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Development and validation of the Swedish national stroke register Riksstroke’s questionnaires in patients at 3 and 12 months after stroke: a qualitative study
  1. Susanne Palmcrantz1,
  2. Disa K Sommerfeld2
  1. 1 Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden
  2. 2 Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
  1. Correspondence to Dr Susanne Palmcrantz; susanne.palmcrantz{at}ki.se

Abstract

Objectives Because healthcare and community organisations and treatment methods are always changing, continuous changes might also be needed in questionnaires that register patient-reported outcomes (PRO) and patient-reported experiences (PRE) of healthcare interventions and community support. Thus, the aim of this study was to test the content and face validity, including the readability, of two questionnaires used by the Swedish national stroke register Riksstroke to register PRO and PRE at 3 and 12 months poststroke.

Design Clinicians’ and patients’ knowledge and experiences of current care, rehabilitation, community support and functioning after stroke as well as comments noted regarding the content and layout of the questionnaires were retrieved in focus-groups with expert clinicians and in patient interviews analysed with content analysis. A workgroup of experts with experience in stroke care, rehabilitation and research repeatedly revised the questionnaires regarding content, layout and consistency throughout the validation process.

Participants The participants included allied healthcare professionals, nurses and physicians with extensive experience of working with stroke care and rehabilitation (expert clinicians) as well as patients who had suffered a stroke 3 or 12 months earlier and who were purposefully selected among those who had completed and returned the 3-month questionnaire.

Setting Expert clinicians met at their work place in focus-groups. Patients were interviewed where they resided, that is, in their home or nursing home, including rural, town and city areas in Sweden.

Results Based on clinical expertise and comments from the patients (n=47), the questionnaires were revised and then found to be valid in terms of content validity and face validity, including readability.

Conclusions The present evaluation emphasises the need for testing aspects of validity, including readability, of questionnaires addressing PRO and PRE and for the recurrent revision of such questionnaires in order to maintain their validity in a society undergoing constant change.

  • stroke
  • questionnaire
  • validity
  • patient reported
  • outcome

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors SP and DS both contributed with the methodology. SP collected all of the data. SP and DS contributed with critical analysis of the methodology and wrote the manuscript.

  • Funding The present project was funded by the Swedish national quality registries (nationella kvalitetsregister).

  • Competing interests None declared.

  • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

  • Ethics approval Regional Ethical Review Board in Umeå, Sweden (2012-294-31M).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional unpublished data from the study are available.

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