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.