H036 Passivities of daily living (PDL), a multidisciplinary care method for patients with late stage huntington`s disease; exploratory mixed-methods study

<h3>Background</h3> PDL is a multidisciplinary care method based on patient`s wishes and focusses on stabilization and dealing with disabilities for which no recovery is possible. <h3>Aims</h3> This study aims to explore the impact of the method on pain and wellbeing of patient’s with late stage Huntington’s disease (HD) and the experiences of professional caregivers. <h3>Methods/Techniques</h3> Exploratory mixed-methods design: Qualitative: Focus group with seven Huntington-specialized, PDL-trained caregivers Quantitative: Comparison of regular care (1 week) vs. PDL care (3 weeks) using PACSLAC-d (pain) administered twice daily during washing/dressing and mealtimes and DS-DAT (well-being) administered once daily during a quiet moment. Caregiver questionnaire: Administered at the end of week 4. Topics: intensity of chorea, fatigue, medication changes and other social factors that could affect the patient‘s well-being and outcomes. <h3>Results/Outcome</h3> Focus group themes: Impact on quality of work enjoyment, stress and resilience of clients and staff, Conditions for implementing PDL care: ‘I see it more as a better distribution of the client’s or resident’s energy. So that someone (patient doesn’t waste their energy in the morning after washing and dressing for something that, in my eyes, is less important.’ ‘I think they (patient) choke less when they eat.’ Quantitative data from the PACSLAC-d pain assessment tool suggests that patients experienced less pain or discomfort during PDL care compared to regular care. <h3>Conclusions</h3> PDL can help patients with late-stage HD remain more energized for meaningful activities. To maximize its benefits, it is crucial to train the entire team in the method.