Table 1

Summary of studies identifying needs of adolescents and young adults with chronic diseases*

Authors (year)	Context/study design/area of resource scarcity	Aims	Description/demographics	Comments and findings related to disease burden and structural barriers	Study limitations
Study 1 Platos and Pisula20 (2019)	Poland, population subset with >1 reported barriers to service use. Cross-sectional survey study of adolescents with ASD. Secondary analysis of service use from nationwide Polish Autism Survey using convenience sampling and parental informants.	To evaluate Services used by patients with ASD and predisposing factors for use. Unmet needs for services and factors that prevent use. Barriers to services and who is at greatest risk of facing these.	n=311. Race/ethnicity: not reported. Median age: 16.6 years (12–39) Sex: 79% male. Comorbidities: 45% Intellctual Disability, 58% psychiatric/mental health. Socio-economic status: 21% poorest quintile, 36% from large city.	Childhood autism, atypical autism, Asperger syndrome Structural barriers included household income, female gender and rural location. Examples: people with higher income had fewer unmet needs for sensory/motor services (p=0.018), and women had more unmet needs than men (p=0.04); services were reported too costly more often with younger age (12–14 years), low household income and attending an integrated classroom; unavailable services were associated with living in a village and medium/small city.	Convenience sampling limits result generalisability, and study population may over-represent those living in larger cities. Patients who did not use any services were likely underestimated, as surveys were distributed through service providers. Self-reported study. Relied on parents as informants.
Study 2 Mhongera and Lombard19 (2016)	Zimbabwe. Qualitative analysis of key-informant interviews with orphan adolescent girls and superintendents on transition services. Sustainable livelihood approach, purposive sampling.	To evaluate effectiveness of institutional transition programmes in promoting sustainable livelihoods by assessing Livelihood needs of orphan adolescent girls. Governmental services to meet identified needs and adolescent-perceived adequacy of support.	n=32. Sex: all female. Age: 15–18 years (with understanding of transition issues, not yet exited institutional care) and 18–21 years (discharged from care within a 3-year period).	No specific disease burden, but psychosocial vulnerabilities included no parental figures. Examples of structural barriers: No institutional financial assets provided for adolescent girls inside care. No access to training programmes to enhance capacity for independent living. Significant financial insecurity post-transition make them vulnerable to homelessness and abuse. No tap water or latrines in many villages, have to fetch water from river. Lack of access to transport services results in social exclusion and isolation, particularly in rural areas.	Lack of effective case management made it difficult to locate adolescent girls who had transitioned from institutional care. Small sample size.
Study 3 Saetermoe et al22 (2004)	Guatemala. In-depth interviews of caregivers for adolescents with severe childhood-onset disabilities, analysed using constructivist grounded theory† framework.	To examine The role of tangible resources in influencing economic/social outcomes of adolescents with disabilities. Factors optimising their developmental progress and social adjustment. Resources available and still needed.	n=15. Patient median age: 15.6 (age: 12–20 years). Sex: 53% female. All with non-traumatic chronic/debilitating condition for >12 months. Spanish-speaking, born in Guatemala. Primarily urban dwelling, somewhat more advantaged than the general population.	Cerebral palsy (53%), muscular dystrophy (13%), polio (13%), spina bifida (6.6%), cleft palate (6.6%), Guillain-Barré syndrome (6.6%) None had medical insurance. If caretaker had financial urgency, their primary goal was to help adolescent become economically independent, and financial independence often becomes a priority over healthcare. Poverty associated with unacceptable levels of healthcare.	Exploratory study with small sample size.
Study 4 Stefan17 (2008)	South Africa. Review article with context-specific commentary on mandatory age 13 transition care for adolescents with cancer.	To describe specific needs of adolescents with cancer for broader implications in the developing world	Age: 10–19 years.	Diseases included range of childhood-onset cancers and related psychosocial needs.	Descriptive review without detailed or rigorous methodology outlined. Limited to cancer-specific literature.
Study 5 Azh et al13 (2017)	Tehran, Iran. Qualitative analysis of in-depth interviews (n=30) and group discussions (n=9) using grounded theory.	To explain perception of adolescent youth and stakeholders to improve health programmes for safe transition	n=67 adolescents (age: 14–18 years), 8 youths (age: 19–24 years), 12 additional parents/healthcare provider stakeholders. Sex: 67% female (62 female, 30 male). Conducted in boys’ and girls’ schools, universities, municipality culture centres.	No specific disease burden; adolescent perspective related to confusion in receiving health services, policy-related to providing comprehensive health services, optimising influential factors, and empowering adolescents, specifically surrounding puberty	Limited to one city in Tehran, less generalisable Relatively small n with no specific disease burden
Study 6a (protocol)* Hewett et al16 (2017)	Zambia Multi-arm randomised control trial -protocol to assess interventions for adolescent girls in LMICs	To assess impact across long-term outcomes, including: early marriage, first birth, contraceptive use, educational attainment, and HIV (acquisition) following programme completion, and after 2 years of follow-up	n=10 000 girls (age: 10–19 years) targeted by intervention (AGEP) across sites (one-half urban and one-half rural) in four provinces, specifically designed to reach most vulnerable. Three randomisation intervention arms and one control arm. Intervention arm 1 : weekly girls group mentor-led session (curricula). Intervention arm 2: curricula+health voucher. Intervention arm 3: curricula +health voucher +bank account	No specific disease burden, this study looks at unique adolescent and young adult ‘vulnerabilities’ influencing reproductive health and poverty-driven disease. Structural barriers included poverty, poor access to banks, poor access to healthcare, financial insecurity as well as cultural pressures creating vulnerabilities around safe partnerships.	Relatively large study with large intervention that could be hard to replicate (and maintain) when resources are scarce.
Study 6b (study)* Austrian et al14 (2020)	Zambia. Cluster randomised controlled trial with longitudinal interval follow-up.	To conduct an intention to treat analysis to assess intervention impact (on social, health and economic assets, sexual behaviours, education and fertility outcomes).	Never married adolescent girls (n=3515 girls in intervention clusters and 1146 in control clusters) Evaluated at baseline and 2 and 4 years postintervention	This study showed lack of hypothesised change overall, though there were significant results in short-term outcomes. (This intervention did not lead to participants increasing broad-reaching changes in social and structural determinants.)	No significant results despite the rigour of this study.
Study 7 González et al23 (2017)	Argentina. Validation of TRAQ (in Spanish) 5.0. Descriptive/cross-sectional study with quantitative methods.	To validate transition readiness assessment questionnaire in Spanish	n=191, 96.3% understood and completed correctly. Age: 14+ years treated at Hospital Garrahan.	Chronic health conditions, assessed ‘Unmet Basic Needs Index’, which is a measure of structural poverty, but does not explain details of how that impacted validation	Does not address the structural barriers to transition that the TRAQ does not assess.
Study 8 Friesen et al21 (2015)	Alaska (AI/AN population). Review of three qualitative studies using ‘relational worldview framework’ qualitative analysis.	To evaluate collective versus individualistic culture and its impact on youth and healthcare.	AI/AN youth Conducted at a community based agency that provides services to self-identified AI/AN youth and young adults and their families in a three-county area	No particular disease burden Collective culture influences development and transition; therefore, the system needs to reflect these crucial developmental needs. Structural barriers were systemic structures that were based on individual cultural assumptions, rather than a collectivist culture to support developmental maturity and health-seeking behaviour.	Relational world view framework is difficult to use in other contexts. Difficult to blend cultures and practices in bigger systems.
Study 9 Azh et al15 (2017)	Tehran, Iran. School-based interviews. Analysed with grounded theory. Purposeful sampling with maximum diversity approach.	To explain adolescent and key informant perception of healthcare provision	n=65 adolescents, 9 youths (19–24 year olds), and 19 parents and key stakeholders involved in providing health services in 9 group discussions and 30 individual interviews	Otherwise healthy, discussion around puberty Disrespect for adolescent’s rights. Cultural and societal pressures. Inadequate information/lack of virtual platforms.	Some limitations due to specifically cultural implications in Tehran, limiting generalisability. The focus of this study on adolescents with no specific medical condition may have limited application to chronic paediatric-onset disease.
Study 10 Anelli et al18 (2017)	Brazil. Surveyed paediatric rheumatologists, which was culturally adapted from Childhood Arthritis Rheumatology Research Alliance (USA and Canada).	To better understand transition practices, including tools and best practices in rheumatology in Brazil	n=112 paediatric rheumatologists, 76 responded to survey 13% reported that they had a well-established programme, and 14% reported being satisfied with their transition process. 80% did not use any specific process.	Rheumatological disease: Systemic lupus erythematosus, Juvenile idiopathic arthritis, Juvenile rheumatoid arthritis, Brazilian health system setup with poor infrastructure for ‘non-emergent’ planning This study was done in academic centres where technology was available for communication but not generalisable, given lack of email/text available country-wide.	Results are remarkably congruent with Canadian results, suggesting issues are global, though authors note some of the financial pressures and unique decentralisation of Brazilian health system may deprioritise transition, and therefore skew the results

*Protocol was included given relevance; full study was published in March 2020 and was reviewed in context (see study 6b).
†Adapted from Charmaz.30
AGEP, adolescent girls Empowerment programme; AGEP, Adolescent Girls Empowerment Program; AI/AN, American Indian/Alaska Native; ASD, autism spectrum disorder; SES, socioeconomic status; TRAQ, Transition Readiness Assessment Questionnaire.