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Roganovic J. Late effects of the treatment of childhood cancer. World J Clin Cases 2025; 13:98000. [PMID: 40051796 PMCID: PMC11612689 DOI: 10.12998/wjcc.v13.i7.98000] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/14/2024] [Revised: 10/22/2024] [Accepted: 11/14/2024] [Indexed: 11/25/2024] Open
Abstract
Excellent progress has been made in the last few decades in the cure rates of pediatric malignancies, with more than 80% of children with cancer who have access to contemporary treatment being cured. However, the therapies responsible for this survival can also produce adverse physical and psychological long-term outcomes, referred to as late effects, which appear months to years after the completion of cancer treatment. Research has shown that 60% to 90% of childhood cancer survivors (CCSs) develop one or more chronic health conditions, and 20% to 80% of survivors experience severe or life-threatening complications during adulthood. Therefore, understanding the late side effects of such treatments is important to improve the health and quality of life of the growing population of CCSs.
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Affiliation(s)
- Jelena Roganovic
- Department of Pediatric Oncology and Hematology, Children's Hospital Zagreb, Zagreb 10000, Croatia
- Faculty of Biotechnology and Drug Development, University of Rijeka, Rijeka 51000, Croatia
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Aleshchenko E, Langer T, Calaminus G, Gebauer J, Swart E, Baust K. Organizing long-term follow-up care for pediatric cancer survivors: a socio-ecological approach. Front Public Health 2025; 13:1524310. [PMID: 40098799 PMCID: PMC11911165 DOI: 10.3389/fpubh.2025.1524310] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/07/2024] [Accepted: 02/17/2025] [Indexed: 03/19/2025] Open
Abstract
This study examines the organization of long-term follow-up care for pediatric cancer survivors through the lens of Bronfenbrenners' Ecological Systems Theory (EST). Using focus group discussions with survivors and healthcare professionals across Germany, we aimed to identify challenges and facilitators in care provision. Data were gathered during four focus groups, each consisting of 5-9 participants. A multimethods approach was used, employing both inductive and deductive thematic analysis. Results indicated key challenges such as fragmented care during transitions and insufficient offer of psychological support. The application of EST revealed the importance of coordinating care across multiple system levels: microsystem (direct care), mesosystem (coordination between care settings), exosystem (healthcare policies), and macrosystem (cultural attitudes). The study proposes strategies to improve care, such as implementing case managers and introducing culturally sensible long-term follow-up protocols. These findings highlight the complexity of survivorship care and the need for a more integrated approach to meet the evolving needs of survivors after childhood and adolescent cancer.
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Affiliation(s)
- Ekaterina Aleshchenko
- Faculty of Medicine, Institute of Social Medicine and Health Systems Research, Otto von Guericke University, Magdeburg, Germany
| | | | - Gabriele Calaminus
- Department of Pediatric Hematology and Oncology, University Hospital Bonn, Bonn, Germany
| | - Judith Gebauer
- University Hospital of Schleswig-Holstein, Lübeck, Germany
| | - Enno Swart
- Faculty of Medicine, Institute of Social Medicine and Health Systems Research, Otto von Guericke University, Magdeburg, Germany
| | - Katja Baust
- Department of Pediatric Hematology and Oncology, University Hospital Bonn, Bonn, Germany
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Stamer T, Traulsen P, Rieken J, Schmahl T, Menrath I, Steinhäuser J. Determinants of the implementation of eHealth-based long-term follow-up care for young cancer survivors: a qualitative study. BMC Cancer 2024; 24:1159. [PMID: 39294671 PMCID: PMC11411906 DOI: 10.1186/s12885-024-12910-6] [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: 05/22/2024] [Accepted: 09/06/2024] [Indexed: 09/21/2024] Open
Abstract
BACKGROUND eHealth may help closing gaps in the long-term follow-up care of former young age cancer patients. While its introduction to medical aftercare appears promising, it also faces obstacles in the course of its implementation. This study explored what prospective eHealth applications have to achieve and what facilitating and hindering factors are associated with the implementation of them. METHODS A qualitative, explorative-descriptive design involving semi-structured interviews was used in this study. General practitioners (GPs) from urban and rural areas as well as former cancer patients were recruited and interviewed. The interview guide focused on expectations of telemedical care services for the patient group of children and adolescents as well as potential facilitating and hindering factors of the implementation of telemedical care services for former cancer patients. Interviews were recorded, transcribed and analyzed on the basis of qualitative content analysis as described by Kuckartz. RESULTS Empiric saturation was reached after 25 interviews, respectively. The age of the physicians surveyed at the time of the interviews ranged from 27 to 71 years, with an average of 42 years. The former patients ranged in age from 21 to 43 at the time of participation, with an average age of 34. The age at diagnosis ranged from 3 to 31 years. eHealth services were considered an effective way to maintain continuity of care and improve the health literacy of cancer survivors. Cooperation with health insurance companies and gamification-elements were regarded as beneficial for the introduction of eHealth structures. Poor interface compatibility, insufficient network coverage and lack of digital literacy were valued as potential barriers. CONCLUSIONS If properly introduced, eHealth shows the potential to provide stakeholders with tools that increase their self-efficacy and ability to act. As the technology continues to advance, our data provides application-oriented factors for tailored implementation strategies to bring eHealth into the field.
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Affiliation(s)
- Tjorven Stamer
- Institute of Family Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany.
| | - Pia Traulsen
- Institute of Family Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany
| | - Johannes Rieken
- Institute of Family Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany
| | - Teresa Schmahl
- Institute of Family Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany
| | - Ingo Menrath
- Clinic of Pediatric and Adolescent Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany
| | - Jost Steinhäuser
- Institute of Family Medicine, UKSH Luebeck, Ratzeburger Allee 160, 23562, Luebeck, Germany
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Schmidt H, Baust K, Calaminus G, Hohls L, Tetzner K, Griech N, Haugke H, Baltus H, Elsner S, Katalinic A, Becker H, Cytera C, Gebauer J, Kock-Schoppenhauer AK, Neumann A, Denzer C, Schündeln MM, Faber J, Sattler C, Frühwald MC, Borgmann-Staudt A, Barnbrock A, Metzler M, Escherich G, König IR, Menrath I, Langer T. Effectiveness of structured, multidisciplinary long-term care for pediatric cancer survivors: protocol of the multicenter, randomized-controlled AELKI study. Trials 2024; 25:597. [PMID: 39245714 PMCID: PMC11382442 DOI: 10.1186/s13063-024-08377-2] [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: 03/09/2024] [Accepted: 08/06/2024] [Indexed: 09/10/2024] Open
Abstract
BACKGROUND In Germany, around 2.250 children and adolescents are diagnosed with cancer each year. Despite generally positive long-term survival rates, many patients must cope with late effects of the disease and its treatment. This highlights the need for a well-structured, long-term approach addressing both physical and mental health issues. Currently, the German healthcare system lacks such comprehensive structures. Our study aims to evaluate the effectiveness of a structured, multidisciplinary long-term approach compared to conventional "treatment as usual" (TAU). METHODS A prospective, multicenter study with ten pediatric university clinics in Germany will be conducted. The cluster-randomization takes place at the clinic level. Children and adolescents who completed their cancer treatment at least five years ago and their parents will be eligible to participate. While the control group (CG) receives TAU, the intervention group (IG) participates in a structured program. This program includes risk-based medical treatment and psychosocial interventions tailored to each patient's individual needs within a two-month timeframe. The primary outcome is the improvement of self-efficacy. Secondary outcomes are satisfaction with health care, improvement of health-related quality of life (HRQoL), reduction of mental health problems, and improvement of transition readiness. DISCUSSION This approach has the potential to optimize the health care for individuals who survived cancer during childhood or adolescence. It addresses the challenges of overuse, underuse, and misuse of health care resources. By considering both medical and psychosocial factors and promoting increased self-efficacy, independent from parental involvement, it may facilitate a smoother transition to adult medicine and enhance adherence to lifelong aftercare. If proven successful, this approach will contribute to the integration of multidisciplinary strategies into standard healthcare practice. TRIAL REGISTRATION German Clinical Trials Register DRKS00029269. Registered on December 23, 2022.
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Affiliation(s)
- Hannah Schmidt
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany.
| | - Katja Baust
- Center for Pediatrics, Bonn University Hospital, Bonn, Germany
| | | | - Lisa Hohls
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany
| | | | - Nicole Griech
- Center for Pediatrics, Bonn University Hospital, Bonn, Germany
| | - Henrike Haugke
- Center for Pediatrics, Bonn University Hospital, Bonn, Germany
| | - Hannah Baltus
- Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany
| | - Susanne Elsner
- Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany
| | - Alexander Katalinic
- Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany
| | - Hera Becker
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany
| | - Chirine Cytera
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany
| | - Judith Gebauer
- Department of Internal Medicine 1, University Hospital Schleswig-Holstein, Lübeck, Germany
| | | | - Anke Neumann
- IT Center for Clinical Research, University of Lübeck, Lübeck, Germany
| | - Christian Denzer
- Department of Pediatrics and Adolescent Medicine, Section of Pediatric Endocrinology and Diabetology Hormone Center for Children and Adolescents, Ulm University Hospital, Ulm, Germany
| | - Michael M Schündeln
- Division of Pediatric Hematology and Oncology, Department of Pediatrics III, University Hospital Essen, University of Duisburg-Essen, Duisburg, Germany
| | - Jörg Faber
- Center for Pediatric and Adolescent Medicine, University Medical Center of Johannes Gutenberg University Mainz, Mainz, Germany
| | - Conny Sattler
- Clinic for Pediatric and Adolescent Medicine, University Medical Center Schleswig-Holstein, Campus Kiel, Kiel, Germany
| | - Michael C Frühwald
- Pediatrics and Adolescent Medicine, University Medical Center Augsburg, Swabian Children's Cancer Center, Augsburg, Germany
| | - Anja Borgmann-Staudt
- Department of Pediatrics With Focus On Oncology/Hematology, Charité Medical Center Berlin, Berlin, Germany
| | - Anke Barnbrock
- Department of Pediatrics, Division of Hematology, Oncology and Hemostaseology, Goethe University, Frankfurt, Frankfurt/Main, Germany
| | - Markus Metzler
- Clinic for Pediatrics and Adolescent Medicine, University Hospital Erlangen, Erlangen, Germany
| | - Gabriele Escherich
- Department of Pediatric Hematology and Oncology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
| | - Inke R König
- Institute of Medical Biometry and Statistics, University of Lübeck, Lübeck, Germany
| | - Ingo Menrath
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany
| | - Thorsten Langer
- Clinic for Pediatric and Adolescent Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany
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Cacciotti C, Chua IS, Cuadra J, Ullrich NJ, Cooney TM. Pediatric central nervous system tumor survivor and caregiver experiences with multidisciplinary telehealth. J Neurooncol 2023; 162:191-198. [PMID: 36890398 PMCID: PMC9994776 DOI: 10.1007/s11060-023-04281-y] [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: 09/27/2022] [Accepted: 02/25/2023] [Indexed: 03/10/2023]
Abstract
PURPOSE Telehealth use to facilitate cancer survivorship care is accelerating; however, patient satisfaction and barriers to facilitation have not been studied amongst pediatric central nervous system (CNS) tumor survivors. We assessed the telehealth experiences of survivors and caregivers in the Pediatric Neuro-Oncology Outcomes Clinic at Dana-Farber/ Boston Children's Hospital. METHODS Cross-sectional study of completed surveys among patients and caregivers with ≥ 1 telehealth multidisciplinary survivorship appointment from January 2021 through March 2022. RESULTS Thirty-three adult survivors and 41 caregivers participated. The majority agreed or strongly agreed that telehealth visits started on time [65/67 (97%)], scheduling was convenient [59/61 (97%)], clinician's explanations were easy-to-understand [59/61 (97%)], listened carefully/addressed concerns [56/60 (93%)], and spent enough time with them [56/59 (95%)]. However, only 58% (n = 35/60) of respondents agreed or strongly agreed they would like to continue with telehealth and 48% (n = 32/67) agreed telehealth was as effective as in person office visits. Adult survivors were more likely than caregivers to prefer office visits for personal connection [23/32 (72%) vs. 18/39 (46%), p = 0.027]. CONCLUSION Offering telehealth multi-disciplinary services may provide more efficient and accessible care for a subset of pediatric CNS tumor survivors. Despite some advantages, patients and caregivers were divided on whether they would like to continue with telehealth and whether telehealth was as effective as office visits. To improve survivor and caregiver satisfaction, initiatives to refine patient selection as well as enhance personal communication through telehealth systems should be undertaken.
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Affiliation(s)
- Chantel Cacciotti
- Dana-Farber / Boston Children's Cancer and Blood Disorder Center, Boston, MA, USA.
- Division of Pediatric Hematology/Oncology, Western University, 800 Commissioners Road East, Rm B1-114, London, Ontario N6A 5W9, Canada.
| | - Isaac S Chua
- Brigham and Women's Hospital, Division of General Internal Medicine and Primary Care, Boston, MA, USA
- Division of Palliative Care, Dana-Farber Cancer Center, Boston, MA, USA
| | - Jennifer Cuadra
- Dana-Farber / Boston Children's Cancer and Blood Disorder Center, Boston, MA, USA
| | - Nicole J Ullrich
- Dana-Farber / Boston Children's Cancer and Blood Disorder Center, Boston, MA, USA
- Department of Neurology, Boston Children's Hospital, Boston, MA, USA
| | - Tabitha M Cooney
- Dana-Farber / Boston Children's Cancer and Blood Disorder Center, Boston, MA, USA
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Pletschko T, Krottendorfer K, Schlifelner J, Schwarzinger A, Fohn-Erhold V, Weiler-Wichtl L, Kienesberger A, Leiss U. A Psychosocial Support Program for Young Adult Childhood Cancer Survivors in Austria: a Qualitative Evaluation Study. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2023; 38:96-105. [PMID: 34519981 PMCID: PMC9852182 DOI: 10.1007/s13187-021-02083-2] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 08/29/2021] [Indexed: 06/13/2023]
Abstract
Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system, and many worry about their ability to cope with long-term sequelae, and some are even lost to follow-up. Therefore, in the present study, a targeted aftercare program was developed and evaluated with the goal of facilitating three important "life skills": (1) self-perception, (2) social interaction and conflict management, and (3) self-conscious communication of support needs. A total of n = 13 participants (19.2-30.2 years, mean age 22.8 years) completed a 3-day aftercare seminar, at the end of which each participant wrote a reflection letter ("letter to my future self"), elaborating on observed effects of the seminar, applicability of the given information in daily life, and the direct impact of the seminar on their individual circumstances. The reflection letters were analyzed using qualitative content analysis. All target life skills were mentioned in the reflection letters. The participants reported individual benefits from the program especially with respect to self-perception and self-confidence, giving and taking feedback, and acceptance of personal strengths and weaknesses. Moreover, the feeling of "not being alone" was associated with the survivors' experience of emotional and social support. This evaluation highlights the potential of a one weekend aftercare seminar to address important life skills that are known to positively influence health behavior in AYAs. The detailed description of the seminar can serve as a basis for making this kind of aftercare accessible for other people in similar circumstances.
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Affiliation(s)
- Thomas Pletschko
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria.
| | - Kerstin Krottendorfer
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
| | - Juliana Schlifelner
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
| | - Agathe Schwarzinger
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
- Austrian Childhood Cancer Organization, Vienna, Austria
| | - Verena Fohn-Erhold
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
| | - Liesa Weiler-Wichtl
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
| | | | - Ulrike Leiss
- Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
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Viola AS, Levonyan-Radloff K, Masterson M, Manne SL, Hudson SV, Devine KA. Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study. JMIR Form Res 2022; 6:e36323. [PMID: 35921137 PMCID: PMC9386586 DOI: 10.2196/36323] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/11/2022] [Revised: 05/06/2022] [Accepted: 05/20/2022] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. OBJECTIVE This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. METHODS Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. RESULTS A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. CONCLUSIONS Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.
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Affiliation(s)
- Adrienne S Viola
- Department of Pediatrics, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, United States
| | | | - Margaret Masterson
- Department of Pediatrics, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, United States
| | - Sharon L Manne
- Department of Medicine, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, United States
| | - Shawna V Hudson
- Department of Family Medicine and Community Health, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, United States
| | - Katie A Devine
- Department of Pediatrics, Rutgers Cancer Institute of New Jersey, New Brunswick, NJ, United States
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Cacciotti C, Fleming A, Duckworth J, Tseitlin H, Anderson L, Marjerrison S. Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative. Pediatr Hematol Oncol 2022; 39:291-303. [PMID: 34693863 DOI: 10.1080/08880018.2021.1987599] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/20/2022]
Abstract
Childhood and adolescent brain tumor survivors are at risk for long-term consequences of therapy. We reviewed adherence to long-term follow-up (LTFU) guidelines, assessed provider perspectives, and studied the needs, experience and quality of life (QOL) of pediatric malignant brain tumor survivors in the McMaster Children's Hospital Neuro-Oncology clinic. LTFU areas for improvement were evaluated using an anonymous health provider needs assessment questionnaire. The Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), Self-Management Skills Scale (SMSS), and PedsQL measured parents/patients' needs and QOL. Individual care plans were based on the Children's Oncology Group (COG) LTFU guidelines. Based on 17 responses, staff perceived areas for improvement included: increased multi-disciplinary participation, improved patient education and increased surveillance for therapy-related late effects. Thirty-two families participated, most felt they received high-quality care. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), requiring support with medical needs and activities of daily living. Overall median QOL scores were 'good' (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). Utilizing survivorship guidelines and assessments from patients, caregivers and health providers, we implemented improvements in our provision of neuro-oncology survivorship care. Lessons learned may assist other LTFU programs.
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Affiliation(s)
- Chantel Cacciotti
- Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.,Dana Farber/Boston Children's Cancer and Blood Disorder Center, Boston, Massachusetts, USA.,Division of Pediatric Hematology/Oncology, Western University, London, Ontario, Canada
| | - Adam Fleming
- Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.,Division of Pediatric Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada
| | - JoAnn Duckworth
- Division of Pediatric Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada
| | - Hanna Tseitlin
- Division of Pediatric Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada
| | - Loretta Anderson
- Division of Pediatric Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada
| | - Stacey Marjerrison
- Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.,Division of Pediatric Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada.,Department of Health Research Methods, Evidence & Impact, McMaster University, Hamilton, Ontario, Canada
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Toenne R, Baumeister R, Koch A, Lindhorst K, Reinhardt D, Kremeike K. Network Oncolgy Specialist Advisory Service - A Survey of the Psychosocial Situation of Long Term Cancer Survivors During Childhood or Adolescents. KLINISCHE PADIATRIE 2021; 234:138-145. [PMID: 34798671 DOI: 10.1055/a-1662-5336] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
BACKGROUND The number of long term cancer survivors during childhood or adolescence is increasing steadily. Survivors often suffer from physical or psychosocial long term effects. There is currently little data on the arrangement of long term aftercare in the field of psychosocial care. METHODS In November 2017 a questionnaire was sent to 1900 cancer survivors aged between 18 and 35 years whose diagnosis dated at least five years prior. The obtained data serve as a condition and needs assessment, how the (psychosocial) long-term aftercare is perceived by the survivors and what else is desired. The analysis was conducted using descriptive statistics as well as the calculation of bivariate correlations. RESULTS The response rate was 54.9% (n=1.043). The median interval from the first diagnosis was 20 years. In total 666 survivors (63.9%) stated that they suffered from at least one long term effect. Within this, especially neurocognitive themes played a role. 87.2% of the respondents had the feeling that they had overcome the illness/therapy well. CONCLUSION Through a stronger patient-focussed orientation concerning the current care and advisory services, the situation of long term survivors could be improved. This especially includes access to relevant information that focuses on the available psychosocial and welfare services, as well as to advisory and care services. Additionally, the development and expansion of care structures in the areas of neurocognition and psychotherapy is important to ensure long term participation attendance. HINTERGRUND Die Zahl der Langzeitüberlebenden nach einer Krebserkrankung im Kindes- oder Jugendalter (Survivor) steigt stetig. Survivor leiden nicht selten unter körperlichen oder psychosozialen Spätfolgen. Für die Gestaltung der Langzeitnachsorge im Bereich der psychosozialen Versorgung liegen bislang kaum Daten vor. METHODE 11/2017 wurde deutschlandweit ein Fragebogen an 1.900 Survivor im Alter von 18 bis 35 Jahren versandt, deren Erstdiagnose zum Befragungszeitpunkt mindestens fünf Jahre zurücklag. Die erhobenen Daten dienen als Zustands- und Bedarfserhebung, wie die (psychosozialen) Langzeitnachsorge von den Survivorn wahrgenommen und was darüber hinaus gewünscht wird. Die Auswertung erfolgte mittels deskriptiver Statistik sowie der Berechnung bivariater Korrelationen. ERGEBNISSE Der Rücklauf betrug 54,9% (n=1.043). Der mediane Abstand zur Erst-Diagnose betrug 20 Jahre. Insgesamt gaben 666 Survivor (63,9%) an, mindestens eines der abgefragten Items/Symptome bei sich zu beobachten. Hierbei spielen besonders neurokognitive Themen eine Rolle. Viele Angebote der Langzeitnachsorge sind den Survivorn nicht bekannt. 87,2% der Befragten haben das Gefühl, die Erkrankung/Therapie gut gemeistert zu haben. SCHLUSSFOLGERUNG Eine stärkere patientenorientierte Ausrichtung der derzeitigen Versorgungs- und Beratungsangebote könnte die Situation von Langzeitüberlebenden noch verbessern. Zentral sind hierbei der Zugang zu gezielten Informationen, eine psychosoziale und sozialrechtliche Betreuung sowie der Zugang zu Beratungs- und Versorgungsangeboten. Auch der Auf- und Ausbau von Versorgungsstrukturen im Bereich der Neurokognition und Psychotherapie ist für die langfristige Sicherstellung von Partizipation wünschenswert.
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Affiliation(s)
- Rebecca Toenne
- NOF, Netzwerk für die Versorgung schwer kranker Kinder und Jugendlicher e.V., Hannover, Deutschland
| | - Rebecca Baumeister
- NOF, Netzwerk für die Versorgung schwer kranker Kinder und Jugendlicher e.V., Hannover, Deutschland
| | - Anika Koch
- NOF, Netzwerk für die Versorgung schwer kranker Kinder und Jugendlicher e.V., Hannover, Deutschland
| | - Kristin Lindhorst
- NOF, Netzwerk für die Versorgung schwer kranker Kinder und Jugendlicher e.V., Hannover, Deutschland
| | - Dirk Reinhardt
- Paediatric Hematology and Oncology, Medical Center, University of Essen, Essen, Deutschland
| | - Kerstin Kremeike
- Center of Palliative Medicine, University Hospital Cologne Center of Palliative Medicine, Koln, Deutschland
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Vollmer TC, Koppen G. The Parent-Child Patient Unit (PCPU): Evidence-Based Patient Room Design and Parental Distress in Pediatric Cancer Centers. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2021; 18:ijerph18199993. [PMID: 34639296 PMCID: PMC8508188 DOI: 10.3390/ijerph18199993] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 07/31/2021] [Revised: 09/08/2021] [Accepted: 09/16/2021] [Indexed: 01/22/2023]
Abstract
Children with cancer are frequently hospitalized during diagnosis and treatment. Since the early 1980s, parents are co-admitted because their presence positively affects children’s adjustment to hospitalization and reduces post-traumatic stress. However, the size and overall architectural design of the rooms were never adapted to the doubling of the occupancy rate. Since studies show that many parents experience high levels of distress due to their child’s illness, the purpose of this study was to investigate the impact of the architecture of the aged patient rooms on parental distress. A video observation targeted parent–child interaction related to five architectural determinants: (a) function and place of interaction, (b) distance between parent and child, (c) used space, (d) withdrawal, and (e) duration of the interaction. A total of 22 families were included in two Dutch children’s hospitals. Results show a significant association between parental distress and three architectural determinants: The less anxious the parents were and the better they estimated their child’s well-being, the more distance they created between themselves and their child, and the more space, privacy, and withdrawal options were used. These findings are discussed within a new patient room typology, the parent–child patient unit (PCPU), which reacts to the evident association of parental distress and the design.
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Affiliation(s)
- Tanja C. Vollmer
- Architectural Psychology and Health, Faculty of Architecture, Technical University of Munich, Arcisstrasse 21, 80333 Munich, Germany
- Correspondence:
| | - Gemma Koppen
- Kopvol architecture & psychology, Mathenesserdijk 396, GV3026 Rotterdam, The Netherlands;
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11
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Hendriks MJ, Harju E, Michel G. The unmet needs of childhood cancer survivors in long-term follow-up care: A qualitative study. Psychooncology 2020; 30:485-492. [PMID: 33217089 PMCID: PMC8048447 DOI: 10.1002/pon.5593] [Citation(s) in RCA: 18] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/02/2020] [Revised: 11/11/2020] [Accepted: 11/11/2020] [Indexed: 01/08/2023]
Abstract
OBJECTIVE Evidence suggests benefits of long-term follow-up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long-term survivorship. METHODS Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis. RESULTS Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services. CONCLUSIONS Our findings revealed a demand for integrating psychosocial support in long-term follow-up care and a strong need for personalized, centralized, and interdisciplinary long-term follow-up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence-based long-term follow-up care including adequate psychosocial support for all childhood cancer survivors.
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Affiliation(s)
- Manya Jerina Hendriks
- Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.,Clinical Ethics, University Hospital Zurich, University of Zurich, Zurich, Switzerland
| | - Erika Harju
- Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
| | - Gisela Michel
- Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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12
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Childhood cancer in Latin America: from detection to palliative care and survivorship. Cancer Epidemiol 2020; 71:101837. [PMID: 33121936 DOI: 10.1016/j.canep.2020.101837] [Citation(s) in RCA: 23] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/22/2020] [Revised: 09/29/2020] [Accepted: 10/05/2020] [Indexed: 12/12/2022]
Abstract
BACKGROUND Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care. METHODS Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services. RESULTS Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors. CONCLUSIONS Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
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Koop Y, El Messaoudi S, Vermeulen H, Maas AHEM, Atsma F. Healthcare utilization and hospital variation in cardiac surveillance during breast cancer treatment: a nationwide prospective study in 5000 Dutch breast cancer patients. CARDIO-ONCOLOGY 2020; 6:14. [PMID: 32782828 PMCID: PMC7414746 DOI: 10.1186/s40959-020-00068-6] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/31/2020] [Accepted: 07/28/2020] [Indexed: 02/06/2023]
Abstract
Background Various breast cancer (BC) treatments, such as chemotherapy and targeted therapies, increase cardiotoxicity-risk and lead to premature ischemic heart disease and heart failure among survivors. Reducing this adverse risk through early recognition and (preventive) treatment is therefore important. Conversely, we feel that screening for cardiotoxicity is currently insufficiently standardized in daily practice. A fundamental first step in identifying areas of improvement is providing an overview of current practice. Objective This study aims to describe current cardiac surveillance for women with BC during and after cardiotoxic cancer treatment, using routinely collected hospital data in the Netherlands. The study also describes hospital variation in cardiac surveillance. Methods This observational study was performed on claims data provided by Statistics Netherlands. From the data, newly diagnosed BC patients in 2013 (N = 16,040) were selected and followed up until 2015. Healthcare utilization analyses were performed for all cardiac and oncologic healthcare activities but with a specific focus on cardiac surveillance healthcare activities. In addition, differences between types and individual hospitals were evaluated. Results Almost one third of all BC patients received high risk cardiotoxic treatments (N = 5157), but cardiac surveillance was rarely performed. Cardiac care provided to patients mainly consisted of ECGs (52.0%) and MUGA scans (26.5%). Cardiac MRI was performed in 0.7% of the patients, echocardiography in 17.7%, and measurement of Troponin and NT-proBNP in 5.1 and 5.8%, respectively. Moreover, we observed a substantial variation in cardiac surveillance between different hospital types and between individual hospitals. Conclusion This study shows that women treated for BC with cardiotoxic treatments do not receive recommended cardiac surveillance. Standardized approaches in clinical care are lacking, resulting in low rates of diagnostic testing and a substantial variation in surveillance between hospitals. A structured approach and increased interprofessional collaboration could lead to tailored cardiac surveillance for early detection of cardiotoxicity and therefore start of treatment.
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Affiliation(s)
- Yvonne Koop
- Department of Cardiology, Radboud University Medical Center, Geert Grooteplein 10 - route 616, Postbus 9101, 6500 Nijmegen, HB The Netherlands
| | - Saloua El Messaoudi
- Department of Cardiology, Radboud University Medical Center, Geert Grooteplein 10 - route 616, Postbus 9101, 6500 Nijmegen, HB The Netherlands
| | - Hester Vermeulen
- Scientific Institute for Quality of Healthcare, Radboud University Medical Center, Nijmegen, The Netherlands.,Research Department of Emergency and Critical Care, Faculty of Health and Social Studies, HAN University of Applied Sciences, Nijmegen, The Netherlands
| | - Angela H E M Maas
- Department of Cardiology, Radboud University Medical Center, Geert Grooteplein 10 - route 616, Postbus 9101, 6500 Nijmegen, HB The Netherlands
| | - Femke Atsma
- Scientific Institute for Quality of Healthcare, Radboud University Medical Center, Nijmegen, The Netherlands
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14
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Late mortality in survivors of childhood cancer in Hungary. Sci Rep 2020; 10:10761. [PMID: 32612167 PMCID: PMC7329824 DOI: 10.1038/s41598-020-67444-1] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/12/2019] [Accepted: 06/01/2020] [Indexed: 11/16/2022] Open
Abstract
The Hungarian Pediatric Oncology Network provides centralized treatment and population-based registration for cases of childhood cancer since 1973. We collected and analized data on late mortality, secondary malignancies and cardiac diseases in survivors (> 5 years) of childhood cancer to evaluate long-term risks. We extracted all solid tumour cases (3,650 followed up for 5–39.3 years, diagnosis: 1973–2008) from the database of the Hungarian Childhood Cancer Registry and checked against the Population Registry. Among the 301 patients who died after 5 years (8.2%) the most common causes of death were progression of primary cancer (52.5%), secondary malignancies (16%) and cardiovascular diseases (8%). Late mortality rates (SMR, total: 35,006 pyrs) showed highly elevated risk of death (SMR: 10.7 95% CI 9–12.4) for the second 5 years of follow up and moderately elevated risk for 10-year survivors (SMR: 3.5 95% CI 3–4.1). Marked differences were detected in the pattern of causes of death between diagnostic groups of primary cancer; with highest risks beyond 10 years for CNS tumours, Hodgkin disease, osteosarcoma and advanced stage neuroblastoma. The longstanding mortality risk for 5-year survivors underlines the need for tailored long-term follow-up and monitoring of late consequences according to the context of different primary diseases of childhood cancer.
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15
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Gebauer J, Baust K, Bardi E, Grabow D, Stein A, van der Pal HJ, Calaminus G, Langer T. Guidelines for Long-Term Follow-Up after Childhood Cancer: Practical Implications for the Daily Work. Oncol Res Treat 2020; 43:61-69. [PMID: 31931503 DOI: 10.1159/000504200] [Citation(s) in RCA: 31] [Impact Index Per Article: 6.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/10/2019] [Accepted: 10/16/2019] [Indexed: 11/19/2022]
Abstract
BACKGROUND Many childhood cancer survivors develop treatment-associated late effects emerging years or even decades after the end of treatment. Evidence-based guidelines recommend risk-adapted screening, facilitating early diagnosis and management of these sequelae. Long-term follow-up (LTFU) in specialized late effects clinics is devised to implement screening recommendations in the care of childhood cancer survivors. OBJECTIVES To create a practical LTFU tool for the daily practice. METHODS Current guidelines and screening recommendations concerning LTFU in adult survivors of childhood cancer were reviewed and a comprehensive LTFU approach was developed. RESULTS A risk stratification model assigning patients to three risk groups with different screening recommendations and frequencies is presented based on current LTFU guidelines. Furthermore, a model of LTFU in a clinical multidisciplinary team is proposed. CONCLUSIONS Although late morbidity and mortality in childhood cancer survivors have been attenuated in the last decade by reducing treatment toxicities, a high proportion of long-term survivors already is or will still be affected by treatment-associated chronic health conditions. With the knowledge of late effects and their occurrence as a consequence of specific treatment modalities, practical LTFU recommendations are essential to achieve standardized and structured LTFU care.
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Affiliation(s)
- Judith Gebauer
- Department of Internal Medicine I, University Hospital of Schleswig-Holstein, Campus Lübeck, Lübeck, Germany
| | - Katja Baust
- Pediatric Hematology/Oncology, University Children's Hospital Bonn, Bonn, Germany
| | - Edit Bardi
- Department of Pediatrics and Adolescent Medicine, Kepler University Hospital, Linz, Austria.,St Anna Kinderspital, Vienna, Austria
| | - Desiree Grabow
- German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany
| | - Alexander Stein
- Hubertus Wald Tumor Centre, University Cancer Centre Hamburg, and Second Department of Internal Medicine, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
| | | | - Gabriele Calaminus
- Pediatric Hematology/Oncology, University Children's Hospital Bonn, Bonn, Germany
| | - Thorsten Langer
- Pediatric Hematology and Oncology, University Hospital of Schleswig-Holstein, Campus Lübeck, Lübeck, Germany,
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Zabih V, Kahane A, O'Neill NE, Ivers N, Nathan PC. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. J Cancer Surviv 2019; 13:713-729. [PMID: 31338733 DOI: 10.1007/s11764-019-00790-w] [Citation(s) in RCA: 21] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2019] [Accepted: 07/11/2019] [Indexed: 02/07/2023]
Abstract
PURPOSE Many survivors of childhood cancer are at high risk of late effects of their cancer therapy, including cardiac toxicity and subsequent malignant neoplasms (SMN). Current North American guidelines recommend periodic surveillance for these late effects. We conducted a systematic review of the literature to estimate rates of adherence to recommended surveillance and summarize studies evaluating interventions intended to increase adherence. METHODS We searched MEDLINE, Embase, Web of Science, and the Cumulative Index of Nursing and Allied Health Literature (CINAHL) for articles published between January 2000 and September 2018 that reported adherence to surveillance for cardiac toxicity and SMN (breast and colorectal cancer) and interventions implemented to improve completion of recommended testing. Risk of bias was assessed using relevant Cochrane checklists. Due to heterogeneity and overlapping study populations, we used narrative synthesis to summarize the findings. This review was registered in PROSPERO: CRD42018098878. RESULTS Thirteen studies met our inclusion criteria for assessing adherence to surveillance, while five assessed interventions to improve rates of surveillance. No studies met criteria for low risk of bias. Completion of recommended surveillance was lowest for colorectal cancer screening (11.5-30.0%) followed by cardiomyopathy (22.3-48.1%) and breast cancer (37.0-56.5%). Factors such as patient-provider communication, engagement with the health care system, and receipt of information were consistently reported to be associated with higher rates of surveillance. Of five randomized controlled trials aimed at improving surveillance, only two significantly increase completion of recommended testing-one for echocardiography and one for mammography. Both involved telephone outreach to encourage and facilitate these tests. CONCLUSION The majority of childhood cancer survivors at high risk of cardiac toxicity or SMN do not receive evidence-based surveillance. There is paucity of rigorous studies evaluating interventions to increase surveillance in this population. IMPLICATIONS FOR CANCER SURVIVORS Robust trials are needed to assess whether tailored interventions, designed based on unique characteristics and needs of each survivor population, could improve adherence.
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Affiliation(s)
- Veda Zabih
- Division of Hematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada
| | | | | | - Noah Ivers
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada
- Institute of Health Policy Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada
| | - Paul C Nathan
- Division of Hematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.
- Institute of Health Policy Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
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17
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Gebauer J, Lehnert H, Schmid SM, Spix C, Stein A, Langer T. [Late effects following childhood cancer treatment : A special challenge for transition medicine]. Internist (Berl) 2018; 59:1157-1162. [PMID: 30229367 DOI: 10.1007/s00108-018-0496-0] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/06/2023]
Abstract
BACKGROUND Childhood cancer survivors are at risk of cancer- and treatment-related chronic health conditions. Since these sequelae may occur years after the end of treatment, many patients are already adults and have completed pediatric oncological care. Thus, successful transition is essential in order to ensure long-term surveillance. OBJECTIVES The present review outlines the most frequent late effects of childhood cancer treatment. Moreover, difficulties in transition of these patients are discussed and interdisciplinary models of care are presented. RESULTS Late effects following childhood cancer treatment occur in over two thirds of patients 30 years after the end of the oncological treatment and can affect different organs. The most frequent sequelae are endocrine disturbances, cardiac conditions, and subsequent neoplasms. Many late effects are effectively manageable if detected early. This necessitates an interdisciplinary approach as well as life-long surveillance. CONCLUSIONS Transition from pediatric to internal medicine care as well as a change in the focus of care, shifting from relapse centered follow-up to late-effects centered surveillance, constitute a special challenge for a successful transition of long-term childhood cancer survivors. Specialized late-effects survivorship clinics offering interdisciplinary care from pediatric oncologists, specialists of internal medicine, and further disciplines enable the early diagnosis and treatment of late-effects.
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Affiliation(s)
- J Gebauer
- Medizinische Klinik 1, Abteilung für Endokrinologie, Diabetologie und Stoffwechselmedizin, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck, Deutschland
| | - H Lehnert
- Medizinische Klinik 1, Abteilung für Endokrinologie, Diabetologie und Stoffwechselmedizin, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck, Deutschland
| | - S M Schmid
- Medizinische Klinik 1, Abteilung für Endokrinologie, Diabetologie und Stoffwechselmedizin, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck, Deutschland
| | - C Spix
- Deutsches Kinderkrebsregister, Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Mainz, Deutschland
| | - A Stein
- Universitäres Cancer Center Hamburg (UCCH), Universitätsklinikum Hamburg-Eppendorf, Hamburg, Deutschland
| | - T Langer
- Klinik für Kinder- und Jugendmedizin, Bereich pädiatrische Hämatologie und Onkologie, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Ratzeburger Allee 160, 23562, Lübeck, Deutschland.
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18
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Improving healthcare in pediatric oncology: development and testing of multiple indicators to evaluate a hub-and-spoke model. TUMORI JOURNAL 2018; 104:459-465. [DOI: 10.5301/tj.5000645] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
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19
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Ramsay JM, Mann K, Kaul S, Zamora ER, Smits-Seemann RR, Kirchhoff AC. Follow-Up Care Provider Preferences of Adolescent and Young Adult Cancer Survivors. J Adolesc Young Adult Oncol 2018; 7:204-209. [PMID: 29346008 DOI: 10.1089/jayao.2017.0083] [Citation(s) in RCA: 24] [Impact Index Per Article: 3.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/19/2022] Open
Abstract
PURPOSE To explore the experiences and perspectives of adolescent and young adult (AYA) cancer survivors regarding patient-provider relationships and their preferences surrounding type of healthcare provider for follow-up care. METHODS We recruited AYA cancer survivors who were diagnosed between the ages of 15 and 39 using the Utah Cancer Registry. Twenty-eight survivors participated in six focus groups held between March and May of 2015 in Salt Lake City and St. George, Utah. This analysis focuses on how survivors' preferences about type of healthcare provider may influence their transition into, and utilization of, follow-up care. RESULTS On average, survivors were 6.3 (standard deviation = 1.7) years from their cancer diagnosis. A majority of survivors expressed a desire not to transition to a new provider and preferred continuing to see their oncologist for follow-up care. For these survivors, this was due to already having a close relationship with their oncologist and because they trusted their provider's knowledge about cancer and how to handle late effects. However, survivors placed emphasis on being comfortable with their healthcare provider, regardless of provider type. CONCLUSIONS Our findings demonstrate the importance of formalizing provider transitions and roles after cancer therapy to improve patient comfort with new providers. By understanding the complexities of the transition from active cancer treatment to follow-up care for AYA survivors, these findings can inform programs undertaking post-care educational activities to ensure a seamless transition into survivorship care. Survivorship care plans can facilitate these transitions and improve patient confidence in follow-up care.
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Affiliation(s)
- Joemy M Ramsay
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah
| | - Karely Mann
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah
| | - Sapna Kaul
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.,2 Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Eduardo R Zamora
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah
| | - Rochelle R Smits-Seemann
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.,2 Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Anne C Kirchhoff
- 1 Cancer Control and Population Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah.,2 Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Utah, Salt Lake City, Utah
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20
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Nagele E, Fürschuß C, Mohapp A, Wiegele K, Lackner H, Urban C. Psychosoziale Versorgung pädiatrisch-onkologischer PatientInnen. Monatsschr Kinderheilkd 2017. [DOI: 10.1007/s00112-017-0332-y] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2022]
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21
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Kam V, Hendershot E, Anderson L, Marjerrison S. Evaluation of a joint adult and pediatric clinic for cancer survivorship care. Pediatr Blood Cancer 2017; 64. [PMID: 28150383 DOI: 10.1002/pbc.26476] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/05/2016] [Revised: 12/30/2016] [Accepted: 01/10/2017] [Indexed: 11/10/2022]
Abstract
OBJECTIVES The best model of care for long-term follow-up of survivors of childhood cancer is uncertain. We describe the care experience provided by the joint adult/pediatric AfterCare Clinic at the McMaster Children's Hospital. Secondary outcomes include an evaluation of cancer worry, self-management skills, and loss to follow-up rates. METHODS AfterCare Clinic patients aged 19-29 years were approached for study participation between January and March 2016. Data were collected from a cross-sectional survey, consisting of the Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), and Self-Management Skills Scale (SMSS). Responses were analyzed using descriptive statistics. RESULTS Seventy-three (40%) patients participated in the survey, 17 (23%) anonymously. Demographic characteristics of the nonanonymous participants were representative of the total clinic cohort. Most respondents were satisfied with the quality of care and anticipatory guidance provided, demonstrated by the CCEQ responses. Respondents had a high degree of cancer worries (mean score 50.6 [±18.4]), but good self-management skills (72.0 [±10.9]). Our 5-year loss to follow-up rate was 3.8%. Sensitivity analyses showed no difference in responses between the total cohort and the nonanonymous participants. CONCLUSIONS This sample of young adult survivors of childhood cancer had a higher degree of cancer worries and higher self-management skills scores than a younger cohort of survivors of childhood cancer in the literature. Given this, along with the positive care experience reported, and the low loss to follow-up rate, the joint adult/pediatric model of survivorship care appears to be meeting the needs of this population.
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Affiliation(s)
- Vicki Kam
- Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
| | - Eleanor Hendershot
- Division of Hematology/Oncology, Department of Pediatrics, McMaster Children's Hospital, Hamilton, Ontario, Canada.,Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada
| | - Loretta Anderson
- Division of Hematology/Oncology, Department of Pediatrics, McMaster Children's Hospital, Hamilton, Ontario, Canada
| | - Stacey Marjerrison
- Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.,Division of Hematology/Oncology, Department of Pediatrics, McMaster Children's Hospital, Hamilton, Ontario, Canada
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Abstract
PURPOSE/AIMS The key worker role in cancer services was established in England to improve the continuity of care for patients. We examined how the role has been implemented by clinical nurse specialists and how both cancer patients and nursing staff viewed its effectiveness to inform debate about the transfer of patients between clinical nurse specialists during cancer care. DESIGN This study was questionnaire based, with separate surveys developed for patients and staff. METHOD The questionnaires explored issues including implementation of the key worker role, modifications to it, and where the role was felt to have most impact. The questionnaires were completed by 101 staff members and 46 patients. The data were analyzed descriptively. RESULTS Perspectives on the key worker role differed between nursing staff respondents and patient respondents. Overall, patient respondents were very positive, whereas staff respondents were less so. The following is a key difference related to patient handover: 71% of patient respondents wanted the same key worker throughout their treatment, but only 28% of staff respondents did. Staff respondents wanted more training to clarify the role. CONCLUSION Continuity of care through an assigned key worker was highly valued by patients. Successful implementation could be better achieved through improved communication with both nursing staff and allied health professions. Where possible, cancer patients should be assigned a dedicated key worker at initial diagnosis.
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23
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Rokitka DA, Curtin C, Heffler JE, Zevon MA, Attwood K, Mahoney MC. Patterns of Loss to Follow-Up Care Among Childhood Cancer Survivors. J Adolesc Young Adult Oncol 2016; 6:67-73. [PMID: 27529650 DOI: 10.1089/jayao.2016.0023] [Citation(s) in RCA: 40] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/31/2022] Open
Abstract
PURPOSE Surveillance for long-term complications related to previous cancer therapy can help diagnose/manage chronic health conditions in childhood cancer survivors and improve survivor quality of life. However, a challenge to delivering long-term care to childhood cancer survivors is loss to follow-up; many patients discontinue care at specialized survivor care centers. The purpose of this study was to examine patterns of loss to follow-up among a cohort of childhood cancer survivors. METHODS This retrospective study examined follow-up patterns among a nonrandom representative sample of 370 childhood cancer survivors among 1116 patients from a single institution. The median age of patients at diagnosis was 10.2 years (range <1-21). Factors potentially related to follow-up were utilized to evaluate patterns of follow-up across 5-year intervals following completion of active therapy. The association between patient characteristics and follow-up was evaluated using univariate and multivariate binomial regression models. RESULTS The probability of follow-up 1-5 years post-treatment was 91.2% (89.7%-92.5%) but dropped to 68.5% (66.2%-70.8%) during years 6-10, 47.7% (45.0%-50.3%) during years 11-15, and continued to steadily decrease over time. Overall, white race, diagnoses at younger ages, patients with lymphomas/leukemias, and decade of diagnosis were each associated with somewhat better rates of follow-up. CONCLUSIONS These findings highlight the lack of follow-up by adult survivors of childhood cancer with only approximately one-half of patients returning for follow-up 10 years after completion of therapy. Interventions focused on educating both patients and primary care physicians may help to increase long-term follow-up care among this at-risk population.
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Affiliation(s)
- Denise A Rokitka
- 1 Department of Pediatric Oncology, Roswell Park Cancer Institute , Buffalo, New York
| | - Colleen Curtin
- 2 Jacobs School of Medicine and Biomedical Sciences, State University at Buffalo , Buffalo, New York
| | - Jennifer E Heffler
- 1 Department of Pediatric Oncology, Roswell Park Cancer Institute , Buffalo, New York
| | - Michael A Zevon
- 3 Department of Health Behavior, Roswell Park Cancer Institute , Buffalo, New York
| | - Kris Attwood
- 4 Department of Biostatistics and Bioinformatics, Roswell Park Cancer Institute , Buffalo, New York
| | - Martin C Mahoney
- 5 Department of Medicine, Roswell Park Cancer Institute , Buffalo, New York.,6 Department of Family Medicine, State University of New York at Buffalo , Buffalo, New York
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Lupatsch JE, Wengenroth L, Rueegg CS, Teuffel O, Gumy-Pause F, Kuehni CE, Michel G. Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs. Pediatr Blood Cancer 2016; 63:318-25. [PMID: 26398593 DOI: 10.1002/pbc.25755] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/14/2015] [Accepted: 08/20/2015] [Indexed: 11/06/2022]
Abstract
BACKGROUND Little is known about follow-up care attendance of adolescent survivors of childhood cancer, and which factors foster or hinder attendance. Attending follow-up care is especially important for adolescent survivors to allow for a successful transition into adult care. We aimed to (i) describe the proportion of adolescent survivors attending follow-up care; (ii) describe adolescents' health beliefs; and (iii) identify the association of health beliefs, demographic, and medical factors with follow-up care attendance. PROCEDURE Of 696 contacted adolescent survivors diagnosed with cancer at ≤ 16 years of age, ≥ 5 years after diagnosis, and aged 16-21 years at study, 465 (66.8%) completed the Swiss Childhood Cancer Survivor Study questionnaire. We assessed follow-up care attendance and health beliefs, and extracted demographic and medical information from the Swiss Childhood Cancer Registry. Cross-sectional data were analyzed using descriptive statistics and logistic regression models. RESULTS Overall, 56% of survivors reported attending follow-up care. Most survivors (80%) rated their susceptibility for late effects as low and believed that follow-up care may detect and prevent late effects (92%). Few (13%) believed that follow-up care is not necessary. Two health beliefs were associated with follow-up care attendance (perceived benefits: odds ratio [OR]: 1.56; 95% confidence interval [CI]: 1.07-2.27; perceived barriers: OR: 0.70; 95%CI: 0.50-1.00). CONCLUSIONS We show that health beliefs are associated with actual follow-up care attendance of adolescent survivors of childhood cancer. A successful model of health promotion in adolescent survivors should, therefore, highlight the benefits and address the barriers to keep adolescent survivors in follow-up care.
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Affiliation(s)
- Judith E Lupatsch
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
| | - Laura Wengenroth
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
| | - Corina S Rueegg
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.,Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland
| | - Oliver Teuffel
- Departement of Pediatric Hematology-Oncology, Bern University Hospital, Bern, Switzerland
| | - Fabienne Gumy-Pause
- Department of Pediatrics, University Hospital of Geneva, Geneva, Switzerland
| | - Claudia E Kuehni
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
| | - Gisela Michel
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.,Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland
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25
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Transition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork. Eur J Cancer 2016; 54:64-68. [DOI: 10.1016/j.ejca.2015.10.007] [Citation(s) in RCA: 33] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/20/2015] [Revised: 10/07/2015] [Accepted: 10/08/2015] [Indexed: 11/21/2022]
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Daniel CL, Kohler CL, Stratton KL, Oeffinger KC, Leisenring WM, Waterbor JW, Whelan KF, Armstrong GT, Henderson TO, Krull KR, Robison LL, Nathan PC. Predictors of colorectal cancer surveillance among survivors of childhood cancer treated with radiation: a report from the Childhood Cancer Survivor Study. Cancer 2015; 121:1856-63. [PMID: 25649858 DOI: 10.1002/cncr.29265] [Citation(s) in RCA: 24] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/12/2014] [Accepted: 12/22/2014] [Indexed: 01/21/2023]
Abstract
BACKGROUND Childhood cancer survivors treated with radiotherapy to a field including the colon or rectum have an elevated risk of developing radiation-induced colorectal cancer (CRC). The Children's Oncology Group recommends colonoscopy every 5 years beginning at age 35 years for at-risk survivors. METHODS Analyses included 702 five-year survivors (Childhood Cancer Survivor Study) aged ≥36 years who received ≥30 gray of abdominal, pelvic, or spinal radiotherapy. Multivariate generalized linear models were used to calculate relative risks (RR) with 95% confidence intervals (95% CI) for adherence to the Children's Oncology Group's CRC surveillance recommendations. RESULTS With a median age of 43 years (range, 36-58 years), 29.5% of the survivors (207 of 702 survivors) met surveillance recommendations. In multivariate analyses, age ≥50 years versus age 36 to 49 years (RR, 2.6; 95% CI, 2.0-3.4), reporting a routine cancer follow-up visit within 1 year before the study (RR, 1.5; 95% CI, 1.0-2.2), reporting ≥10 physician visits within the past year versus 0 to 9 visits (RR, 1.4; 95% CI, 1.1-1.7), and discussing future cancer risk with a physician at the time of the most recent follow-up visit (RR, 1.4; 95% CI, 1.1-1.7) were found to be associated with adherence to CRC surveillance recommendations. CONCLUSIONS Greater than 70% of survivors at an increased risk of CRC were not screened as recommended. Regular physician contact and discussion of screening were associated with a 60% increase in CRC surveillance. Educational interventions targeted at survivors and their primary care physicians are needed to heighten knowledge of CRC risk after radiotherapy and the importance of appropriate surveillance.
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Affiliation(s)
- Casey L Daniel
- Department of Social and Behavioral Sciences, Harvard University, Boston, Massachusetts
| | - Connie L Kohler
- Department of Health Behavior, University of Alabama at Birmingham, Birmingham, Alabama
| | - Kayla L Stratton
- Division of Clinical Research, Fred Hutchinson Cancer Research Center, Seattle, Washington.,Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington
| | - Kevin C Oeffinger
- Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York
| | - Wendy M Leisenring
- Division of Clinical Research, Fred Hutchinson Cancer Research Center, Seattle, Washington.,Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington
| | - John W Waterbor
- Department of Epidemiology, University of Alabama at Birmingham, Birmingham, Alabama
| | - Kimberly F Whelan
- Department of Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama
| | - Gregory T Armstrong
- Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, Tennessee
| | - Tara O Henderson
- Department of Pediatrics, University of Chicago, Chicago, Illinois
| | - Kevin R Krull
- Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, Tennessee
| | - Leslie L Robison
- Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, Tennessee
| | - Paul C Nathan
- Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada
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Brown MC, Levitt GA, Frey E, Bárdi E, Haupt R, Hjorth L, Kremer L, Kuehni CE, Lettner C, Mulder RL, Michel G, Skinner R. The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors. Pediatr Blood Cancer 2015; 62:322-328. [PMID: 25382221 DOI: 10.1002/pbc.25310] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/14/2014] [Accepted: 09/22/2014] [Indexed: 11/07/2022]
Abstract
BACKGROUND Evidence-based guidelines are needed to guide effective long-term follow-up (LTFU) of childhood cancer survivors (CCS) at risk of late adverse effects (LAEs). We aimed to ascertain the use of LTFU guidelines throughout Europe, and seek views on the need for pan-European LTFU guidelines. PROCEDURES One expert clinician from each of 44 European countries was invited to participate in an online survey. Information was sought regarding the use and content of LTFU guidelines in the respondent's centre and country, and their views about developing pan-European LTFU guidelines. RESULTS Thirty-one countries (70%) responded, including 24 of 26 full EU countries (92%). LTFU guidelines were implemented nationally in 17 countries (55%). All guidelines included recommendations about physical LAEs, specific risk groups and frequency of surveillance, and the majority about psychosocial LAEs (70%), and healthy lifestyle promotion (65%). A minority of guidelines described recommendations about transition to age-appropriate LTFU services (22%), where LTFU should be performed (22%) and by whom (30%). Most respondents (94%) agreed on the need for pan-European LTFU guidelines, specifically including recommendations about surveillance for specific physical LAEs (97%), action to be taken if a specific LAE is detected (90%), minimum requirements for LTFU (93%), transition and health promotion (both 87%). CONCLUSIONS Guidelines are not universally used throughout Europe. However, there is strong support for developing pan-European LTFU guidelines for CCS. PanCareSurFup (www.pancare.eu) will collaborate with partners to develop such guidelines, including recommendations for hitherto relatively neglected topics, such as minimum LTFU requirements, transition and health promotion. Pediatr Blood Cancer 2015;62:322-328. © 2014 Wiley Periodicals, Inc.
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Affiliation(s)
| | - Gillian A Levitt
- Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK
| | - Eva Frey
- St. Anna Children's Hospital, Vienna, Austria
| | - Edit Bárdi
- Semmelweis University, Budapest, Hungary
| | | | - Lars Hjorth
- Skåne University Hospital, Lund University, Lund, Sweden
| | | | | | | | - Renée L Mulder
- Emma's Children Hospital/AMC, Amsterdam, the Netherlands
| | - Gisela Michel
- University of Bern, Bern, Switzerland
- University of Lucerne, Lucerne, Switzerland
| | - Roderick Skinner
- Newcastle University, Newcastle upon Tyne, UK
- Great North Children's Hospital, Newcastle upon Tyne, UK
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Ping P, Gu BH, Li P, Huang YR, Li Z. Fertility outcome of patients with testicular tumor: before and after treatment. Asian J Androl 2014; 16:107-11. [PMID: 24369141 PMCID: PMC3901866 DOI: 10.4103/1008-682x.122194] [Citation(s) in RCA: 40] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
Testicular cancer (TC) is the most curable type of cancer, with a survival rate of more than 95%. Oncologists are faced with the challenge that gonadotoxic cancer treatments can compromise future fertility, either temporarily or permanently. Our aim was to investigate the long-term effects of TC treatments on male fertility and on the offspring of patients who had received these treatments. Between January 1996 and December 2010, 125 eligible patients, ranging from 18 to 54 years (median age 36.3 ± 15.7), with unilateral TC underwent surgery, chemotherapy or radiotherapy at our center. Some of these patients had their semen samples cryopreserved in the Shanghai Human Sperm Bank. The clinical data were evaluated, and questionnaire and telephone follow-up surveys were given to all patients. The data were analyzed to determine the patients’ fertility status pre- and posttreatment. Of the 125 eligible patients, 93.6% (117/125) were accessible and were evaluated. Among 81 men who were married before diagnosis, 21 had conceived successfully before diagnosis and six reported azoospermia. Posttreatment conception was attempted by 73 men; of these, 16 conceived naturally and 19 conceived by artificial reproductive techniques, resulting in 37 healthy babies with no congenital malformations. Of the patients who had not conceived before treatment, 21.9% (21/96) banked their sperm and 23.8% of these patients (5/21) subsequently used the banked sperm. Retroperitoneal lymph node dissection, chemotherapy and radiotherapy were the most highly correlated with lack of conception post-TC treatment. Sperm banking should be recommended to TC patients with the desire for biological conception. There is no evidence to suggest that TC treatments are associated with birth defects or childhood malignancies.
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Affiliation(s)
| | | | | | | | - Zheng Li
- Department of Urology, Shanghai Human Sperm Bank, Shanghai Institute of Andrology, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University; Shanghai Key Laboratory for Assisted Reproduction and Reproductive Genetics, Shanghai, China
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29
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Moskowitz CS, Oeffinger KC. Predicting Adverse Health Outcomes in Long-Term Survivors of a Childhood Cancer. CHILDREN (BASEL, SWITZERLAND) 2014; 1:63-73. [PMID: 26236650 PMCID: PMC4521414 DOI: 10.3390/children1020063] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 06/02/2014] [Revised: 07/04/2014] [Accepted: 07/07/2014] [Indexed: 11/30/2022]
Abstract
More than 80% of children and young adults diagnosed with invasive cancer will survive five or more years beyond their cancer diagnosis. This population has an increased risk for serious illness- and treatment-related morbidity and premature mortality. A number of these adverse health outcomes, such as cardiovascular disease and some second primary neoplasms, either have modifiable risk factors or can be successfully treated if detected early. Absolute risk models that project a personalized risk of developing a health outcome can be useful in patient counseling, in designing intervention studies, in forming prevention strategies, and in deciding upon surveillance programs. Here, we review existing absolute risk prediction models that are directly applicable to survivors of a childhood cancer, discuss the concepts and interpretation of absolute risk models, and examine ways in which these models can be used applied in clinical practice and public health.
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Affiliation(s)
- Chaya S. Moskowitz
- Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, 307 E 63rd Street, New York, NY 10065, USA
| | - Kevin C. Oeffinger
- Departments of Medicine and Pediatrics, Memorial Sloan Kettering Cancer Center, 300 E 66th Street, 9th Floor, New York, NY 10065, USA; E-Mail:
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30
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Affiliation(s)
- Hoong-Wei Gan
- Developmental Endocrinology Research Group, UCL Institute of Child Health, London, UK The London Centre for Paediatric Endocrinology & Diabetes, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
| | - Helen A Spoudeas
- The London Centre for Paediatric Endocrinology & Diabetes, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK The London Centre for Paediatric Endocrinology & Diabetes, University College London Hospitals NHS Foundation Trust, London, UK
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31
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Williams LK, Drew S, Deluca CR, McCarthy MC. Screening for Psychological Well-Being in Childhood Cancer Survivors: A Preliminary Assessment of the Feasibility of the Strength and Difficulties Questionnaire as a Parent-Proxy Report. J Psychosoc Oncol 2013; 31:601-16. [DOI: 10.1080/07347332.2013.835019] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/26/2022]
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Singer S, Gianinazzi ME, Hohn A, Kuehni CE, Michel G. General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer 2013; 60:1565-73. [PMID: 23813795 DOI: 10.1002/pbc.24586] [Citation(s) in RCA: 37] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/05/2012] [Accepted: 03/29/2013] [Indexed: 11/08/2022]
Abstract
BACKGROUND An increasing number of childhood cancer survivors need long-term follow-up care. Different models address this problem, including that of follow-up by general practitioners (GP). We describe models that involve GPs in follow-up for childhood cancer survivors, their advantages and disadvantages, clinics that employ these models, and the elements essential to high-quality, GP-led follow-up care. PROCEDURE We searched four databases (PubMed [including Medline], Embase, Cochrane, and CINAHL) without language restrictions. RESULTS We found 26 publications, which explicitly mentioned GP-led follow-up. Two models were commonly described: GP-only, and shared care between GP and pediatric oncology or late effects clinic. The shared care model appears to have advantages over GP-only follow-up. We found four clinics using models of GP-led follow-up, described in five papers. We identified well-organized transition, treatment summary, survivorship care plan, education of GPs and guidelines as necessary components of successful follow-up. CONCLUSION Scarcity of literature necessitated a review rather than a meta-analysis. More research on the outcomes of GP-led care is necessary to confirm the model for follow-up of childhood cancer survivors in the long term. However, with the necessary elements in place, the model of GP-led follow-up, and shared care in particular, holds promise.
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Affiliation(s)
- Sarah Singer
- Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine (ISPM), University of Bern, Bern, Switzerland
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Greenberg-Kushnir N, Freedman S, Eshel R, Zwerdling N, Elhasid R, Dvir R, Yalon M, Kulkarni AV, Constantini S. Screening tool for late-effect pediatric neuro-oncological clinics: a treatment-oriented questionnaire. Pediatr Blood Cancer 2013; 60:1369-74. [PMID: 23418062 DOI: 10.1002/pbc.24495] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/27/2012] [Accepted: 01/10/2013] [Indexed: 11/06/2022]
Abstract
BACKGROUND Many survivors of pediatric brain tumors (SPBTs) suffer from long-term late effects (LEs). Our aim was to create a practical screening tool for detecting LEs in this population. Such a screening tool will improve our ability to identify those patients who may benefit from treatment in LE clinics while focusing on individual relevant issues. PROCEDURE We developed the Treatment-Oriented Screening Questionnaire (TOSQ); a self-reported, risk-based questionnaire that addresses all LEs SPBTs can potentially suffer. As a basis for the TOSQ design we used the Long-Term Follow-Up Guidelines published by the Children's Oncology Group. Output includes individual recommendations for further treatment. We prospectively assessed whether the TOSQ can accurately detect treatment targets in SPBTs by comparing patient and caregiver questionnaire scores with physician evaluations. Data are presented from 41 SPBTs. RESULTS The TOSQ is a precise screening tool for identifying LEs in SPBTs based on the significant correlation (P < 0.05) that was found between parental scores and physician evaluations. Statistical testing proved that parents are a good source of information about child's health status, and that TOSQ accurately reflects the correlation between patient difficulties and quality of life. CONCLUSIONS The TOSQ is the first described screening tool for identification of LEs designed specifically for SPBTs. It is simple to use and provides a valid, comprehensive and economic assessment followed by targeted treatment plan for each patient. By repeatedly using the TOSQ over the years, we can improve our ability to detect and give focused treatment to those who require assistance.
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Affiliation(s)
- Noa Greenberg-Kushnir
- Department of Pediatric Neurosurgery, Dana Children's Hospital, Tel-Aviv Medical Center, Tel-Aviv, Israel
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Ling J, McCabe K, Brent S, Crosland A. Key workers in cancer care: patient and staff attitudes and implications for role development in cancer services. Eur J Cancer Care (Engl) 2013; 22:691-8. [DOI: 10.1111/ecc.12079] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/26/2013] [Indexed: 11/27/2022]
Affiliation(s)
- J. Ling
- Department of Pharmacy, Health & Wellbeing; University of Sunderland; Sunderland; UK
| | - K. McCabe
- Department of Pharmacy, Health & Wellbeing; University of Sunderland; Sunderland; UK
| | - S. Brent
- Department of Pharmacy, Health & Wellbeing; University of Sunderland; Sunderland; UK
| | - A. Crosland
- Department of Pharmacy, Health & Wellbeing; University of Sunderland; Sunderland; UK
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Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey. PLoS One 2012; 7:e53201. [PMID: 23300889 PMCID: PMC3534070 DOI: 10.1371/journal.pone.0053201] [Citation(s) in RCA: 41] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/29/2012] [Accepted: 11/26/2012] [Indexed: 11/19/2022] Open
Abstract
Background For many childhood cancer survivors follow-up care is important long after treatment completion. We aimed to describe the availability and characteristics of long-term follow-up programs (LTFU) across Europe, their content and aims, their problems, and to assess opinions on different models of LTFU. Methodology/Principal Findings We asked 179 pediatric oncology institutions in 20 European countries to complete an online survey on LTFU available at their institution. Of 110 respondents (62% response), 66% reported having LTFU for pediatric survivors, 38% for adult survivors of childhood cancer. Availability varied widely across European regions, from 9% of institutions in Northern Europe reporting LTFU for adult survivors to 83% of institution on the British Isles reporting LTFU for pediatric survivors. Pediatric and adult LTFU were usually located in pediatric hospitals and run by pediatric oncologists. Content of follow-up included screening for adverse outcomes and health education. Important problems included lack of time, personnel and funding. Most institutions without LTFU reported that they would like to offer a program (86%). Conclusion/Significance Despite general agreement on the need of follow-up care, there is still a lack of well-organized LTFU for survivors of childhood cancer across Europe.
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Thorp N. Basic principles of paediatric radiotherapy. Clin Oncol (R Coll Radiol) 2012; 25:3-10. [PMID: 23063320 DOI: 10.1016/j.clon.2012.08.006] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/23/2012] [Revised: 06/06/2012] [Accepted: 07/31/2012] [Indexed: 11/15/2022]
Abstract
This article gives an introduction to the fundamentals of paediatric radiotherapy, describing the historical development of the speciality and its organisation in the UK, the clinical pathway (including issues around immobilisation) and an overview of indications for radiotherapy in the paediatric population. Late effects of radiotherapy, their mitigation and the role of the late effects clinic are summarised.
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Affiliation(s)
- N Thorp
- Clatterbridge Cancer Centre, Bebington, Wirral, UK.
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37
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Abstract
Children that undergo treatment for cancer are at risk of suffering from subfertility or hormonal dysfunction due to the detrimental effects of radiotherapy and chemotherapeutic agents on the gonads. Cryopreservation of ovarian tissue prior to treatment offers the possibility of restoring gonadal function after resumption of therapy. Effective counseling and management of pediatric patients is crucial for preserving their future reproductive potential. The purpose of this article is to review recent literature and to revise recommendations we made in a 2007 article. Pediatric hemato-oncology, reproductive endocrinology, surgery, anesthesia and bioethics perspectives are discussed and integrated to propose guidelines for offering ovarian cryopreservation to premenarcheal girls with cancer.
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Eshelman-Kent D, Kinahan KE, Hobbie W, Landier W, Teal S, Friedman D, Nagarajan R, Freyer DR. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv 2011; 5:345-57. [PMID: 21894490 PMCID: PMC4528909 DOI: 10.1007/s11764-011-0192-8] [Citation(s) in RCA: 85] [Impact Index Per Article: 6.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/16/2010] [Accepted: 08/09/2011] [Indexed: 11/29/2022]
Abstract
PURPOSE To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer. METHODS One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007. RESULTS One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral. CONCLUSIONS Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.
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Affiliation(s)
- Debra Eshelman-Kent
- Division of Hematology-Oncology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229-3039, USA.
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Hovén E, Lannering B, Gustafsson G, Boman KK. The met and unmet health care needs of adult survivors of childhood central nervous system tumors: a double-informant, population-based study. Cancer 2011; 117:4294-303. [PMID: 21387277 DOI: 10.1002/cncr.26020] [Citation(s) in RCA: 25] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/22/2010] [Revised: 01/14/2011] [Accepted: 01/26/2011] [Indexed: 11/10/2022]
Abstract
BACKGROUND The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors. METHODS In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3. RESULTS Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory. CONCLUSIONS Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.
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Affiliation(s)
- Emma Hovén
- Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
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Rivero-Vergne A, Berrios R, Romero I. The Return to the Community After Cancer Treatment: From Safety to Reality Check. J Psychosoc Oncol 2011; 29:67-82. [DOI: 10.1080/07347332.2010.532300] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Affiliation(s)
| | | | - Ivonne Romero
- Inter American University, Psychology, San Juan, Puerto Rico
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Rebholz CE, von der Weid NX, Michel G, Niggli FK, Kuehni CE. Follow-up care amongst long-term childhood cancer survivors: A report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer 2011; 47:221-9. [DOI: 10.1016/j.ejca.2010.09.017] [Citation(s) in RCA: 29] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/21/2010] [Revised: 07/07/2010] [Accepted: 09/07/2010] [Indexed: 01/22/2023]
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42
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Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, von der Weid NX. Can health beliefs help in explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study. Psychooncology 2010; 20:1034-43. [DOI: 10.1002/pon.1823] [Citation(s) in RCA: 18] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/31/2010] [Revised: 06/25/2010] [Accepted: 06/25/2010] [Indexed: 11/11/2022]
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Affiliation(s)
- Vikky Riley
- University College London Hospitals NHS Foundation Trust, London NW1 2PG
| | - Rachael Hough
- University College London Hospitals NHS Foundation Trust, London NW1 2PG
| | - Jeremy Whelan
- University College London Hospitals NHS Foundation Trust, London NW1 2PG
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Michel G, Greenfield D, Absolom K, Eiser C. Satisfaction with follow-up consultations among younger adults treated for cancer: the role of quality of life and psychological variables. Psychooncology 2010; 20:813-22. [PMID: 20878873 DOI: 10.1002/pon.1783] [Citation(s) in RCA: 14] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/13/2009] [Revised: 02/17/2010] [Accepted: 04/20/2010] [Indexed: 11/06/2022]
Abstract
OBJECTIVE Given increased survival rates and treatment-related late effects, follow-up for cancer survivors is increasingly recommended. However, information about adverse events (e.g. possibility of late effects) may be distressing for the cancer survivor and lead to poor clinic attendance. Survivor satisfaction with appointments and the information provided are important. The Monitoring Process Model provides a theoretical framework to understand how survivors cope with threatening information, and consequences for follow-up care. Our aims were to describe satisfaction with routine follow-up and association between monitoring/blunting and satisfaction with care. METHODS Three hundred and forty-nine patients [aged 18-45 years with a history of haematological, germ cell, breast or childhood cancer, >5 years from diagnosis without relapse (>2 years for germ cell survivors) and with a follow-up appointment during the study period] were identified from hospital databases. Participants completed questionnaires before (T1) and after a routine appointment (T2). RESULTS Two hundred and seventy-nine (79.9%) questionnaires were completed at T1 and 198 (56.7%) at T2. Clinic satisfaction was higher with shorter waiting time, longer consultation and more topics discussed, but not associated with monitoring. High monitors reported more psychological problems, more importance of clinic attendance and greater value of support groups and professional counselling. CONCLUSIONS Satisfaction with follow-up is high among young adult cancer survivors. Follow-up was rated more highly by higher monitors, supporting previous findings that monitors seek out health care information. Provision of additional support services might increase satisfaction among survivors with psychological and social problems.
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Affiliation(s)
- Gisela Michel
- Department of Psychology, University of Sheffield, Western Bank, Sheffield, UK.
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Eshelman-Kent D, Gilger E, Gallagher M. Transitioning Survivors of Central Nervous System Tumors: Challenges for Patients, Families, and Health Care Providers. J Pediatr Oncol Nurs 2009; 26:280-94. [DOI: 10.1177/1043454209343209] [Citation(s) in RCA: 11] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
Survivors of central nervous system tumors (SCNST) are a growing group of cancer survivors who require risk-based, long-term health care due to the chemotherapy, surgery, and radiation they have received.Although treatment strategies are being developed to reduce morbidity and mortality, ultimately this subgroup of pediatric cancer survivors often faces moderate to severe late effects of their treatment.As a result, they will need lifelong health care that includes risk-based health care due to cancer treatment exposures as well as primary adult health care, including primary and secondary preventative care. The best way to accomplish lifelong health care for SCNST as they enter adulthood is not clearly defined. In this article, the authors plan to (1) present an overview of the complexities of health care problems that make transition challenging for SCNST; (2) review the evolving transition literature; (3) explore the barriers to successful transition; (4) discuss methods to facilitate transition; (5) describe approaches, strategies, and models for survivorship care in SCNST; (6) present issues for consideration when transitioning SCNST; and (7) provide information on transition-related resources.
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Affiliation(s)
- Debra Eshelman-Kent
- ATP Five Plus Cancer Survivor Program, Division of Hematology/Oncology, Cincinnati Children's Hospital Medical Center, 3333 Burnett Avenue, MLC 11013, Cincinnati, OH 45229-3039,
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Michel G, Greenfield D, Absolom K, Ross R, Davies H, Eiser C. Follow-up care after childhood cancer: Survivors’ expectations and preferences for care. Eur J Cancer 2009; 45:1616-23. [DOI: 10.1016/j.ejca.2009.02.026] [Citation(s) in RCA: 40] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/09/2008] [Revised: 02/13/2009] [Accepted: 02/26/2009] [Indexed: 11/25/2022]
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Guilcher GMT, Fitzgerald C, Pritchard S. A questionnaire based review of long-term follow-up programs for survivors of childhood cancer in Canada. Pediatr Blood Cancer 2009; 52:113-5. [PMID: 18821577 DOI: 10.1002/pbc.21701] [Citation(s) in RCA: 13] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/07/2022]
Abstract
BACKGROUND Major advances have been made in the treatment of childhood cancer; however, survivors of childhood cancer are at increased risk for morbidity and mortality. There is little literature regarding available long-term follow-up programs for survivors of childhood cancer. PROCEDURE In March 2007, 16 surveys were sent to pediatric hematology/oncology programs across Canada to determine what programs were available for survivors of childhood cancer, and the nature of such programs. RESULTS Of 15 participating centers, 13 (87%) have multi-disciplinary programs for the long-term follow-up of pediatric cancer survivors. Research databases were documented in 9/15 (60%) of centers to document late effects. Dedicated programs for adult survivors of childhood cancer were established in 8/15 (53%) of centers. Access to subspecialty care for survivors was rated as quite good. Concerns were raised by many participants about patients being lost to follow-up. Respondents indicated that primary care physicians appear to be under-represented within dedicated long-term follow-up programs. CONCLUSION Long-term follow-up programs for survivors of childhood cancer are available in 87% of Canadian pediatric oncology centers. While programs reported good access to care for childhood survivors, many adult survivors of childhood cancer have more limited timely access to services and patients are often lost to follow-up. New models of care incorporating primary care physicians are necessary due to growing numbers of survivors.
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Affiliation(s)
- G M T Guilcher
- Division of Pediatric Hematology, University of Calgary, Calgary, Canada.
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Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M, Heymans HSA. Defining chronic diseases and health conditions in childhood (0-18 years of age): national consensus in the Netherlands. Eur J Pediatr 2008; 167:1441-7. [PMID: 18340463 DOI: 10.1007/s00431-008-0697-y] [Citation(s) in RCA: 111] [Impact Index Per Article: 6.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/05/2007] [Accepted: 02/12/2008] [Indexed: 10/22/2022]
Abstract
A national consensus procedure was organised to define chronic diseases and health conditions in childhood. Based on (1) a systematic literature search on the definitions of chronic conditions in childhood and (2) a theoretical framework of determinants and indicators of health conditions, a definition of chronic conditions in childhood was proposed. This proposal was subsequently modified according to the comments received from 21 Dutch experts (clinicians, researchers and representatives of patient organisations) in two written consultation rounds and one national meeting, until consensus was reached. Consensus was attained on a definition consisting of four criteria: a disease or condition is considered to be a chronic condition in childhood if: (1) it occurs in children aged 0 up to 18 years; (2) the diagnosis is based on medical scientific knowledge and can be established using reproducible and valid methods or instruments according to professional standards; (3) it is not (yet) curable or, for mental health conditions, if it is highly resistant to treatment and (4) it has been present for longer than three months or it will, very probably, last longer than three months, or it has occurred three times or more during the past year and will probably reoccur. This definition was operationalised using the ICD-10 classification of the World Health Organisation (WHO; International Statistical Classification of Diseases and Related Health Problems [ICD], 10th revision, Geneva, Switzerland, 1992). By this systematic and thorough procedure, national consensus on a comprehensive definition of chronic conditions in children which can be used for epidemiological research was reached.
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Affiliation(s)
- Lidwine B Mokkink
- Psychosocial Department, Emma Children's Hospital, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
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Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol 2008; 9:232-8. [PMID: 18282804 DOI: 10.1016/s1470-2045(08)70034-2] [Citation(s) in RCA: 78] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022]
Abstract
BACKGROUND Since 75% of children with cancer will become long-term survivors, late effects of treatment are an ever increasing issue for patients. Paediatric oncologists generally agree that cancer survivors should be followed up for the remainder of their lives, but they might not be the most suitable health-care providers to follow up survivors into late adulthood. We designed a 3-year study to assess whether shared-care by paediatric oncologists and family doctors in the long-term follow-up of survivors of childhood cancers is feasible, whether a shared-care model is compatible with collection of data needed for registration of late effects, and how a shared-care model is assessed by survivors and family doctors. METHODS In 2004 and 2005, adult survivors of childhood cancers were randomly chosen from eligible patients diagnosed with childhood cancer (excluding CNS tumours) or Langerhans-cell histiocytosis between January, 1968, and December, 1997, and recalled to the long-term follow-up (LTFU) clinic at the University Medical Centre Groningen, Groningen, Netherlands, where they underwent physical and clinical assessments by an on-site family doctor (visit 1). At this visit, assessments were done according to guidelines of the UK Children's Cancer Study Group Late Effects Group, and late effects were graded by use of Common Terminology Criteria for Adverse Events (version 3). Follow-up assessments were done 1 year later in 2005 and 2006 by local family doctors (visit 2), who were asked to return data to the LTFU clinic. At this visit, the local family doctors were asked to complete a three-item questionnaire and patients were asked to complete a seven-item questionnaire about their satisfaction with the shared-care model. At the next consultation, which was planned for the end of the study (visit 3), the on-site family doctor advised patients about future follow-up on the basis of their individual risk of late effects. Main endpoints were numbers of participants, satisfaction ratings, and proportions of local family doctors who returned data that they obtained at visit 2 to the LTFU clinic. FINDINGS 133 individuals were chosen at random from 210 enrolled adult survivors. 123 of 133 (92%) randomly selected survivors and 115 of 117 (98%) of their family doctors agreed to participate in the share-care programme. 103 of 115 (90%) family doctors returned data to the LTFU clinic at visit 2. 89 of 101 (88%) of survivors were satisfied with this shared-care model, as were 94 of 115 (82%) family doctors; 18 of 115 (16%) family doctors had no views either way; and three of 115 (3%) family doctors were dissatisfied. INTERPRETATION Shared-care by paediatric oncologists and family doctors is feasible for long-term follow-up of adult survivors of childhood cancers.
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