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Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.

Sandra Bartolomeu PiresDorit KunkelChristopher KippsNick GoodwinMari Carmen Portillo
Published in: Health expectations : an international journal of public participation in health care and health policy (2024)
Thirty people living with LTNCs were involved in this review, through defining research questions, validating the importance of the project, and increasing the researchers' understanding on what matters to service users. A patient and public involvement subgroup of representatives with lived experience on PD, MS and HD identified the need for more person-centred integrated care, with specific concerns over care fragmentation, care duplication and care continuity. This was key to data analysis and formulating the characteristics of successful and unsuccessful integrated care programmes from the perspective of service users. The discrepancy between service users' needs and the outcomes assessed in the literature point to user-driven research as the solution to address what matters to patients and caregivers.
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