Journal Article

Impact of patient involvement on clinical practice guideline development: a parallel group study

Armstrong, Melissa J., Mullins, C. Daniel, Gronseth, Gary S., Gagliardi, Anna R.

2018

Overview

Background Patient and public involvement (PPI) is recognized as a key component of clinical practice guideline development with important implications for guideline implementability. The impact of PPI on guidelines, however, has not been rigorously assessed. Better understanding of the impact of PPI must start with guideline question formation, which drives all subsequent development steps. The aim of this study was to investigate the effect of PPI on guideline question formation and validate a conceptual model of patient and public contributions to guidelines. Methods For development of a clinical practice guideline on the topic of using amyloid positron emission tomography in the diagnosis of dementia, we convened two parallel guideline development groups, one with and one without patient representatives. Participating physicians were randomized to group assignment. Each group developed Population, Intervention, Comparator, Outcome, Time (PICOT) questions and identified key benefits and harms to incorporate in guideline development. Analysis included a descriptive comparison of proposed PICOT questions, benefits, and harms between groups and a qualitative analysis of discussion themes from audio recordings of the question development retreats. Results Proposed guideline questions, benefits, and harms were largely similar between groups, but only the experimental group proposed outcomes relating to development of cognitive impairment at specific time points and rate of progression. The qualitative analysis of the discussions occurring during guideline question development demonstrated key differences in group conduct and validated the proposed conceptual model of patient and public contributions to guidelines. PPI influenced the conduct of guideline development, scope, inclusion of patient-relevant topics, outcome selection, and planned approaches to recommendation development, implementation, and dissemination with implications for both guideline developers and the guideline development process. Conclusions Evidence of how PPI impacts guideline development underscores the importance of engaging patient stakeholders in guideline development and highlights developer- and guideline-specific outcomes of PPI, both of which have implications for guideline implementation. It also raises the question of whether guidelines developed without such input are acceptable for use. PPI should be considered an essential element of trustworthy guideline development for purposes of development and funding.

• Publisher: BioMed Central,BioMed Central Ltd,BMC
• Subject: Adult / Aged / Analysis / Care and treatment / Clinical practice guideline / Community Participation - methods / Consensus / Dementia / Evidence-based guideline / Guidelines as Topic [MeSH term] / Health Administration / Health Informatics / Health Policy / Health Promotion and Disease Prevention / Health Services Research / Humans / Infant, Newborn / Male / Medicine / Medicine & Public Health / Middle Aged / Patient involvement / Patient Participation / Patient Participation [MeSH term] / Patient-Centered Care [MeSH term] / PET imaging / Practice guidelines (Medicine) / Practice Guidelines as Topic / Public Health / Public Opinion / Qualitative Research / Quality Improvement - organization & administration