Changes in health-related quality of life during transition to adult healthcare: an international prospective cohort study.

OBJECTIVE: To study changes in health-related quality of life (HRQoL) in adolescents and young adults (AYAs) with chronic medical conditions across the transfer to adult healthcare and associations of HRQoL with transition readiness and experience of care. METHODS: Participants in this international (Finland, Australia) prospective cohort study were recruited in the year prior to transfer to adult health services and studied 12 months later. In addition to two HRQoL scales (Pediatric Quality of Life inventory (PedsQL), 16D), the Am I ON TRAC for Adult Care Questionnaire and Adolescent Friendly Hospital Survey measured transition readiness and experience of care and categorised by quartile. Data were compared before and after transfer to adult healthcare. RESULTS: In total, 512 AYAs completed the first survey (0-12 months before transfer of care) and 336 AYAs completed it 1 year later (retention rate 66%, mean ages 17.8 and 18.9 years, respectively). Mean total PedsQL scores (76.5 vs 78.3) showed no significant change, although the social and educational subdomains improved after transfer of care. The mean single-index 16D score remained the same, but in Finland, distress increased and the ability to interact with friends decreased after transfer. AYAs within the best quartiles of experience of care and transition readiness had better HRQoL than AYAs within the worst quartiles. CONCLUSIONS: Overall HRQoL of AYAs remained unchanged across the transfer to adult healthcare. Recognising and supporting AYAs with unsatisfactory experience of care and poor transition readiness could improve overall HRQoL during the transition process. TRIAL REGISTRATION NUMBER: NCT04631965.

Health-related quality of life and self-reported health status in adolescents with chronic health conditions before transfer of care to adult health care: an international cohort study.

BACKGROUND: Heath-related quality of life (HRQoL) is lower in adolescents with chronic health conditions compared to healthy peers. While there is evidence of some differences according to the underlying condition and gender, differences by measure and country are poorly understood. In this study we focus on the differences in HRQoL in adolescents with various chronic medical conditions in the year before transfer of care to adult health services. We also study the associations of two different HRQoL measurements to each other and to self-reported health. METHODS: We recruited 538 adolescents from New Children`s Hospital, Helsinki, Finland, and the Royal Children`s Hospital, Melbourne, Australia in 2017-2020. We used two validated HRQoL measurement instruments, Pediatric Quality of Life Inventory (PedsQL) and 16D, and a visual analog scale (VAS) for self-reported health status. RESULTS: In total, 512 adolescents (50.4% female, mean age 17.8 [SD 1.2] years), completed the survey measures. Higher HRQoL was reported in males than females in both countries (PedsQL 79.4 vs. 74.1; 16D 0.888 vs. 0.846), and in adolescents from Finland than Australia (80.6 vs. 72.2 and 0.905 vs. 0.825, p < 0.001 for all). Adolescents with diabetes, rheumatological, nephrological conditions and/or organ transplants had higher HRQoL than adolescents with neurological conditions or other disease syndromes (p < 0.001). PedsQL and 16D scores showed a strong correlation to each other (Spearman correlation coefficient r = 0.81). Using the 7-point VAS (1-7), 52% (248 of 479) considered their health status to be good (6-7) and 10% (48 of 479) rated it poor (1-2). Better self-reported health was associated with higher HRQoL. CONCLUSIONS: The HRQoL of transition aged adolescents varies between genders, diagnostic groups, and countries of residence. The association between self-reported health and HRQoL suggests that brief assessment using the VAS could identify adolescents who may benefit from in-depth HRQoL evaluation. TRIAL REGISTRATION: Trial registration name The Bridge and registration number NCT04631965 ( https://clinicaltrials.gov/ct2/show/NCT04631965 ).

Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study.

AIMS: To evaluate associations of age, transition readiness and anxiety in adolescents with chronic conditions and to compare perceptions of adolescents and their parents regarding health self-management and transition readiness. DESIGN: Cross-sectional international study, reported following STROBE guidelines. METHODS: Adolescents and young adults (N = 512, mean age 17.7) with a chronic medical condition and their parents (N = 322) from Finland and Australia. Data were collected through surveys (between September 2017 and December 2020). Adolescents reported the duration of their condition. Age at survey was defined by the response date of the questionnaires. Validated questionnaires were used to measure transition readiness (Am I ON TRAC? for Adult Care) and anxiety related to transition of care (State-Trait Anxiety Inventory short form). Perceptions of health self-management and transition readiness were compared in adolescent/parent dyads. Associations were explored using Spearman's correlation. RESULTS: Duration of condition and age at survey correlated weakly with transition readiness knowledge and behaviour. Higher transition readiness knowledge scores correlated with higher behaviour scores. Higher transition readiness behaviour scores were associated with lower levels of anxiety. Adolescents were less anxious than their parents and adolescents and parents mostly agreed about health self-management and transition readiness. CONCLUSION: Transition readiness should be determined by an assessment of knowledge, self-management and psychosocial skills instead of age alone. Further research should address how well transition readiness predicts positive health outcomes after the transfer of care. IMPLICATIONS FOR PATIENT CARE: Transition readiness and self-management skills should be formally assessed because positive feedback may decrease the anxiety of both adolescents and their parents regarding the transfer of care. REPORTING METHOD: We have adhered to the STROBE statement, using STROBE checklist for cross-sectional studies. PATIENT OR PUBLIC INVOLVEMENT STATEMENT: No patient or public involvement. TRIAL AND PROTOCOL REGISTRATION: ClinicalTrials.org NCT04631965.

Disease control and psychiatric comorbidity among adolescents with chronic medical conditions: a single-centre retrospective study.

BACKGROUND: To investigate disease control, psychiatric comorbidity, substance use and their possible associations in adolescents with chronic medical conditions before transfer to adult healthcare. METHODS: We collected clinical data from the year preceding transfer of care and psychiatric data from the records of the paediatric hospital in Helsinki, Finland (population base 1.7 million). Participants were grouped into three disease and/or adherence control categories (good, some evidence of concern, poor) based on clinical data from the medical records of the year preceding the transfer of care. Participants completed the Adolescent's Substance Use Measurement Questionnaire before transfer of care and were divided into four risk subgroups accordingly. RESULTS: In total, 253 adolescents (mean age 17.3 years, SD 1.2) from six paediatric subspecialties participated in this study. Disease control and/or adherence were rated as good in 28% (n=70), moderate in 42% (n=105) and poor in 30% (n=76) in the year before participants transferred to adult health services. A quarter of participants had at least one psychiatric diagnosis during adolescence. Adolescents with concomitant psychiatric diagnoses more often had poor disease control of their chronic medical condition than adolescents with only a medical condition (44% vs 26%; n=25 of 59 vs 51 of 194, respectively). More than half of adolescents (56%) were abstinent or used substances infrequently; 10% (n=26) reported hazardous substance use. CONCLUSIONS: Psychiatric comorbidity in adolescents with chronic medical conditions is common. Its negative association with disease control and possible substance use should be considered in the transition process to adult health services.

Accessible mental well-being intervention for adolescents in school settings: a single-group intervention study using a pretest-post-test design.

BACKGROUND: A growing number of adolescents seek treatment for mental health problems, a circumstance that stresses the importance of implementing accessible treatment options. This study evaluates the impacts of brief, mental well-being intervention for adolescents in a school environment. As mental health interventions are often targeted at specific disorders, we sought a comprehensive approach to reach adolescents with a range of mental health symptoms. METHODS: Single-group intervention study with a pretest-posttest design was utilized and conducted in lower, upper secondary, and vocational schools on adolescents ages 12-18 who sought medical attention for mental health symptoms. The cut-off point for inclusion was ≥ 14, for the Young Persons Clinical Outcomes for routine Evaluation (YP-CORE) measurement. The intervention included six face-to-face visits implemented by psychiatric nurses who received a 3-day training course. The impacts were evaluated after 6 weeks (n = 87) and again at 6 months (n = 68) and assessed using the YP-CORE, Beck Depression Inventory (BDI-II) and Overall Anxiety Severity and Impairment Scale (OASIS). RESULTS: The participants reported significant levels of mental distress at baseline with a YP-CORE mean score = 21.48, a BDI-II mean score = 23.60, OASIS mean score = 10.98. Post-intervention results at 6 weeks for the primary outcome YP-CORE showed a significant (p < .001) mean score decrease of - 3.82, a medium effect size d = .627. For participants attending upper secondary and vocational schools the YP-CORE scores changed significantly from baseline to 6-weeks (p = .005) and from baseline to 6-months (p < .001). Long-term outcomes at 6-months showed a - 1.14 decrease (p = non-significant), effect size d = .175. After the 6-week intervention, 12% of the participants were assessed as not requiring additional visits. CONCLUSIONS: This easily accessible intervention in a school setting indicated improvement for those participants with mild to moderate mental disorder symptoms and attending upper secondary and vocational schools. After the 6-week intervention, significant positive effects were observed. Participants reported substantial levels of mental distress at the baseline, which could contribute to the decline of symptoms and need for extended care during the 6 months follow-up. Trial registration Retrospectively registered with Clinicaltrials.gov identifier NCT05356949.

Systematic review of digital interventions to support refusal self-efficacy in child and adolescent health promotion.

Refusal self-efficacy protects against risky health behavior. Digital interventions have the potential to support self-efficacy due to the enactive experience provided by digital technologies. The aim of this systematic literature review was to evaluate the evidence of digital interventions to support refusal self-efficacy in child and adolescent health promotion. Following the Cochrane Collaboration guidelines, five electronic databases were searched from 2009 to 2020. The studies were assessed by two independent reviewers according to the eligibility criteria. Eligible studies were included in the review, assessed for risk of bias, synthesized narratively and assessed for evidence quality with the GRADE approach. Twenty-three studies, that examined 18 different interventions, were included in the review. The interventions included various digital elements as means to support the child and adolescent refusal self-efficacy (e.g. games, videos, feedback and activities for regulating feelings). The interventions improving refusal self-efficacy were more often used at home setting and addressed the four sources of self-efficacy with different digital elements regardless of intervention duration and intensity. Although the results on intervention effects varied and the evidence quality remained low, the overall evidence concerning these interventions was encouraging. Based on the subgroup analysis, the results were mainly encouraging among girls. When these interventions are implemented in health promotion, their benefits and weaknesses need to be considered comprehensively. The results provide information for designing and developing digital interventions to support child and adolescent refusal self-efficacy. Further research with larger sample sizes and more rigorous study designs is needed to strengthen the evidence of these interventions.

Refusal self-efficacy determines children's and adolescents' health behavior, for example when they are being offered cigarettes or alcohol and they face the challenge of refusing it. Since digital interventions are potential tools to support refusal self-efficacy, this review examined digital interventions to support refusal self-efficacy in child and adolescent health promotion. Twenty-three studies that examined such interventions were found. Most of the interventions that improved child and adolescent refusal self-efficacy were used in home settings and addressed all sources of self-efficacy regardless of intervention duration. Although the results varied, the interventions in general seemed to improve refusal self-efficacy, especially among girls. However, this study suggests that more high-quality research with more study participants is still needed to make stronger conclusions. Also, the benefits and weaknesses of digital interventions to support refusal self-efficacy need to be considered comprehensively before using them in child and adolescent health promotion.

The Effectiveness of Individual Mental Health Interventions for Depressive, Anxiety and Conduct Disorder Symptoms in School Environment for Adolescents Aged 12-18-A Systematic Review.

Background: Mental health problems are a major health issue for children and adolescents around the world. The school environment allows adolescents to be reached comprehensively and on a low threshold, making it a potential environment for mental health interventions. The aim of this review was to describe interventions delivered by health-care workers in school environment for individual adolescents aged 12-18 with mental health problems and to assess the effectiveness of these interventions. Methods: This systematic review was conducted in adherence with the PRISMA guidelines. Altogether 349 studies were screened and 24 of them were included in full text assessment. Eight studies were included in the qualitative synthesis. Only in three studies the intervention was compared to another intervention or the study setting included a control group. Five of the interventions were based on cognitive-behavioral therapy and three on other approaches. In seven studies, one of the main response variables was based on assessment of depressive symptoms and/or a depressive disorder. The quality of the studies was limited with notable risk for bias for some studies. Results: Based on reported symptom reductions, for most of the interventions, the results were good. Symptom reductions were also typically achieved in a rather low number of sessions (12 or less) supporting the feasibility of these type of interventions in school environment. However, the lack of use of control groups and actual comparisons between the interventions, limit the possibility to draw firm conclusions regarding their effectiveness and thus, the results should be interpreted with caution. Confirming the effectiveness of the studied interventions requires more robust evidence and thus, improving the quality of studies in the school environment is encouraged.

Bridge study protocol: an international, observational cohort study on the transition of healthcare for adolescents with chronic conditions.

INTRODUCTION: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult hospitals, non-adherence rates approach 70% and emergency visits and hospitalisation rates significantly increase. The purpose of the Bridge study is to prospectively examine associations of transition readiness and care experiences with transition success: young patients' health, health-related quality of life (HRQoL) and adherence to medical appointments as well as costs of care. In addition, we will track patients' growing independence and educational and employment pathways during the transition process. METHODS AND ANALYSIS: Bridge is an international, prospective, observational cohort study. Study participants are adolescents with a chronic health condition or disability and their parents/guardians who attended the New Children's Hospital in Helsinki, Finland, or the Royal Children's Hospital (RCH) in Melbourne, Australia. Baseline assessment took place approximately 6 months prior to the transfer of care and follow-up data will be collected 1 year and 2 years after the transfer of care. Data will be collected from patients' hospital records and from questionnaires completed by the patient and their parent/guardian at each time point. The primary outcomes of this study are adherence to medical appointments, clinical health status and HRQoL and costs of care. Secondary outcome measures are educational and employment outcomes. ETHICS AND DISSEMINATION: The Ethics Committee for Women's and Children's Health and Psychiatry at the Helsinki University Hospital (HUS/1547/2017) and the RCH Human Research Ethics Committee (38035) have approved the Bridge study protocol. Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and their parents/guardians. TRIAL REGISTRATION NUMBER: NCT04631965.

A systematic review on randomized controlled trials: Coaching elements of digital services to support chronically ill adolescents during transition of care.

AIMS: To define digital health services that have been studied among chronically ill adolescents and to describe e-health coaching elements that may have an impact on transition outcomes. DESIGN: Systematic review without meta-analysis. DATA SOURCES: MEDLINE (Ovid), Pub Med, Scopus and CINAHL on 28 May 2018. REVIEW METHODS: Peer-reviewed articles published between January 2008-May 2018 were reviewed following the Cochrane Handbook for Systematic Reviews of Interventions and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement. RESULTS: Twelve randomized controlled trials were included. The interventions varied significantly in duration and content. E-coaching that included human and social support showed positive impact on transition outcomes. Digital health services incorporated into usual care provide efficient and accessible care. CONCLUSION: E-coaching elements enable tailoring and personalization and present a tool for supporting and motivating chronically ill adolescents during transition of care. Future research should evaluate the effectiveness of e-coaching elements. IMPACT: Digital services are considered a means for increasing adolescents' motivation for self-care and for increasing their accessibility to health care. The coaching elements in digital services consist of a theoretical basis, human support, interactive means and social support. Included interventions varied in terms of duration, dose, content and design. Our results may serve the development of digital health services for adolescents in transition. E-coaching can be used to engage and motivate chronically ill adolescents to improve health behaviour and self-management during transition of care.