OBJECTIVES : Neurogenic orthostatic hypotension (nOH) is a rare subtype of orthostatic hypotension caused by an underlying neurodegenerative disease such as Parkinson’s disease (PD), multiple system atrophy (MSA), pure autonomic failure (PAF) or dementia with Lewy bodies (DLB). This study aimed to better understand the unique challenges of being a caregiver for an individual with nOH.

METHODS : An online survey conducted (August 2020 – October 2020) with informal caregivers of individuals diagnosed with PD, MSA, PAF or DLB in the United States consisted of demographic and clinical questions and validated instruments [EQ-5D, Hospital Anxiety and Depression Scale (HADS), Zarit Burden Interview (ZBI), Burden Scale for Family Caregivers-Short (BSFC-s) and the CarerQoL]. Analysis included descriptive statistics, independent t-tests, and hierarchical ordinary least squares regression models. Regressions were conducted on the whole sample and nOH sub-group.

RESULTS : In total 120 caregivers participated: 50% caring for an individual with a confirmed diagnosis of nOH. The caregivers’ mean age was 54, most were female (79%) and had been caregiving for an average of 5.5 years. 72% of the patients had PD and were diagnosed on average 7 years ago (main condition) and 3 years ago with nOH, where applicable. Caregivers of patients with nOH reported numerically greater burden across all outcomes compared to those without nOH. The CarerQoL-7D index (p = 0.043) and Visual Analogue Scale (p = 0.009) showed significant differences. Regression analysis showed that receiving pharmacological treatment for nOH vs. not receiving pharmacological treatment was the variable most consistently associated with significantly better caregiver health-related quality of life (HRQoL) across outcomes (EQ-5D Utility, HADS depression, ZBI, and CarerQol Index, p < 0.05).

CONCLUSIONS : This study is the first to assess the specific burden of nOH on informal caregivers and highlights the potential beneficial association of pharmacological treatment for nOH on caregiver HRQoL.