The “STOP Pain” Questionnaire: using the Plan-Do-Study-Act model to implement a patient-family preferences-informed questionnaire into a pediatric transitional pain clinic

BACKGROUND: Patient engagement is an important tool for quality improvement (QI) and optimizing the uptake of research findings. The Plan-Do-Study-Act (PDSA) model is a QI tool that encourages ongoing evaluation of clinical care, thus improving various aspects of patient care. Ascertaining pediatric patient priorities for a pain questionnaire in the post-acute, or transitional pain, setting is important to guide clinical care since active engagement with the population of interest can optimize uptake. We used the PDSA model to adapt a chronic pain questionnaire for the pediatric transitional pain setting to reflect pediatric patient and parent/guardian preferences and to form an example of how the PDSA model can be used to improve clinical care through patient engagement. METHODS: This project employed the PDSA model to adapt the pediatric Ontario Chronic Pain Questionnaire for use in the pediatric Transitional Pain Service (pedTPS) setting. Plan: Following reviewing the Ontario Chronic Pain Questionnaire and literature on pain questionnaire development, goal-based questions, questions on pain location, relevant Patient-Reported Outcomes Measurement Information System (PROMIS(®)) measures and the Pain Catastrophizing Scale, child (PCS-C) and parent (PCS-P), informed the questionnaire. Do: The questionnaire and a satisfaction survey were sent to patients and families through Research Electronic Data Capture (REDCap™). Study: Results from the satisfaction survey were analyzed. Act: Using descriptive statistics employing ordinal mixed-models with random effects, ANOVA, and double-blinded qualitative thematic coding, questionnaire preferences were analyzed and the questionnaire was adapted accordingly before implementation into the (pedTPS). RESULTS: Eighty-eight questionnaires and satisfaction surveys were analyzed from 69 respondents (32 patients; 37 parents/guardians). Sixty-six (75.00%) surveys indicated satisfaction with the questionnaire. A combined 77 (87.50%) “strongly agreed” (25/88) or “agreed” (52/88) that the questionnaire language was clear. The application of suggested changes to the questionnaire resulted in four versions across the project timeline, which reflected patient and parent/guardian preferences for questions that reflect the themes, “Story”; “Time-Optimal”; and “Pertinent” (“STOP”). There were no statistically significant differences in satisfaction across the versions due to sample size. CONCLUSION: Most respondents were satisfied with the questionnaire and prefer “STOP” questions. Future studies will focus on testing the questionnaire for validity and reliability across pedTPS populations. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-022-00520-4.