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

Abstract

Introduction: people living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions.

Methods; a systematic review of the literature was undertaken evaluating multisectoral integrated care interventions in people living with Parkinson's disease (PD), Multiple Sclerosis (MS) and Huntington's disease (HD). Strength of evidence was rated for the different outcomes.

Results: a total of 15 articles were included, reporting on 2095 patients and caregivers, finding that integrated care can improve people's access to resources and reduce patients' depression. UK studies indicated improvements in patients' quality of life, although the international literature was inconclusive. Few programmes considered caregivers' outcomes, reporting no difference or even worsening in depression, burden and quality of life. Overall, the evidence showed a mismatch between people's needs and outcomes measured, with significant outcomes (e.g., self-management, continuity of care, care experience) lacking. Successful programmes were characterised by expert knowledge, multisectoral care coordination, care continuity and a person-centred approach.

Conclusions: the impact of integrated care programmes on people living with LTNCs is limited and inconclusive. For a more person-centred approach, future studies need to assess integrated care from a service-user perspective.

Patient and public contribution: 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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Identifiers

ORCID for Sandra Bartolomeu Pires: orcid.org/0000-0003-3711-9040

ORCID for Dorit Kunkel: orcid.org/0000-0003-4449-1414

ORCID for Christopher Kipps: orcid.org/0000-0002-5205-9712

ORCID for Mari C. Portillo: orcid.org/0000-0003-1583-6612

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