What really matters in pediatric chronic pain rehabilitation? Results of a multi-stakeholder nominal group technique study

Abstract

Purpose: To prioritize outcome domains sensitive to the needs of the various stakeholders involved in rehabilitation programs designed for youth with pain-related disability using the International Classification of Function Child and Youth version.

Materials and methods: A 5-step nominal group technique was conducted with 13 stakeholders, including two youth with pain-related disability, two parents, five clinicians, two teachers, and two healthcare managers. Once identified by content thematic analysis and International Classification of Function linking, 15 outcome domains were ranked. Priority rank scores were then weighted.

Results: Six outcome domains were prioritized: (1) activities of daily living, (2) participation in meaningful activities, (3) social roles and relationships, (4) mood and affect, (5) school engagement, and (6) self-efficacy. Discrepancies in ranking existed; parents and youth attributed importance to pain, sleep, and program satisfaction whereas clinicians and mangers underscored pain-related fear and family functioning. When compared, prioritized domain associated with three PedIMMPACT recommendations and aligned with the activity and participation components of the International Classification of Function for Child and Youth.

Conclusion: These findings emphasize the importance of integrating various perspectives, including those of youth with pain-related disability and other important stakeholders and adopting a broader conceptualization of disability and function when selecting key rehabilitation evaluation outcome for this population.

Implications for rehabilitation

• The identification of value differences among stakeholder underscores the importance of engaging youths, their families and other stakeholders, such as teachers and health care managers in rehabilitation program evaluation.

• The consensus processes employed allowed for the reconciliation of the different priorities, and the achievement of agreement on participation in life and its related activities as a key desired outcome of rehabilitation programs for youth with pain-related disability.

• The use of the ICF-CY framework allowed a broader conceptualization of the rehabilitation outcome domains, and the examination of areas beyond reduction of pain, disability and impairment to include functional aspects such as self-care, daily routine and mobility activities, and meaningful participation in life, fostering social roles and responsibilities, and school engagement.

• As participation in life and its related tasks and activities were key outcomes for all stakeholders, they should be the focus of clinicians’ treatment.

Keywords:

• Pediatric pain-related disability
• rehabilitation programs
• outcomes
• specialized pain treatment
• program evaluation

Acknowledgements

The authors would like to thank all the stakeholders who so willingly shared their opinions, expertise, and time with us. In addition, we would also like to acknowledge Dr Laura Brunton for her knowledge and assistance with the International Classification of Function linking process. Finally, we would like to extend our gratitude to the funding agencies (Vanier Doctoral Scholarship Award) and the training programs (Canadian Child Health Clinician Scientist Program, Pain in Child Health: Research Training Initiative) that support the first author.

Disclosure statement

The authors report no conflicts of interest.