Development of a Neurogenic Orthostatic Hypotension Activities of Daily Living (nOH-ADL) Scale

Development of a Neurogenic Orthostatic Hypotension Activities of Daily Living (nOH-ADL) Scale

2016 68th AAN Annual Meeting

Francois, C. | Houle, C. | Duhig, A. | Volume: , Issue: , Pages: ,

BACKGROUND : Patients with neurogenic orthostatic hypotension (nOH) experience a decrease in blood pressure upon standing. nOH occurs in patients with Parkinson’s disease (PD) or other neurodegenerative diseases. The most frequently reported symptoms of nOH include lightheadedness, dizziness, feeling like you might black out, and syncope. Patients with nOH limit their activities of daily living (ADL) and experience a decreased quality of life because of an increased potential for falls and fall-related injuries. However, as nOH is a relatively rare disorder with few treatment options, there are no specific scales measuring the impact of nOH on ADLs. OBJECTIVE: To develop an ADL scale specific to nOH. METHODS: Because of the rarity of nOH, standard process for scale development could not be applied, and a pragmatic approach to development was adopted. The most commonly used ADL scales in PD and Alzheimer’s were reviewed, and domains and items relevant to nOH were selected. Questions were adapted to nOH and rephrased to standardize the response options. The draft questionnaire was reviewed by patients with nOH, followed by a cognitive debriefing interview over the telephone. Item content was revised to address the patients’ feedback. RESULTS: The nOH ADL Scale assesses difficulties patients experience when completing basic tasks of everyday life, such as eating, bathing, dressing, and using transportation. The scale includes 11 items, generally uses a 4-point scale with higher scores indicating a greater level of impairment, and takes approximately 12 minutes to administer. Cognitive debriefing provided evidence for content validity and indicated that the items were relevant to patients and easy to understand. The questionnaire has been included in a prospective study on patients with nOH treated with droxidopa. CONCLUSION: Our pragmatic approach resulted in a new nOH-specific ADL questionnaire. Full validation will be available after completion of an on-going observational study.