F104 Quality of life in Huntington’s disease: a qualitative exploration using the needs-based model
Year: 2024
Type: conference-abstract
Abstract: Background Huntington’s Disease (HD) has a significant impact on the quality of life (QoL) of patients with HD and their partners. Yet, research exploring QoL, including instruments that meaningfully capture QoL, continue to be scarce. The needs-based model argues that QoL is derived from an individuals’ ability to fulfil basic needs, when these needs are not met QoL is poor. The model can be used to explore the impact of HD on QoL in a holistic way involving both patients and their partners. Aims To explore how HD impacts the QoL of manifest patients, premanifest individuals and their respective partners. Methods/Techniques 12 NHS Trusts were invited to recruit participants. 120 interviews took place; 23 were completed in Ireland: 30 manifest patients (56.7% Male, aged 33-75; M= 58.6 (SD=10.5)); 30 premanifest individuals (53.3% Male, aged 24-70 M=47.3 (SD=13.4)); 31 partners of manifest patients (51.6% Male, aged 38-75, M=58.3 (SD=9.4)) and 29 partners of premanifest individuals (55.2% Male, aged 30-69, M=46.1 (SD=10.7)). 20 additional interviews (per group) took place in Czechia, Germany, Italy and Netherlands to check for cultural consistencies. Thematic analysis identified 44 needs affected by HD. Results/Outcome Manifest participants commonly discussed safety and security, dependency, role. Premanifest participants discussed autonomy, preoccupation, future uncertainty. The latter two were repeatedly discussed by premanifest partners. Relationships were important, affecting both partner groups, alongside communication and hobbies for manifest partners. Conclusions These findings provide a novel contribution to QoL in HD, by highlighting aspects not previously reported upon. Data generated will be used to develop four needs-based QoL measures.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374566