Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities

Duncan, Andrea; Luong, Dorothy; Perrier, Laure; Bayley, Mark; Andrew, Gail; Arbour-Nicitopoulos, Kelly P.; Chan, Brian; Curran, C. J.; Dimitropoulos, Gina; Hartman, Laura; Huang, Lennox; Kastner, Monika; Kingsnorth, Shauna; McCormick, Anna; Nelson, Michelle; Nicholas, David; Penner, Melanie; Thompson, Laura; Toulany, Alène; Woo, Amanda; Zee, Joanne; Munce, Sarah

doi:10.3389/fped.2021.682078

Cited by 4 publications

(7 citation statements)

References 32 publications

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“…Future interventions should continue to emphasize multidisciplinary transition clinics, social support, and caregiver engagement throughout this critical transition. New options to optimize health care utilization among young adults with disabilities include peer navigators [49] and youth stakeholder participation and shared decision making for youth-friendly health services [50].…”

Section: Table 1 Demographic and Health Characteristics Of Us Adolesc...mentioning

confidence: 99%

Health care utilization in young adults with childhood physical disabilities: a nationally representative prospective cohort study

et al. 2022

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Background Young people with physical disabilities face barriers to accessing health care; however, few studies have followed adolescents with physical disabilities longitudinally through the transition of care into adulthood. The objective of this study was to investigate differences in health care utilization between adolescents with physical disabilities and those without during the transition period from adolescent to adult care. Methods We utilized the National Longitudinal Study of Adolescent to Adult Health, a prospective cohort study following adolescents ages 11–18 at baseline (1994–1995) through adulthood. Baseline physical disability status was defined as difficulty using limbs, using assistive devices or braces, or having an artificial limb; controls met none of these criteria. Health care utilization outcomes were measured seven years after baseline (ages 18–26). These included yearly physical check-ups, unmet health care needs, and utilization of last-resort medical care, such as emergency departments, inpatient hospital wards, and inpatient mental health facilities. Multiple logistic regression models were used to predict health care utilization, controlling for age, sex, race/ethnicity, insurance status, and history of depression. Results Thirteen thousand four hundred thirty-six participants met inclusion criteria, including 4.2% with a physical disability and 95.8% without. Half (50%) of the sample were women, and the average age at baseline was 15.9 years (SE = 0.12). In logistic regression models, those with a disability had higher odds of unmet health care needs in the past year (Odds Ratio (OR) 1.41 95% CI 1.07–1.87), two or more emergency department visits in the past five years (OR 1.34 95% CI 1.06–1.70), and any hospitalizations in the past five years (OR 1.36 95% CI 1.07–1.72). No statistically significant differences in preventive yearly check-ups or admission to mental health facilities were noted. Conclusions Young adults with physical disabilities are at higher risk of having unmet health care needs and using last-resort health care services compared to their non-disabled peers.

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Section: Table 1 Demographic and Health Characteristics Of Us Adolesc...mentioning

confidence: 99%

Health care utilization in young adults with childhood physical disabilities: a nationally representative prospective cohort study

et al. 2022

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“…CONNECT aims to be a web-based tool in peer-patient navigation for youth with childhood-acquired disabilities transitioning to adult health care and community services. The development of an evidence-based, patient and family–informed, web-based peer navigation intervention for young adults with childhood-onset disabilities holds the potential to improve transitional care experiences and outcomes [ 42 ].…”

Section: Introductionmentioning

confidence: 99%

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

Kokorelias,

Lee,

Bayley

et al. 2024

JMIR Pediatr Parent

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Background Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. Objective This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). Methods A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). Results Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants’ feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. Conclusions Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

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“…Transitioning adolescents and young adults (AYA) with childhood-onset conditions to adult medical care is challenging for multiple reasons. Adolescence is an important period of multiple changes, specifically as it relates to identity, education, and sexuality [ 5 ]. Having a chronic condition, such as sickle cell disease or chronic kidney disease (CKD), can complicate this developmental period [ 5 ].…”

Section: Introductionmentioning

confidence: 99%

“…Adolescence is an important period of multiple changes, specifically as it relates to identity, education, and sexuality [ 5 ]. Having a chronic condition, such as sickle cell disease or chronic kidney disease (CKD), can complicate this developmental period [ 5 ]. Studies among AYA with chronic health conditions have shown lower self-esteem and higher rates of depressive symptoms and suicidal thoughts [ 6 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

Improving Transition of Care for Pediatric Patients With Chronic Kidney Disease: A Pilot Project

Chan,

Young,

Hanna

2024

Cureus

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Introduction Transition is the process of preparing an adolescent or young adult for the adult model of care. Poor transitions have been linked to increased medical utilization and poorer kidney outcomes. There are limited studies evaluating predictors of transition readiness or interventions in pediatric patients with chronic kidney disease (CKD). Methods We enrolled 42 non-dialysis, non-transplant patients with CKD stage 2 or higher and 14 years and older receiving care in our pediatric nephrology clinic. Data collected included demographics, clinical information, and transition readiness as measured by the Transition Readiness Assessment Questionnaire (TRAQ). Patients were provided with a structured, remote curriculum with resources that addressed areas of need. Patients were followed every three to six months. Repeat TRAQ questionnaires were administered six months after enrollment. Results Our study found that younger age and male gender were risk factors for poor transition. Age was consistently a positive predictor of higher TRAQ scores in the medication, appointment, and total score domains (p < 0.05). Male gender was a risk factor for lower TRAQ scores in the appointment and communication domains (p < 0.05). Additionally, our curriculum was effective at improving scores across all TRAQ domains, with an average increase of about 25% in six months. There was no difference in patients who had a three-month follow-up as compared to a six-month follow-up (p > 0.05). Conclusion Our study finds that younger age and male gender are risk factors for poor transition. Additionally, a structured, remote curriculum is effective at improving transition readiness.

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Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities

Cited by 4 publications

References 32 publications

Health care utilization in young adults with childhood physical disabilities: a nationally representative prospective cohort study

Health care utilization in young adults with childhood physical disabilities: a nationally representative prospective cohort study

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

Improving Transition of Care for Pediatric Patients With Chronic Kidney Disease: A Pilot Project

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