan, Milan, Italy
| | - Barbara Bassola
- School of Nursing, Niguarda Hospital, University of Milan, Milan, Italy
| | - Gianluca Pucciarelli
- Department of Biomedicine and Prevention, University of Rome "Tor Vergata", Rome, Italy
| | - Ercole Vellone
- Department of Biomedicine and Prevention, University of Rome "Tor Vergata", Rome, Italy
| | - Maura Lusignani
- School of Nursing, Niguarda Hospital, University of Milan, Milan, Italy.,Department of Biomedical Sciences for Health, University of Milan, Milan, Italy
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Roy M, Purington N, Liu M, Blayney DW, Kurian AW, Schapira L. Limited English Proficiency and Disparities in Health Care Engagement Among Patients With Breast Cancer. JCO Oncol Pract 2021; 17:e1837-e1845. [PMID: 33844591 PMCID: PMC9810131 DOI: 10.1200/op.20.01093] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/07/2023] Open
Abstract
PURPOSE Race and ethnicity have been shown to affect quality of cancer care, and patients with low English proficiency (LEP) have increased risk for serious adverse events. We sought to assess the impact of primary language on health care engagement as indicated by clinical trial screening and engagement, use of genetic counseling, and communication via an electronic patient portal. METHODS Clinical and demographic data on patients with breast cancer diagnosed and treated from 2013 to 2018 within the Stanford University Health Care system were compiled via linkage of electronic health records, an internal clinical trial database, and the California Cancer Registry. Logistic and linear regression models were used to evaluate for association of clinical trial engagement and patient portal message rates with primary language group. RESULTS Patients with LEP had significantly lower rates of clinical trial engagement compared with their English-speaking counterparts (adjusted odds ratio [OR], 0.29; 95% CI, 0.16 to 0.51). Use of genetic counseling was similar between language groups. Rates of patient portal messaging did not differ between English-speaking and LEP groups on multivariable analysis; however, patients with LEP were less likely to have a portal account (adjusted OR, 0.89; 95% CI, 0.83 to 0.96). Among LEP subgroups, Spanish speakers were significantly less likely to engage with the patient portal compared with English speakers (estimated difference in monthly rate: OR, 0.43; 95% CI, 0.24 to 0.77). CONCLUSION We found that patients with LEP had lower rates of clinical trial engagement and odds of electronic patient portal enrollment. Interventions designed to overcome language and cultural barriers are essential to optimize the experience of patients with LEP.
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Affiliation(s)
- Mohana Roy
- Stanford University School of Medicine and Stanford Cancer Institute, Stanford, CA,Mohana Roy, MD, Division of Hematology and Oncology, Stanford University School of Medicine, 875 Blake Wilbur Rd, Stanford, CA 94305; e-mail:
| | - Natasha Purington
- Quantitative Sciences Unit, Stanford University School of Medicine, Stanford, CA
| | - Mina Liu
- Research Informatics Center, Stanford University School of Medicine, Stanford, CA
| | - Douglas W. Blayney
- Stanford University School of Medicine and Stanford Cancer Institute, Stanford, CA
| | - Allison W. Kurian
- Stanford University School of Medicine and Stanford Cancer Institute, Stanford, CA,Departments of Medicine and of Epidemiology and Population Health, Stanford University, Stanford, CA
| | - Lidia Schapira
- Stanford University School of Medicine and Stanford Cancer Institute, Stanford, CA
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Factors influencing utilization of cancer rehabilitation services among older breast cancer survivors in the USA: a qualitative study. Support Care Cancer 2021; 30:2397-2405. [PMID: 34766199 DOI: 10.1007/s00520-021-06678-9] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/27/2021] [Accepted: 11/02/2021] [Indexed: 10/19/2022]
Abstract
PURPOSE Many older breast cancer survivors experience long-term disability due to cancer and cancer-related treatments. However, less than 20% of older breast cancer survivors utilize cancer rehabilitation services to address cancer-related disability. Further understanding of survivor experiences may reveal strategies to improve uptake cancer rehabilitation services in the USA. METHODS Older breast cancer survivors were recruited from university-based registries, previous breast cancer research studies at our institution, community support groups, and geriatric oncology clinics. Participants completed a brief online survey to capture demographic and clinical characteristics. Semi-structured telephone-based interviews were recorded, transcribed, and thematically analyzed. Interviews facilitated conversation about access to rehabilitation and indications for cancer rehabilitation. RESULTS Participants (n = 14) were, on average, 71 years old, primarily White, and an average of 36.5 months post-diagnosis. Five participants had formally received rehabilitation for a cancer-related concern. Participants described seven factors that influenced utilization of cancer rehabilitation services: (1) emerging awareness of disability; (2) coping styles; (3) comparison of cancer experience with others; (4) provider interaction; (5) perceptions of cancer diagnosis; (6) social support; and (7) cost of rehabilitation. CONCLUSIONS Older breast cancer survivors consider multiple factors when determining utilization of cancer rehabilitation services. Development of shared decision-making tools addressing the seven described factors may enhance communication and referral to cancer rehabilitation services. Intervention research should adopt frameworks that enhance healthcare accessibility to improve relevance of intervention content and delivery features for older breast cancer survivors.
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Ankolekar A, Dahl Steffensen K, Olling K, Dekker A, Wee L, Roumen C, Hasannejadasl H, Fijten R. Practitioners' views on shared decision-making implementation: A qualitative study. PLoS One 2021; 16:e0259844. [PMID: 34762683 PMCID: PMC8584754 DOI: 10.1371/journal.pone.0259844] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/13/2021] [Accepted: 10/28/2021] [Indexed: 12/15/2022] Open
Abstract
INTRODUCTION Shared decision-making (SDM) refers to the collaboration between patients and their healthcare providers to make clinical decisions based on evidence and patient preferences, often supported by patient decision aids (PDAs). This study explored practitioner experiences of SDM in a context where SDM has been successfully implemented. Specifically, we focused on practitioners' perceptions of SDM as a paradigm, factors influencing implementation success, and outcomes. METHODS We used a qualitative approach to examine the experiences and perceptions of 10 Danish practitioners at a cancer hospital experienced in SDM implementation. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data was analyzed through thematic analysis. RESULTS Prior to SDM implementation, participants had a range of attitudes from skeptical to receptive. Those with more direct long-term contact with patients (such as nurses) were more positive about the need for SDM. We identified four main factors that influenced SDM implementation success: raising awareness of SDM behaviors among clinicians through concrete measurements, supporting the formation of new habits through reinforcement mechanisms, increasing the flexibility of PDA delivery, and strong leadership. According to our participants, these factors were instrumental in overcoming initial skepticism and solidifying new SDM behaviors. Improvements to the clinical process were reported. Sustaining and transferring the knowledge gained to other contexts will require adapting measurement tools. CONCLUSIONS Applying SDM in clinical practice represents a major shift in mindset for clinicians. Designing SDM initiatives with an understanding of the underlying behavioral mechanisms may increase the probability of successful and sustained implementation.
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Affiliation(s)
- Anshu Ankolekar
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
| | - Karina Dahl Steffensen
- Center for Shared Decision Making, Lillebaelt Hospital–University Hospital of Southern Denmark, Vejle, Denmark
- Institute of Regional Health Research, University of Southern Denmark, Odense, Denmark
- Department of Oncology, Lillebaelt Hospital–University Hospital of Southern Denmark, Vejle, Denmark
| | - Karina Olling
- Center for Shared Decision Making, Lillebaelt Hospital–University Hospital of Southern Denmark, Vejle, Denmark
| | - Andre Dekker
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
| | - Leonard Wee
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
| | - Cheryl Roumen
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
| | - Hajar Hasannejadasl
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
| | - Rianne Fijten
- Department of Radiation Oncology (MAASTRO), GROW School for Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands
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Too Much Cancer Care?: Nurses' Perspectives on the Unnecessary Use of Oncology Services. Cancer Nurs 2021; 44:E236-E243. [PMID: 32209859 DOI: 10.1097/ncc.0000000000000814] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
BACKGROUND "Unnecessary use of health services" refers to care that does not add value for patients and can lead to physical, emotional, and economical harm. High rates of overuse have been reported within oncology, and patients experience its consequences. OBJECTIVE The aim of this study was to explore perceptions and experiences of oncology nurses regarding unnecessary use of oncology services. METHODS In-depth, semistructured interviews were conducted with a convenience sample of 20 oncology nurses currently practicing in Israel. Interviews were recorded, transcribed, and analyzed thematically. RESULTS Themes included perceptions of unnecessary use of health services in cancer (causes and effects of unnecessary use, current and proposed solutions) and negative effects of unnecessary cancer care on patients, families, providers, and the system, including decreased quality of life, increased suffering, and emotional effects on patients and families. Causes were seen on provider, family, and patient levels, such as difficulty for providers to "give up," lack of registered nurses' authority, and family and patient demands. Multidisciplinary care provision, nurses' role, and the patient-provider relationship were seen as existing facilitators minimizing unnecessary use. Future improvement can be achieved by strengthening relationships, providing support to healthcare providers, and improving communication. CONCLUSIONS Nurses perceive unnecessary use of health services as a result of multiple, interlinked and complex causes, but few targeted interventions exist. Future research should explore quantifying unnecessary use to determine an accurate representation of the issue. IMPLICATIONS FOR PRACTICE Solutions should include engaging patients and families, involving nurses, and fostering multidisciplinary collaborative teamwork to positively affect care and treatment decision-making processes.
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Witteman HO, Maki KG, Vaisson G, Finderup J, Lewis KB, Dahl Steffensen K, Beaudoin C, Comeau S, Volk RJ. Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration. Med Decis Making 2021; 41:736-754. [PMID: 34148384 DOI: 10.1177/0272989x211014163] [Citation(s) in RCA: 95] [Impact Index Per Article: 23.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
BACKGROUND The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. OBJECTIVE To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. METHODS To provide further details about design and development methods, we summarized findings from a subgroup (n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles' authors to request their self-reports of UCD-11 items. RESULTS The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). CONCLUSIONS Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes.[Box: see text].
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Affiliation(s)
- Holly O Witteman
- Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, Quebec City, Canada.,VITAM Research Centre, Quebec City, Canada.,CHU de Québec Research Centre, Quebec City, Canada
| | - Kristin G Maki
- Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Gratianne Vaisson
- Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, Quebec City, Québec, Canada
| | - Jeanette Finderup
- Research Centre for Patient Involvement & Department of Renal Medicine, Aarhus University & Aarhus University Hospital, Aarhus, Denmark
| | - Krystina B Lewis
- School of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.,University of Ottawa Heart Institute, Ottawa, ON, Canada
| | - Karina Dahl Steffensen
- Center for Shared Decision Making/Department of Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark.,Institute of Regional Health Research, Faculty of Health Sciences, Vejle, Denmark
| | - Caroline Beaudoin
- Department of Family and Emergency Medicine, Laval University, Quebec, Canada
| | - Sandrine Comeau
- Department of Family and Emergency Medicine, Laval University, Quebec, Canada
| | - Robert J Volk
- Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
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Hong YR, Yadav S, Suk R, Khanijahani A, Erim D, Turner K. Patient-provider discussion about emotional and social needs, mental health outcomes, and benefit finding among U.S. Adults living with cancer. Cancer Med 2021; 10:3622-3634. [PMID: 33960716 PMCID: PMC8178502 DOI: 10.1002/cam4.3918] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/04/2021] [Revised: 03/30/2021] [Accepted: 04/02/2021] [Indexed: 12/22/2022] Open
Abstract
Background A discussion about patient's nonmedical needs during treatment is considered a crucial component of high‐quality patient–provider communication. We examined whether having a patient–provider discussion about cancer patients’ emotional and social needs is associated with their psychological well‐being. Methods Using the 2016–2017 Medical Expenditure Panel Survey‐Experiences with Cancer Survivorship Supplement (MEPS–ECSS) data, we identified the cancer survivors in the United States (US) who reported having a detailed discussion about emotional and social needs during cancer care. We used multivariable logistic regression to assess the association between having a patient–provider discussion and the patients’ psychological well‐being outcomes (depressive symptoms, severe psychological distress, and worrying about cancer recurrence/worsening condition) and benefit finding experience after a cancer diagnosis. Results Among 1433 respondents (equivalent to 13.8 million cancer survivors in the US), only 33.6% reported having a detailed patient–provider discussion about their emotional and social needs. Having a discussion was associated with 55% lower odds (odds ratio [OR], 0.45; 95% confidence interval [CI], 0.26–0.77) of having depressive symptoms and 97% higher odds (OR, 1.97; 95% CI, 1.46–2.66) of having benefit finding experience. There was no statistically significant association between patient–provider discussion and psychological distress or worrying about cancer recurrence/worsening. Conclusion Detailed patient–provider discussion about the cancer patients’ emotional and social needs was associated with a lower likelihood of depressive symptoms and a higher likelihood of experiencing benefit finding. These findings stress the importance of improving the patient–provider discussion about psychosocial needs in cancer survivorship.
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Affiliation(s)
- Young-Rock Hong
- Department of Health Services Research, Management and Policy, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA.,UF Health Cancer Center, Gainesville, FL, USA
| | - Sandhya Yadav
- Department of Health Services Research, Management and Policy, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
| | - Ryan Suk
- Center for Health Services Research, Department of Management, Policy and Community Health, The University of Texas Health Science Center School of Public Health, Houston, TX, USA
| | - Ahmad Khanijahani
- Rangos School of Health Sciences, Duquesne University, Pittsburgh, PA, USA
| | | | - Kea Turner
- Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA.,Department of Oncological Sciences, University of South Florida Morsani College of Medicine, Tampa, FL, USA
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Hansen DG, Trabjerg TB, Sisler JJ, Søndergaard J, Jensen LH. Cross-sectoral communication by bringing together patient with cancer, general practitioner and oncologist in a video-based consultation: a qualitative study of oncologists' and nurse specialists' perspectives. BMJ Open 2021; 11:e043038. [PMID: 33952540 PMCID: PMC8103367 DOI: 10.1136/bmjopen-2020-043038] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/24/2022] Open
Abstract
UNLABELLED Shared care models in the field of cancer aim to improve care coordination, role clarification and patient satisfaction. Cross-sectoral communication is pivotal. Involvement of patients may add to intended mechanisms.A randomised controlled trial 'The Partnership Study' tested the effect of bringing together patient, general practitioner (GP) and oncologist for a consultation conducted by video. PURPOSE As part of the process evaluation, this study aimed to explore experiences, attitudes and perspectives of the oncological department on sharing patient consultations with GPs using video. METHODS Four semistructured interviews with five oncologists and four nurse specialists were conducted in February 2020. We focused on the informants' experiences and reflections on the potential of future implementation of the concept 'inviting the GP for a shared consultation by video'. The analyses were based on an inductive, open-minded, hermeneutic phenomenological approach. RESULTS A total of six overall themes were identified: structuring consultation and communication, perceptions of GP involvement in cancer care, stressors, making a difference, alternative ways of cross-sector communication and needs for redesigning the model. The concept made sense and was deemed useful, but solving the many technical and organisational problems is pivotal. Case-specific tasks and relational issues were targeted by pragmatically rethinking protocol expectations and the usual way of communication and structuring patient encounters. Case selection was discussed as one way of maturing the concept. CONCLUSION This Danish study adds new insight into understanding different aspects of the process, causal mechanisms as well as the potential of future implementation of video-based tripartite encounters. Beyond solving the technical problems, case selection and organisational issues are important. Acknowledging the disruption of the usual workflow, the introduction of new phases of the usual encounter and the variety of patient-GP relationships to be embraced may help to better understand and comply with barriers and facilitators of communication and sharing. TRIAL REGISTRATION NUMBER NCT02716168.
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Affiliation(s)
- Dorte Gilså Hansen
- Research Unit for General Practice, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
- Center for Shared Decision Making, Lillebælt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
- Institute of Regional Health Research, University of Southern Denmark, Vejle, Denmark
| | - Theis Bitz Trabjerg
- Research Unit for General Practice, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | - Jeffrey James Sisler
- Department of Family Medicine, University of Manitoba Faculty of Health Sciences, Winnipeg, Manitoba, Canada
| | - Jens Søndergaard
- Research Unit for General Practice, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
| | - Lars Henrik Jensen
- Institute of Regional Health Research, University of Southern Denmark, Vejle, Denmark
- Department of Oncology, Lillebælt Hospital, University Hospital of Southern Denmark, Vejle, Denmark
- Danish Colorectal Cancer Center South, Center of Clinical Excellence, Lillebaelt Hospital, University Hospital of Southern Denmark, University of Southern Denmark, Vejle, Denmark
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Jull J, Sheppard AJ, Hizaka A, Barton G, Doering P, Dorschner D, Edgecombe N, Ellis M, Graham ID, Habash M, Jodouin G, Kilabuk L, Koonoo T, Roberts C. Experiences of Inuit in Canada who travel from remote settings for cancer care and impacts on decision making. BMC Health Serv Res 2021; 21:328. [PMID: 33845810 PMCID: PMC8042963 DOI: 10.1186/s12913-021-06303-9] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/05/2020] [Accepted: 03/22/2021] [Indexed: 11/21/2022] Open
Abstract
BACKGROUND Inuit experience the highest cancer mortality rates from lung cancer in the world with increasing rates of other cancers in addition to other significant health burdens. Inuit who live in remote areas must often travel thousands of kilometers to large urban centres in southern Canada and negotiate complex and sometimes unwelcoming health care systems. There is an urgent need to improve Inuit access to and use of health care. Our study objective was to understand the experiences of Inuit in Canada who travel from a remote to an urban setting for cancer care, and the impacts on their opportunities to participate in decisions during their journey to receive cancer care. METHODS We are an interdisciplinary team of Steering Committee and researcher partners ("the team") from Inuit-led and/or -specific organizations that span Nunavut and the Ontario cancer health systems. Guided by Inuit societal values, we used an integrated knowledge translation (KT) approach with qualitative methods. We conducted semi-structured interviews with Inuit participants and used process mapping and thematic analysis. RESULTS We mapped the journey to receive cancer care and related the findings of client (n = 8) and medical escort (n = 6) ("participant") interviews in four themes: 1) It is hard to take part in decisions about getting health care; 2) No one explains the decisions you will need to make; 3) There is a duty to make decisions that support family and community; 4) The lack of knowledge impacts opportunities to engage in decision making. Participants described themselves as directed, with little or no support, and seeking opportunities to collaborate with others on the journey to receive cancer care. CONCLUSIONS We describe the journey to receive cancer care as a "decision chain" which can be described as a series of events that lead to receiving cancer care. We identify points in the decision chain that could better prepare Inuit to participate in decisions related to their cancer care. We propose that there are opportunities to build further health care system capacity to support Inuit and enable their participation in decisions related to their cancer care while upholding and incorporating Inuit knowledge.
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Affiliation(s)
- Janet Jull
- School of Rehabilitation Therapy, Faculty of Health Sciences, 31 George Street, Louise D. Acton Building, Queen's University, Kingston, Ontario, Canada.
| | - Amanda J Sheppard
- Indigenous Cancer Care Unit, Ontario Health, 620 University Avenue, Toronto, Ontario, Canada
| | - Alex Hizaka
- Mamisarvik Healing Centre, Tungasuvvingat Inuit, 25 Rosemount Avenue, Ottawa, Ontario, Canada
| | - Gwen Barton
- The Ottawa Hospital, Indigenous Cancer Program, 501 Smyth Road, Ottawa, Ontario, Canada
| | - Paula Doering
- Bruyère Continuing Care, 60 Cambridge Street, North Ottawa, Ontario, Canada
| | - Danielle Dorschner
- Ottawa Health Services Network Inc., 1929 Russell Road, Ottawa, Ontario, Canada
| | | | - Megan Ellis
- The Ottawa Hospital, Indigenous Cancer Program, 501 Smyth Road, Ottawa, Ontario, Canada
| | - Ian D Graham
- Clinical Epidemiology Program, Ottawa Hospital Research Institute; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Ottawa, Ontario, Canada
| | - Mara Habash
- Indigenous Cancer Care Unit, Ontario Health, 620 University Avenue, Toronto, Ontario, Canada
| | - Gabrielle Jodouin
- Ottawa Health Services Network Inc., 1929 Russell Road, Ottawa, Ontario, Canada
| | - Lynn Kilabuk
- Larga Baffin, 2716 Richmond Road, Ottawa, Ontario, Canada
| | - Theresa Koonoo
- Department of Health, Government of Nunavut, P.O. Box 1000, Iqaluit, Nunavut, Canada
| | - Carolyn Roberts
- The Ottawa Hospital, Indigenous Cancer Program, 501 Smyth Road, Ottawa, Ontario, Canada
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De Rosa P, Jewell A. The potential use for patient reported outcome measures in people with pancreatic cancer, with a specific focus on older patients. EUROPEAN JOURNAL OF SURGICAL ONCOLOGY 2021; 47:495-502. [PMID: 32600894 DOI: 10.1016/j.ejso.2020.05.010] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/25/2020] [Revised: 05/05/2020] [Accepted: 05/10/2020] [Indexed: 12/27/2022]
Abstract
Pancreatic cancer is one of the most lethal malignancies and is characterised by high-unmet physical and psychological supportive care needs. Patient Reported Outcome Measures (PROMs) represent a patient centred approach to address the high unmet supportive care need and improve the quality of care. PROMs have the potential to inform patients about the quality of life and symptom trajectory for different treatment approaches so that they can fully participate in shared decisions about treatment. Embedding the collection of PROMs into routine practice alongside clinical alerts and directed symptom interventions is acceptable and feasible for people with pancreatic cancer and has the potential to reduce symptom burden. There is also limited information on survival, quality of life and the holistic impact of treatment for older pancreatic cancer patients, therefore, PROMs provide an opportunity to understand the impact of treatment on older patients and better inform shared treatment decision-making.
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Affiliation(s)
- Peter De Rosa
- Pancreatic Cancer UK, 4th Floor Westminster Tower, 3 Albert Embankment, London, SE1 7SP, UK.
| | - Anna Jewell
- Pancreatic Cancer UK, 4th Floor Westminster Tower, 3 Albert Embankment, London, SE1 7SP, UK
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Fergie J, Howard A, Huang L, Srivastava A. Implementation Experience With Meningococcal Serogroup B Vaccines in the United States: Impact of a Nonroutine Recommendation. Pediatr Infect Dis J 2021; 40:269-275. [PMID: 33565815 DOI: 10.1097/inf.0000000000003033] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
BACKGROUND Meningococcal serogroup B (MenB) is the leading cause of invasive meningococcal disease among US adolescents and young adults, accounting for 62% of cases in 16-23-year-olds in 2018. Since 2015, the Advisory Committee on Immunization Practices (ACIP) has recommended vaccination of healthy adolescents against MenB based on shared clinical decision-making (previously called "Category B" or individual clinical decision-making). However, MenB vaccine coverage and series completion rates remain low. Herein we examine implementation experience of adolescent MenB vaccination in the United States under this nonroutine ACIP recommendation. METHODS PubMed was searched for English-language articles published after 2015 examining MenB vaccination implementation in the United States. Studies reporting MenB vaccination awareness, coverage, knowledge of recommendations and implementation barriers or access disparities were included. RESULTS Identified studies provided evidence that ACIP's MenB vaccination recommendation is poorly understood and prone to misinterpretation by US healthcare providers. Parental awareness of MenB vaccines is low, and racial and socioeconomic disparities exist regarding vaccine receipt. Parents rely on providers to learn about MenB disease risk and benefits of vaccination, with provider recommendations carrying substantial weight in vaccination decisions. CONCLUSIONS Five years of evidence regarding the MenB vaccination implementation experience suggest that the nonstandard recommendation for MenB vaccines is partly responsible for low vaccine coverage. Further, inconsistent implementation of ACIP recommendations could be limiting access to MenB vaccines. Providers need additional support and guidance to implement the shared clinical decision-making recommendation, in turn ensuring equitable access for vaccine-eligible adolescents to enable comprehensive protection against meningococcal disease.
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Affiliation(s)
- Jaime Fergie
- From the Department of Pediatric Infectious Diseases, Driscoll Children's Hospital, Corpus Christi, Texas
| | - Ashley Howard
- Yale School of Medicine, Department of Pediatrics, New Haven, Connecticut
| | - Liping Huang
- Medical Development & Scientific Clinical Affairs, Pfizer Vaccines, Collegeville, Pennsylvania
| | - Amit Srivastava
- Medical Development & Scientific Clinical Affairs, Pfizer Vaccines, Collegeville, Pennsylvania
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O'Neill SC, Vadaparampil ST, Street RL, Moore TF, Isaacs C, Han HS, Augusto B, Garcia J, Lopez K, Brilleman M, Jayasekera J, Eggly S. Characterizing patient-oncologist communication in genomic tumor testing: The 21-gene recurrence score as an exemplar. PATIENT EDUCATION AND COUNSELING 2021; 104:250-256. [PMID: 32900604 PMCID: PMC7854933 DOI: 10.1016/j.pec.2020.08.037] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/31/2020] [Revised: 08/19/2020] [Accepted: 08/26/2020] [Indexed: 05/30/2023]
Abstract
OBJECTIVE Women with early-stage, ER + breast cancer are recommend to receive genomic profiling tests, such as the 21-gene Recurrence Score (RS) test, to guide treatment decisions. We examined test- and treatment-related information discussed and the associations between RS categories and aspects of communication during patient-oncologist clinical encounters. METHODS As part of a larger trial, clinical encounters (N = 46) were audiorecorded and coded for 1) RS- and treatment-related information, 2) shared decision making, 3) patient active participation, and 4) oncologist patient-centered communication. We examined differences by RS category using mixed models, adjusting for nesting within oncologist. RESULTS Patients with a high RS were more likely to receive a chemotherapy recommendation (p < .01), hear about the risks/side effects of chemotherapy (p < .01), and offer their preferences (p = .02) than those with intermediate or low RS. Elements of shared decision making increased with RS. Oncologist patient-centered communication (M = 4.09/5, SD = .25) and patient active participation (M = 3.5/4, SD = 1.0) were high across RS. CONCLUSION Findings suggest that disease severity, rather than clinical uncertainty, impact treatment recommendations and shared decision making. PRACTICE IMPLICATIONS Oncologists adjust test- and treatment-related information and shared decision making by disease severity. This information provides a framework to inform decision making in complex cancer and genomics settings.
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Affiliation(s)
| | | | | | - Tanina Foster Moore
- Department of Oncology, Wayne State University/Karmanos Cancer Institute, Detroit, MI, USA
| | - Claudine Isaacs
- Department of Oncology, Georgetown University, Washintgon DC, USA
| | - Hyo S Han
- Department of Health Outcomes and Behavior, Moffitt Cancer Center, USA
| | - Bianca Augusto
- Department of Health Outcomes and Behavior, Moffitt Cancer Center, USA
| | - Jennifer Garcia
- Department of Health Outcomes and Behavior, Moffitt Cancer Center, USA
| | - Katherine Lopez
- Department of Oncology, Georgetown University, Washintgon DC, USA
| | | | | | - Susan Eggly
- Department of Oncology, Wayne State University/Karmanos Cancer Institute, Detroit, MI, USA
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Sorensen von Essen H, Piil K, Dahl Steffensen K, Rom Poulsen F. Shared decision making in high-grade glioma patients-a systematic review. Neurooncol Pract 2020; 7:589-598. [PMID: 33304599 PMCID: PMC7716176 DOI: 10.1093/nop/npaa042] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/16/2022] Open
Abstract
Background Shared decision making (SDM) has proven to be a valuable approach in different patient populations when treatment decisions are called for. Along the disease trajectory of high-grade glioma (HGG), patients are presented with a series of treatment decisions. At the same time, HGG patients often experience cognitive deterioration and reduced decision-making capacity. This study aimed to review the current knowledge about shared decision making from the perspective of the HGG patient. Methods Systematic searches were performed in MEDLINE, CINAHL, PsycINFO, and EMBASE. Studies were reviewed against the inclusion criteria and assessed for methodological quality. Descriptive data from the included studies were extracted and a narrative synthesis of the findings was performed. Results The searches resulted in 5051 original records. Four studies involving 178 HGG patients fulfilled the inclusion criteria. The narrative synthesis revealed that most HGG patients in the included studies appreciated an SDM approach and that sufficient information and involvement increased patients’ emotional well-being. The use of a patient decision aid showed the potential to increase knowledge, decrease uncertainty, and affect the treatment decision making of HGG patients. Conclusion The results indicate that many HGG patients prefer an SDM approach and that SDM can lead patients toward improved emotional well-being. The evidence is weak, however, and firm conclusions and practice guidelines concerning SDM in HGG patients cannot be made. Future research is warranted to improve decision support for HGG patients.
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Affiliation(s)
- Helle Sorensen von Essen
- Department of Neurosurgery, Odense University Hospital, Odense C, Denmark.,Department of Clinical Research and BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark, Odense C, Denmark
| | - Karin Piil
- Department of Oncology 5074, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.,Department of Public Health, Aarhus University, Aarhus C, Denmark
| | - Karina Dahl Steffensen
- Department of Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, Denmark.,Center for Shared Decision Making, Region of Southern Denmark, Vejle, Denmark.,Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense C, Denmark
| | - Frantz Rom Poulsen
- Department of Neurosurgery, Odense University Hospital, Odense C, Denmark.,Department of Clinical Research and BRIDGE (Brain Research-Interdisciplinary Guided Excellence), University of Southern Denmark, Odense C, Denmark
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Gertsen EC, Brenkman HJF, Brosens LAA, Luijten JCHBM, Mohammad NH, Verhoeven RHA, van Hillegersberg R, Ruurda JP. Refraining from resection in patients with potentially curable gastric carcinoma. Eur J Surg Oncol 2020; 47:1062-1068. [PMID: 33129631 DOI: 10.1016/j.ejso.2020.10.025] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2020] [Revised: 09/05/2020] [Accepted: 10/21/2020] [Indexed: 10/23/2022] Open
Abstract
BACKGROUND Surgical resection is the cornerstone of curative treatment for gastric cancer. The aim of this study was to evaluate reasons for and patient- and tumor characteristics that are associated with refraining from surgical resection in patients with potentially curable gastric cancer. MATERIALS AND METHODS Between 2015 and 2017, all patients with potentially curable gastric adenocarcinoma (cT1-4a-x, cN0-3-x, cM0) were included from the Netherlands Cancer Registry (NCR). Patients were divided into a resection (RG) and a no-resection group (nRG). Reasons for not undergoing resection as registered by the NCR were evaluated. Using multivariable logistic regression analyses, patient and tumor characteristics associated with refraining from resection were assessed. RESULTS Of the 1679 analyzed patients with potentially curable disease, 1127 patients (67%) underwent resection, and 552 patients (33%) did not. Most common registered reasons for refraining from surgery were patient refusal (25%), low performance status (23%), comorbidity and extent of disease (both 10%). Factors associated with not undergoing resection were: age ≥80 years (OR 4.77, [95%CI 2.27-10.06], p < 0.001), low Social-Economic-Status (SES) (OR 2.68 [95%CI 1.31-5.46], p = 0.007), WHO performance status 3-4 (OR 10.48 [95%CI 2.41-45.73], p = 0.002) with several accompanying comorbidities, unclassified Lauren classification (OR 3.93 [95%CI 1.61-9.56], p = 0.003) and overlapping/diffuse tumors (OR 3.51, [95%CI 1.54-8.05], p = 0.003). CONCLUSION A third of patients with potentially curable gastric cancer did not undergo resection. Most frequent registered reasons for refraining from surgery were patient refusal, performance status, comorbidity and extent of disease. Additionally, multivariable analyses identified higher age, lower SES, and poor tumor characteristics as associated factors.
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Affiliation(s)
- Emma C Gertsen
- Department of Surgery, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
| | - Hylke J F Brenkman
- Department of Surgery, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands
| | - L A A Brosens
- Department of Pathology, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands
| | - Josianne C H B M Luijten
- Department of Research & Development, Netherlands Comprehensive Cancer Organization (IKNL), Utrecht, the Netherlands
| | - Nadia Haj Mohammad
- Department of Medical Oncology, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands
| | - Rob H A Verhoeven
- Department of Research & Development, Netherlands Comprehensive Cancer Organization (IKNL), Utrecht, the Netherlands; Department of Surgery, Radboud University Medical Center, Nijmegen, the Netherlands
| | - Richard van Hillegersberg
- Department of Surgery, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands
| | - Jelle P Ruurda
- Department of Surgery, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
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Danner M, Geiger F, Wehkamp K, Rueffer JU, Kuch C, Sundmacher L, Skjelbakken T, Rummer A, Novelli A, Debrouwere M, Scheibler F. Making shared decision-making (SDM) a reality: protocol of a large-scale long-term SDM implementation programme at a Northern German University Hospital. BMJ Open 2020; 10:e037575. [PMID: 33039998 PMCID: PMC7549440 DOI: 10.1136/bmjopen-2020-037575] [Citation(s) in RCA: 30] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/18/2022] Open
Abstract
INTRODUCTION Shared decision-making (SDM) is not yet widely used when making decisions in German hospitals. Making SDM a reality is a complex task. It involves training healthcare professionals in SDM communication and enabling patients to actively participate in communication, in addition to providing sound, easy to understand information on treatment alternatives in the form of evidence-based patient decision aids (EbPDAs). This project funded by the German Innovation Fund aims at designing, implementing and evaluating a multicomponent, large-scale and integrative SDM programme-called SHARE TO CARE (S2C)-at all clinical departments of a University Hospital Campus in Northern Germany within a 4-year time period. METHODS AND ANALYSIS S2C tackles the aforementioned components of SDM: (1) training physicians in SDM communication, (2) activating and empowering patients, (3) developing EbPDAs in the most common/relevant diseases and (4) training other healthcare professionals in SDM coaching. S2C is designed together with patients and providers. The physicians' training programme entails an online and an in situ training module. The decision coach training is based on a similar but less comprehensive approach. The development of online EbPDAs follows the International Patient Decision Aid Standards and includes written, graphical and video-based information. Validated outcomes of SDM implementation are measured in a preintervention and postintervention evaluation design. Process evaluation accompanies programme implementation. Health economic impact of the intervention is investigated using a propensity-score-matched approach based on potentially preference-sensitive hospital decisions. ETHICS AND DISSEMINATION Ethics committee review approval has been obtained from Medical Ethics Committee of the Medical Faculty of the Christian-Albrechts-University Kiel. Project information and results will be disseminated at conferences, on project-hosted websites at University Hospital Medical Center Schleswig Holstein and by S2C as well as in peer-reviewed and professional journals.
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Affiliation(s)
- Marion Danner
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
| | - Friedemann Geiger
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
- SHARE TO CARE, Patientenzentrierte Kommunikation GmbH, Cologne, Germany
| | - Kai Wehkamp
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
- SHARE TO CARE, Patientenzentrierte Kommunikation GmbH, Cologne, Germany
| | - Jens Ulrich Rueffer
- SHARE TO CARE, Patientenzentrierte Kommunikation GmbH, Cologne, Germany
- TAKEPART Media & Sciences GmbH, Cologne, Germany
| | - Christine Kuch
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
| | | | - Tove Skjelbakken
- Universitetet i Tromso Helsevitenskapelige fakultet Helsefak, Tromso, Norway
| | - Anne Rummer
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
| | - Anna Novelli
- Ludwig-Maximilians-Universitat Munchen, Munchen, Germany
| | - Marie Debrouwere
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
| | - Fueloep Scheibler
- SHARE TO CARE Team, University Medical Center Schleswig-Holstein Campus Kiel, Kiel, Germany
- SHARE TO CARE, Patientenzentrierte Kommunikation GmbH, Cologne, Germany
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Louison RR, Baloch MY, Ghosh C, Lee JE. Holistic, patient-centered symptom management for metastatic cancer: A comparison pilot study. ADVANCES IN INTEGRATIVE MEDICINE 2020. [DOI: 10.1016/j.aimed.2020.02.001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
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Barnes DC, Mesmer-Magnus J, Scribner LL, Krallman A, Guidice RM. Customer delight during a crisis: understanding delight through the lens of transformative service research. JOURNAL OF SERVICE MANAGEMENT 2020. [DOI: 10.1108/josm-05-2020-0146] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
PurposeThe unprecedented dynamics of the COVID-19 pandemic has forced firms to re-envision the customer experience and find new ways to ensure positive service encounters. This context has underscored the reality that drivers of customer delight in a “traditional” context are not the same in a crisis context. While research has tended to identify hedonic need fulfillment as key to customer well-being and, ultimately, to invoking customer delight, the majority of studies were conducted in inherently positive contexts, which may limit generalizability to more challenging contexts. Through the combined lens of transformative service research (TSR) and psychological theory on hedonic and eudaimonic human needs, we evaluate the extent to which need fulfillment is the root of customer well-being and that meeting well-being needs ultimately promotes delight. We argue that in crisis contexts, the salience of needs shifts from hedonic to eudaimonic and the extent to which service experiences fulfill eudaimonic needs determines the experience and meaning of delight.Design/methodology/approachUtilizing the critical incident technique, this research surveyed 240 respondents who were asked to explain in detail a time they experienced customer delight during the COVID-19 pandemic. We analyzed their responses according to whether these incidents reflected the salience of hedonic versus eudaimonic need fulfillment.FindingsThe results support the notion that the salience of eudaimonic needs become more pronounced during times of crisis and that service providers are more likely to elicit perceptions of delight when they leverage meeting eudaimonic needs over the hedonic needs that are typically emphasized in traditional service encounters.Originality/valueWe discuss the implications of these findings for integrating the TSR and customer delight literatures to better understand how service experiences that meet salient needs produce customer well-being and delight. Ultimately, we find customer delight can benefit well-being across individual, collective and societal levels.
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Investigating whether shared video-based consultations with patients, oncologists, and GPs can benefit patient-centred cancer care: a qualitative study. BJGP Open 2020; 4:bjgpopen20X101023. [PMID: 32238390 PMCID: PMC7330209 DOI: 10.3399/bjgpopen20x101023] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/20/2019] [Accepted: 09/29/2019] [Indexed: 12/12/2022] Open
Abstract
Background Guidelines have proposed that GPs should have a central role as coordinators of care and support patients with cancer during all stages of treatment, follow-up, and rehabilitation. Multidisciplinary video consultation involving the patient with cancer, the oncologist, and the GP may help to define roles and tasks, and this resulting clarity may enable greater support for patients with cancer. Aim To explore the consultation structure, content, and task clarification when a GP and an oncologist are attending a video consultation with a patient with cancer. Design & setting A qualitative study took place in the Region of Southern Denmark to investigate multidisciplinary video consultations, based on thematic analysis. Method Recordings of 12 video consultations were analysed using the framework method. A combined deductive and inductive approach was undertaken. The deductive themes were selected based on a consultation guide given to the doctors before the consultations. Results The study identified 15 themes, which were grouped into the following three categories: the implications of sharing a consultation; consultation structure; and health concerns. Conclusion Multidisciplinary video-based consultations with a patient and two health professionals succeeded in having a patient-centred communication style. In clarifying tasks between the GP and oncologist to support the patient, work-related issues and professional support for psychosocial challenges were always a task for the GP. Dissemination of this first-line evidence may improve acceptability among medical specialists and help assist GPs in supporting patients with cancer. However, focus on the involvement of relatives should be emphasised.
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