Measuring importance of outcomes to patients: a cross-sectional survey for the German anal cancer guideline

  • Ricardo N. Werner
    Correspondence
    Corresponding author. Klinik für Dermatologie, Venerologie und Allergologie Division of Evidence-Based Medicine (dEBM), Charitéplatz 1, D-10117 Berlin, Germany. Tel: +49 (0)30 450 618313 Fax: +49 (0)30 450 7518977.
    Affiliations
    Division of Evidence-Based Medicine (dEBM), Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Venerology and Allergy, Berlin, Germany
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  • Matthew Gaskins
    Affiliations
    Division of Evidence-Based Medicine (dEBM), Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Venerology and Allergy, Berlin, Germany
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  • Corinna Dressler
    Affiliations
    Division of Evidence-Based Medicine (dEBM), Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Venerology and Allergy, Berlin, Germany
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  • Alexander Nast
    Affiliations
    Division of Evidence-Based Medicine (dEBM), Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Venerology and Allergy, Berlin, Germany
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  • Corinna Schaefer
    Affiliations
    German Agency for Quality in Medicine (AEZQ), Department of Evidence Based Medicine and Guidelines, Department of Patient Information, Berlin, Germany
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  • Author Footnotes
    † These authors contributed equally to the work.
    Felix Aigner
    Footnotes
    † These authors contributed equally to the work.
    Affiliations
    Department of Surgery, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Campus Virchow-Klinikum and Charité Mitte, Berlin, Germany

    Department of Surgery, St. John of God Hospital (Krankenhaus der Barmherzigen Brüder) Graz, Graz, Austria
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  • Author Footnotes
    † These authors contributed equally to the work.
    Robert Siegel
    Footnotes
    † These authors contributed equally to the work.
    Affiliations
    Department of General, Visceral and Oncological Surgery, Helios Klinikum Berlin-Buch, Berlin, Germany

    Department of Visceral, Vascular, and Transplantation Surgery, Faculty of Health, Witten/Herdecke University, Witten, Germany
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  • Author Footnotes
    † These authors contributed equally to the work.
Published:September 25, 2020DOI:https://doi.org/10.1016/j.jclinepi.2020.09.026

      Abstract

      Objective

      We aimed to generate evidence on patients’ values and preferences to inform the development of the German national Evidence-based Anal Cancer Guideline.

      Study Design and Setting

      We developed a list of health outcomes based on a systematic search. We then asked anal cancer patients and experts of the guideline development group in an online survey to (a) rate the relative importance of the outcomes in different clinical situations using a nine-point, three-category scale, and (b) select seven outcomes they considered most important for decision-making in each situation.

      Results

      Participants rated almost half of the outcomes (45%) as critical for decision-making, and more than half (53%) as important. Only two outcomes (2%) were rated as low in importance. Agreement between expert and patient ratings was low to fair, and we found important discrepancies in how the relative importance of the outcomes was perceived. However, the rankings of outcomes were highly correlated.

      Conclusion

      Determining the relative importance placed by anal cancer patients on outcomes provided useful information for developing guideline recommendations. Our approach may be useful for guideline developers who aim to include the patient perspective. Moreover, our findings may help health professionals caring for anal cancer patients in joint decision-making.

      Keywords

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