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. 2018 Aug 25;18(1):125.
doi: 10.1186/s12883-018-1129-x.

Characterization of the symptoms of neurogenic orthostatic hypotension and their impact from a survey of patients and caregivers

Daniel O Claassen  1 , Charles H Adler  2 , L Arthur Hewitt  3 , Christopher Gibbons  4
Affiliations

Characterization of the symptoms of neurogenic orthostatic hypotension and their impact from a survey of patients and caregivers

Daniel O Claassen et al. BMC Neurol. .

Abstract

Background: Neurogenic orthostatic hypotension (nOH) results from impaired vasoconstriction due to dysfunction of the autonomic nervous system and is commonly associated with Parkinson disease (PD), multiple system atrophy (MSA), and pure autonomic failure. nOH can increase the risk of falls due to symptoms that include postural lightheadedness or dizziness, presyncope, and syncope. The purpose of this study was to obtain information from patients and caregivers regarding the symptoms and burden of nOH to expand on limited knowledge regarding the impact of nOH on quality of life.

Methods: This author-designed survey included questions regarding nOH (e.g., frequency and impact of symptoms, management) and was conducted online by Harris Poll via distribution to individuals who agreed to participate in Harris Poll online surveys or who were members of relevant disease advocacy organizations. Eligible patients were aged ≥ 18 years with PD, MSA, or pure autonomic failure and ≥ 1 of the following: orthostatic hypotension (OH), nOH, low blood pressure upon standing, or OH/nOH symptoms. Eligible caregivers cared for such patients but were not necessarily linked to any patient participant.

Results: Survey responses were received from 363 patients and 128 caregivers. PD was the most frequent underlying disorder (90% of patients; 88% of individuals managed by the caregivers). Despite meeting survey diagnosis criteria, a formal diagnosis of OH or nOH was reported by only 36% of patients and 16% of caregivers. The most frequent symptoms of nOH were dizziness or lightheadedness, fatigue when standing, and difficulty walking. A negative impact on patient quality of life caused by nOH symptoms was reported by 59% of patients and 75% of caregivers. Most respondents (≥87%) reported that nOH symptoms adversely affected patients' ability to perform everyday activities (most frequently physical activity/exercise, housework, and traveling). Falls (≥1) in the previous year due to nOH symptoms were reported by 57% of patients and 80% of caregivers.

Conclusions: These survey results support the premise that nOH symptoms have a substantial negative impact on patient function and quality of life. The relatively low rates of formal nOH/OH diagnosis suggest the need for heightened awareness regarding the condition and its symptom burden.

Keywords: Disease burden; Multiple system atrophy; Neurogenic orthostatic hypotension; Parkinson disease; Quality of life.

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Conflict of interest statement

Ethics approval and consent to participate

The study was performed in accordance with ethical standards (e.g., 1964 Helsinki Declaration and later amendments or the comparable). Respondents were selected from individuals who agreed to participate in Harris Poll online surveys or were members of certain advocacy organizations who actively decided to participate in the survey. For research in which participants are intended to remain anonymous, Harris Poll uses tools and methods to ensure that there is no reasonable possibility of identifying an individual participant in the reports created (e.g., individual responses collected are combined to produce “aggregated” reports). As an anonymous survey, the study was exempt from ethics approval based on Code of Federal Regulations Title 45, Part 46, Subpart A, Section 46.101b, Category 2 criteria.

Consent for publication

Not applicable.

Competing interests

DOC receives grant support from the National Institutes of Health and the Michael J. Fox Foundation for Parkinson’s Research; is a site investigator for clinical trials sponsored by Vaccinex, AbbVie, CHDI, and Auspex/Teva Neuroscience; and has received personal remuneration from Lundbeck, Teva Neuroscience, Acadia, and AbbVie for consulting, advisory board participation, and speaking honoraria. CHA has received research funding from the National Institutes of Health and the Michael J. Fox Foundation for Parkinson’s Research and consulting fees from Acadia, Acorda, Adamas, Cynapsus, Jazz, Lundbeck, Minerva, Neurocrine, and Sunovion. LAH is an employee of Lundbeck Medical Affairs. CG has served on advisory boards for Lundbeck and Pfizer and on data safety monitoring boards for Janssen and Astellas, and has received grants from Grifols and Celgene.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Proportion of patient respondents reporting postural nOH symptoms.* nOH=neurogenic orthostatic hypotension. *Reported symptoms could be experienced upon sitting or standing up, when standing for long periods of time, or during a change in position
Fig. 2
Fig. 2
Daily pattern of most frequent/severe nOH symptoms as reported by a patients and b caregivers.* nOH = neurogenic orthostatic hypotension. *Respondents in the patient and caregiver cohorts were not paired
Fig. 3
Fig. 3
nOH symptom impact on patient daily activities as reported by a patients and b caregivers.*,† nOH = neurogenic orthostatic hypotension. *Respondents in the patient and caregiver cohorts were not paired. †Percentages rounded to the nearest whole number
Fig. 4
Fig. 4
nOH symptom-related limitations on patient daily activities as reported by a patients and b caregivers.* nOH = neurogenic orthostatic hypotension. *Percentages represent the proportion of respondents who reported the patient reduction or stopping of the activity. Respondents in the patient and caregiver cohorts were not paired
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