Qualitative insights from partners of individuals with Huntington’s disease: the quality-of-life of an under-researched population

Objective Huntington’s disease (HD) is a rare, inherited neurodegenerative disorder with profound psychosocial consequences extending beyond affected individuals to their families. This qualitative study explored the quality of life (QoL) of partners of individuals with manifest and premanifest HD using a needs-based theoretical framework. Background While the impact of HD on patients is well documented, the experiences of partners remain under-researched, particularly across different stages of disease progression. Understanding partner QoL is essential to inform holistic care in rare neurodegenerative diseases. Methods Semi-structured interviews were conducted with adult partners or spouses of individuals with manifest or premanifest HD in the UK and Ireland (n = 60; UK = 48, Ireland = 12). An additional 37 interviews were conducted across Europe to assess cross-cultural consistency. Data were analysed using thematic analysis informed by the needs-based model of QoL. Results Thematic analysis identified 376 statements from partners of individuals with manifest HD and 491 from partners of individuals with premanifest HD. For partners of individuals with manifest HD, key themes included strained relationships, reduced communication, and loss of shared activities. Partners of individuals with premanifest HD reported persistent worry, relationship difficulties, and uncertainty about the future. Findings were consistent across participating European countries, highlighting the widespread and cross-cultural nature of these challenges. Conclusion HD significantly constrains partners’ ability to fulfil key human needs, negatively affecting QoL across disease stages. This study provides novel, theory-driven insights into an under-recognised population in rare disease research and supports the development of partner-specific QoL measures. These findings have important implications for the design and evaluation of interventions aimed at improving outcomes for families affected by HD and other rare neurodegenerative conditions.