Abstract
This paper will present the results of a national survey in England that assessed integrated care from the perspective of service users living with a rare neurodegenerative condition, Huntington’s Disease (HD). It is part of the Integrate-HD project that seeks to develop an integrated care model that responds to the complex needs of people and families living with this genetic hereditary disorder. The first phase of the project found a lack of evidence of integrated care in HD, despite this being one of the most complex neurological conditions, and a lack of information on people’s experiences with health and care in England.
Therefore, the purpose of the survey was to capture the experiences of adults at risk, gene positive, diagnosed with the disease, caregivers and former caregivers of people living with HD. The survey was tailored to assess people’s experiences and identify their unmet needs and, in this way, create a benchmark from which to prioritise, strategize and improve future care.
The survey was co-designed with people living with HD from two different patient and public groups: one recruited specifically for the Integrate-HD project, where people were more lay; and, HD Voice, from the Huntington’s Disease Association (HDA) England & Wales, with more experienced contributors. The survey domains were based on a previous systematic literature review, where findings were interpreted with patient and public involvement and from it, four characteristics were identified as key elements to successful integrated care programmes: expert knowledge, multisectoral care coordination, care continuity and a person-centred approach. The project was led by a Nurse PhD researcher and a team of researchers with expertise in mixed-methods, HD and integrated care. The survey was reviewed by third sector collaborative organizations.
Integrate-HD recruited for seven months using social media (e.g., Instagram account @integrate_hd), charities engagement and electronic communication. Patient and public contributors were spokespersons for the project, assisted with recruitment strategies and connected the researchers with gatekeepers.
More than 150 people participated. Analysis is undergoing and detailed key findings will be presented at the conference. From the perspective of HD service users in England, current care is fragmented. Using the person-centred care definition from National Voices, more than half of the people ranked care very poor, poor or had a neutral opinion. Few people reported agreeing with their care experience matching person-centred integrated care. The survey highlights “post-code lottery” and people’s unmet needs.
The survey benchmarks integrated care from the perspective of service users, pinpointing areas that are fragmented, but also identifies what is working well, gathering important knowledge that can be potentially translated to other contexts.
Next, interviews with service users and providers will be conducted, to explore different working models. Learnings will be used to design an integrated care model that addresses the needs of people living with HD.