Study protocol: a pragmatic trial reviewing the effectiveness of the TransitionMate mobile application in supporting self-management and transition to adult healthcare services for young people with chronic illnesses.

Transition from paediatric to adult heath care services is a challenging time for many adolescents with chronic illnesses and may include deterioration in illness control as a consequence of inadequate self-management skills, poor understanding of their chronic illness and failure to engage with adult services. Successful transfer of health care requires the development of self-management skills and increased autonomy. Mobile technology has been proposed as a modality to assist this process. Evidence is limited and generally restricted to illness specific applications. The TransitionMate app (TMApp) is a generic (non-illness specific) mobile application designed to support young people with chronic illness in their transition from paediatric to adult health care services. The overall aim of the study is to assess the effectiveness of TMApp in improving engagement and retention of adolescents with chronic illness within adult healthcare services, as well as preventing the deterioration in illness control and unplanned hospitalisations. The TransitionMate trial is a dual centre, pragmatic, single arm, mixed methods cohort study conducted within two university teaching tertiary paediatric hospitals in Australia. Data collection points are planned at 0, 6, 12 and 18 months. Outcome indicators include: usage of TransitionMate, engagement with adult services, quantitative markers of illness control, and unplanned hospital admissions. Data are collected through telephone interviews with the participants, their primary healthcare providers, electronic medical records and de-identified mobile application analytics. The development of the application involved co-design with recently transitioned young people with a number of chronic illnesses as well as online user experience in younger adolescents. The TransitionMate study is the first identified trial of a generic mobile application designed to support adolescents with chronic illnesses during the transition process. Results are expected to provide novel insights into the value of technological tools in the transition space, especially their effectiveness in improving both the transition process and clinical outcomes of adolescents with chronic illnesses. Furthermore, the approach of a pragmatic study design may help identify research methods better designed to overcome inherent challenges in research involving adolescents, transition of care and use of mobile application technology. Registered retrospectively as of 30/1/2020 with Australian New Zealand Clinical Trials Registry: ACTRN12620000074998 .

Yeung J ，Virella Pérez YI ，Samarasinghe SC ，Forsyth V ，Agarwalla V ，Steinbeck K ... -  《BMC HEALTH SERVICES RESEARCH》

Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review.

More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant's satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611.

Virella Pérez YI ，Medlow S ，Ho J ，Steinbeck K ... -  《JOURNAL OF MEDICAL INTERNET RESEARCH》

A randomized controlled trial evaluating the effectiveness of a self-management program for adolescents with a chronic condition: a study protocol.

Self-management support is increasingly viewed as an integral part of chronic condition management in adolescence. It is well recognized that markers of chronic illness control deteriorate during adolescence. Due to the increasing prevalence of long-term chronic health conditions in childhood and improved survival rates of previously life-limiting conditions in children and adolescents, significant numbers of adolescents are having to manage their chronic condition effectively as they transition to adult health care. Therapy adherence has been identified as a major challenge for young people living with a chronic condition such as cystic fibrosis, diabetes, or asthma requiring long-term pharmacological therapy and/or lifestyle modifications. Most systematic reviews on self-management interventions address adult populations. Very few intervention studies are directed at adolescents with a chronic condition who are transitioning to adult health services. This protocol describes a prospective randomized controlled trial of a standardized self-management intervention program delivered to adolescents aged 15-18 years prior to their transfer to adult care. This study has been designed to provide evidence regarding self-management programs for adolescents and is the first study to use the Flinders Program with this important, under-researched age group. A randomized controlled trial is used to investigate the effectiveness of a modified adolescent-friendly version of an adult self-management program. This program is directed at improving self-management in an adolescent cohort 15-18 years of age with a chronic condition being treated in a specialist pediatric hospital. Participants will be randomized to either usual care or the modified Flinders Program plus usual care. Data collection will include measures of specific illness control, unscheduled hospital admissions, and questionnaires to record self-management competencies, quality of life, self-efficacy, and outcome measures specific to the chronic condition at baseline, 3 months, 6 months, and 12 months after delivery. This study will provide a better understanding of the elements required for effective self-management programs in adolescents with a chronic condition and address some important knowledge gaps in current literature. The study will be carried out in collaboration with the Discipline of Behavioural Health at Flinders University, Adelaide, Australia, in order to inform the development of an adolescent version of the successful and validated Flinders Program™. Australian and New Zealand Clinical Trials Registry (ACTRN12621000390886). Registered on April 8, 2021.

Gauci J ，Bloomfield J ，Lawn S ，Towns S ，Hobbs A ，Steinbeck K ... -  《Trials》

Pragmatic trial evaluating the effectiveness of a patient navigator to decrease emergency room utilisation in transition age youth with chronic conditions: the Transition Navigator Trial protocol.

Transition to adult care is a challenging and complex process for youth with special healthcare needs. We aim to compare effectiveness of a patient navigator service in reducing emergency room (ER) use among adolescents with chronic health conditions transitioning to adult care. Pragmatic randomised controlled trial parallel group design comparing ER visit rates between patients with access to a personalised navigator intervention compared with usual care. Unit of randomisation is the patient. Treatment assignment will not be blinded. Embedded qualitative study to understand navigator's role and cost analysis attributable to the intervention will be performed. Patients aged 16-21 years, followed within a chronic disease clinic, expected to be transferred to adult care within 12 months and residing in Alberta during study period will be recruited from three tertiary care paediatric hospitals. Sample size will be 300 in each arm. Navigator intervention over 24 months is designed to assist participants in four domains: transition preparation, health system brokering, socioeconomic determinants of health and self-management. Primary outcome is ER visit rate during observation period. Secondary outcomes are ambulatory and inpatient care utilisation measures, as well as Transition Readiness Assessment Questionnaire score, and Short-Form Health Survey 12 (SF-12) score at 6 and 18 months post-randomisation. Poisson regression will compare rates of ER/urgent care visits between navigator and control participants, using intention to treat principle. Cost analysis of the intervention will be conducted. Thematic analysis will be used to identify perceptions of stakeholders regarding the role of navigators. Ethics approval was obtained from the University of Calgary Conjoint Health Research Ethics Board (REB #162561) and the University of Alberta Health Research Ethics Board (Pro00077325). Our team is composed of diverse stakeholders who are committed to improving transition of care who will assist with dissemination of results. NCT03342495.

Samuel S ，Dimitropoulos G ，Schraeder K ，Klarenbach S ，Nettel-Aguirre A ，Guilcher G ，Pacaud D ，Pinzon J ，Lang E ，Andrew G ，Zwaigenbaum L ，Scott S ，McBrien K ，Hamiwka L ，Mackie A ... -  《-》

Structured, intensive education maximising engagement, motivation and long-term change for children and young people with diabetes: a cluster randomised controlled trial with integral process and economic evaluation - the CASCADE study.

Christie D ，Thompson R ，Sawtell M ，Allen E ，Cairns J ，Smith F ，Jamieson E ，Hargreaves K ，Ingold A ，Brooks L ，Wiggins M ，Oliver S ，Jones R ，Elbourne D ，Santos A ，Wong IC ，O'Neill S ，Strange V ，Hindmarsh P ，Annan F ，Viner R ... -  《-》