ArticleInternational journal of integrated care2020
Defining Coordinated Care for People with Rare Conditions: A Scoping Review.
Article in International journal of integrated care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers.
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Who cites it
27 citing papers in PubMed, 66 citations in OpenAlex.
- Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family.Journal of intellectual disability research : JIDR · 2026Article
- "If I go down, if I crumble, then everybody does" - identity crisis and emotional strain in parents of children with rare and undiagnosed conditions: a qualitative study.Orphanet journal of rare diseases · 2026Article
- Parent/caregiver needs during pediatric genome-wide sequencing: A scoping literature review.Journal of genetic counseling · 2026Article
- Strategic consensus on the clinical translation of advanced therapies in paediatric rare neurological disorders.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2026Article
- Improving Lifelong Comprehensive Care Coordination in Nephropathic Cystinosis: Multidisciplinary Perspectives.Kidney international reports · 2026Review
- Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Article
- Enhancing care coordination for neurofibromatosis type 1 in primary care: insights and applications for rare diseases.Journal of community genetics · 2025Article
- Spinal Muscular Atrophy Update in Best Practices: Recommendations for Treatment Considerations.Neurology. Clinical practice · 2025Article
- Translation, adaptation, and validation of the Care Coordination Instrument for cancer patients.BMC health services research · 2025Article
- Review of a specialist Rett syndrome clinic from 2003 to the COVID pandemic: clinic experience and carer perspectives.Orphanet journal of rare diseases · 2024Article
- Experiences of Unanticipated Outcomes Among Ethnically Diverse Living Kidney Donors: A Qualitative Pilot Study.Clinical transplantation · 2024Article
- Preferences for coordinated care for rare diseases: discrete choice experiment.Orphanet journal of rare diseases · 2024Article
- Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.Orphanet journal of rare diseases · 2023Article
- Embedding genomics across the NHS: a primary care perspective.Future healthcare journal · 2023Article
- Living with a rare disease - experiences and needs in pediatric patients and their parents.Orphanet journal of rare diseases · 2023Article
- Barriers and facilitating factors of care coordination for children with spinal muscular atrophy type I and II from the caregivers' perspective: an interview study.Orphanet journal of rare diseases · 2023Article
- Evaluating case management for caregivers of children with spinal muscular atrophy type I and II-an exploratory, controlled, mixed-methods trial.Frontiers in pediatrics · 2023Article
- Article
- Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.Orphanet journal of rare diseases · 2022Article
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 2 countries.
Funding
Abstract
introductionTo coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions.
methodsA systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions.
resultsWe included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination.
conclusionsCoordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.
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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.