Introduction Adolescents living with perinatally acquired HIV have low rates of retention in care and viral suppression after the transition from paediatric to adult care. In this study, we developed and validated a tool to identify adolescent transition readiness. Methods We developed the HIV Adolescent Readiness for Transition Scale (HARTS) from June 2016 to May 2019 by iteratively adapting existing transition readiness scales for other chronic illnesses by conducting focus groups with 11 healthcare providers and 20 adolescents in South Africa. We administered a preliminary questionnaire to 131 adolescents to determine psychometric properties and assess test-retest variability. We used confirmatory factor analysis to verify the proposed scale structure using the underlying variable approach. We correlated responses to self-described transition readiness and age using linear regression. We subsequently validated the scale by prospectively administering it to 199 adolescents in a second South African setting before their transition. We then used multivariable logistic regression to assess the effects of the HARTS and relevant socio-behavioural covariates on viral suppression one year after transition. Results We identified four domains relevant to transition readiness: disclosure, health navigation, self-advocacy and health literacy. Fifteen questions with a significant factor loading of 0.3 to 0.9 were identified. No significant test-retest variability was seen among 10% of participants. Positive correlations with self-described transition readiness were significant with the overall HARTS and domains of health navigation, self-advocacy and health literacy. In the prospective analysis, for adolescents not using drugs, each 10-point increase in the HARTS was associated with 0.62 odds of viral failure (95% CI 0.45 to 0.86; p = 0.004). The individual domains of self-advocacy (AOR 0.56; 95% CI 0.33 to 0.94; p = 0.029), disclosure (AOR 0.02; 95% CI 0.01 to 0.25; p = 0.002), health navigation (AOR 0.51; 95%CI 0.25 to 1.02; p = 0.056) and health literacy (AOR 0.37; 95% CI 0.10 to 1.30; p = 0.121) were associated with viral failure adjusting for age at antiretroviral therapy initiation, ART regimen, sex, disclosure status, and alcohol use in both analyses. Conclusions The HARTS is a validated scale that can be used to identify which adolescents may require additional interventions prior to transitioning to adult care to improve viral suppression after transition.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/jia2.25767

Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa

Youth accessing mental health care often experience a disruption in care as they attempt to transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). Few studies have evaluated interventions seeking to improve the experience and outcomes of CAMHS–AMHS transitions, in part due to lack of consensus on what constitutes best practices in intervention success. As such, the aim of this study was to engage patients, caregivers, and clinicians to prioritize core components of successful CAMHS–AMHS transitions which can be used in the design or evaluation of transition interventions. As such, a Delphi study was conducted to determine core components of successful CAMHS–AMHS transitions. Guided by the principles of patient-oriented research, three balanced expert panels consisting of youth, caregivers, and clinicians ranked and provided feedback on the importance and feasibility of core components of CAMHS-AMHS transitions. Components endorsed as feasible or important with ≥ 70% agreement from any panel moved to the next round. As a result, a list of 26 core components of CAMHS–AMHS transitions has been refined which can be used in the design, implementation, or evaluation of interventions intended to improve transition experiences and outcomes for youth in mental health care. Youth and families were engaged in an expert advisory role throughout the research process, contributing their important perspectives to the design and implementation of this study, as well as interpretation of the findings.

/pdf/prioritizing-core-components-of-successful-transitions-from-30ly2myo40.pdf

Prioritizing core components of successful transitions from child to adult mental health care: a national Delphi survey with youth, caregivers, and health professionals.

Les progrès thérapeutiques ont augmenté la survie des enfants et adolescents atteints de maladies chroniques. Pour ces jeunes patients, le passage de la pédiatrie vers les services pour adultes peut entraîner une rupture de soins, car il implique un bouleversement de leur relation au système de soins : transformation d’une prise en charge familiale, centrée sur l’adolescent et ses parents, en une prise en charge individuelle et éclatée entre différents services ou établissements avec des règles et des usages différents de ceux de la pédiatrie. L’objet de cet article est de restituer les enjeux sociaux de ce passage, et de montrer les tensions pouvant exister entre les temporalités des transitions médicale et sociale. La transition médicale, parce qu’elle est implicitement organisée autour de l’âge de 18 ans et de la majorité juridique, tend à entrer en conflit avec la temporalité des autres transitions qui jalonnent, dans nos sociétés contemporaines, le passage à l’âge adulte.

Entre transition médicale et passage à l’âge adulte, un possible conflit de temporalité pour les jeunes atteints d’une maladie chronique

Background The European Academy of Allergy and Clinical Immunology has developed a guideline to provide evidence-based recommendations for healthcare professionals to support the transitional care of adolescents and young adults (AYA) with allergy and/or asthma. The goal of this work was to ensure that the draft recommendations are also important for patients. Methods We surveyed patients aged 11-25 years with allergy and/or asthma and their parents across Europe between 17th February and 16th March 2020. The multilingual survey was distributed through national allergy and asthma patient organisations in Europe as well as through social media. Results A total of 1210 responses from 24 European countries were collected. There were 415 (34.3%) AYA and 795 (65.7%) parents. The majority of AYA (72.3%) and parents (81.9%) were female. Patients had a history of asthma (61.1%), allergic rhinoconjunctivitis (54.1%), food allergy (53.8%), atopic eczema (42.6%), and anaphylaxis (28.8%). All recommendations achieved the median score of either 'important' or 'very important'. The least supported recommendations were the use of joint clinics with both paediatric and adult physicians attending and the use of web-based or mobile technologies for communication with the AYA. The most supported recommendation was checking that the AYA is knowledgeable and compliant with their prescribed medication. Qualitative analysis revealed conditional approval for some recommendations. Conclusions There was agreement from patients and parents on the importance of the draft recommendations on transitional care for adolescents and young adults with allergy and/or asthma and their parents. The recommendations now need to be implemented into clinical practice across Europe.

Perceptions of adolescents and young adults with allergy and/or asthma and their parents on EAACI guideline recommendations about transitional care: A European survey.

Abstract Objectives Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured. Methods PubMed was searched to identify observational and experimental studies that measured transition readiness across chronic illnesses. Selected instruments were first evaluated on their development and psychometric properties. Next, reviewers independently mapped each instrument item to Expanded SMART constructs: knowledge, skills/self-efficacy, relationships/communication, psychosocial/emotions, developmental maturity, beliefs/expectations, goals/motivation. If items did not map to a construct, a new construct was named inductively through group discussion. Results Three instruments (TRAQ [20 items], STARx [18 items] and TRxANSITION Index [32 items]), reported in 74 studies, were identified. Across instruments, most items mapped to three constructs: skills/self-efficacy, developmental maturity, and knowledge. The psychosocial constructs of goals/motivation and psychosocial/emotions were underrepresented in the instruments. No instrument mapped to every model construct. Two new constructs: independent living and organization were identified. Conclusions Constructs representing transition readiness in three frequently used transition readiness instruments vary considerably from Expanded SMART, a holistic conceptual model of transition readiness, suggesting that conceptualization and operationalization of transition readiness is not standardized. No instrument reflected all conceptual constructs of transition readiness and psychosocial constructs were underrepresented, suggesting that current instruments may provide an incomplete measurement of transition readiness.

/pdf/gaps-in-transition-readiness-measurement-a-comparison-of-bm97kcgw.pdf

Gaps in transition readiness measurement: a comparison of instruments to a conceptual model

Background The last 20 years have seen many attempts to improve transition to adult healthcare for adolescents with chronic disease, but there is currently no established consensus on generic practices. Our goal was to identify relevant and pragmatic guidelines for transition practice for each step of this process (before, during and after transfer), applicable to a wide range of chronic illnesses and health services, via a participatory approach involving all the key stakeholders. Methods We conducted interviews and a literature review to elaborate a questionnaire for use in an online 2-round Delphi survey. The survey panel included 36 French health and social professionals from different care settings, and young adults and parents with an experience of healthcare transition related to all types of chronic disease. Results The survey consensus identified 19 items on feasibility and relevance criteria, which form the guidelines. It is composed of five practices to be adopted during preparation in paediatrics, seven practices in the active phase of transition and seven in adult care. Two guidelines achieved complete consensus: having a longer consultation for the first appointment with the adult doctor, and keeping the same adult doctor throughout follow-up. A further 36 items met the criterion of relevance, but were deemed unfeasible. Conclusions Taking into account all stakeholder views and the real-world applicability of care practices enabled us to elaborate consensual guidelines whose implementation requires no additional health service resources.

Practical generic guidelines for paediatric-to-adult transition for adolescents with chronic disease

La transition entre la pediatrie et la medecine pour adultes est une periode charniere pour les adolescents et jeunes adultes porteurs d’une maladie chronique : elle comporte un fort risque de rupture du parcours de soins et de degradation de l’etat de sante a court et long termes. Pour accompagner ce passage, plusieurs plateformes de transition ont ete creees ces dernieres annees en France, dans des hopitaux pediatriques ou dans les hopitaux pour adultes. Leur objectif commun est d’etre un lieu ressource offrant un accueil physique des jeunes et de leurs parents autour des questions liees a cette transition, ainsi qu’un acces aux informations utiles a leurs besoins de sante globale. Elles travaillent en partenariat etroit avec les services de soins et les associations de patients. Une forte heterogeneite de fonctionnement et d’offre de soins est observee dans ces structures encore recentes, qu’il convient de multiplier et de perenniser. Le principal defi a relever dans les prochaines annees est de renforcer les partenariats entre pediatrie et hopitaux pour adultes afin de baliser au mieux le parcours de soin des jeunes porteurs d’une maladie chronique.

/pdf/accompagner-la-transition-des-jeunes-avec-une-maladie-4cdtolr8py.pdf

Enora Le Roux

Papers

Practical generic guidelines for paediatric-to-adult transition for adolescents with chronic disease

Accompagner la transition des jeunes avec une maladie chronique - Rôle des plateformes