ArticleThe patient2015
Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study.
Article in The patient, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it, 65 citations in OpenAlex.
- Adult complications of nephropathic cystinosis: a systematic review.Pediatric nephrology (Berlin, Germany) · 2021Pooled it
- Social support and maternal caregiving burden in families of children with Angelman syndrome in China: the mediating role of self-stigma.BMC psychology · 2026Article
- Article
- Single large-scale mitochondrial DNA deletion syndromes: scientific and family conference optimizes the collection of rare disease research outcomes.Orphanet journal of rare diseases · 2025Article
- Identifying the Impacts, Obstacles and Information Barriers for Parents of Children Living With Genetic Neurodevelopmental Disorders: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- Nursing's Role in Advancing Care for Rare Genetic Diseases.The Nursing clinics of North America · 2025Review
- Quality of life and mental health status in caregivers of pediatric patients with nephropathic cystinosis.Orphanet journal of rare diseases · 2024Observational
- Breaking the silence: A qualitative exploration of parental perspectives of children with Goldenhar Syndrome.Heliyon · 2024Article
- "I just wanted to speak to someone- and there was no one…": using Burden of Treatment Theory to understand the impact of a novel ATMP on early recipients.Orphanet journal of rare diseases · 2023Article
- Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.Orphanet journal of rare diseases · 2023Article
- Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support.Journal of patient-centered research and reviews · 2023Article
- Expert guidance on the multidisciplinary management of cystinosis in adolescent and adult patients.Clinical kidney journal · 2022Review
- Article
- Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.Children (Basel, Switzerland) · 2022Review
- Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective.Orphanet journal of rare diseases · 2022Review
- Access to genetic testing for rare diseases: Existing gaps in public-facing information.World medical & health policy · 2021Article
- Experiences and Perspectives of Patients with Non-HIV-Associated Lipodystrophies and Their Caregivers: A Qualitative Study.The patient · 2021Article
- Effect of Peer Mentoring on Quality of Life among CKD Patients: Randomized Controlled Trial.Kidney diseases (Basel, Switzerland) · 2021Article
- "I have SMA, SMA doesn't have me": a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA.Orphanet journal of rare diseases · 2021Article
- Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review.The patient · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeMedical advances have transformed the rare disease cystinosis from fatal in childhood to chronic and manageable into adulthood. Disease-specific advocacy groups and interaction via the Internet create opportunities for peer support, part of the changing experience and outcomes of the illness.
methodsThis study utilized a qualitative grounded theory approach to explore the experience of emerging adults and adults with cystinosis, and their parents. Individuals (n = 49) from 21 families were recruited online and in person for focus groups and/or individual interviews.
resultsIndividuals participate in the disease community through comfortability, comparing notes, witnessing/scaling, modeling/mentoring, and going/being public. Participants valued connection to others who shared their diagnosis, and seek to provide support and mentorship to younger patients and their families. Adults with cystinosis perceived themselves as role models but also as examples of potential progression and disability. Going/being public about one's health condition carried emotional and social risks. IMPLICATIONS: Individuals and families benefit from peer support and mentorship from others who share their illness experience. Participation in the disease community helps individuals (and caregivers) negotiate living with illness and the transition to adulthood. Further research regarding these processes within other disease communities is needed.
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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.