Beyond the burden: Measuring the quality of life impact of Parkinson's on family members/partners using FROM-16.

BackgroundFamily members of people with Parkinson's disease (PwP) often experience significant burden and poor quality of life (QoL). However, existing research predominantly centres on caregiver burden, with limited exploration of the broader impact of Parkinson's disease (PD) on family QoL.AimTo measure the impact of a person's PD on the QoL of their family members and partners using the validated generic Family Reported Outcome Measure-16 (FROM-16).MethodsA cross-sectional study recruited online UK family members/partners of PwP through patient support groups to complete the FROM-16.Results152 family members/partners (mean age=67 years, median=70, SD = 10.9; females=106) of patients (mean age=72.3, median=74, SD = 8.5; females=55) with PD completed the FROM-16. The FROM-16 mean total score was 15.3 (SD = 7.9), with 45% of family members/partners having a score ≥17, meaning "a very large effect" on QoL of family members. A significant predictor of family impact was if the patient was male. The most impacted areas were feeling worried, sad, and frustrated, and the impact on holiday, family activities, sleep and sex life.ConclusionsA person's PD greatly impacts the QoL of their family members/partners. Their well-being has important implications for supporting PwP and nursing home placement, hence the need to measure this impact to provide tailored support to these family members/partners. FROM-16 could be used to measure the family impact of PD in the routine practice of different settings.