ReviewPediatric reports2023
Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.
Review in Pediatric reports, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 9 citations in OpenAlex.
- Barriers to access to health services for people with orphan-rare diseases in Huila, ColombiaBiomedica : revista del Instituto Nacional de Salud · 2026Article
- Assessing healthcare experiences and barriers to care among individuals with ectodermal dysplasia.Orphanet journal of rare diseases · 2026Article
- Unmet Needs in the Care of Patients with Duchenne Muscular Dystrophy in Brazil.Arquivos de neuro-psiquiatria · 2026Observational
- Long-read sequencing and next-generation CRISPR editors: a unified pipeline for rare disease precision medicine with ethical and regulatory perspectives.Frontiers in medicine · 2026Review
- Transitioning adolescents with rare forms of diabetes to adult care: challenges and perspectives.Endocrine connections · 2025Review
- Nurses' Knowledge of Rare Diseases: A Systematic Review.Nursing reports (Pavia, Italy) · 2025Review
- A coordinated multidisciplinary model of care is needed for child and family centered care in pediatric genetic cancer risk services: a scoping review.Familial cancer · 2025Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Nature-based interventions for individuals with rare skeletal disorders: evaluation of a 5-day sailing program on health-related quality of life.Scientific reports · 2024Article
- [Rare diseases in a medical genetics service of population with social security].Revista medica del Instituto Mexicano del Seguro Social · 2024Article
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as well as costly and specialized treatments. Comprehending patients' and parents' needs through a mixed systematic review is essential for healthcare system planning. This mixed systematic review explored barriers to and facilitators of effective care for adolescents with RDs as perceived by patients and their parents. Three databases (2008-2023) were searched and twenty-five articles were selected and critically appraised with the Mixed Methods Appraisal Tool (MMAT; version 2018). The review followed a convergent integrated approach for data extraction according to Joanna Briggs Institute's (JBI) mixed method systematic review (MMSR) methodology. Subsequent reflexive thematic analysis categorized the barriers and facilitators into five levels (intrapersonal, interpersonal, institutional, community and public policy) following the conceptual framework of the socio-ecological model for healthcare promotion. Barriers on the institutional and public policy level stood out as the most frequently reported, resulting in unmet care needs and frustrating family dynamics. National and regional healthcare policies are rarely actually linked to pragmatic intervention programs with a measurable impact on patients' welfare. Targeted strategies involving primary care infrastructure and personnel for better coordination and management of the disease are discussed.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.