ArticleOrphanet journal of rare diseases2024
Experiences of quality of life and access to health services among rare disease caregivers: a scoping review.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
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Who cites it
13 citing papers in PubMed.
- Efficacy and safety of recombinant von Willebrand factor in on-demand treatment of children with von Willebrand disease: up to 4 years of phase 3/3b follow-up.Research and practice in thrombosis and haemostasis · 2026Trial
- Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Psychological impact of being a caregiver to children with infantile neuroaxonal dystrophy.Arquivos de neuro-psiquiatria · 2026Article
- Examining the daily experiences of parents caring for children with rare neurogenetic conditions using over 18,000 ecological momentary assessments.Scientific reports · 2026Article
- Article
- Improving Lifelong Comprehensive Care Coordination in Nephropathic Cystinosis: Multidisciplinary Perspectives.Kidney international reports · 2026Review
- The social phenomenon of rare diseases: a logical-modal analysis.Frontiers in sociology · 2026Article
- AppER: Design and Validation of a Mobile Application for Caregivers of Patients with Duchenne Muscular Dystrophy and Their Families in Spain and Latin America.Muscles (Basel, Switzerland) · 2025Article
- Validation of the Zarit burden interview for Polish caregivers of individuals with rare diseases: a multidimensional approach to assessing caregiver burden.BMC psychology · 2025Article
- Quality of life among children and young adults with rare diseases. A parental perspective.European journal of pediatrics · 2025Article
- Double burdened yet resilient: quality of life of caregivers of people with X-linked hypophosphatemia.JBMR plus · 2025Article
- Beyond the face: multidimensional care challenges and unmet needs in Hemifacial Microsomia families.Frontiers in public health · 2025Article
- Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study.JMIR research protocols · 2024Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundResearch on rare diseases focuses less on caregivers, who play an important role in meeting the medical and social needs of the people they care for. Caregivers of people with rare diseases face negative outcomes due to problems with diagnosis, caring for complex conditions and expensive treatments. However, the factors that affect their quality of life are poorly understood. Poor mental and physical health of caregivers has a direct impact on the person they are caring for.
methodsTo explore the literature on this topic, we conducted a scoping review in which we identified and analysed relevant studies to find out how extensively this topic has been researched. The articles were retrieved from the bibliographic databases PubMed, Ovid Medline and Ebsco Cinahl.
resultsWe initially identified 299 references and then included thirty-four articles. The included articles address three main topics, namely caregiver quality of life, health care accessibility, and the impact of health care accessibility on caregiver QOL.
conclusionThis study provides information that is important to multiple providers of services as it can help to better understand caregivers and people with rare diseases and improve the quality of services offered. It highlights areas with the greatest need for change and offers insight into the complexity of caring for people with rare diseases, assisting policymakers in developing policies to support informal caregivers.
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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.