Integrated Care for People Living With Rare Disease: A Scoping Review on Primary Care Models in Organization for Economic Cooperation and Development Countries.
Introduction/Objectives: Individually rare, rare diseases are collectively common resulting in frequent health system use. Navigating the health system persists as a challenge. Primary care provides longitudinal contact with the health system and is placed to provide integrated rare-disease-care. Me...
| Publicado en: | Journal of Primary Care & Community Health Vol. 16; pp. 1 - 12 |
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| Autores principales: | , , , , , , , , |
| Formato: | research systematic review tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
1/8/2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=182120076&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 182120076 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 21501319 AZBE jtl: Journal of Primary Care & Community Health issn: 21501319 maglogo: Y pubinfo: dt: 1/8/2025 vid: 16 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 182120076 182120076 182120076 10.1177/21501319241311567 182120076 ppf: 1 ppct: 11 formats: tig: atl: Integrated Care for People Living With Rare Disease: A Scoping Review on Primary Care Models in Organization for Economic Cooperation and Development Countries. aug: au: Vidic, Nada McGlynn, Anna Abdi, Fatemeh Tam, Chun Wah Michael Crampton, Reginald Michael Lim, Kean-Seng Palmer, Elizabeth Emma Taylor, Natalie Harris-Roxas, Ben affil: University of New South Wales, Sydney, NSW, Australia sug: subj: Health Care Delivery, Integrated Primary Health Care Rare Diseases Organisation for Economic Co-Operation and Development Outcomes (Health Care) Patient Care Human Scoping Review Gray Literature Physicians, Family Implementation Science Continuity of Patient Care Health Services Accessibility Health Care Costs Quality Assessment Descriptive Statistics ab: Introduction/Objectives: Individually rare, rare diseases are collectively common resulting in frequent health system use. Navigating the health system persists as a challenge. Primary care provides longitudinal contact with the health system and is placed to provide integrated rare-disease-care. Methods: This scoping review used Joanna Briggs Institute and PRISMA methods with a Consolidated Framework for Implementation Research based data extraction tool to find how integrated rare-disease-care is delivered, enablers and barriers to the same, in primary care settings in contemporary literature in OECD countries. Results: The Primary Care Provider (PCP) role varies from routine primary care to shared-rare-disease-care models. In the 26 papers, the most frequently cited PCP roles included involvement in diagnosis (n = 14), care coordination (n = 16), primary and preventative care (n = 18), management of components of rare-disease-care (n = 13), and treatment monitoring (n = 10). Individuals whose PCP was actively involved in their care were reported to have shortened diagnostic delay, improved transitions of care across the lifespan, reduced unplanned utilization of emergency and hospital services, comprehensive psychosocial care, improved quality of life across environments including home, school and work and improved palliative care experiences. Conclusions: Sufficient communication from specialists, information, resources, time and reimbursement for complex care are still needed. Future integrated-rare-disease-care models should be developed by, or with, PCPs. pubtype: Academic Journal doctype: research systematic review tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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