| Title: |
Integrated Care for People Living With Rare Disease: A Scoping Review on Primary Care Models in Organization for Economic Cooperation and Development Countries |
| Authors: |
Mirkovic, Nada; McGlynn, Anna; Abdi, Fatemeh; Tam, Michael; Crampton, Reginald; Lim, Kean-Seng; Palmer, Elizabeth; Taylor, Natalie; Harris-Roxas, Ben |
| Source: |
urn:ISSN:2150-1319 ; urn:ISSN:2150-1327 ; Journal of Primary Care & Community Health, 16, 21501319241311567-21501319241311567 |
| Publisher Information: |
SAGE Publications |
| Publication Year: |
2025 |
| Collection: |
UNSW Sydney (The University of New South Wales): UNSWorks |
| Subject Terms: |
4203 Health Services and Systems; 42 Health Sciences; Clinical Research; Rare Diseases; Primary Health Care; Health Services; 8.1 Organisation and delivery of services; Generic health relevance; 3 Good Health and Well Being; Humans; Delivery of Health Care; Integrated; Developed Countries; Developing Countries; continuity of patient care; delivery of care; family physicians; general practitioners; implementation science; anzsrc-for: 4203 Health Services and Systems; anzsrc-for: 42 Health Sciences; anzsrc-for: 1117 Public Health and Health Services; anzsrc-for: 1199 Other Medical and Health Sciences; anzsrc-for: 4205 Nursing; anzsrc-for: 4206 Public health |
| Description: |
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. |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
unknown |
| Relation: |
https://hdl.handle.net/1959.4/104166; https://doi.org/10.1177/21501319241311567 |
| DOI: |
10.1177/21501319241311567 |
| Availability: |
https://hdl.handle.net/1959.4/104166; https://unsworks.unsw.edu.au/bitstreams/2e6e9534-fe6a-4f0f-81d4-256dd8d23167/download; https://doi.org/10.1177/21501319241311567 |
| Rights: |
open access ; https://purl.org/coar/access_right/c_abf2 ; CC BY ; https://creativecommons.org/licenses/by/4.0/ ; free_to_read |
| Accession Number: |
edsbas.B3AABF70 |
| Database: |
BASE |