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Incorporation of the experience of patients in the development of a patient-reported outcome measures (PROM) for carpal tunnel syndrome

  • Clinical Article - Functional
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Abstract

Background

Regularly, patients are not involved in development of evaluative tools. Investigators define outcomes according to their interests. These can be different with those of the patients. Therefore, it may be difficult for patients to choose between treatment options, because the outcomes’ measurements may not reflect their problems in daily life. Most ideally, patients are involved from the beginning in the development of an outcome measurement tool. In this study, a new concept was demonstrated in which a questionnaire was developed in collaboration with patients to evaluate the quality of surgical care of a frequently encountered entity (carpal tunnel syndrome) that is meaningful for and understandable by patients.

Methods

Through a patient participatory research in an academic hospital, 50 consecutive patients who recently underwent surgical decompression of carpal tunnel syndrome were asked to optimize a questionnaire. An existing questionnaire was sent to the patients with the request to grade the relevance of each question. They were also offered the possibility to add questions from their point of view.

Results

All questions were found relevant. Finally, the questionnaire was modified by adding one question proposed by the patients. They wanted to include a question that would evaluate the effect of the treatment. Therefore, a question was introduced to evaluate the effect of the surgery on the symptoms and signs with a six-item Likert scale varying from severely worsened to free of signs and symptoms. Finally, the EQ-5D-5 L was added as a measure of quality of life.

Conclusions

The participation of patients is essential but until now not usual when a tool for evaluating the success of a treatment is developed. Information that is meaningful for patients but not obligate for researchers can easily be missed in the classical development of outcome measurement tools. This information will be crucial when future patients try to understand the findings of research in order to make an appropriate decision between eventual treatment options.

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Acknowledgments

The authors wanted to express their gratitude to the patients who actively collaborated in this study. Furthermore they thank Mrs. Linda Gerdsen-Drury as a native English speaking person with fluency of the Dutch language to backward translate the questionnaire that has first been translated into Dutch by RB and HB. Finally, we are grateful to EuroQol Group for granting us permission to use the EQ-5D-5 L.

Conflicts of interest

None.

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Authors and Affiliations

  1. Department of Neurosurgery, Radboud University Nijmegen Medical Centre, Geert Grooteplein- Zuid 10, 6525 GA, Nijmegen, The Netherlands

    Ronald H. M. A. Bartels & Hieronymus Boogaarts

  2. IQ healthcare, PO Box 9101, IQ 114, 6500 HB, Nijmegen, The Netherlands

    Gert Westert

Authors
  1. Ronald H. M. A. Bartels
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  2. Hieronymus Boogaarts
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  3. Gert Westert
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Corresponding author

Correspondence to Ronald H. M. A. Bartels.

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Bartels, R.H.M.A., Boogaarts, H. & Westert, G. Incorporation of the experience of patients in the development of a patient-reported outcome measures (PROM) for carpal tunnel syndrome. Acta Neurochir 155, 1057–1067 (2013). https://doi.org/10.1007/s00701-013-1708-y

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  • DOI: https://doi.org/10.1007/s00701-013-1708-y

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