Karen Hurtubise1, Melanie Noel1, Lauren McCallum1, Astrid Brousselle1, Chantal Camden1
1) Canada
Background and Aims: Pediatric pain rehabilitation programs for youth with pain-related disability require the collaboration of multiple stakeholders. As stakeholders have different views about what is most important when assessing the worth of these programs, establishing common evaluation outcomes is challenging. Previous outcome recommendations (i.e. PedIMMPACT) have not formally integrated the perspectives of youth with chronic pain, their parents and other important stakeholders. This study aimed to select 6 outcome domains, sensitive to the evaluation needs of various stakeholders.
Methods: A participatory research approach was used. An 11-member advisory committee, composed of youth with chronic pain, their parents, clinicians, healthcare managers, and teachers engaged in a 3-step nominal group technique: 1) outcome domains were generated using of electronic questionnaires; 2) domains were discussed in two 1-hour focus group meetings; and 3) a survey, created from a thematic analysis of the questionnaire and meeting data, was distributed electronically. Participants were asked to rank their top six domains. Total priority scores were calculated.
Results: Eleven surveys were completed. Based on propriety scores, the following 6 outcome domains were selected: activities of daily living, participation in meaningful activities, social roles and relationships, engagement in school, mood and affect, and self-efficacy. Discrepancies in domain ranking and inclusion existed between stakeholder groups. All stakeholder groups agreed on the inclusion and the importance of participation in meaningful activities, activities of daily living, social roles and relationship, and mood and affect domains. However, parents and youth also included pain, sleep, and program satisfaction domains while clinicians underscored the importance of pain–related fear, self-efficacy and school engagement. Some selected domains varied from the PedIMMACT recommendations (e.g., participation in meaningful activities).
Conclusion: Stakeholder–selected outcome domains provide valuable information about how the worth of pediatric chronic pain rehabilitation programs is judged and establish a foundation for effectiveness studies.
