https://orcid.org/0000-0003-3592-1507
Abstract
Purpose
Despite evidence from clinical guideline development that physicians and patients show discordance in what they consider important in outcome selection and prioritization, it is unclear to what extent outcome preferences are concordant between experts and citizens when it comes to the context of primary prevention. Therefore, the objective of this study was to assess whether expert judgments about the importance of beneficial and harmful outcomes differ from citizen preferences when considering intervention options for a periodic health examination (PHE) program.
Participants and Methods
We conducted an online survey using a modified Delphi approach. The target population for the survey consisted of citizens who had attended the PHE (n=18) and experts who made evidence-based recommendations (n=11). Citizens and experts assigned a score on a 9-point Likert scale for each outcome of 14 interventions. We analyzed the intragroup agreement based on Krippendorff’s alpha and the intergroup agreement using the cube root product measure (CRPm). We further tested for significant differences between the groups using the Mann U-test.
Results
Agreements within the groups of citizens and experts varied across the interventions and tended to be poor (α ≤0 to 0.20) or fair (α = 0.21 to 0.40), with three exceptions showing moderate agreement (α = 0.44 to 0.55). The agreements between the citizens and experts across the interventions was fair (CRPm = 0.28) during the first Delphi rating round. The mean differences between the citizens and experts on the Likert scale ranged from 0.0 to 3.8 during the first rating round and from 0.0 to 3.3 during the second. Across interventions, the citizens rated the outcomes as more important than the experts did (p<0.01). Individual participants’ ratings varied substantially.
Conclusion
Because experts generally underestimated the outcomes’ importance to citizens, the involvement of citizens in guideline panels for preventive services is important.
Abbreviations
AGREE, Appraisal of Guidelines for Research and Evaluation; CRPm, cube root product measure; GRADE, Grading of Recommendations Assessment, Development and Evaluation; PHE, periodic health examination.
Data Sharing Statement
The survey developed for this study was conducted in the German language. A copy can be requested from the corresponding author. The datasets analyzed during the current study are not publicly available due to privacy or ethical restrictions but are also available from the corresponding author on reasonable request.
Ethics Approval and Informed Consent
Ethical approval was granted by the Danube University Research Ethics committee (EK GZ 16/2015–2018). We sought informed consent in the form of signatures from the participants of the focus groups and implied consent from the participants of the survey. The Danube University Research Ethics committee approved both forms of consent.
Acknowledgments
We would like to thank all the citizens and experts who participated in the survey. We would further like to acknowledge Bernd Kerschner for helping translate the survey into plain language.
Author Contributions
IS and GG were responsible for designing and interpreting the study. VT and IS set up the survey and collected the data. MS and IS performed the analysis. IS drafted the first version of the manuscript. All authors have critically reviewed the manuscript, agreed for it to be submitted to Patient Preference and Adherence, approved its final version, and agreed to take responsibility and be accountable for the contents of the manuscript.
Disclosure
The authors declare that they have no conflicts of interest in this work.