|
1
|
Vandeleur DM, Palermo TM. Transition of care readiness among adolescents with chronic pain between 2021-2022 in a Nationally representative sample. THE JOURNAL OF PAIN 2025; 29:105333. [PMID: 39929354 PMCID: PMC11925652 DOI: 10.1016/j.jpain.2025.105333] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/21/2024] [Revised: 01/31/2025] [Accepted: 02/04/2025] [Indexed: 02/17/2025]
Abstract
Chronic pain impacts 11-33% of children and will continue into adulthood for over half of them. Transition of pain management to adult care is crucial given high risk of interruption of care which is associated with subsequent poor medical, social, and vocational outcomes. Yet the transition experience for these youth is poorly characterized. Using a sample from the 2021 and 2022 National Survey of Children's Health (conducted by parent report), we aimed to determine the prevalence of transition readiness among adolescents with chronic pain in the U.S. and estimate the association of readiness with biopsychosocial-cultural and health system characteristics. Of the 2584 adolescents aged 14-17 with chronic pain, 23.9% of adolescents met criteria for transition readiness. Using Poisson regression, we determined those more likely to meet criteria were older (PR 1.8 95%CI: 1.3, 2.6), female (PR 1.6 95% CI: 1.2, 2.2), White (Asian PR 0.4, 95% CI: 0.2, 0.9, Multi-racial PR 0.6 95% CI: 0.4, 0.9), and experienced shared decision making (aPR 1.7 95% CI: 1.1, 2.8). Fewer than half met criteria for medical home, effective care coordination, and adequate insurance. Poor mental health emerged as a concern with high levels of anxiety and/or depression (48%) and low levels of flourishing (42%). This is an important first step in demonstrating low transition readiness among adolescents with chronic pain and identifying mental health and healthcare continuity concerns. Future research should incorporate stakeholder perspectives and investigate pain specific factors relevant to transition readiness and investigate how readiness relates to transition outcomes. PERSPECTIVE: This article establishes low readiness to transition from pediatric to adult healthcare among adolescents with chronic pain and identifies disparities in readiness. Poor mental health and inadequate healthcare access were identified as factors which may impact transition intervention delivery. These findings can guide development and implementation of a transition intervention.
Collapse
Affiliation(s)
- Daron M Vandeleur
- Center for Child Health, Behavior & Development, Seattle Children's Research Institute, Seattle, WA, USA; Department of Anesthesiology & Pain Medicine, University of Washington, Seattle, WA, USA.
| | - Tonya M Palermo
- Center for Child Health, Behavior & Development, Seattle Children's Research Institute, Seattle, WA, USA; Department of Anesthesiology & Pain Medicine, University of Washington, Seattle, WA, USA
| |
Collapse
|
|
2
|
Ravnbøl CI, Altweck L, Schmidt S, Bistrup L, Borgwardt S, Arnfred SM, Jeppesen P, von Bismarck P, Nellegaard JB, Prehn-Kristensen A, Colic A. Enabling good transition processes from child to adult medical care: a study protocol. FRONTIERS IN HEALTH SERVICES 2025; 5:1520013. [PMID: 40083867 PMCID: PMC11903410 DOI: 10.3389/frhs.2025.1520013] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 10/30/2024] [Accepted: 01/29/2025] [Indexed: 03/16/2025]
Abstract
Hundreds of patients each year transfer from child to adult medical care when they become adults. The transfer in health care comes with a risk of interrupted treatment or a failure to follow treatment properly, which can have serious consequences for the physical and mental health and well-being of the young person, and for their future ability to engage in education, work or social life. The Child to Adult Transition project (CAT) is a cross-country and inter-disciplinary innovation and research project that aims to address this pertinent topic. CAT focuses on young people in rheumatology and mental health care in Denmark and Germany and develops transition programmes to support young persons and their parents in the transfer from child to adult medical care, while exploring how young people experience and reflect on this transition and their experiences of the CAT programs. The CAT study has a longitudinal, mixed-methods study design, surveying young patients (age 15-25 years), their parents/guardians, and health-care professionals via interviews (individual or group), field observations, and/or online surveys. At baseline, interviews will be conducted with 24-68 adolescents and young adults, 24-68 parents/guardians, and 24-68 health-care professionals in both countries and across disciplines. 13-14 observations will be made in three settings and, at baseline, 400 adolescents and young adults will receive the survey. Interviews and surveys will be repeated after six and 12 months. The study will focus on topics such as everyday life as a young patient, transition experiences, somatic, and mental health, and quality of life. The CAT project period runs from January 2023 to December 2025. Recruitment to the CAT study is ongoing and all ethical approval have been obtained from the different departmental sites and ethical committees. The project combines different medical disciplines (child, adolescent and adult rheumatology and mental health), academic disciplines (medicine, anthropology and psychology) as well as countries (Germany, Denmark). It also combines person-groups (young persons, parents, professionals) and methods (interviews, observations, surveys). This approach provides new perspectives on the medical, psychological and anthropological aspects of the complex nature of the medical transfer. The findings will feed into the guidelines on transitional care, can also be used in other medical disciplines, and can be prepared as popular publications and other media enabling a broader audience to be reached. The study protocol is registered on the Open Science Framework: https://osf.io/vdy9p.
Collapse
Affiliation(s)
- Camilla Ida Ravnbøl
- Department of People and Technology, Roskilde University, Roskilde, Denmark
- Research Department, Zealand University Hospital, Køge, Denmark
| | - Laura Altweck
- Department Health and Prevention, Institute of Psychology, University of Greifswald, Greifswald, Germany
- German Center for Child and Adolescent Health (DZKJ), Partner Site Greifswald/Rostock, Greifswald, Germany
| | - Silke Schmidt
- Department Health and Prevention, Institute of Psychology, University of Greifswald, Greifswald, Germany
- German Center for Child and Adolescent Health (DZKJ), Partner Site Greifswald/Rostock, Greifswald, Germany
| | - Lene Bistrup
- Department of Children and Youth, Slagelse, NSR Hospital, Slagelse, Denmark
| | - Stefan Borgwardt
- Department of Psychiatry and Psychotherapy, University Medical Center Schleswig-Holstein, Lübeck, Germany
| | | | - Pia Jeppesen
- Department of Child and Adolescent Psychiatry, Copenhagen University Hospital, Psychiatry Region Zealand, Roskilde, Denmark
| | - Philipp von Bismarck
- Clinic for Child and Adolescent Medicine, Universitätsklinikum Schleswig-Holstein, Kiel, Germany
| | | | - Alexander Prehn-Kristensen
- Institute for Child and Adolescent Psychiatry, Center for Integrative Psychiatry, Universitätsklinikum Schleswig-Holstein, Kiel, Germany
- Faculty of Psychology and Human Movement Science, Institute of Psychology, University of Hamburg, Hamburg, Germany
| | - Ada Colic
- Department of Rheumatology, Zealand University Hospital, Køge, Denmark
| |
Collapse
|
|
3
|
DeLacey S, Papadakis J, James S, Cudizio L, Ng SM, Lyons SK, Maruthur NM, Araszkiewicz A, Gomber A, Snoek FJ, Toft E, de Beaufort C, Weissberg-Benchell J. A Systematic Review of Interventions for the Transition to Adult Healthcare for Young People with Diabetes. Curr Diab Rep 2025; 25:21. [PMID: 39890661 DOI: 10.1007/s11892-025-01578-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 01/14/2025] [Indexed: 02/03/2025]
Abstract
PURPOSE OF REVIEW The transition to adult healthcare is difficult for young adults with diabetes, with declining glycemic control and reduced healthcare utilization. Efforts are needed to facilitate an effective transfer of care. Our study aimed to systematically review the literature and identify studies evaluating the effectiveness of interventions designed to improve transition readiness and/or the transfer to adult care, describe their characteristics and outcomes, and identify areas for future research. RECENT FINDINGS Twenty-six studies were included with one randomized control trial and many pre-post studies observing the impact of transition programs. Generally, interventions had no clear benefit on metabolic outcomes, with variable improvement in care satisfaction and transition readiness. Studies often did not satisfy quality metrics, report important contextual factors (e.g. race, ethnicity) or involve family members. The current literature on interventions to improve transition readiness and transfer of care outcomes in young adults with diabetes is relatively limited with few studies applying rigorous methods. Future studies should apply formal methodology, include both medical and psychosocial outcomes and account for patient and health system context.
Collapse
Affiliation(s)
- Sean DeLacey
- Ann and Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, USA.
| | - Jaclyn Papadakis
- Ann and Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, USA
| | - Steven James
- University of the Sunshine Coast, University of Melbourne, PetrieParkville, Australia
| | | | - Sze May Ng
- Edge Hill University, Mersey and West Lancashire Teaching Hospitals National Health Service Trust, Liverpool, UK
| | | | | | | | | | - Frank J Snoek
- Medical Psychology, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
| | - Eva Toft
- Karolinska Institute, Solna and Ersta Hospital, Stokholm, Sweden
| | - Carine de Beaufort
- University of Luxembourg, Luxembourg and Centre Hospitalier de Luxembourg, Luxembourg, Luxembourg
| | - Jill Weissberg-Benchell
- Ann and Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, USA
| |
Collapse
|
|
4
|
Papadakis JL, Suhs MC, O’Donnell A, Harris MA, Anderson LM, Garza KP, Weil L, Weissberg-Benchell J. Focused on the Family: Development of a Family-Based Intervention Promoting the Transition to Adult Health Care for Adolescents with Type 1 Diabetes. CHILDREN (BASEL, SWITZERLAND) 2024; 11:1304. [PMID: 39594879 PMCID: PMC11592509 DOI: 10.3390/children11111304] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/15/2024] [Revised: 10/17/2024] [Accepted: 10/23/2024] [Indexed: 11/28/2024]
Abstract
Background/Objectives: There is minimal evidence for current interventions promoting the transition to adult healthcare for youth with type 1 diabetes (T1D). Few interventions exclusively target modifiable individual and family-based factors that contribute to transition readiness. The purpose of this paper is to describe the development of Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT), a virtual family-based transition readiness intervention for adolescents with T1D. Methods: The development of BFST-DT occurred in three phases. In phase 1, focus groups with adolescents and young adults with T1D, their caregivers, and pediatric and adult diabetes providers were conducted to assess perspectives on common family challenges surrounding diabetes management and the transition to adult healthcare. In phase 2, focus group data were used to create video vignettes to be used as part of the intervention. In phase 3, BFST-DT was created through the adaptation of a previous evidence-based family intervention for families of adolescents with T1D. Results: BFST-DT is a virtual, 6-month family-based intervention involving four multi-family group meetings and six individual family meetings. It targets the modifiable and reciprocal interactions among individual and family transition readiness factors. Conclusions: BFST-DT is the first family-focused intervention promoting transition readiness in adolescents with T1D and is currently being tested. Intervention development benefits from prioritization of engagement with patients, caregivers, and providers, as their perspectives are invaluable for creating interventions that are relevant and acceptable to communities.
Collapse
Affiliation(s)
- Jaclyn L. Papadakis
- Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USA
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA
| | - Madeleine C. Suhs
- Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USA
| | - Alexander O’Donnell
- Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USA
| | - Michael A. Harris
- Harold Schnitzer Diabetes Health Center, Oregon Health & Science University, Portland, OR 97239, USA
| | | | - Kimberly P. Garza
- Department of Sociology and Public Health Studies, Roanoke College, Salem, VA 24153, USA
| | - Lindsey Weil
- Children’s Health Council, Palo Alto, CA 94304, USA
| | - Jill Weissberg-Benchell
- Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USA
- Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA
| |
Collapse
|
|
5
|
Cohen SP, Tran AH, Alexander R, Hart LC. Adolescent transition preparation around the COVID-19 pandemic: A cross-sectional study. HEALTH CARE TRANSITIONS 2024; 2:100066. [PMID: 39712626 PMCID: PMC11657162 DOI: 10.1016/j.hctj.2024.100066] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 05/10/2024] [Revised: 08/05/2024] [Accepted: 08/05/2024] [Indexed: 12/24/2024]
Abstract
Objective To compare preparation for transition in adolescents in the United States prior to and during the COVID-19 pandemic. Study Design We used data from the 2019 and 2021 National Survey of Children's Health to compare transition preparation before and after the COVID-19 pandemic among adolescents who had a medical care visit within the preceding year, controlled for relevant potential confounders. The association of demographic factors and survey year with a composite measure of adequate transition preparation was evaluated using univariable analysis and multivariable logistic regression. Results The difference in transition preparation was not significant when comparing 2019 to 2021 (9.25 % in 2019 vs. 8.67 % in 2021, p = .556), despite changes in potential confounders, such as worse caregiver mental or emotional health and fewer adolescents having insurance or a usual source of preventive care. Older adolescents (odds ratio for each year 1.321, 95 % confidence interval 1.196 - 1.459), females (odds ratio 1.153, 95 % confidence interval 1.02 - 1.304) were more likely to have received adequate transition preparation. Adolescents from Spanish-speaking homes were less likely than adolescents from English-speaking homes to have received adequate transition preparation (odds ratio 0.529, 95 % confidence interval 0.329 - 0.849). Conclusions The proportion of adolescents in the United States who received adequate preparation to transition to adult care did not change during the COVID-19 pandemic. However, in both years studied, only a small minority of adolescents in the United States were adequately prepared.
Collapse
Affiliation(s)
- Sarah P. Cohen
- Division of Pulmonary Medicine, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205, USA
- Department of Pediatrics, The Ohio State University, 700 Children’s Drive, Columbus, OH 43205, USA
- Division of Pulmonary, Critical Care, and Sleep Medicine, The Ohio State University Wexner Medical Center, 241 W 11th Ave Suite 5000, Columbus, OH 43201, USA
| | - Andrew H. Tran
- The Heart Center, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205, USA
| | - Robin Alexander
- Biostatistics Resource, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205, USA
| | - Laura C. Hart
- Department of Pediatrics, The Ohio State University, 700 Children’s Drive, Columbus, OH 43205, USA
- Primary Care Pediatrics, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205, USA
| |
Collapse
|
|
6
|
Hong HS, Im Y. Factors associated with healthcare transition readiness for adolescents with chronic conditions: A cross-sectional study. J Child Health Care 2024:13674935241248859. [PMID: 38669312 DOI: 10.1177/13674935241248859] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 04/28/2024]
Abstract
Healthcare transition readiness (HCTR) plays a vital role by fostering autonomy, self-management skills, and active involvement in healthcare, leading to positive health outcomes. This study aimed to examine the factors associated with HCTR in adolescents with chronic conditions (ACCs) including adolescents' autonomy, parental overprotection, and autonomy support from healthcare providers (HCPs). This descriptive study included 107 adolescents aged 14-19 years (median age: 17 years, IQR = 1), recruited from online communities and support groups in South Korea. Data were analyzed using hierarchical linear regression. Our research has shown that HCTR is linked to a lower level of parental overprotection (β = -0.46, 95% CI [-0.59, -0.33]) and higher levels of autonomy support from HCPs (β = 0.46, 95% CI [0.36, 0.56]). Among general characteristics, we also found that having a transfer plan to adult care (β = 0.24, 95% CI [0.04, 0.44]) is significantly associated with HCTR. This study contributes to a broader understanding of HCTR by examining its associated factors in ACC. The results emphasize the pivotal roles of parental involvement, healthcare provider support, and structured transition to adult care in enhancing HCTR. These findings underscore the need for comprehensive assistance to ensure successful healthcare transitions.
Collapse
Affiliation(s)
- Hye Seung Hong
- Department of Delivery Room, Chung-Ang University Gwang Myeong Hospital, Gwangmyeong-si, Republic of Korea
- Department of Nursing, Graduate School, Kyung Hee University, Republic of Korea
| | - YeoJin Im
- College of Nursing Science, East-West Nursing Research Institute, Kyung Hee University, Seoul, Republic of Korea
| |
Collapse
|
|
7
|
Ashaba S, Baguma C, Tushemereirwe P, Nansera D, Maling S, Tsai AC, Zanoni BC. A qualitative analysis of self-management needs of adolescents and young adults living with perinatally acquired HIV in rural, southwestern Uganda. PLOS GLOBAL PUBLIC HEALTH 2024; 4:e0003037. [PMID: 38498515 PMCID: PMC10947701 DOI: 10.1371/journal.pgph.0003037] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/20/2023] [Accepted: 02/25/2024] [Indexed: 03/20/2024]
Abstract
The number of adolescents living with HIV remains high in sub-Saharan Africa with poorer HIV treatment outcomes among adolescents and young adults compared to individuals in other age groups. For adolescents and young adults living with perinatally acquired HIV (AYLPHIV), the transition from pediatric to adult HIV care is a particularly high-risk period. We conducted a qualitative study to understand self-management needs of AYLPHIV in rural, southwestern Uganda as they prepare to transition to adult HIV care in order to inform relevant interventions that can enable AYLPHIV acquire the necessary skills to manage their illness as they age into adulthood. We conducted 60 in-depth interviews with AYLPHIV (n = 30), caregivers (n = 20) and health care providers (n = 10) from the HIV clinic at Mbarara Regional Referral Hospital. We used an interview guide that focused on perceptions about transition to adult HIV care, challenges with transitioning, navigating HIV care, and self-management needs for AYLPHIV (from the perspectives of AYLPHIV, their caregivers, and health care providers). We used thematic analysis to identify themes related to AYLPHIV's self-management skills. We identified several self-management needs that we grouped under two major themes; social support and empowerment for AYLPHIV to assume responsibility for their own health and to navigate adult HIV care independently. The sub-themes under social support were information support, instrumental support, and emotional support as the sub themes while sub-themes under empowerment included self-advocacy skills, interpersonal skills, self-care skills, and disclosure skills. Taken together, these findings indicate that AYLPHIV need to be supported and empowered to maximize their chances of successfully transitioning to adult HIV care. Support comes from peers and caregivers. AYLPHIV require knowledge about their HIV status and empowerment with different skills including: self-advocacy skills, interpersonal skills, self-care skills, and HIV status disclosure skills, in order to assume responsibilities related to independent HIV care.
Collapse
Affiliation(s)
- Scholastic Ashaba
- Department of Psychiatry Mbarara University of Science and Technology, Mbarara, Uganda
| | - Charles Baguma
- Global Health Collaborative, Mbarara University of Science and Technology, Mbarara, Uganda
| | - Patricia Tushemereirwe
- Global Health Collaborative, Mbarara University of Science and Technology, Mbarara, Uganda
| | - Denis Nansera
- Department of Pediatrics, Mbarara University of Science and Technology, Mbarara, Uganda
| | - Samuel Maling
- Department of Psychiatry Mbarara University of Science and Technology, Mbarara, Uganda
| | - Alexander C. Tsai
- Department of Psychiatry Mbarara University of Science and Technology, Mbarara, Uganda
- Center for Global Health and Mongan Institute, Massachusetts General Hospital, Boston, Massachusetts, United States of America
- Harvard Medical School, Boston, Massachusetts, United States of America
| | - Brian C. Zanoni
- Division of Infectious Disease, Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, United States of America
- Department of Pediatric Infectious Diseases, Children’s Healthcare of Atlanta, Atlanta, Georgia, United States of America
- Hubert Department of Global Health, Emory University Rollins School of Public Health, Atlanta, Georgia, United States of America
| |
Collapse
|
|
8
|
Bailey K, Avolio J, Lo L, Gajaria A, Mooney S, Greer K, Martens H, Tami P, Pidduck J, Cunningham J, Munce S, Toulany A. Social and Structural Drivers of Health and Transition to Adult Care. Pediatrics 2024; 153:e2023062275. [PMID: 38084099 DOI: 10.1542/peds.2023-062275] [Citation(s) in RCA: 5] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 09/08/2023] [Indexed: 01/02/2024] Open
Abstract
CONTEXT Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition. OBJECTIVES This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth. DATA SOURCES Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022. STUDY SELECTION Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included. DATA EXTRACTION SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance. RESULTS 101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion. LIMITATIONS Studies were heterogeneous and a meta-analysis was not possible. CONCLUSIONS Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.
Collapse
Affiliation(s)
- Katherine Bailey
- Temerty Faculty of Medicine
- Institute of Health Policy, Management and Evaluation
| | | | - Lisha Lo
- Centre for Quality Improvement and Patient Safety
| | - Amy Gajaria
- Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada
- Margaret and Wallace McCain Centre for Child, Youth, and Family Mental Health, Centre for Addiction and Mental Health, Toronto, Ontario, Canada
| | - Sarah Mooney
- Stollery Children's Hospital, Alberta Health Services, Edmonton, Alberta, Canada
- Alberta Strategy for Patient Oriented Research Support Unit
- Faculty of Nursing, Grant MacEwan University, Edmonton, Alberta, Canada
| | - Katelyn Greer
- Alberta Strategy for Patient Oriented Research Support Unit
| | - Heather Martens
- Patient and Community Engagement Research (PaCER) Program, University of Calgary, Calgary, Alberta,Canada
- Alberta Health Services, Edmonton, Alberta, Canada
- KickStand, Mental Health Foundation, Edmonton, Alberta, Canada
| | - Perrine Tami
- Public Health and Preventative Medicine, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada
| | | | | | - Sarah Munce
- Rehabilitation Sciences Institute
- Department of Occupational Science and Occupational Therapy
- KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada
| | - Alene Toulany
- Temerty Faculty of Medicine
- Institute of Health Policy, Management and Evaluation
- Department of Pediatrics, Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health and Evaluative Sciences, Sickkids Research Institute, Toronto, Ontario, Canada
| |
Collapse
|
|
9
|
Vacca M, Fernandes M, Veronese L, Ballesio A, Cerminara C, Galasso C, Mazzone L, Lombardo C, Mercuri NB, Liguori C. Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy. Brain Sci 2023; 14:21. [PMID: 38248236 PMCID: PMC10813513 DOI: 10.3390/brainsci14010021] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/17/2023] [Revised: 12/17/2023] [Accepted: 12/20/2023] [Indexed: 01/23/2024] Open
Abstract
BACKGROUND The transition to adult care for patients with epilepsy is a complicated clinical issue associated with adverse outcomes, including non-adherence to treatment, dropout of medical care, and worse prognosis. Moreover, youngsters with epilepsy are notably prone to emotional, psychological, and social difficulties during the transition to adulthood. Transition needs depend on the type of epilepsy and the epileptic syndrome, as well as on the presence of co-morbidities. Having a structured transition program in place is essential to reduce poor health consequences. A key strategy to optimize outcomes involves the use of transition readiness and associated factors assessment to implement the recognition of vulnerability and protective aspects, knowledge, and skills of these patients and their parents. Therefore, this study aims to provide a comprehensive framework of clinical and psychosocial aspects associated with the transition from pediatric to adult medical care of patients with epilepsy. METHODS Measures examining different aspects of transition readiness and associated clinical, socio-demographic, psychological, and emotional factors were administered to 13 patients with epilepsy (Mage = 22.92, SD = 6.56) with (n = 6) or without (n = 7) rare diseases, and a respective parent (Mage = 56.63, SD = 7.36). RESULTS patients showed fewer problems in tracking health issues, appointment keeping, and pharmacological adherence as well as low mood symptoms and moderate resiliency. Moreover, they referred to a low quality of sleep. Notably, parents of patients with rare diseases reported a lower quality of sleep as compared to the other group of parents. CONCLUSIONS Increasing awareness around transition readiness is essential to promote self-management skills of patients with epilepsy and their parents. Anticipating the period of transition could be beneficial, especially to prevent problematic sleep patterns and promote independence in health care management. Parents of patients with epilepsy and rare diseases should be monitored for their mental status which can affect patients' well-being.
Collapse
Affiliation(s)
- Mariacarolina Vacca
- Department of Psychology, Sapienza University of Rome, 00185 Rome, Italy; (M.V.); (A.B.); (C.L.)
| | - Mariana Fernandes
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
| | - Lorenzo Veronese
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
| | - Andrea Ballesio
- Department of Psychology, Sapienza University of Rome, 00185 Rome, Italy; (M.V.); (A.B.); (C.L.)
| | - Caterina Cerminara
- Child Neurology and Psychiatry Unit, Department of Neurosciences, Policlinico Tor Vergata Hospital, Viale Oxford 81, 00133 Rome, Italy;
| | - Cinzia Galasso
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
- Child Neurology and Psychiatry Unit, Department of Neurosciences, Policlinico Tor Vergata Hospital, Viale Oxford 81, 00133 Rome, Italy;
| | - Luigi Mazzone
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
- Child Neurology and Psychiatry Unit, Department of Neurosciences, Policlinico Tor Vergata Hospital, Viale Oxford 81, 00133 Rome, Italy;
| | - Caterina Lombardo
- Department of Psychology, Sapienza University of Rome, 00185 Rome, Italy; (M.V.); (A.B.); (C.L.)
| | - Nicola Biagio Mercuri
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
- Epilepsy Center, Neurology Unit, University Hospital of Rome “Tor Vergata”, 00133 Rome, Italy
| | - Claudio Liguori
- Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy; (M.F.); (L.V.); (C.G.); (L.M.); (N.B.M.)
- Epilepsy Center, Neurology Unit, University Hospital of Rome “Tor Vergata”, 00133 Rome, Italy
| |
Collapse
|
|
10
|
Fishman LN, Ding J. Optimizing the Transition and Transfer of Care in Pediatric Inflammatory Bowel Disease. Gastroenterol Clin North Am 2023; 52:629-644. [PMID: 37543405 DOI: 10.1016/j.gtc.2023.05.004] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/07/2023]
Abstract
Health care transition from pediatric to adult care has been identified as a priority in the field of medicine, especially for those with chronic illnesses such as inflammatory bowel disease (IBD). Although there is no universally accepted model of preparing the pediatric patient for transfer to adult care, transition care is best accomplished in a structured and consistent manner. The authors highlight concepts for optimizing the transition of care for patients with IBD, which include setting expectations throughout adolescence with the gradual nurturing of self-management skills, preparing and assessing of readiness for transfer, and enacting a successful transfer to adult care.
Collapse
Affiliation(s)
- Laurie N Fishman
- Division of Gastroenterology and Nutrition, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, USA; Harvard Medical School, 25 Shattuck Street, Boston, MA 02115, USA.
| | - Julia Ding
- Division of Gastroenterology and Hepatology, Boston University School of Medicine, 72 East Concord Street, Boston, MA 02118, USA
| |
Collapse
|
|
11
|
Girdwood TC, Goralski JL, Ferris ME, Lynn MR, Dellon EP, Kainz K, Toles MP. Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study. HEALTH CARE TRANSITIONS 2023; 1:100011. [PMID: 39712998 PMCID: PMC11657345 DOI: 10.1016/j.hctj.2023.100011] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 04/27/2023] [Revised: 07/08/2023] [Accepted: 07/20/2023] [Indexed: 12/24/2024]
Abstract
Purpose Medical advances have increased the life expectancy of adolescents and young adults (AYA) with cystic fibrosis (CF) and importance of high-quality health care transitions (HCT) from pediatric-to-adult focused health care. The purpose of this study was to describe perceptions of HCT readiness among caregivers and AYA with CF during the COVID-19 pandemic. Design and methods Using a qualitative descriptive design, caregivers and AYA aged 12-21 years old were recruited from three large CF care centers across the eastern U.S. Data were collected using an online questionnaire with open ended and closed ended questions. Survey topics were: perceptions of HCT readiness, actions to prepare for HCT, and the impact of COVID-19. Results were interpreted using an adapted framework of the Health Care Transition Research Consortium Model and qualitative content analysis. Results The sample included 73 caregivers (62 mothers) and 34 AYA (24 female, mean age 15.5 years). Three attributes of HCT readiness were identified from caregiver and AYA perceptions: (1) strong concerns that AYA lacked readiness to manage self-care needs in the future, (2) gaps in resources hindered ongoing efforts to enhance transition readiness, and (3) COVID changes created new barriers and facilitators to health care transition readiness. Conclusions Caregivers and AYA felt they lacked readiness for HCT, they worried about worsening outcomes in adult-focused care, and they were challenged by the onset of the COVID-19 pandemic. Practical implications These findings provide a solid description of perceived transition readiness during a pandemic that may enhance transitional care design.
Collapse
Affiliation(s)
- Tyra C. Girdwood
- University of North Carolina at Chapel Hill, School of Nursing, 120 N Medical Dr, Chapel Hill, NC 27599, USA
- Duke University, School of Nursing, 307 Trent Dr, Durham, NC 27710, USA
| | - Jennifer L. Goralski
- University of North Carolina at Chapel Hill, School of Medicine, 321 S Columbia St, Chapel Hill, NC 27514, USA
| | - Maria E. Ferris
- University of North Carolina at Chapel Hill, School of Medicine, 321 S Columbia St, Chapel Hill, NC 27514, USA
| | - Mary R. Lynn
- University of North Carolina at Chapel Hill, School of Nursing, 120 N Medical Dr, Chapel Hill, NC 27599, USA
| | - Elisabeth P. Dellon
- University of North Carolina at Chapel Hill, School of Medicine, 321 S Columbia St, Chapel Hill, NC 27514, USA
| | - Kirsten Kainz
- University of North Carolina at Chapel Hill, School of Social Work, 325 Pittsboro St Ste 3550, Chapel Hill, NC 27516, USA
| | - Mark P. Toles
- University of North Carolina at Chapel Hill, School of Nursing, 120 N Medical Dr, Chapel Hill, NC 27599, USA
| |
Collapse
|
|
12
|
Ruppe NM, Clawson AH, Ankney RL, Welch G, Mullins LL, Chaney JM. Depressive Symptom Trajectories Across Adolescence and Adulthood Among Individuals With Asthma. J Pediatr Psychol 2023; 48:572-582. [PMID: 37130344 PMCID: PMC10321385 DOI: 10.1093/jpepsy/jsad022] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/10/2022] [Revised: 04/05/2023] [Accepted: 04/06/2023] [Indexed: 05/04/2023] Open
Abstract
OBJECTIVE Individuals with asthma experience increased depressive symptoms, which is associated with deleterious health outcomes. No studies have examined depressive symptom trajectories among individuals with asthma despite increased risk. This study expanded prior literature by identifying the following: (1) depressive symptoms trajectories for individuals with and without asthma and (2) predictors of baseline levels and changes in symptoms across time for individuals with asthma. METHODS Adolescents with (N = 965) and without (N = 7,392) asthma self-reported on depressive symptoms (CESD-9) across development. Covariates included: demographics and persistence of asthma. Latent growth curve modeling (LGCM) was used to identify depressive symptom trajectories and their predictors. RESULTS A multigroup LCGM identified no significant differences between depressive symptom trajectories of individuals with and without asthma. Depressive symptoms followed a quadratic shape across time for individuals with asthma (Mintercept = 5.73, p < .00; Mlinear = -0.38,p < .001; Mquad = 0.03, p < .001), with a linear deceleration in depressive symptoms during adolescence and an acceleration of symptoms into adulthood. Next predictors of depressive trajectories among individuals with asthma were examined. Female sex (B = 0.58, p < .001), lower parent education (B = -0.57, p < .001), older age (B = 0.19, p < .001), and identifying as Black (B = 0.31, p = .04) were associated with greater baseline depressive symptoms. Older individuals exhibited faster linear symptom decelerations (B = -0.56, p < .001) and faster symptom accelerations (B = 0.73, p < .001). American Indian (AIAN) individuals exhibited faster linear symptom decelerations (B = -1.98, p = .005) and faster quadratic accelerations (B = 3.33, p = .007). DISCUSSION Our results suggest that the depressive symptom trajectories of individuals with asthma are curvilinear and similar to individuals without asthma. When examining predictors of depressive symptom trajectories for those with asthma, socioeconomic disadvantage and racial marginalization were associated with greater baseline depressive symptoms. Although AIAN youth demonstrated more favorable trajectories in adolescence, they also exhibited worse trajectories across young adulthood and adulthood. Findings suggest the need to better understand the impact of multilevel risk and protective factors on depressive symptoms trajectories for individuals with asthma, especially marginalized populations.
Collapse
Affiliation(s)
- Nicole M Ruppe
- Department of Psychology, Oklahoma State University, USA
- Center for Pediatric Psychology, Oklahoma State University, USA
| | - Ashley H Clawson
- Center for the Study of Tobacco, Department of Health Behavior and Health Education, Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, 4301 West Markham St., #820, Little Rock, AR 72205, USA
| | | | - Ginger Welch
- Department of Human Development and Family Science, Oklahoma State University, USA
| | - Larry L Mullins
- Department of Psychology, Oklahoma State University, USA
- Center for Pediatric Psychology, Oklahoma State University, USA
| | - John M Chaney
- Department of Psychology, Oklahoma State University, USA
- Center for Pediatric Psychology, Oklahoma State University, USA
| |
Collapse
|
|
13
|
Anikputa BC, Horner SD. Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents. HEALTH CARE TRANSITIONS 2023; 1:100007. [PMID: 39713007 PMCID: PMC11658205 DOI: 10.1016/j.hctj.2023.100007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 01/05/2023] [Revised: 05/20/2023] [Accepted: 06/26/2023] [Indexed: 12/24/2024]
Abstract
Background As children with special healthcare needs (SHCN) mature, they will transition from pediatric to adult healthcare providers. Close to 80% of adolescents with SHCN reported not receiving services necessary for transition to adult health care. The purpose of this study was to examine the perceptions of the transition experience of Adolescents and Young Adults (AYA) and their parents. Participants were diagnosed with either inflammatory bowel disease or a congenital heart condition. Methods A qualitative descriptive study was conducted with participants recruited from specialty pediatric care clinics that served patients with inflammatory bowel disease and congenital heart conditions. Study procedures (recruitment, consent, interview guide) were approved by the clinic staff, the hospital steering committee, and the University IRB. Interviews with AYA and with parents were conducted separately, transcribed, and then coded to identify themes. Results Interviews were completed with 8 AYA and 8 parent dyads. The identified themes were Transfer of Care, Mastery, and Support. The Transfer of Care theme reflected participants' worries about moving from their pediatric provider to the new adult provider. The Mastery theme revealed participants lacked confidence in their self-management skills. In the Support theme, participants wanted to be prepared and familiar with the transition process and to become comfortable in the new adult world. Conclusions Recommendations shared with clinic providers were to start conversations that directly addressed the transition process early, to provide information and to encourage the AYA to ask questions. In addition, the clinics could encourage AYA to start being responsible for the routine clinic visit paperwork with guidance from the parent.
Collapse
|
|
14
|
Rhee H, Choi Y, Tumiel-Berhalter L. Transition readiness in middle and older adolescents with asthma and associated factors: a descriptive study. J Asthma 2023; 60:991-999. [PMID: 36040871 PMCID: PMC10011012 DOI: 10.1080/02770903.2022.2119864] [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: 05/30/2022] [Revised: 08/04/2022] [Accepted: 08/29/2022] [Indexed: 10/14/2022]
Abstract
OBJECTIVE Asthma is the leading chronic health condition in adolescents, yet little is known about adolescents' readiness to transition into adult-focused care. This study examines transition readiness in middle and late adolescents with asthma. METHODS This cross-sectional descriptive study was conducted in 2019 with 41 adolescents (16-20 years old) with asthma. Transition readiness was measured with the 20-item Transition Readiness Assessment Questionnaire (TRAQ), which comprises five subscales. RESULTS Slight majorities of the sample comprised females (58.5%) and minority adolescents (56%). The sample's overall mean score on the TRAQ was 3.89 (±0.63; possible range 1-5). Managing daily activities was associated with talking with providers subscale (r = 0.36; p < 0.01), but not with other TRAQ subscales. Females reported greater scores for managing medications than did males, with mean = 4.2 vs. 3.6 (t = -2.15, p = 0.04). Transition readiness did not differ by race or health insurance type. However, scores on arranging transportation to medical appointments were lower among minority adolescents than whites (4.17 vs. 4.8, t = 2.56, p = 0.01). Better asthma control was associated with higher scores on talking with providers (r = -0.42; p < 0.01), but not with other subscale domains. CONCLUSIONS Overall transition readiness is suboptimal in middle to late adolescents with asthma. Adolescents' capacity to manage daily activities is not a valid indicator of transition readiness in disease self-management. It is important to consider gender, race, and asthma control in understanding transition readiness in adolescents with asthma.
Collapse
Affiliation(s)
- Hyekyun Rhee
- University of Texas at Austin School of Nursing, 1710 Red River St. Austin, TX 78712
| | - Yuri Choi
- University of Rochester School of Nursing, 601 Elmwood Ave, Box SON, Rochester, NY 14642
| | | |
Collapse
|
|
15
|
Mulkey M, Baggett AB, Tumin D. Readiness for transition to adult health care among US adolescents, 2016-2020. Child Care Health Dev 2023; 49:321-331. [PMID: 35993998 PMCID: PMC10087515 DOI: 10.1111/cch.13047] [Citation(s) in RCA: 12] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/04/2022] [Revised: 08/14/2022] [Accepted: 08/18/2022] [Indexed: 11/28/2022]
Abstract
OBJECTIVE Adolescence is a critical period of transition from paediatric to adult health care, but readiness for this transition has been described as low in the general adolescent population. We aimed to investigate whether transition readiness improved over time among US adolescents and to examine associations between demographic and clinical characteristics and transition readiness over time. METHODS Deidentified caregiver-reported repeated cross-sectional data from the 2016-2020 National Survey of Children's Health were analysed for caregiver-reported measures of transition readiness among adolescents age 12-17 years. Logistic regression was used to identify trends in transition readiness and change over time in factors associated with this outcome. RESULTS Among 55 022 adolescents represented in the five survey years, the proportion meeting a composite definition of transition readiness increased from 15% (95% confidence interval [CI]: 14%, 16%) in 2016 to 19% (95% CI: 17%, 20%) in 2020. After multivariable adjustment, each additional year was associated with 12% greater odds of caregiver-reported transition readiness (95% CI: +8%, +15%; P < 0.001), and transition readiness was more likely for girls, older adolescents and adolescents with special health care needs. Associations between adolescent characteristics and transition readiness did not change over the study period. CONCLUSIONS Population-level caregiver-reported transition readiness among US adolescents has increased but remains low. Factors previously associated with transition readiness (age, sex, race and ethnicity, family income and presence of special health care needs) have persisted over recent years.
Collapse
Affiliation(s)
- Mackenzie Mulkey
- Department of Anthropology, East Carolina University, Greenville, North Carolina, USA
| | - A Brooke Baggett
- Department of Pediatrics, Brody School of Medicine at East Carolina University, Greenville, North Carolina, USA.,ECU Health Medical Center, Greenville, North Carolina, USA
| | - Dmitry Tumin
- Department of Pediatrics, Brody School of Medicine at East Carolina University, Greenville, North Carolina, USA
| |
Collapse
|
|
16
|
Hornung RJ, Reed PW, Gunn AJ, Albert B, Hofman PL, Farrant B, Jefferies C. Transition from paediatric to adult care in young people with diabetes; A structured programme from a regional diabetes service, Auckland, New Zealand. Diabet Med 2023; 40:e15011. [PMID: 36398457 DOI: 10.1111/dme.15011] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/21/2022] [Revised: 10/26/2022] [Accepted: 11/16/2022] [Indexed: 11/19/2022]
Abstract
AIM To assess participation with a structured transition programme for adolescents with diabetes. METHODS Data from a regional cohort aged less than 16 years of age with type 1 (T1) and type 2 diabetes (T2D) in Auckland, New Zealand (2006-2016). Participation was defined as opting into a structured transition programme. RESULTS Five hundrend and twelve adolescents who were to be transferred to adult care (476 type 1 (T1D) and 36 type 2 (T2D)), overall participation rate of 83%, 86% (408/476) with T1D compared to 47% (17/36) with T2D. Within the cohort of T1D, participation rates for Māori and Pacific were lower (74% and 77%, respectively) than New Zealand Europeans (88%, p = 0.020 and p = 0.039, respectively). Lower socio-economic status was associated with reduced participation (77%) compared to higher socio-economic status (90%, p = 0.002). Of the 476 T1D who participated, 408 (96%) subsequently attended at least one adult service clinic ("capture"). 42% attended an adult clinic within the planned 3 months, 87% at 6 months and retention in adult clinics over 5 years of follow-up was 78%. By contrast, the 68 young people with T1D who did not participate in the structured transition had a capture rate of 78% (p < 0.001) and retention of 63% (p = 0.036). CONCLUSIONS In adolescents with diabetes, a formal transition from a paediatric service was associated with high rates of adult capture and subsequent retention in adult care over a 5-year follow-up period. Low socio-economic status, Māori or Pacific ethnicity and T2D were associated with reduced participation in the structured transition programme.
Collapse
Affiliation(s)
- Rosalie J Hornung
- Starship Children's Health, Paediatric Diabetes and Endocrinology Service, Auckland District Health Board, Auckland, New Zealand
| | - Peter W Reed
- Starship Children's Health Children's Research Centre, Auckland District Health Board, Auckland, New Zealand
| | - Alistair J Gunn
- Starship Children's Health, Paediatric Diabetes and Endocrinology Service, Auckland District Health Board, Auckland, New Zealand
- Department of Physiology, University of Auckland, Auckland, New Zealand
| | - Ben Albert
- Starship Children's Health, Paediatric Diabetes and Endocrinology Service, Auckland District Health Board, Auckland, New Zealand
| | - Paul L Hofman
- Starship Children's Health, Paediatric Diabetes and Endocrinology Service, Auckland District Health Board, Auckland, New Zealand
- The Liggins Institute, University of Auckland, Auckland, New Zealand
| | - Bridget Farrant
- Centre for Youth Health, Counties Manukau District Health Board, Auckland, New Zealand
| | - Craig Jefferies
- Starship Children's Health, Paediatric Diabetes and Endocrinology Service, Auckland District Health Board, Auckland, New Zealand
| |
Collapse
|
|
17
|
Infusion Appointment Self-Management Among Adolescents With Inflammatory Bowel Disease. J Pediatr Gastroenterol Nutr 2023; 76:319-324. [PMID: 36490378 DOI: 10.1097/mpg.0000000000003678] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 03/01/2023]
Abstract
OBJECTIVE Adolescents and young adults with inflammatory bowel disease (IBD) are in vulnerable positions for lapses in care as they transition from pediatric to adult practices. As biologic agents become a mainstay of treatment for these patients, it is important to ensure that responsibility for tasks related to scheduling, remembering, and transporting to infusion appointments for intravenous biologics are mastered prior to transition. This ensures preservation of therapy and disease control. METHODS We surveyed 236 adolescents and young adults with IBD aged 13-22 years receiving infusion-based biologic therapy at outpatient infusion visits at Boston Children's Hospital from February to May 2021. The questionnaire asked the ideal and actual ages that patients take responsibility for scheduling their infusion appointments, remembering their infusion appointments, and transporting to their infusion appointments. RESULTS We received 168 completed survey questionnaires. The ideal reported mean age for independence was 17.9 ± 1.7 years across all 3 tasks. Among 80 patients 18 years and older, 44 (55%) were independently scheduling their appointments, 63 (79%) were keeping track of their appointments, and 43 (54%) were getting to their appointments independently. CONCLUSIONS Adolescent and young adult patients with IBD ideally would independently manage biologic infusion related tasks prior to the age of 18 years, as this is the natural age that many move away from the homes of their parents/guardians. Our study demonstrates that just over half of patients 18 years or older independently manage their infusion appointments. This is an educational opportunity that has implications for health outcomes of patients with IBD.
Collapse
|
|
18
|
Sayegh CS, Iverson E, Newman C, Tanaka D, Olshansky EF, Wijaya C, Belzer M. Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness. Chronic Illn 2023; 19:65-80. [PMID: 34904870 DOI: 10.1177/17423953211067436] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/18/2023]
Abstract
OBJECTIVES Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. METHODS Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. RESULTS Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. DISCUSSION The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.
Collapse
Affiliation(s)
- Caitlin S Sayegh
- Division of Adolescent and Young Adult Medicine, 5150Children's Hospital Los Angeles, Los Angeles, California, USA.,USC University Center for Excellence in Developmental Disabilities, 5150Children's Hospital Los Angeles, Los Angeles, California, USA.,Department of Pediatrics, 12223University of Southern California Keck School of Medicine, Los Angeles, California, USA
| | - Ellen Iverson
- Division of Adolescent and Young Adult Medicine, 5150Children's Hospital Los Angeles, Los Angeles, California, USA.,Department of Pediatrics, 12223University of Southern California Keck School of Medicine, Los Angeles, California, USA
| | - Clarissa Newman
- Department of Population and Public Health Sciences, 12223University of Southern California, Los Angeles, California, USA
| | - Diane Tanaka
- Division of Adolescent and Young Adult Medicine, 5150Children's Hospital Los Angeles, Los Angeles, California, USA.,Department of Pediatrics, 12223University of Southern California Keck School of Medicine, Los Angeles, California, USA
| | - Ellen F Olshansky
- 115162Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, California, USA.,Sue & Bill Gross School of Nursing, 8788University of California Irvine, Los Angeles, California, USA
| | - Clarisa Wijaya
- Department of Psychology, 5116University of Southern California, Los Angeles, California, USA
| | - Marvin Belzer
- Division of Adolescent and Young Adult Medicine, 5150Children's Hospital Los Angeles, Los Angeles, California, USA.,Department of Pediatrics, 12223University of Southern California Keck School of Medicine, Los Angeles, California, USA
| |
Collapse
|
|
19
|
Trends and Disparities in Health Care Transition Preparation from 2016 to 2019: Findings from the US National Survey of Children's Health. J Pediatr 2022; 247:95-101. [PMID: 35598644 DOI: 10.1016/j.jpeds.2022.05.027] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/09/2021] [Revised: 03/28/2022] [Accepted: 05/16/2022] [Indexed: 11/24/2022]
Abstract
OBJECTIVES To evaluate national trends in health care transition preparation over a 4-year period using the National Survey of Children's Health (NSCH) and to identify and examine disparities in receipt of health care transition preparation over the study period. STUDY DESIGN Data from the NSCH, an annual serial cross-sectional survey conducted from 2016 to 2019, were examined. Caregivers answered questions regarding one of their children within each of a random sample of households across the US. The primary analysis examined trends in health care transition preparation based on the year of survey completion. A secondary analysis examined the associations of race/ethnicity, primary household language, insurance type, and children with special health care needs (CSHCN) with receipt of health care transition preparation. RESULTS We included data from 54 434 youths (20 708 in 2016, 8909 in 2017, 12 587 in 2018, and 12 230 in 2019) aged 12-17 years whose caregivers completed the NSCH between 2016 and 2019. The sample was weighted to be nationally representative based on weights provided by the NSCH. The proportion of youths receiving necessary health care transition preparation increased over the study period, from 14.8% in 2016 to 20.5% in 2019 (P < .001). Multivariable logistic regression demonstrated increased odds of receiving health care transition preparation in 2018 and 2019, as well as for White non-Hispanic youths, those with English or Spanish as a primary household language, those with private insurance, and CSHCN. CONCLUSIONS Although the proportion of youths receiving health care transition preparation has increased since 2016, the need for ongoing improvement and elimination of disparities in health care transition preparation remains.
Collapse
|
|
20
|
Abdwani R, Al Saadoon M, Jaju S, Elshinawy M, Almaimani A, Wali Y, Khater D. Age of Transition Readiness of Adolescents and Young Adults With Chronic Diseases in Oman: Need an Urgent Revisit. J Pediatr Hematol Oncol 2022; 44:e826-e832. [PMID: 34985041 DOI: 10.1097/mph.0000000000002389] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/23/2021] [Accepted: 11/30/2021] [Indexed: 11/26/2022]
Abstract
BACKGROUND The Ministry of Health in Oman and some of Gulf regions set the cut-off age of "transfer" from child health care to adult health care at 13 years of age. Within the existing health system in this part of the world, there is paucity of evidence on the appropriate age for health care "transfer" of adolescents and young adults to adult health care. Similarly, there is lack of a structured health care "transition" program. The objective of the study is to indirectly determine the appropriateness of present cut-off age of transfer by studying readiness for transition among Omani patients suffering from chronic hematological conditions. METHODS One hundred fifty adolescents and young adults with chronic hematological conditions were recruited from pediatric and adults clinics at Sultan Qaboos University Hospital. Participants were interviewed by a trained research assistant using the Arabic version of UNC TRxANSITION Scale to assess self-management skills and health related knowledge for transition. The score range is 0 to 10; the transition readiness of the patients is assessed as low (0 to 4), moderate (4 to 6), and high (6 to 10) respectively. The continuous variables were analyzed by parametric or nonparametric methods as appropriate. χ2 analysis was done to determine association of age groups within each sexes. RESULTS The study recruited 150 subjects (52.7% males) with 50 patients in each of the 3 age groups of 10 to 13 years (lower), 14 to 17 years (middle), and 18 to 21years (higher). The mean UNC TRxANSITION Scale scores of 5.14 (SD=1.27) in males in the total sample were significantly lower as compared with that of 5.67 (SD=1.50) in females (P=0.022). There is a steady increase in the overall median score with increase in age group, with median score of 4.42 in the lower, 5.26 in the middle and 6.81 in the higher age group (P<0.001). In section wise analysis, except for Adherence and Nutrition sections of the scale, all sections have statistically significant difference in the median scores across various age categories with lowest scores in the 10 to 13 age group and highest scores in the 18 to 21 years group. In the section related to reproduction, females had significantly higher mean ranks (31.52) and compared with 17.19 in males (P=0.001). The overall median transition score when analyzed separately for males and females across age groups showed that in the higher age group, 67% of males (P=0.008) and 90% females (P<0.001) have high transition scores compared with the other 2 groups. CONCLUSIONS Higher age was a significant predictor for transition readiness with median score being "moderate" in the lower and middle age groups, while the higher age groups scoring "high" on transition readiness. However, in the higher age group, the females (90%) showed better transition readiness than males (67%). The current age of transfer of 13 years is just at "moderate" levels. We recommend the need for establishing transition preparation program in Oman; increasing health transfer age in Oman to a cut-off age of 18 years and taking sex differences into consideration when providing interventions.
Collapse
Affiliation(s)
| | | | - Sanjay Jaju
- Family Medicine, College of Medicine and Health Sciences, Sultan Qaboos University
| | - Mohamed Elshinawy
- Departments of Child Health
- Department of Pediatrics, Faculty of Medicine, Alexandria University, Alexandria, Egypt
| | - Asmaa Almaimani
- General Foundation Program, Oman Medical Specialty Board, Muscat, Oman
| | - Yasser Wali
- Departments of Child Health
- Department of Pediatrics, Faculty of Medicine, Alexandria University, Alexandria, Egypt
| | - Doaa Khater
- Departments of Child Health
- Department of Pediatrics, Faculty of Medicine, Alexandria University, Alexandria, Egypt
| |
Collapse
|
|
21
|
Pruette CS, Ranch D, Shih WV, Ferris MDG. Health Care Transition in Adolescents and Young Adults With Chronic Kidney Disease: Focus on the Individual and Family Support Systems. Adv Chronic Kidney Dis 2022; 29:318-326. [PMID: 36084978 DOI: 10.1053/j.ackd.2022.02.004] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/09/2021] [Revised: 02/03/2022] [Accepted: 02/15/2022] [Indexed: 11/11/2022]
Abstract
Health care transition (HCT) from pediatric to adult-focused services is a longitudinal process driven by the collaboration and interactions of adolescent/young adult patients, their families, providers, health care agencies, and environment. Health care providers in both pediatric and adult-focused settings must collaborate, as patients' health self-management skills are acquired in the mid-20s, after they have transferred to adult-focused care. Our manuscript discusses the individual and family support systems as they relate to adolescents and young adults with chronic or end-stage kidney disease. In the individual domain, we discuss demographic/socioeconomic characteristics, disease complexity/course, cognitive capabilities, and self-management/self-advocacy. In the family domain, we discuss family composition/culture factors, family function, parenting style, and family unit factors. We provide a section dedicated to patients with cognitive and developmental disability. Furthermore, we discuss barriers for HCT preparation and offer solutions as well as activities for HCT preparation.
Collapse
Affiliation(s)
| | - Daniel Ranch
- Department of Pediatrics, Joe R. and Teresa Lozano Long School of Medicine, University of Texas Health at San Antonio, San Antonio, TX
| | | | | |
Collapse
|
|
22
|
Abdwani R, Al Sabri R, Al Hasni Z, Rizvi S, Al Wahshi H, Al Lawati B, Al Abrawi S, Wali Y, Al Sadoon M. Transition readiness in adolescents and young adults with chronic rheumatic disease in Oman: today's needs and future challenges. Pediatr Rheumatol Online J 2022; 20:27. [PMID: 35413991 PMCID: PMC9004032 DOI: 10.1186/s12969-022-00687-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/03/2022] [Accepted: 04/05/2022] [Indexed: 11/29/2022] Open
Abstract
INTRODUCTION In Oman, the ""transition" of health care of adolescents to adult care occurs at a young age, like many other GCC countries for cultural reasons. In order to address this concern, this study was conducted to determine the transition readiness skills of adolescents and young adults with childhood onset rheumatic diseases using a cross-cultural adaptation of the UNC TRxANSITION scale. METHODS We used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in 10 domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and identification of new health providers. The maximum transitional score of 10, was categorized as low (1-4), moderate (4 - 7) and high (7 -10) transitional readiness scores. RESULTS We enrolled 81 Omani adolescents and young adults (AYA) with chronic childhood onset rheumatic diseases. The cohort consisted of 79% females, with mean age of 15.8 years (± 3.53) and mean disease duration of 6.95 years (± 4.83). Our cohort's overall mean score is low 5.22 (±1.68). Only 14.8% of the cohort achieved a high transition score (≥7). Significant direct relationship was observed between age and the mean transition readiness score (r = .533, P < .001). The mean transition readiness score in the younger age group (10-13 years) was 4.07 (±1.29), the middle age group (14-18 years) was 5.43 (±1.27), while the older age group (19-21 year), was 6.12 (±1.81). Mean transition score of youngest age group was found to be significantly lower than the other two age groups (p = .003). CONCLUSION Overall, the transition readiness of AYA in Oman is low compared to other western countries indicating the need to initiate a health care transition preparation program for patients with chronic diseases across the country. In addition, we need to establish regional guidelines to address the transfer and transition policies to be in line to international recommendations. As transition continues after transfer, and is preferably guided by adolescent developmental status rather than chronological age, it would be preferable to refer to the transition and transfer policies 9rather than transitional age policy) to be in line to international recommendations.
Collapse
Affiliation(s)
- Reem Abdwani
- Department of Child Health, College of Medicine & Health Sciences, Sultan Qaboos University, P.O. Box 35, Al Khoudh 123, Muscat, Oman.
| | - Rumaitha Al Sabri
- Pediatric Residency Program, Oman Medical Specialty Board, Muscat, Oman
| | - Zawan Al Hasni
- General Foundation Program, Oman Medical Specialty Board, Muscat, Oman
| | - Seyad Rizvi
- grid.412846.d0000 0001 0726 9430Department of Public Health, College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman
| | - Humaid Al Wahshi
- grid.416132.30000 0004 1772 5665Department of Medicine, Royal Hospital Muscat, Muscat, Oman
| | - Batool Al Lawati
- grid.412846.d0000 0001 0726 9430Department of Medicine, College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman
| | - Safiya Al Abrawi
- grid.416132.30000 0004 1772 5665Department of Child Health, Royal Hospital Muscat, Muscat, Oman
| | - Yassir Wali
- grid.412846.d0000 0001 0726 9430Department of Child Health, College of Medicine & Health Sciences, Sultan Qaboos University, P.O. Box 35, Al Khoudh 123, Muscat, Oman
| | - Mona Al Sadoon
- grid.412846.d0000 0001 0726 9430Department of Child Health, College of Medicine & Health Sciences, Sultan Qaboos University, P.O. Box 35, Al Khoudh 123, Muscat, Oman
| |
Collapse
|
|
23
|
Okumura MJ, Kuo DZ, Ware AN, Cyr MH, White PH. Improving Health Care Transitions for Children and Youth With Special Health Care Needs. Acad Pediatr 2022; 22:S7-S13. [PMID: 35248248 DOI: 10.1016/j.acap.2021.03.014] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/29/2020] [Revised: 03/17/2021] [Accepted: 03/21/2021] [Indexed: 11/19/2022]
Abstract
Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.
Collapse
Affiliation(s)
- Megumi J Okumura
- University of California, San Francisco, Divisions of General Pediatrics, General Internal Medicine and Philip R. Lee Institute for Health Policy Studies (MJ Okumura), San Francisco, Calif.
| | - Dennis Z Kuo
- University at Buffalo, Division of General Pediatrics, Division of Developmental Pediatrics & Rehabilitation (DZ Kuo), Buffalo, NY
| | | | - Mallory H Cyr
- Healthcare Transition Consultant, Mallory Cyr, LLC (MH Cyr), Denver, Colo
| | - Patience H White
- George Washington University School of Medicine and Health Sciences, The National Alliance to Advance Adolescent Health (P White), Washington, DC
| |
Collapse
|
|
24
|
Dahir K, Dhaliwal R, Simmons J, Imel EA, Gottesman GS, Mahan JD, Prakasam G, Hoch AI, Ramesan P, Díaz-González de Ferris M. Health Care Transition From Pediatric- to Adult-Focused Care in X-linked Hypophosphatemia: Expert Consensus. J Clin Endocrinol Metab 2022; 107:599-613. [PMID: 34741521 PMCID: PMC8852209 DOI: 10.1210/clinem/dgab796] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/16/2021] [Indexed: 12/02/2022]
Abstract
CONTEXT X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, children and adults both experience the negative effects of XLH. Adolescents and young adults (AYAs) benefit from effective health care transition (HCT) preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. EVIDENCE ACQUISITION To produce the first expert recommendations on HCT preparation for AYAs with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. EVIDENCE SYNTHESIS We identified the need for psychosocial and access-related resources for disease education, genetic counseling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYAs and teach patients to advocate for their health care/access to specialists. CONCLUSION Clear HCT preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for HCT preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored HCT preparation program specifically for AYAs with XLH to aid in the effective transfer from pediatric- to adult-focused health care.
Collapse
Affiliation(s)
- Kathryn Dahir
- Vanderbilt University Medical Center, Nashville, Tennessee 37232, USA
| | - Ruban Dhaliwal
- SUNY Upstate Medical University, Syracuse, New York 13210, USA
| | - Jill Simmons
- Vanderbilt University Medical Center, Nashville, Tennessee 37232, USA
| | - Erik A Imel
- Indiana University School of Medicine, Indianapolis, Indiana 46202, USA
| | - Gary S Gottesman
- Shriners Hospitals for Children–St Louis, St Louis, Missouri 63110,USA
| | - John D Mahan
- Nationwide Children’s Hospital, Columbus, Ohio 43205, USA
| | | | - Allison I Hoch
- Ultragenyx Pharmaceutical Inc, Novato, California 94949, USA
| | | | | |
Collapse
|
|
25
|
Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease. Nurs Res 2022; 71:12-20. [PMID: 34469415 PMCID: PMC8732290 DOI: 10.1097/nnr.0000000000000550] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
BACKGROUND Transition to adult healthcare is a critical time for adolescents and young adults (AYAs) with sickle cell disease, and preparation for transition is important to reducing morbidity and mortality risks associated with transition. OBJECTIVE We explored the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition. METHODS This cross-sectional, correlational study was conducted with 50 family caregivers-AYAs dyads receiving care from a large comprehensive sickle cell clinic between October 2019 and February 2020. Participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire. Multiple linear regression was used to assess the relationships between decision-making involvement, self-efficacy, healthcare responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare. RESULTS Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA healthcare responsibility, those behaviors were inversely associated with feelings of overall transition readiness. Self-efficacy was positively associated with overall transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility and overall transition readiness. DISCUSSION While increasing AYAs' decision-making involvement may improve AYAs' healthcare responsibility, it may not reduce barriers of feeling unprepared for the transition to adult healthcare. Facilitating active AYA involvement in decision-making regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.
Collapse
|
|
26
|
Johnson LE, Lee MJ, Turner-Moore R, Grinsted Tate LR, Brooks AJ, Tattersall RS, Jones GL, Lobo AJ. Systematic Review of Factors Affecting Transition Readiness Skills in Patients with Inflammatory Bowel Disease. J Crohns Colitis 2021; 15:1049-1059. [PMID: 33252669 DOI: 10.1093/ecco-jcc/jjaa245] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/01/2023]
Abstract
BACKGROUND AND AIMS The incidence of inflammatory bowel disease [IBD] diagnosed before adulthood is increasing worldwide. Transition from paediatric to adult health care requires certain skills. The aim of this study was to identify factors affecting these skills. METHODS This review was registered on the PROSPERO database [CRD42019152272]. Inclusion criteria were: 1] studies of factors affecting transition readiness skills in patients with IBD; 2] written in English; 3] published since 1999. MEDLINE, CINAHL, and PsychINFO databases were searched between 1999 and 2019. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. RESULTS Searches identified 822 papers. Sixteen papers were included. Age was positively associated with skills including disease knowledge and performing self-management behaviours [14 studies]. Improvement often occurs at 18; however, skill deficiency may still remain. Increased self-efficacy [confidence] was associated with greater disease knowledge and performing self-management behaviours [three studies]. Self-efficacy was positively correlated with transition duration [two studies] and health-related quality of life [r = 0.57, p <0.001] [one study], negatively correlated with depression [r = -0.57, p <0.001] and anxiety [r = -0.23, p = 0.03] [one study], and was associated with higher education level [two studies] and a family history of IBD [one study]. Females had higher self-management scores [three studies], and greater health care satisfaction was significantly associated with higher knowledge [one study]. Greater transition communication improved knowledge, self-management, and overall transition readiness [two studies]. CONCLUSIONS Potentially modifiable factors have been identified that could be supported in the transitioning IBD population, to improve transition readiness. Identification of those with non-modifiable characteristics associated with poor readiness may aid targeted support.
Collapse
Affiliation(s)
| | - Matthew J Lee
- Department of Oncology and Metabolism, University of Sheffield Medical School, Sheffield, UK
- Academic Directorate of General Surgery, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Rhys Turner-Moore
- Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, UK
| | | | - Alenka J Brooks
- Academic Department of Gastroenterology, University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Rachel S Tattersall
- Department of Rheumatology, Sheffield Teaching Hospitals NHS Foundation Trust and Sheffield Children's Hospitals, Sheffield, UK
| | - Georgina L Jones
- Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, UK
| | - Alan J Lobo
- Academic Department of Gastroenterology, University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| |
Collapse
|
|
27
|
Rupp S, Fair C, Korycinski H, Ferris M. "It's What I Have, It's Not Who I Am": A Qualitative Study of Social Support in Education/Employment Settings and Transition Readiness of Young Adults with End-Stage Renal Disease. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2021; 18:ijerph18126596. [PMID: 34205273 PMCID: PMC8296423 DOI: 10.3390/ijerph18126596] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 04/28/2021] [Revised: 06/14/2021] [Accepted: 06/16/2021] [Indexed: 11/16/2022]
Abstract
This study investigated the role of social support in self-management within education/employment settings for young adults (YA) with end-stage renal disease (ESRD) as well as barriers and facilitators to social support formation. Nineteen YA with ESRD (mean age 24 years, 10 males, 9 African American) recruited from a pediatric nephrology clinic in the Southeast United States completed in-person semi-structured interviews. The grounded theory was used to analyze transcribed interviews to identify emergent themes. Absences hindered participants' school/work attendance and performance. Social support was necessary for illness management and success in academic/vocational settings. Facilitators to establishing support included self-awareness and view of disclosure as a way to access accommodations. Barriers included fear of judgment, job loss, and the belief that the condition was too personal to disclose. Educators and employers must acknowledge the needs of YA with ESRD to promote development and educational/vocational success. Fear of disclosure and poor disease self-management interferes with accessing social support. Communication skills and autonomy in patients' medical and personal lives can promote success in education and employment settings.
Collapse
Affiliation(s)
- Sophie Rupp
- Department of Public Health Studies, Elon University, Elon, NC 27244, USA; (S.R.); (H.K.)
| | - Cynthia Fair
- Department of Public Health Studies, Elon University, Elon, NC 27244, USA; (S.R.); (H.K.)
- Correspondence: ; Tel.: +1-336-278-6547
| | - Hannah Korycinski
- Department of Public Health Studies, Elon University, Elon, NC 27244, USA; (S.R.); (H.K.)
| | - Maria Ferris
- UNC Self-Management and Transitions (STARx) Program, UNC-Chapel Hill, Chapel Hill, NC 27599, USA;
- The UNC Pediatric Diagnostic and Complex Care Program, UNC-Chapel Hill, Chapel Hill, NC 27599, USA
| |
Collapse
|
|
28
|
Traino KA, Sharkey CM, Perez MN, Bakula DM, Roberts CM, Chaney JM, Mullins LL. Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis. J Pediatr Psychol 2021; 46:197-207. [PMID: 33236079 DOI: 10.1093/jpepsy/jsaa099] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/13/2020] [Revised: 09/10/2020] [Accepted: 09/29/2020] [Indexed: 01/22/2023] Open
Abstract
OBJECTIVE To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). METHODS Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. RESULTS Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. CONCLUSIONS The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.
Collapse
|
|
29
|
Abstract
OBJECTIVES Adolescents and young adults (AYAs) are at risk for disease exacerbations and increased health care utilization around the time of transition to adult care. Our aim was to identify risk factors predictive of a suboptimal transition for AYA with inflammatory bowel disease. MATERIALS AND METHODS We performed a retrospective chart review of patients with pediatric inflammatory bowel disease transferred to adult care from our institution in 2016 and 2017, recording demographic, psychosocial, and disease-specific data. Post-transfer data were obtained via the health care information exchange from the adult provider within our electronic medical record. We defined suboptimal transition as either a return to pediatric care or requiring care escalation within 1 year of transfer. RESULTS Out of 104 subjects 37 (36%) were found to have had a suboptimal transition. Our models suggest that a suboptimal transition is associated with several risk factors including any mental health diagnosis (odds ratio [OR] = 4.15; 95% confidence interval [95% CI]: 1.18-14.59), history of medication nonadherence (OR = 5.15 [95% CI: 1.52-17.42]), public insurance (OR = 6.60 [95% CI: 1.25-34.96]), higher Physician Global Assessment score at time of transition (OR = 6.64 [95% CI: 1.60-27.58], and short Pediatric Crohn Disease Activity Index scores (OR = 1.17 [95% CI: 1.03-1.33]). Higher hemoglobin levels at transition were protective (OR = 0.69 [95% CI: 0.48-0.98]). Age at time of transition, disease duration, and medication type at transition were not found to be associated with transition outcomes. CONCLUSION AYA with public insurance, a mental health history, medication nonadherence, and evidence of active disease may be at greater risk for suboptimal and poor health outcomes at transition.
Collapse
|
|
30
|
Smith AW, Gutierrez-Colina AM, Roemisch E, Hater B, Combs A, Shoulberg AM, Modi AC. Modifiable factors related to transition readiness in adolescents and young adults with epilepsy. Epilepsy Behav 2021; 115:107718. [PMID: 33440273 DOI: 10.1016/j.yebeh.2020.107718] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/08/2020] [Revised: 11/25/2020] [Accepted: 12/14/2020] [Indexed: 01/12/2023]
Abstract
OBJECTIVE To characterize transition readiness in adolescents and young adults (AYAs) with epilepsy and validate the social-ecological model of AYA readiness to transition (SMART) in a sample of AYAs with epilepsy. METHODS This cross-sectional study included typically developing youth with epilepsy 13-25 years old seen in a comprehensive epilepsy center. Adolescents and young adults completed measures of transition readiness (Transition Readiness Assessment Questionnaire; TRAQ), epilepsy knowledge, epilepsy self-management, developmental factors, and emotional and behavioral functioning. Adolescents and young adults also completed a measure of their relationship quality with healthcare providers. Caregiver report was included when available. RESULTS Participants included 82 AYAs (Mage = 17.3 ± 2.8; 86.6% White Non-Hispanic, 53.7% females) with epilepsy. Transition Readiness Assessment Questionnaire scores (M = 3.33, SD = 0.86) were correlated with modifiable and non-modifiable factors: age (r = 0.66, p < 0.001), income (r = -0.23, p = 0.04), AYA cognitive problems (r = 0.24, p = 0.03), AYA knowledge (r = 0.31, p = 0.005), AYA expectations (r = 0.26, p ≤ 02), AYA inattention (r = -0.24, p = 0.03), AYA executive dysfunction (r = 0.25, p = 0.02), caregiver-reported AYA odd behaviors (r = -0.25, p = 0.036), and caregiver-reported AYA communication problems (r = 0.25, p = 0.04). Transition Readiness Assessment Questionnaire scores were higher in AYAs who had seen adult providers for general healthcare issues (e.g., primary care), but were not related to other demographic (e.g., minority status, insurance), medical (years since diagnosis, type of epilepsy, polytherapy, seizure frequency), developmental (e.g., adaptive skills, cognitive functioning) or emotional/behavioral factors (e.g., skills, relationship with the provider, psychosocial functioning). Linear regression including variables significantly correlated with the outcome of transition readiness (F (7, 59) = 9.70, p < 0.001) explained 54% of the variance. Specifically, age was the only significant model predictor. SIGNIFICANCE Transition readiness in AYAs with epilepsy was predicted by non-modifiable (e.g., age) and correlated with modifiable factors (e.g., knowledge, psychosocial/cognitive functioning). Providers must better prepare patients prior to transfer, and future research should use an epilepsy-specific measure of transition readiness to identify targets for intervention.
Collapse
Affiliation(s)
| | | | | | | | | | | | - Avani C Modi
- Cincinnati Children's Hospital Medical Center, United States
| |
Collapse
|
|
31
|
Bolesta S, Berger A, Black E, Greskovic GA, Davis TW. Disease and medication burden of medically complex adolescents seen in an interdisciplinary transitional care clinic. J Pediatr Rehabil Med 2021; 14:605-612. [PMID: 34864698 DOI: 10.3233/prm-200705] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Abstract
PURPOSE Transitional care for adolescents with complex diseases, who are entering adulthood, is challenging. The purpose of this study is to quantify the disease and medication burden of this population, who are transitioning though an interdisciplinary specialty clinic. METHODS This study is a retrospective observational study of all patients seen in a transitional care clinic between July 2012 and March 2015. The main outcomes assessed included disease state and medication burden. Descriptive statistics, along with the paired t-test and McNemar's test, were used. RESULTS The study cohort included 216 patients. The median patient age was 20.7 years, and the median number of clinic encounters was 6. Patients had at least 1 of 8 primary diagnoses. On average, patients took medications from 5 classes and used 3 dose forms. Among 163 patients who had medication reconciliation performed, the average number of medication classes increased by 0.44±1.53 (p = 0.0003). There was an average increase of 3.70%(SD±36.31%; p = 0.27) in the number of required medication lab assessments ordered for patients who had medication reconciliation performed. CONCLUSION There is a high disease and medication burden among adolescent patients with complex disease states who are to transition to adult care.
Collapse
Affiliation(s)
- Scott Bolesta
- Department of Pharmacy Practice, Wilkes University, Wilkes-Barre, PA, USA
| | - Andrea Berger
- Department of Population Health Sciences Geisinger, Geisinger Health System, Danville, PA, USA
| | - Emily Black
- Vanderbilt Discharge and Transitions, Vanderbilt University Medical Center, Nashville, TN, USA
| | | | - Thomas W Davis
- Medicine Institute, Geisinger Health System, Danville, PA, USA
| |
Collapse
|
|
32
|
Abstract
Disparities in prevalence, disease severity, physical and mental morbidity, and mortality exist in childhood-onset systemic lupus (cSLE) that lead to worse outcomes in children with systemic lupus erythematosus from socially disadvantaged backgrounds. Important gaps exist in knowledge regarding many individual race/ethnicities across the globe, the interaction between race/ethnicity and poverty, and drivers for identified disparities. Large cSLE registries will facilitate investigating disparities in groups of patients that have yet to be identified. Social-ecological models can inform approaches to investigate, monitor, and address disparities in cSLE.
Collapse
|
|
33
|
Ma J, Yu Q, Ding W, Zhang T, Zhang Y. Psychometric properties of the 'Self-Management and Transition to Adulthood with R x = Treatment Questionnaire' in Chinese children and young people with chronic diseases. Int J Nurs Pract 2020; 27:e12880. [PMID: 32935431 DOI: 10.1111/ijn.12880] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/16/2019] [Revised: 05/26/2020] [Accepted: 07/16/2020] [Indexed: 11/30/2022]
Abstract
AIMS The aims of this work were to translate, culturally adapt and evaluate the reliability and validity of the Chinese version of the Self-Management and Transition to Adulthood with Rx = Treatment Questionnaire. BACKGROUND Children and young people with chronic diseases are expected to start self-managing their diseases and have a smooth and coordinated transition from paediatric- to adult-oriented care. DESIGN This study involved the cultural adaptation of a questionnaire into Chinese and examined its factor structure. METHODS This was a multicentre cross-sectional study of children and young people/adolescents (8-18 years) who were diagnosed with chronic diseases in China from June 2016 to December 2018. Exploratory and confirmatory factor analyses were performed to analyse the questionnaire's validity. RESULTS Four major factors were identified in the Chinese version of the questionnaire, and it had a good fit to the target population. The internal reliability was good. All factors were positively and strongly correlated with the total score. The t test revealed that the Medication Management score was not significantly different between two age groups (8-11 and 12-18 years), but the scores of the other factors and overall scale were lower in the 8-11 years age group. CONCLUSION The Chinese version of the questionnaire has good reliability and validity in the Chinese context.
Collapse
Affiliation(s)
- Jiali Ma
- Shanghai Jiao Tong University School of Nursing, Shanghai, China
| | - Qinglin Yu
- Department of Nephrology and Rheumatology, Shanghai Children's Hospital, Shanghai, China
| | - Wenwen Ding
- Neonatal Intensive Care Unit, Zhejiang University School of Medicine Sir Run Shaw Hospital, Hangzhou, China
| | - Taomei Zhang
- Shanghai Jiao Tong University School of Nursing, Shanghai, China
| | - Ying Zhang
- Shanghai Jiao Tong University School of Nursing, Shanghai, China.,Nursing Management Research Center of China Hospital Development Institute, Shanghai Jiao Tong University, Shanghai, China
| |
Collapse
|
|
34
|
Parfeniuk S, Petrovic K, MacIsaac PL, Cook KA, Rempel GR. Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review. JOURNAL OF TRANSITION MEDICINE 2020. [DOI: 10.1515/jtm-2020-0020] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/07/2023] Open
Abstract
AbstractBackgroundTransition from pediatric to adult healthcare for adolescents with chronic health conditions has emerged as a critical period influencing health outcomes. Suitable transition readiness measures are necessary to facilitate effective planning. Currently, there is little consensus about well-validated transition readiness measures. The purpose of this systematic review was to identify best practices in transition readiness measurement for adolescents and young adults with chronic health conditions.Data sourcesAcademic databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, Google Scholar and Athabasca University Library’s Discover.Study selectionArticles were included that discussed the development and psychometric properties of transition readiness measures for adolescents and young adults (11–25 years) with chronic health conditions and/or that utilized a previously developed measure.Data extractionThe primary and secondary reviewers extracted data from the selected articles as per the data extraction tool developed for this review.ResultsForty-eight articles, representing 19 tools, were included in the review. Ten of the tools were disease-specific; nine were disease-neutral. According to the Cohen criteria, eight measures were “well-established assessments”. The Transition Readiness Assessment Questionnaire was deemed the best measure of transition readiness available. The literature search included only articles published in peer-reviewed journals; measures nearing completion or awaiting publication were not included. In addition, only English manuscripts were included, many from North America.ConclusionsDespite national practice guidelines and ongoing policy development, there is slow movement towards achieving a gold standard or best-practice measure of transition readiness.
Collapse
Affiliation(s)
| | | | | | | | - Gwen R. Rempel
- Faculty of Health Disciplines, Athabasca University, 1 University Drive, Athabasca, AB T9S 3A3, Canada, Tel.: +855-833-5699
| |
Collapse
|
|
35
|
Willis E, McDonagh JE. Shifting the mindset-adolescent and young adult rheumatology in transition. THE LANCET. RHEUMATOLOGY 2020; 2:e236-e244. [PMID: 38268158 DOI: 10.1016/s2665-9913(19)30163-8] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/16/2019] [Revised: 12/12/2019] [Accepted: 12/20/2019] [Indexed: 01/26/2024]
Abstract
Almost 30 years have passed since publication of the first reports acknowledging the crucial importance of transitional care for adolescents and young adults with chronic disease, but universal implementation has yet to be achieved. Progress has undoubtedly been made, with increasing evidence for best practice in transitional care. However, translation of research and guidance into clinical practice continues to be challenging. Neuroscience advances in understanding the changes occurring in the adolescent brain demand that the third phase of transition (ie, post-transfer to adult services) is given further attention, with recognition that transfer itself is not the end of the transition process. The complex, often unwieldy health systems delivering care must also be considered. Paediatric and adult rheumatology practitioners need to collaborate not only with each other, but also with practitioners in other disciplines, specialties, and agencies, to plan and commission rheumatology services that are responsive to adolescents and young adults. A shift in approach from focusing on health transition towards developmentally appropriate health care has the potential to improve the care provided during this vulnerable life stage, increasing the likelihood of continuing engagement of patients in their own health care into adulthood and thereby improving health outcomes.
Collapse
Affiliation(s)
- Emily Willis
- Department of Paediatric and Adolescent Rheumatology, Royal Manchester Children's Hospital, Manchester University Hospitals NHS Trust, Manchester, UK
| | - Janet E McDonagh
- Department of Paediatric and Adolescent Rheumatology, Royal Manchester Children's Hospital, Manchester University Hospitals NHS Trust, Manchester, UK; Versus Arthritis Centre for Epidemiology, and Centre for Musculoskeletal Research, University of Manchester, Manchester, UK; NIHR Manchester Biomedical Research Centre, Manchester, UK.
| |
Collapse
|
|
36
|
Eaton CK, Eakin MN, Coburn S, Pruette CS, Brady TM, Fivush BA, Mendley S, Tuchman S, Riekert KA. Patient Health Beliefs and Characteristics Predict Longitudinal Antihypertensive Medication Adherence in Adolescents With CKD. J Pediatr Psychol 2020; 44:40-51. [PMID: 30252092 DOI: 10.1093/jpepsy/jsy073] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2018] [Accepted: 08/21/2018] [Indexed: 11/14/2022] Open
Abstract
Objective To investigate longitudinal associations of health beliefs, which included self-efficacy, outcome expectancies, and perceived barriers, and demographic risk factors (i.e., age, gender, race, and family income) with antihypertensive medication adherence in adolescents with chronic kidney disease (CKD) over 24 months. Method The sample included 114 adolescents (M age = 15.03 years, SD = 2.44) diagnosed with CKD. Adolescents reported their self-efficacy for taking medications, medication outcome expectancies, and barriers to adherence at baseline and 12 and 24 months after baseline. Antihypertensive medication adherence was assessed via electronic monitoring for 2 weeks at baseline and 6, 12, 18, and 24 months after baseline. Results Adherence increased and then decreased over the 2-year study period (inverted U-shape). Self-efficacy, outcome expectancies, and barriers did not change over time. Older adolescent age, female gender, African American race, <$50,000 annual family income, and public health insurance were associated with lower adherence. However, family income was the primary demographic risk factor that predicted adherence over time (≥$50,000 annual family income was longitudinally associated with higher adherence). Higher self-efficacy and more positive and less negative outcome expectancies across time were also associated with higher antihypertensive medication adherence across time. Conclusions Clinical interventions should be developed to target medication self-efficacy and outcome expectancies to improve long-term antihypertensive medication adherence in adolescents with CKD. Family income may be considered when conceptualizing contextual factors that likely contribute to adolescents' consistent challenges with medication adherence over time.
Collapse
Affiliation(s)
| | | | - Shayna Coburn
- Children's National Health System.,George Washington School of Medicine
| | | | | | | | - Susan Mendley
- National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
| | | | | |
Collapse
|
|
37
|
Ayuk AC, Onukwuli VO, Obumneme-Anyim IN, Eze JN, Akubuilo UC, Mbanefo NR, Iloh KK, Ezenwosu OU, Odetunde IO, Okafor HU, Emodi IJ, Oguonu T. Pre-Transition Readiness in Adolescents and Young Adults with Four Chronic Medical Conditions in South East Nigeria - An African Perspective to Adolescent Transition. ADOLESCENT HEALTH MEDICINE AND THERAPEUTICS 2020; 11:29-38. [PMID: 32210656 PMCID: PMC7073443 DOI: 10.2147/ahmt.s238603] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Subscribe] [Scholar Register] [Received: 11/14/2019] [Accepted: 02/12/2020] [Indexed: 11/23/2022]
Abstract
Introduction When a child reaches a certain age, he or she moves over to the adult physician. For this to maximally benefit the child, there has to be a process of equipping the child with skills required for taking on more responsibilities. Transitioning involves a process in which the adolescent with chronic illness is prepared ahead of time to enable them to eventually transfer to adult care with good outcomes. In high-income countries with well-organized health financing, the transitioning process begins as early as 12 years. In Africa, this process is not as organized and most hospitals would write a referral letter once the child turns 18 and transfer to adult clinic. In four of our chronic disease clinics (asthma, HIV, sickle cell anaemia and chronic kidney diseases) patients up to 24 years old are still attending the paediatric clinics. Understanding transition readiness among African adolescents remains a gap. Our findings will form a basis for informed practices for adolescent clinics in African countries. Methods This was a descriptive cross-sectional study of pre-transition readiness in adolescents and young adults with chronic illnesses attending four outpatient specialist clinics in a tertiary hospital in Enugu Nigeria. This was done using the validated STARx Questionnaire. Total scores were computed and scores nearer the upper limit of 90 were acceptable, while mean subdomain scores of 4 and above were considered as optimal level of transition readiness. Demographic and clinical data were also collected. Acceptability to move on to adult-oriented care was documented using binary response (yes/no). Cross tabulations were done, and likelihood ratios obtained for predictors of acceptability of transition. Significant value was set at p-value of ≤0.05. Results A total of 142 adolescents and young adults aged 12 to 24 years were studied. There were 38.0% (54), 24.6% (35), 22.5% (32) and 14.8% (21) from HIV, sickle cell anaemia, asthma and nephrology clinics, respectively. Their mean age was 15.6 years ± 2.4, and 48.6% (69) were male. The mean total transition readiness score was 56±14 and this was not nearer the higher spectrum of total scores obtainable. Highest mean scores (3.7) occurred in the knowledge subdomain while least mean score (2) was noted in the use of medication reminders. The males had highest scores in the knowledge subdomain while the females were better informed about medication adherence and were more inquisitive about their chronic illness. Only about 37% (53) of the adolescents and young adults welcomed the idea of moving on to adult-care clinics. Children who had less frequent emergency hospital visits and better treatment outcome accepted the idea of transfer to adult care. Irrespective of the age all participants had suboptimal subdomain scores. High scores did not influence the participants' choice to embrace transfer to adult care. Conclusion There is suboptimal transition readiness irrespective of the age. The older age groups were less willing to transfer to adult care. Better disease knowledge and better communication skills did not positively influence acceptability of transfer to adult care.
Collapse
Affiliation(s)
- Adaeze C Ayuk
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Vivian O Onukwuli
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Ijeoma N Obumneme-Anyim
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Joy N Eze
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Uzoamaka C Akubuilo
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Ngozi R Mbanefo
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Kenechukwu K Iloh
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Osita U Ezenwosu
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Israel O Odetunde
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Henrietta U Okafor
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Ifeoma J Emodi
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| | - Tagbo Oguonu
- College of Medicine University of Nigeria, University of Nigeria Teaching Hospital, Ituku Ozalla, Enugu, Nigeria
| |
Collapse
|
|
38
|
Hobart CB, Phan H. Pediatric-to-adult healthcare transitions: Current challenges and recommended practices. Am J Health Syst Pharm 2020; 76:1544-1554. [PMID: 31532501 DOI: 10.1093/ajhp/zxz165] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/15/2022] Open
Abstract
PURPOSE An overview of the pediatric-to-adult healthcare transition (HCT) process, including stakeholders, challenges, and fundamental components that present opportunities for pharmacists and pharmacy technicians, is provided. SUMMARY Pediatric-to-adult HCT programs should be longitudinal in nature, be patient focused, and be coproduced by patients, caregivers, and care team members. Educational components of HCT programs should include knowledge and skills in disease state management and self-care; safe and effective use of medications, as well as other treatment modalities; and healthcare system navigation, including insurance issues. Interprofessional involvement in HCT is encouraged; however, roles for each discipline involved are not clearly delineated in current guidelines or literature. Possible influencing elements in achieving successful pediatric-to-adult HCT outcomes include those that are related to patient and/or caregiver factors, clinician awareness, availability of resources, and ability to achieve financial sustainability. CONCLUSION The use of structured pediatric-to-adult HCT programs is currently recommended to optimize patient and health-system outcomes. Given the importance of medication-related knowledge and healthcare system navigation skills to successful care transitions, there are opportunities for pharmacists and pharmacy technicians to contribute to HCT programs.
Collapse
Affiliation(s)
- Catherine B Hobart
- Department of Clinical and Administrative Sciences, College of Pharmacy, Larkin University, Miami, FL
| | - Hanna Phan
- Department of Pharmacy Practice and Science, College of Pharmacy, University of Arizona, and Department of Pediatrics, College of Medicine, University of Arizona, Tucson, AZ
| |
Collapse
|
|
39
|
Hung YC, Williams JE, Bababekov YJ, Rickert CG, Chang DC, Yeh H. Surgeon crossover between pediatric and adult centers is associated with decreased rate of loss to follow-up among adolescent renal transplantation recipients. Pediatr Transplant 2019; 23:e13547. [PMID: 31328860 DOI: 10.1111/petr.13547] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/28/2019] [Accepted: 06/17/2019] [Indexed: 11/27/2022]
Abstract
The risk of adverse outcomes for pediatric renal transplant patients is highest during the transition from pediatric to adult care. While there have been many studies focus on graft failure and death, loss to follow-up likely plays a large role in patient outcomes. We hypothesize patients are lost to follow-up during this transition period and that patients transplanted at pediatric centers with a closely affiliated adult center (AFFs) are less likely to suffer from fragmentation of care and become lost to follow-up. AFFs were defined as those pediatric centers whose transplant surgeons were also on staff at an adult center and were identified using center websites. We included patients undergoing renal transplantation at <=18 years of age and had data for the entire transition period on the Scientific Registry of Transplant Recipients (n = 6,762, 92.3% in 95 AFFs). 32% of patients were lost to follow-up. On regression, patients transplanted at AFF were 33% less likely to be lost to follow-up compared with those from non-AFF (OR 0.67 CI 0.54-0.82, P < 0.01). The proportion of patients lost to follow-up during the transition period is remarkably high, but lower among recipients transplanted at AFFs. Poor follow-up may be mitigated by improving integration of care.
Collapse
Affiliation(s)
- Ya-Ching Hung
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts
| | - Jonathan E Williams
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts.,Tufts University School of Medicine, Boston, Massachusetts
| | - Yanik J Bababekov
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts
| | - Chalres G Rickert
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts
| | - David C Chang
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts
| | - Heidi Yeh
- Department of Surgery, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts
| |
Collapse
|
|
40
|
Dembo R, Faber J, Cristiano J, Wareham J, Krupa J, Schmeidler J, Terminello A, DiClemente RJ. Individual- and Community-Level Factors in the STD Status of Justice-Involved Youth: Multi-Group, Exploratory Two-Level Analysis. ARCHIVES OF SEXUAL BEHAVIOR 2019; 48:2171-2186. [PMID: 31214909 DOI: 10.1007/s10508-018-1387-0] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/18/2017] [Revised: 12/17/2018] [Accepted: 12/19/2018] [Indexed: 06/09/2023]
Abstract
Justice-involved youth display higher prevalence rates of sexually transmitted diseases (STDs), in comparison with youth in the general population, highlighting a critical public health concern. Individual factors are important predictors of STDs, but only provide a partial understanding of this public health issue. Communities experiencing higher levels of disorder and lower levels of cohesion tend to have fewer institutional resources available, which may impact sexual risk behavior and STDs. However, few studies have examined the association between community characteristics and STD prevalence among adolescents. The current study examined community-level (n = 106) characteristics and individual-level attributes in explaining STDs among justice-involved youth (n = 1233: n = 515 female; n = 718 male). At the individual level, results showed older males and those with more drug-related problems were more likely to be STD positive, while females with more sexual partners and those with less drug-related problems were more likely to be STD positive. At the community level, females residing in areas with fewer educated residents were more likely to be STD positive. These gender differences were significant, suggesting a gendered perspective is important for understanding STD infection. The justice system represents a critical opportunity in the treatment and prevention of STDs for youth.
Collapse
Affiliation(s)
- Richard Dembo
- Criminology Department, University of South Florida, Tampa, FL, 33620, USA.
| | - Jessica Faber
- Agency for Community Treatment Services, Inc., Tampa, FL, USA
| | | | - Jennifer Wareham
- Department of Criminal Justice, Wayne State University, Detroit, MI, USA
| | - Julie Krupa
- School of Criminal Justice, Michigan State University, East Lansing, MI, USA
| | - James Schmeidler
- Department of Psychiatry, Mt. Sinai School of Medicine, New York, NY, USA
| | - Asha Terminello
- Agency for Community Treatment Services, Inc., Tampa, FL, USA
| | - Ralph J DiClemente
- Department of Social and Behavioral Science, New York University, New York, NY, USA
| |
Collapse
|
|
41
|
Varty M, Popejoy LL. A Systematic Review of Transition Readiness in Youth with Chronic Disease. West J Nurs Res 2019; 42:554-566. [PMID: 31530231 DOI: 10.1177/0193945919875470] [Citation(s) in RCA: 43] [Impact Index Per Article: 7.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2022]
Abstract
The transition of chronically ill adolescents and young adults to adult health care is poorly managed, leading to poor outcomes due to insufficient disease knowledge and a lack of requisite skills to self-manage their chronic disease. This review analyzed 33 articles published between 2009 and 2019 to identify factors associated with transition readiness in adolescents and young adults with chronic diseases, which can be used to design effective interventions. Studies were predominantly cross-sectional survey designs that were guided by interdisciplinary research teams, assessed adolescents and young adults ages 12-26 years, and conducted in the outpatient setting. Modifiable factors, including psychosocial and self-management/transition education factors, and non-modifiable factors, including demographic/ecological and disease factors, associated with transition readiness were identified. Further research is necessary to address gaps identified in this review prior to intervention development, and there is a need for additional longitudinal studies designed to provide perspective on how transition readiness changes over time.
Collapse
Affiliation(s)
- Maureen Varty
- Sinclair School of Nursing, University of Missouri, Columbia, MO, USA
| | - Lori L Popejoy
- Sinclair School of Nursing, University of Missouri, Columbia, MO, USA
| |
Collapse
|
|
42
|
Protudjer JLP, Middelveld R, Dahlén SE, Ahlstedt S. Food allergy-related concerns during the transition to self-management. Allergy Asthma Clin Immunol 2019; 15:54. [PMID: 31507642 PMCID: PMC6727333 DOI: 10.1186/s13223-019-0370-1] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/05/2019] [Accepted: 08/28/2019] [Indexed: 01/02/2023] Open
Abstract
Background Compared to non-allergic individuals, food allergic individuals have impaired health-related quality of life (HRQL). However, effects of gender and age are unclear. The objective of our study was to describe associations between allergies to common foods and HRQL with consideration to gender and age. Methods Adolescents and adults (N = 137; 49.6% males) with specialist-diagnosed allergy to milk, egg and/or wheat completed age-appropriate versions of the Food Allergy Quality of Life Questionnaire (FAQLQ). We pooled common questions and calculated overall- and domain-specific HRQL in association with number and severity of symptoms and time elapse since worst reaction. Results In the entire study population, HRQL was not affected by gender or age, whereas gender-specific age categories affected HRQL among males only. For example, males 18–39 years had worse overall- (β = 0.77; 95% CI 0.08–1.45) and domain-specific HRQL vs. males < 18 years. Among participants with 1–3 food allergy symptoms, no associations were found. Among participants with 4–6 symptoms, the domain allergen avoidance and dietary restrictions was worse among older participants (e.g. 40+ years: β = 0.71; 95% CI 0.05–1.37 vs. < 18 years), and males 18–39 vs. < 18 years. Among participants with severe symptoms, females vs. males, and participants 18–39 vs. < 18 years had worse HRQL. At least 4 years since worst reaction was associated with worse HRQL for participants 40+ years vs. < 18 years, and older males vs. males < 18 years. Nearly all differences exceeded the clinical relevance threshold of ≥ 0.5. Conclusions Associations between allergies to common foods and HRQL are affected by gender and age. Most affected are males 18–39 years. Among females, HRQL is more stable across age groups.
Collapse
Affiliation(s)
- Jennifer Lisa Penner Protudjer
- 1Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.,2Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada.,George and Fay Yee Centre for Healthcare Innovation, Winnipeg, Canada.,4The Children's Hospital Research Institute of Manitoba, Winnipeg, Canada
| | - Roelinde Middelveld
- 1Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.,5The Centre for Allergy Research, Karolinska Institutet, Stockholm, Sweden
| | - Sven-Erik Dahlén
- 1Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.,5The Centre for Allergy Research, Karolinska Institutet, Stockholm, Sweden
| | - Staffan Ahlstedt
- 1Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.,5The Centre for Allergy Research, Karolinska Institutet, Stockholm, Sweden
| | | |
Collapse
|
|
43
|
Kim G, Choi EK, Kim HS, Kim H, Kim HS. Healthcare Transition Readiness, Family Support, and Self-management Competency in Korean Emerging Adults with Type 1 Diabetes Mellitus. J Pediatr Nurs 2019; 48:e1-e7. [PMID: 30929981 DOI: 10.1016/j.pedn.2019.03.012] [Citation(s) in RCA: 22] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/01/2019] [Revised: 03/16/2019] [Accepted: 03/16/2019] [Indexed: 02/04/2023]
Abstract
PURPOSE The current study investigated factors related to healthcare transition readiness, including family support and self-management competency, in emerging adults with Type 1 diabetes mellitus (T1DM). DESIGN AND METHODS A cross-sectional survey was conducted with 87 individuals, aged 16-24 years. Participants were recruited both from the outpatient clinic of Severance Children's Hospital, and an online self-help group for emerging adults with T1DM in South Korea. Participants reported perceived levels of family support, self-management competency, and healthcare transition readiness through a structured questionnaire. RESULTS Healthcare transition readiness was positively correlated with family support (r = 0.257, p = .016) and self-management competency (r = 0.606, p < .001). Multivariate linear regression analyses revealed that only self-management competency was a significant factor associated with healthcare transition readiness (β = 0.699, p < .001). CONCLUSIONS For emerging adults with T1DM, ongoing family involvement in diabetes care and enhanced self-management competency can strengthen their healthcare transition readiness. Furthermore, primary factors associated with healthcare transition readiness in the present study were identified as self-management competency and participants' age. PRACTICE IMPLICATIONS Healthcare providers should assess and enhance healthcare transition readiness in emerging adults with T1DM. A primary method of addressing transition readiness is helping people strengthen their self-management competency.
Collapse
Affiliation(s)
- Gayeong Kim
- Yonsei University College of Nursing, Republic of Korea
| | - Eun Kyoung Choi
- Yonsei University College of Nursing, Republic of Korea; Mo-Im Kim Nursing Research Institute, Yonsei University, Republic of Korea.
| | - Hee Soon Kim
- Yonsei University College of Nursing, Republic of Korea; Mo-Im Kim Nursing Research Institute, Yonsei University, Republic of Korea
| | - Heejung Kim
- Yonsei University College of Nursing, Republic of Korea; Mo-Im Kim Nursing Research Institute, Yonsei University, Republic of Korea
| | - Ho-Seong Kim
- Department of Pediatrics, Severance Children's Hospital, Endocrine Research Institute, Yonsei University College of Medicine, Republic of Korea
| |
Collapse
|
|
44
|
Current management of transition of young people affected by rare renal conditions in the ERKNet. Eur J Hum Genet 2019; 27:1783-1790. [PMID: 31363187 DOI: 10.1038/s41431-019-0460-z] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/11/2019] [Revised: 04/12/2019] [Accepted: 06/11/2019] [Indexed: 11/08/2022] Open
Abstract
Transition in medical care is a high-risk period in adolescence and young adulthood. To date, data on transition policy, its application in practice, and transition procedures in patients with rare, hereditary kidney diseases in Europe is scarce. An online survey was developed and was distributed within the paediatric centres of the European Reference Network for Rare Kidney Diseases (ERKNet) aiming to assess the transition-relevant structures from the providers' perspectives. Its items were based on the consensus statement on transition published by the International Society of Nephrology (ISN) and the International Paediatric Nephrology Association (IPNA) in 2011. Forty-six paediatric experts based at 28/32 ERKNet university hospitals participated. Annually, a median number of 14 patients (1-80) are transferred to adult based care. One centre continued to care for paediatric kidney transplant recipients throughout their entire lifespan. Choosing this option terminated the survey and no further data was obtained from this centre. 29/45 experts confirmed the application of an-at least unwritten-transition procedure (64%). Transition clinics are offered by 23 experts. Most physicians (40%) transfer patients at age 18-19, 10 experts at age <18. Most physicians transfer the patients to a university hospital and/or a community hospital. The transition guidelines have been implemented in ERKNet centres only partly and with huge heterogeneity. Implementation of transition tools and structures within ERKNet could improve health of children with hereditary kidney diseases. Adherence of experts to the transition-guidelines was significantly correlated with gross national income of their countries.
Collapse
|
|
45
|
Dunbar P, Hall M, Gay JC, Hoover C, Markham JL, Bettenhausen JL, Perrin JM, Kuhlthau KA, Crossman M, Garrity B, Berry JG. Hospital Readmission of Adolescents and Young Adults With Complex Chronic Disease. JAMA Netw Open 2019; 2:e197613. [PMID: 31339547 PMCID: PMC6659144 DOI: 10.1001/jamanetworkopen.2019.7613] [Citation(s) in RCA: 39] [Impact Index Per Article: 6.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/19/2023] Open
Abstract
IMPORTANCE Adolescents and young adults (AYA) who have complex chronic disease (CCD) are a growing population that requires hospitalization to treat severe, acute health problems. These patients may have increased risk of readmission as demands on their self-management increase and as they transfer care from pediatric to adult health care practitioners. OBJECTIVE To assess variation across CCDs in the likelihood of readmission for AYA with increasing age. DESIGN, SETTING, AND PARTICIPANTS Retrospective 1-year cross-sectional study of the 2014 Agency for Healthcare Research and Quality Nationwide Readmissions Database for all US hospitals. Participants were 215 580 hospitalized individuals aged 15 to 30 years with cystic fibrosis (n = 15 213), type 1 diabetes (n = 86 853), inflammatory bowel disease (n = 48 073), spina bifida (n = 7819), and sickle cell anemia (n = 57 622) from January 1, 2014, to December 1, 2014. EXPOSURES Increasing age at index admission. MAIN OUTCOMES AND MEASURES Unplanned 30-day hospital readmission. Readmission odds were compared by patients' ages in 2-year epochs (with age 15-16 years as the reference) using logistic regression, accounting for confounding patient characteristics and data clustering by hospital. RESULTS Of 215 580 participants, 115 982 (53.8%) were female; the median (interquartile range) age was 24 (20-27) years. Across CCDs, multimorbidity was common; the percentages of index hospitalizations with 4 or more coexisting conditions ranged from to 33.4% for inflammatory bowel disease to 74.2% for spina bifida. Thirty-day hospital readmission rates varied significantly across CCDs: 20.2% (cystic fibrosis), 19.8% (inflammatory bowel disease), 20.4% (spina bifida), 22.5% (type 1 diabetes), and 34.6% (sickle cell anemia). As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all 5 CCD cohorts. In multivariable analysis, age trends in the adjusted odds of readmission varied across CCDs. For example, for AYA who had cystic fibrosis, the adjusted odds of readmission increased to 1.9 (95% CI, 1.5-2.3) by age 21 years and remained elevated through age 30 years. For AYA who had type 1 diabetes, the adjusted odds of readmission peaked at ages 23 to 24 years (odds ratio, 2.3; 95% CI, 2.1-2.6) and then declined through age 30 years. CONCLUSIONS AND RELEVANCE These findings suggest that hospitalized AYA who have CCDs have high rates of multimorbidity and 30-day readmission. The adjusted odds of readmission for AYA varied significantly across CCDs with increasing age. Further attention is needed to hospital discharge care, self-management, and prevention of readmission in AYA with CCD.
Collapse
Affiliation(s)
- Peter Dunbar
- Division of General Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts
| | - Matt Hall
- Department of Pediatrics, Children’s Mercy Hospitals and Clinics, University of Missouri–Kansas City School of Medicine, Kansas City
- Children’s Hospital Association, Lenexa, Kansas
| | - James C. Gay
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee
| | | | - Jessica L. Markham
- Department of Pediatrics, Children’s Mercy Hospitals and Clinics, University of Missouri–Kansas City School of Medicine, Kansas City
| | - Jessica L. Bettenhausen
- Department of Pediatrics, Children’s Mercy Hospitals and Clinics, University of Missouri–Kansas City School of Medicine, Kansas City
| | - James M. Perrin
- Division of General Academic Pediatrics, Department of Pediatrics, MassGeneral Hospital for Children, Harvard Medical School, Boston, Massachusetts
| | - Karen A. Kuhlthau
- Division of General Academic Pediatrics, Department of Pediatrics, MassGeneral Hospital for Children, Harvard Medical School, Boston, Massachusetts
| | - Morgan Crossman
- Division of General Academic Pediatrics, Department of Pediatrics, MassGeneral Hospital for Children, Harvard Medical School, Boston, Massachusetts
| | - Brigid Garrity
- Division of General Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts
| | - Jay G. Berry
- Division of General Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts
| |
Collapse
|
|
46
|
Jones MR, Frey SM, Riekert K, Fagnano M, Halterman JS. Transition Readiness for Talking With Providers in Urban Youth With Asthma: Associations With Medication Management. J Adolesc Health 2019; 64:265-271. [PMID: 30389202 PMCID: PMC6339852 DOI: 10.1016/j.jadohealth.2018.08.026] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/31/2018] [Revised: 08/20/2018] [Accepted: 08/21/2018] [Indexed: 02/06/2023]
Abstract
PURPOSE Teen readiness assessments may provide a developmental indicator of the transfer of responsibility for health self-management from caregivers to teens. Among urban adolescents with asthma, we aimed to describe teen readiness for talking with providers and identify how readiness relates to responsibility for asthma management, medication beliefs, and clinical outcomes. METHODS Teens and caregivers enrolled in the school-based asthma care for teen's trial in Rochester, NY completed in-home surveys. We classified ready teens as those reporting a score of five on both items of the transition readiness assessment questionnaire talking with providers subscale. We performed bivariate analyses to detect differences between ready teens and other teens in teen- and caregiver-reported responsibility, teen medication beliefs, and clinical outcomes (medication adherence over the past 2 weeks, and healthcare use over the past year). RESULTS Among this sample of 251 adolescents (mean age: 13.4 years), 35% were classified as "Ready." Ready teens were more likely than other teens to want to use a controller medication independently (7.6 vs. 6.5 out of 10, p < .01) and to have confidence in this ability (8.4 vs. 7.6 out of 10, p = .02). Teens reported poor adherence (missed 52.9% of prescribed controller doses), with no differences in responsibility or clinical outcomes based on level of teen readiness for talking with providers. CONCLUSIONS In urban adolescents with poorly controlled asthma, a higher level of teen readiness for talking with providers is associated with higher perceptions of independence in medication taking, but does not appear to relate to clinical outcomes.
Collapse
Affiliation(s)
| | - Sean M. Frey
- University of Rochester Medical Center, Division of General Pediatrics, 601 Elmwood Ave, Box 777, Rochester, NY 14642,
| | - Kristin Riekert
- Johns Hopkins School of Medicine, Division of Pulmonary and Critical Care Medicine, 5501 Hopkins Bayview Circle, JHAAC 3B37, Baltimore, MD,
| | - Maria Fagnano
- University of Rochester Medical Center, Division of General Pediatrics, 601 Elmwood Ave, Box 777, Rochester, NY 14642,
| | - Jill S. Halterman
- University of Rochester Medical Center, Division of General Pediatrics, 601 Elmwood Ave, Box 777, Rochester, NY 14642,
| |
Collapse
|
|
47
|
Longitudinal Self-Management and/or Transition Readiness per the TR xANSITION Index among Patients with Chronic Conditions in Pediatric or Adult Care Settings. J Pediatr 2018; 203:361-370.e1. [PMID: 30201183 DOI: 10.1016/j.jpeds.2018.06.052] [Citation(s) in RCA: 22] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/06/2018] [Revised: 05/26/2018] [Accepted: 06/15/2018] [Indexed: 02/04/2023]
Abstract
OBJECTIVE To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015. STUDY DESIGN This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRxANSITION Index measurements, which represent learning outcomes rather than health outcomes, were collected multiple times per patient and analyzed using a novel application of an education-based approach. RESULTS Levels of and gains in HCT/SMS scores increased with age (P < .001) with smaller increases at older ages. Mastery of skills varied by age with self-management achieved after 20 years of age. Scores varied positively by father's education and negatively by mother's education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mother's education and duration of diagnosis. CONCLUSIONS We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.
Collapse
|
|
48
|
Survey on Management of Transition and Transfer From Pediatric- to Adult-based Care in Pediatric Kidney Transplant Recipients in Europe. Transplant Direct 2018; 4:e361. [PMID: 30046651 PMCID: PMC6056275 DOI: 10.1097/txd.0000000000000798] [Citation(s) in RCA: 15] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/04/2017] [Revised: 04/19/2018] [Accepted: 04/20/2018] [Indexed: 11/26/2022] Open
Abstract
Supplemental digital content is available in the text. Background Transition from pediatric- to adult-based healthcare is a challenging period and bears a high risk of medication nonadherence and transplant loss in adolescents and young adults after kidney transplantation. Yet, it remains unclear how the 2011 International Society of Nephrology (ISN)/International Pediatric Nephrology Association (IPNA) guidelines on transition are implemented in practice and which healthcare transition modalities are currently used in Europe. Methods We performed an online survey inviting all members of the European Society of Paediatric Nephrology mailing list to participate. Adherence to ISN/IPNA guidelines was scored with a maximum of 15 points. Results Thirty-nine centers from 24 countries accounting for approximately 2500 children after kidney transplantation participated in the survey. At 3 centers, patients remained under pediatric care for their whole life, and 5 centers did not use any transition procedure. From the remaining 31 centers, 82% confirmed the existence of at least 1 unwritten transition procedure. None of these centers used IT or social media for patient training in transition. Specialized transition clinics are held at 15 of 31 centers for the patients. Most patients were transferred at 16 to 21 years of age. Transfer age was subject to regulation at 20 of 36 centers. Median score of guidelines adherence was 10 (range, 0-14). The adherence score was significantly correlated with gross national income (r2 = 0.631, P < 0.0001). Conclusions The 2011 ISN/IPNA guidelines on transition are implemented insufficiently in European pediatric nephrology centers. Therefore, further development is needed, and the use of information technology and social media should be promoted.
Collapse
|
|
49
|
Excess mortality and hospitalizations in transitional-age youths with a long-term disease: A national population-based cohort study. PLoS One 2018. [PMID: 29534076 PMCID: PMC5849314 DOI: 10.1371/journal.pone.0193729] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/20/2023] Open
Abstract
Introduction The number of adolescents with a severe chronic disease has increased in high-income countries due to improvements in the prognosis of childhood-onset chronic conditions. The transition from childhood to adulthood is a critical period that may be associated with increased mortality and morbidity. We aimed to estimate the prevalence of adolescents with a long-term disease (LTD) in France and assess their mortality and hospitalization risks relative to the general population. Materials and methods We extracted a population-based cohort from the French national health insurance database that included 61,119 subjects who reached 14 years of age between 2005 and 2014. LTDs are diagnosed by patients’ physicians and then confirmed and registered by a physician of the national health insurance system. We assessed mortality and hospitalizations using data of patients who were between 14 and 21 years-old. Results Among 14-year-old adolescents, 3.30% (95% confidence interval: 3.16–3.44) had a LTD. Their mortality rate between the ages of 14 and 21 years was 20.9/10,000 person-years (13.7–32.1) versus 1.9 (1.5–2.5) for adolescents without a LTD. Mortality was higher in males than females in youths without a LTD, but not in those with a LTD. We found a similar pattern for the risk of hospitalization for an external cause. The five-year probability of hospitalization was 61.8% among youths with a LTD versus 42.7% for those without. The rate of planned hospitalizations sharply fell at 19 years-of-age among youths with a LTD, whereas the rate of unplanned hospitalizations remained stable. Conclusion The 3% of youths with a LTD have ten-fold higher mortality than those without and a high risk of hospitalization. The decrease in the rate of planned hospitalizations at age 19 among youths with a LTD may indicate differences in medical practice after transfer to adult care or a break in medical care.
Collapse
|
|
50
|
Margolis R, Wiener L, Pao M, Malech HL, Holland SM, Driscoll P. Transition From Pediatric to Adult Care by Young Adults With Chronic Granulomatous Disease: The Patient's Viewpoint. J Adolesc Health 2017; 61:716-721. [PMID: 28947348 PMCID: PMC5701857 DOI: 10.1016/j.jadohealth.2017.06.017] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/15/2017] [Revised: 06/22/2017] [Accepted: 06/25/2017] [Indexed: 11/30/2022]
Abstract
PURPOSE Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process. METHODS A survey was administered via a structured interview to 33 young adult participants (19-27 years of age), living with chronic granulomatous disease all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data were analyzed using a conventional content analysis approach. RESULTS Seventy-six percent of the participants did not understand their disease process and only 50% understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and 90% in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered. CONCLUSIONS Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with chronic granulomatous disease. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program.
Collapse
Affiliation(s)
- Rachel Margolis
- Laboratory of Clinical Infectious Diseases, National Institute of
Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD
| | - Lori Wiener
- Pediatric Oncology Branch, National Cancer Institute, Center for
Cancer Research, National Institutes of Health, Bethesda, MD
| | - Maryland Pao
- National Institute of Mental Health, National Institutes of Health,
Bethesda, MD
| | - Harry L. Malech
- Laboratory of Host Defenses, National Institute of Allergy and
Infectious Diseases, National Institutes of Health, Bethesda, MD
| | - Steven M. Holland
- Laboratory of Clinical Infectious Diseases, National Institute of
Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD
| | - Patricia Driscoll
- Intramural Clinical Management and Operations Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland.
| |
Collapse
|