Self-management following stroke. Concepts and measurement

Abstract

Stroke is a major cause of disability world-wide, representing a significant health and social burden (Feigin et al., 2009). Self-management has potential importance for reducing the personal and health service impact of illness, but is yet to be fully understood or measured in stroke (Boger et al., 2013, Jones & Riazi, 2011).This research sought to develop a new patient-reported outcome measure (PROM) of self-management following stroke. A mixed methods paradigm with three distinct phases was adopted. Focus group methodology (n=28) first explored self-management from the perspectives of people following stroke and informed the content of a preliminary PROM. Three key themes identified from the data affect stroke self-management; Individual capacity; Support for self-management and Self-management environment. Following the focus group enquiry, the preliminary PROM item pool consisted of 57 items relating to Individual Capacity. Cognitive Interviewing methodology (n=11) was next employed to refine the item pool and explore acceptability of the items. Finally, the revised PROM was subject to psychometric evaluation using responses from a nationally derived sample (n=87). Mokken scale analysis and correlations with additional outcome measures of theoretical importance were used to identify scale structure and investigate reliability and validity. The subsequent PROM, the Stroke Self-Management Questionnaire (SSMQ) forms a unidimensional Mokken scale which measures the construct of self-management competency. The SSMQ possesses excellent internal consistency reliability (Mokken r 0.89), test retest reliability (ICC 0.928) and represents a valid tool for the evaluation of stroke self-management interventions.

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ORCID for Sue Latter: orcid.org/0000-0003-0973-0512

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