Original articleDevelopment and Validation of Participation and Positive Psychologic Function Measures for Stroke Survivors
Section snippets
Participants
We recruited participants from the pool of stroke patients who were admitted for inpatient rehabilitation at the Rehabilitation Institute of Chicago between 1993 and 2007. A research registry covering discharges from 1993 to 2000 was used to identify 780 stroke survivors. This sample was supplemented by 912 stroke survivors who had been discharged from 2001 to 2007. Excluded from both samples were non-English speakers and persons with severe cognitive deficits or medical conditions that
Sample Demographic Characteristics
Of 1692 patients to whom we mailed recruitment materials, 111 agreed to participate and completed an interview. Those who were not enrolled were dead (n=538), refused to participate (n=154), met exclusion criteria (n=30), or could not be contacted by mail after extensive Internet searches (n=859). Many of the unlocated former patients may be dead or reside in institutional settings. Average ± SD age of participants was 65.7±15.9 years, 55% of the sample were women, 58% were married, 16% were
Discussion
In this study, we built 5 item banks that described aspects of the QOL of stroke survivors who were at least 1 year postrehabilitation. Our original intent was to develop 2 measures of participation: ability to participate and satisfaction with participation. However, in both domains, social role items loaded separately from social activity items. We therefore developed separate banks for the social role and social activity items and treated them as subdomains. This finding is consistent with
Conclusions
In summary, we calibrated item banks for 5 QOL components not typically assessed in a stroke population. A single bank was developed for the positive psychologic function domain. However, because of multidimensionality in the ability-to-participate and satisfaction-with-participation domains, we developed separate banks for these subdomains. These NeuroQOL item banks are promising measures for assessing various aspects of QOL with good internal and external construct validity.
Acknowledgments
The authors thank Linda Lovell, BS, and Thomas Snyder, MHA, for data access; Kendall Stagg, MPA, for project management; and Amy Peterman, PhD, and John Salsman, PhD, for providing valuable insights.
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Project supported by the National Institute of Neurological Disorders and Stroke (grant no. HHSN 2652004236-01C), Boehringer Ingelheim, and in part by the National Center for Research Resources, National Institutes of Health (grant no. UL1RR025741); the National Institute of Disability and Rehabilitation Research funded the Rehabilitation Research and Training Center (grant no. H133B031127), which established a data repository from which early study participants were identified.
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
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