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Health services research
Original research
Role of patient preferences in clinical practice guidelines: a multiple methods study using guidelines from oncology as a case
  1. Fania R Gärtner1,
  2. Johanneke E Portielje2,
  3. Miranda Langendam3,
  4. Desiree Hairwassers4,
  5. Thomas Agoritsas5,6,
  6. Brigitte Gijsen7,
  7. Gerrit-Jan Liefers8,
  8. Arwen H Pieterse1,
  9. Anne M Stiggelbout1
  1. 1 Medical Decision Making, Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
  2. 2 Clinical Oncology, Leiden University Medical Center, Leiden, Zuid-Holland, The Netherlands
  3. 3 Clinical Epidemiology, Biostatistics and Bioinformatics, Academic Medical Center, Amsterdam, North Holland, The Netherlands
  4. 4 Breast Cancer Association the Netherlands, Utrecht, The Netherlands
  5. 5 Division of General Internal Medicine and Division of Clinical Epidemiology, University Hospitals of Geneva, Geneva, Switzerland
  6. 6 Department of Health Research Methods, Evidence, and Impact, McMaster University Faculty of Health Sciences, Hamilton, Ontario, Canada
  7. 7 Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands
  8. 8 Surgery, Leiden University Medical Center, Leiden, The Netherlands
  1. Correspondence to Professor Anne M Stiggelbout; a.m.stiggelbout{at}lumc.nl

Abstract

Objective Many treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations.

Design We performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.

Setting Dutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.

Participants 14 CPG panel members.

Main outcomes For treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel’s benefits–harm trade-off underlying recommendation; and advice on patient involvement in decision-making.

Results We identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel’s preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time.

Conclusions The motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

  • protocols & guidelines
  • shared decision making
  • evidence-based medicine
  • GRADE
  • patient preferences
  • choice awareness

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, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2019-032483

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    Footnotes

    • Twitter @ThomasAgoritsas, @AMStiggelbout

    • Contributors FRG, AHP, JEP and AMS designed the study. FRG, DH, BG, G-JL and AMS were involved in acquisition of the data. FRG and AMS conducted the data extraction. FRG, ML, DH, TA, G-JL, AHP and AMS were involved in interpreting the results. FRG and AMS wrote the first draft and final version of the manuscript. JEP, ML, DH, TA, BG, G-JL and AHP have read the manuscript critically, and made improvements to the content and wording of the work. FRG, JEP, ML, DH, TA, BG, G-JL, AHP and AMS all agreed to the final version. The corresponding author attests that all listed authors meet the authorship criteria and that no others meeting the criteria have been omitted.

    • Funding This work was supported by the Dutch Cancer Society grant number UL 2015-7615.

    • Competing interests TA and ML are active members of the GRADE working group. BG is employed at the Netherlands Comprehensive Cancer Organisation (IKNL), the organisation responsible for the development of the CPGs that were analysed.

    • Patient consent for publication Not required.

    • Ethics approval The study protocol did not require review from a medical ethics committee as no patients or lay people were recruited.

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

    • Data availability statement Data are available from the last author upon reasonable request.