Co-design of a new integrated care model with people affected by Huntington’s Disease: a mixed methods study

Abstract

Background: people living with neurological conditions have needs that require an integrated care approach. Existing models of integrated care have often emphasized system structures but neglected the micro-level interactions that matter most to people.

Objectives: to develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington’s Disease (HD).

Methods: a mixed methods study with a co-designed approach was delivered through three phases. This paper reports on the latest two, where interviews and workshops were conducted with people with lived experience of HD and professionals, from January to October 2024. Patient and public contributors were involved from project design to data interpretation.
Results: Three themes were identified that position integrated care from the perspective of those affected by HD, representing these as the EC4Neuro model. Theme 1 identified the core components of micro-level integrated care: expert knowledge, person- and family-centered care, care coordination and continuity of care. Theme 2 underlined access inequities. Theme 3 highlighted people’s responsibility to manage care without true agency to do so. The workshops prioritized strategies that enhance relational continuity between service users and providers. A tiered strategy was undertaken to support decision-making towards improving person-centered outcomes.

Conclusions: EC4Neuro is the first integrated care model developed in HD. Its co-designed approach with end users successfully embedded people’s perspective to guide what needs to be achieved at the micro-level. The EC4Neuro model offers prospective replication opportunities, particularly for stakeholders concerned with reducing access inequities and supporting relational continuity.
Patient or Public Contribution: A group of 25 experts by lived experience of HD and other neurological disorders, co-designed this research project, working with the researchers from conception of the studies to analysis and interpretation of the data.

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Identifiers

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

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

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

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

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