Self-management: a systematic review of outcome measures adopted in self-management interventions for stroke

Purpose: To systematically review the psychometric properties of outcome measures used in stroke self-management interventions (SMIs) to (1) inform researchers, clinicians and commissioners about the properties of the measures in use and (2) make recommendations for the future development of self-management measurement in stroke. Methods: Electronic databases, government websites, generic internet search engines and hand searches of reference lists. Abstracts were selected against inclusion criteria and retrieved for appraisal and systematically scored, using the COSMIN checklist. Results: Thirteen studies of stroke self-management originating from six countries were identified. Forty-three different measures (mean 5.08/study, SD 2.19) were adopted to evaluate self-SMIs. No studies measured self-management as a discreet concept. Six (46%) studies included untested measures. Eleven (85%) studies included at least one measure without reported reliability and validity in stroke populations. Conclusions: The use of outcome measures which are related, indirect or proxy indicators of self-management and that have questionable reliability and validity, contributes to an inability to sensitively evaluate the effectiveness of stroke self-SMIs. Further enquiry into how the concept of self-management in stroke operates, would help to clarify the nature and range of specific self-management activities to be targeted and aid the selection of existing appropriate measures or the development of new measures.

Implications for Rehabilitation

• The evaluation of complex interventions such as self-management interventions is aided by clear outcome expectations and valid and reliable measurement.

• This review demonstrates a lack of outcome measures that specifically measure self-management of stroke. A minority of outcome measures that were used as proxy indicators for SM fulfill some of the criteria for quality outlined in the COSMIN checklist.

• Clinicians should select measures which appropriately reflect expected outcomes, giving due consideration to the theoretical underpinnings of the intervention. Further work is required to establish which measures currently in use, if any, accurately reflect stoke self-management.

• In the meantime, researchers should seek to develop psychometrically sound measures of stroke self-management to assist effective evaluation of such interventions in stroke.