Abstract
ObjectiveTo determine psychometric properties of the PROMIS-10 and Standard Stroke Question Set (by International Consortium for Health Outcome Measures) presented as a new 15-item Patient Related Outcome (PRO), for patients with: acquired Brain Injury (ABI), Multiple sclerosis (MS) and Parkinson’s disease (PD).MethodsIn an eight centre, UK wide, cross-sectional study we approached patients during their routine follow-up to complete: a disease-specific instrument (European Brain Injury Questionnaire, Multiple Sclerosis Impact Scale, and Parkinson’s disease questionnaire); General Health questionnaire with a Quality of life measure (EQ-5D); and PRO. We validated the PRO using factor analysis to define the latent construct domains, then calculated the internal consistency (Cronbach’s-α), and construct validity (correlation).ResultsThere were 340 patients with ABI (N = 91, median age = 55.1, 41% female), MS (N = 99, age = 58.9, 69%) and PD (N = 150, age = 74.5, 40%). Factor analysis suggested the PRO offered three domains of: physical health; functionality-capacity and mental health. All factors correlated strongly with the three disease-specific instruments, and the overall PRO had a large correlation with the EQ-5D (correlation>0.8) offering good construct validity and excellent internal consistency (∝>0.89).InterpretationThe PRO offered promising psychometric properties and could be used in place of disease specific questionnaires for patients with ABI, MS, and PD. The PRO has three construct domains, describing patients’: mental health; physical health; and functional-capacity, and may be used in routine clinical practice. The PRO offered both relevance to each of the three separate neurological conditions and generalisability across all the conditions, increasing its utility.
Highlights
It is vital to place the patient at the centre of healthcare investigation, and a wide range of patient reported outcome measures (PROMs) have been developed to capture patients’ own perception of their health and quantify outcomes that are relevant to them [1,2,3,4]
All factors correlated strongly with the three disease-specific instruments, and the overall Patient Related Outcome (PRO) had a large correlation with the EQ-5D offering good construct validity and excellent internal consistency (/>0.89)
Incomplete responses were omitted from the dataset, as complete responses were required for factor analysis, for Parkinson’s disease (PD) cohort 15 responses were removed, for acquired Brain Injury (ABI) 18 responses were removed and for the Multiple sclerosis (MS) cohort 10 responses were removed
Summary
It is vital to place the patient at the centre of healthcare investigation, and a wide range of patient reported outcome measures (PROMs) have been developed to capture patients’ own perception of their health and quantify outcomes that are relevant to them [1,2,3,4]. PROMs may be disease-specific or generic [5,6,7,8,9]. Each disease specific PROM requires dedicated training and familiarisation. Other advantages in using a Generic PROM tend to be shorter, they may be used across a range of conditions, require less training, and offer utility across different diseases, for example the EQ-5D [13]. These measures are often seen as less credible than disease-specific measures, with lower face validity [5]
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