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Preparing adolescents with chronic disease for transition to adult care: a technology program.

ABSTRACT: Adolescents with chronic disease (ACD) must develop independent disease self-management and learn to communicate effectively with their health care team to transition from pediatric to adult-oriented health care systems. Disease-specific interventions have been implemented to aid specific ACD groups through transition. A generic approach might be effective and cost-saving.Eighty-one ACD, aged 12 to 20 years, were recruited for a randomized clinical trial evaluating an 8-month transition intervention (MD2Me). MD2Me recipients received a 2-month intensive Web-based and text-delivered disease management and skill-based intervention followed by a 6-month review period. MD2Me recipients also had access to a texting algorithm for disease assessment and health care team contact. The intervention was applicable to adolescents with diverse chronic illnesses. Controls received mailed materials on general health topics. Disease management, health-related self-efficacy, and health assessments were performed at baseline and at 2 and 8 months. Frequency of patient-initiated communications was recorded over the study period. Outcomes were analyzed according to assigned treatment group over time.MD2Me recipients demonstrated significant improvements in performance of disease management tasks, health-related self-efficacy, and patient-initiated communications compared with controls.Outcomes in ACD improved significantly among recipients of a generic, technology-based intervention. Technology can deliver transition interventions to adolescents with diverse chronic illnesses, and a generic approach offers a cost-effective means of positively influencing transition outcomes. Further research is needed to determine whether improved short-term outcomes translate into an improved transition for ACD.

SUBMITTER: Huang JS

PROVIDER: S-EPMC4035589 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature

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Preparing adolescents with chronic disease for transition to adult care: a technology program.

Huang Jeannie S JS Terrones Laura L Tompane Trevor T Dillon Lindsay L Pian Mark M Gottschalk Michael M Norman Gregory J GJ Bartholomew L Kay LK

Pediatrics 20140519 6

<h4>Background</h4>Adolescents with chronic disease (ACD) must develop independent disease self-management and learn to communicate effectively with their health care team to transition from pediatric to adult-oriented health care systems. Disease-specific interventions have been implemented to aid specific ACD groups through transition. A generic approach might be effective and cost-saving.<h4>Methods</h4>Eighty-one ACD, aged 12 to 20 years, were recruited for a randomized clinical trial evalua ...[more]

PMID: 24843066

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Project description:BACKGROUND:Adolescents with chronic health conditions and/or disabilities (CHC/D's) often face challenges when transitioning to adult care, which leads to a higher risk of morbidity and mortality. Although it is recommended that establishing the medical home and family physician (FP) attachment prior to transfer will improve health outcomes, there is little evidence or policy surrounding the role of the FP during this transition. This study explores the described use of health services by adolescents with CHC/D's, as well as the adolescent's and caregiver's perceptions of their FP. METHODS:Participants were recruited from the British Columbia Children's Hospital, Canada and a multi-method phased approach was used. In Phase 1, 84 adolescent and caregiver pairs completed questionnaires asking what medical services they accessed for specific health needs. In Phase 2, another cohort of 21 adolescent and caregiver pairs completed the same questionnaires and were interviewed regarding their perception of their FP. RESULTS:96% (n =?81) of adolescents with CHC/D's in phase 1 had a FP. Thirty four percent (n =?34) of adolescents had not seen their FP in the last 6 months. While adolescents with CHC/D mostly accessed their FP for primary health issues, they frequently also accessed specialists for prescription refills (50%, n =?51), mental health (29%, n =?30) and sexual health (16%, n =?16). While most adolescent/caregiver participants reported positive communication and trust in their FP, some had a poor understanding of the FP's role in coordinating care. CONCLUSION:As many adolescents with CHC/D may see their FP infrequently and may not clearly understand their role, opportunities exist for strengthening primary care home attachment as well as adolescent and caregiver literacy around the potential contribution of the FP during and after transfer to adult services. Responsibility for improving care coordination for this population should be ideally shared between FPs and pediatric specialists.

Project description:ImportanceAdolescents with severe mental illness often age out of pediatric care without a clear transfer of care to adult services. The extent to which primary care provides stability during this vulnerable transition period is not known.ObjectiveTo analyze the association between primary care continuity during the transition from pediatric to adult care and need for acute mental health services in young adulthood.Design, setting, and participantsThis population-based cohort study used linked health and demographic administrative data for all adolescents aged 12 to 16 years with severe mental illness ascertained by hospitalization for schizophrenia, eating disorder, or mood disorder between April 1, 2002, and April 1, 2014, in Ontario, Canada. Participants were followed up through March 31, 2017. Data were analyzed from July 2018 to January 2019.ExposuresContinuous primary care (same physician as baseline [age 12-16 years] always or sometimes), discontinuous primary care (visits to a primary care physician during the transition period who was not the patient's usual physician), and no primary care during the transition period (age 17-18 years).Main outcomes and measuresMental health-related hospitalizations and emergency department visits in young adulthood (age 19-26 years) adjusted for sex, rurality, neighborhood income, mental illness type, and health service use before transition.ResultsAmong 8409 adolescents with severe mental illness (5720 [68.0%] female; mean [SD] age, 14.8 [1.2] years), 5478 (65.1%) had continuous primary care, 2391 (28.4%) had discontinuous primary care, and 540 (6.4%) had no primary care during the transition period. Youths with no primary care during transition were more likely to be male (57.2%), have lower socioeconomic status (31.5%), and have no usual primary care practitioner at baseline (25.6%). Compared with continuous care, patients with discontinuous and no primary care had an increased rate of mental health-related hospitalization in young adulthood (adjusted relative rate, 1.20; 95% CI, 1.10-1.30; and adjusted relative rate, 1.30; 95% CI, 1.08-1.56, respectively).Conclusions and relevanceIn the context of decreasing outpatient specialist mental health visit rates following transition to adult care, ensuring adequate access to primary care during this vulnerable period may improve mental health outcomes in young adulthood.

Project description:BackgroundPrevious research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program's effectiveness, acceptability, and costs.MethodsThe overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5-17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents' acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis.DiscussionTo our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child's transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care.Trial registrationClinicalTrials.gov NCT04969328 . Retrospectively registered on 20 July 2021.

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Preparing adolescents with chronic disease for transition to adult care: a technology program.

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Preparing adolescents with chronic disease for transition to adult care: a technology program.

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