Co-Design of a New Integrated Care Model With People Affected by Huntington's Disease: A Mixed Methods Study

Area of Science:

• Neurology
• Integrated Care Models
• Patient-Centered Research

Background:

• Neurological conditions necessitate integrated care approaches.
• Current models often overlook crucial micro-level interactions vital to patients.
• People with Huntington's disease (HD) face unique challenges in care delivery.

Purpose of the Study:

• To develop a micro-level integrated care model for Huntington's disease (HD).
• To represent care components most valued by individuals affected by HD.
• To incorporate patient and public perspectives in model development.

Main Methods:

• A mixed-methods, co-designed study involving people with lived experience of HD and professionals.
• Interviews and workshops conducted from January to October 2024.
• Patient and public contributors actively involved from project inception to data interpretation.

Main Results:

• The EC4Neuro model emerged, highlighting three key themes from the patient perspective.
• Core components identified: expert knowledge, person- and family-centered care, care coordination, and continuity of care.
• Identified issues include access inequities and patient burden in care management, with strategies to enhance relational continuity and support decision-making.

Conclusions:

• EC4Neuro is the inaugural integrated care model for HD, co-designed with end-users.
• The model successfully embeds the patient perspective for micro-level integrated care.
• Offers a framework for reducing access inequities and enhancing relational continuity in HD care and potentially other neurological conditions.