G.P.309: Exploring the motivations for clinic attendance in Myotonic dystrophy (DM1) and Huntington’s disease (HD)

Abstract

Myotonic dystrophy (DM1) and Huntington’s disease (HD) are progressive, life limiting conditions with no treatments to slow or reverse neurodegeneration. Despite this, many affected individuals maintain regular follow-up at outpatient clinics. Understanding their motivations for clinic attendance may illuminate patients’ health care expectations and determine whether current standards of care meet their needs. Individuals with DM1 or HD attending an academic neuromuscular or movement disorders clinic, their caregivers and their health care professionals (HCPs) were invited to participate. Grounded theory, a qualitative research methodology, was used for data collection and analysis. Semi-structured interview transcripts were coded, and data within and between transcripts were compared to explore preliminary themes. Fourteen patients, 11 HCPs and 9 caregivers consented. Reasons for clinic attendance included: seeking knowledge about symptoms, treatment and research; measuring disease progression; advocacy; social interaction; and altruism. Some HCPs speculated that hope was a motivating factor, but this was not universally endorsed by patients and caregivers. Reasons for clinic attendance changed over time; measuring progression and obtaining social supports became more important as affected individuals’ health declined. Clinic attendance was regarded as a tangible and proactive method for disease management. While HCPs primarily used clinic time to assess symptoms, patients and caregivers valued the social interactions. The therapeutic relationship was significant; importantly, patients considered clinic a safe space where experts understood their limitations and treated them as individuals. Findings suggest that some aspects of care might be better addressed in the community; regardless, a holistic, multi-disciplinary approach is needed to address patients’ complex needs.