Objective: To determine the impact of neurogenic orthostatic hypotension (nOH) on the quality of life (QoL) of patients with autonomic dysfunction and the burden on their caregivers.

Background: nOH is characterized by a fall in blood pressure (BP) upon standing due to autonomic failure that may result in cerebral hypoperfusion symptoms, including dizziness, lightheadedness, syncope, and falls. Limited information exists on the impact of nOH on patients and caregivers.

Methods: A survey designed by the authors was conducted online by Harris Poll on behalf of Lundbeck (8/26/2016–10/3/2016). Eligible participants were US residents aged ≥18 years who were diagnosed with Parkinson disease (PD), multiple system atrophy, or pure autonomic failure and ≥1 of the following: orthostatic hypotension (OH), nOH, low BP, or OH/nOH symptoms, or were caregivers of an eligible patient. This was a descriptive study with no statistical analysis.

Results: Respondents included 363 patients (mean age, 63.4 years) and 128 caregivers. The most frequent underlying neurodegenerative disorder was PD (patients, 90%; caregivers, 88%). The most common nOH symptoms reported by patients and caregivers included dizziness/lightheadedness (97% and 97%), fatigue when standing (88% and 91%), and difficulty walking (80% and 89%). Most patients (94%) and caregivers (98%) reported that nOH symptoms impacted the patient’s QoL; this impact was classified as severe/very severe by 19% of patients and 33% of caregivers. Caregivers were more likely than patients to report a negative impact on the patient’s QoL (75% vs 59%) or a drastic change in the patient’s QoL (65% vs 40%) due to symptoms. Patients (39%) and caregivers (59%) reported that patients struggle to get their nOH symptoms under control, and 60% of patients reported often hiding or minimizing symptoms. Patients report they typically do not discuss symptoms with their health care provider (HCP) unless symptoms are severe (55%); further, 26% of patients reported being uncomfortable talking about the impact of nOH symptoms on their life with their HCP.

Conclusions: Both patients and caregivers report that nOH has a substantial negative impact on patient QoL. Symptoms of nOH are often minimized and may not be recognized by HCPs. Heightened awareness regarding nOH and its symptom burden should be an educational priority for patients, as well as the caregivers and HCPs of at-risk patients.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/neurogenic-orthostatic-hypotension-burden-of-illness-patient-and-caregiver-survey-impact-of-symptoms/