Qualitative study of guideline panelists: innovative surveys provided valuable insights regarding patient values and preferences

Linan Zeng; Shelly-Anne Li; Mengting Yang; Lijiao Yan; Lise M Helsingen; Michael Bretthauer; Thomas Agoritsas; Per O Vandvik; Reem A Mustafa; Jason Busse; Reed A C Siemieniuk; Lyubov Lytvyn; Lingli Zhang; Romina Brignardello-Petersen; Gordon H Guyatt

doi:10.1016/j.jclinepi.2023.07.014

Qualitative study of guideline panelists: innovative surveys provided valuable insights regarding patient values and preferences

J Clin Epidemiol. 2023 Sep:161:173-180. doi: 10.1016/j.jclinepi.2023.07.014. Epub 2023 Jul 29.

Authors

Affiliations

¹ Evidence-based Pharmacy Centre/Pharmacy Department, West China Second University Hospital, Sichuan University, Chengdu, China; Key Laboratory of Birth Defects and Related Diseases of Women and Children, Sichuan University, Ministry of Education, Chengdu, China; Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada. Electronic address: zengl15@mcmaster.ca.
² Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
³ Evidence-based Pharmacy Centre/Pharmacy Department, West China Second University Hospital, Sichuan University, Chengdu, China; Key Laboratory of Birth Defects and Related Diseases of Women and Children, Sichuan University, Ministry of Education, Chengdu, China.
⁴ Centre for Evidence-based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, China.
⁵ Clinical Effectiveness Research, Department of Transplantation Medicine, Oslo University Hospital, Oslo, Norway.
⁶ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada; Division General Internal Medicine & Division of Clinical Epidemiology, University Hospital of Geneva, Geneva, Switzerland.
⁷ Department of Medicine, Lovisenberg Hospital Trust, Oslo, Norway.
⁸ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada; Division of Nephrology and Hypertension, Department of Internal Medicine, University of Kansas Medical Center, Kansas City, Kansas, USA.
⁹ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada; Department of Anesthesia, McMaster University, Hamilton, Ontario, Canada.
¹⁰ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada.
¹¹ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada; Department of Medicine, McMaster University, Hamilton, Ontario, Canada.

PMID: 37517505
DOI: 10.1016/j.jclinepi.2023.07.014

Abstract

Objectives: To explore guideline panelists' understanding of panel surveys for eliciting panels' inferences regarding patient values and preferences, and the influence of the surveys on making recommendations.

Study design and setting: We performed sampling and data collection from all four guideline panels that had conducted the surveys through October 2020. We collected the records of all panel meetings and interviewed some panelists in different roles. We applied inductive thematic analysis for analyzing and interpreting data.

Results: We enrolled four guideline panels with 99 panelists in total and interviewed 25 of them. Most panelists found the survey was easy to follow and facilitated the incorporation of patient values and preferences in the tradeoffs between benefits and harms or burdens. The variation of patient preferences and uncertainty regarding patient values and preferences reflected in the surveys helped the panels ponder the strength of recommendations. In doing so, the survey results enhanced a rationale for panels' decision on the recommendations.

Conclusion: The panel surveys have proved to help guideline panels explicitly consider and incorporate patient values and preferences in making recommendations. Guideline panels would benefit from widespread use of the panel surveys, particularly when primary evidence regarding patient values and preferences is scarce.

Keywords: Guideline; Interpretive description; Patient preferences; Qualitative study; Recommendation; Survey.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Evidence-Based Medicine*
Humans
Patient Preference*
Qualitative Research
Surveys and Questionnaires
Uncertainty