Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Jul 21, 2022
Date Accepted: Jan 23, 2023
Enhancing exposure treatment for youth with chronic pain: A co-design and qualitative approach
ABSTRACT
Background:
Increasing access and improving impact of pain treatments is of upmost importance, especially among youth with chronic pain. The engagement of patients as consultants (in contrast to research participants) provides valuable expertise to collaboratively improve treatment delivery.
Objective:
The present study looked at a multidisciplinary exposure treatment for youth with chronic pain through the lens of patients and caregivers with the aim (1) explore and validate treatment change processes, (2) prioritize and develop ideas for improvement, and (3) identify particularly helpful treatment elements.
Methods:
Qualitative exit interviews with patients (n=52) and caregivers (n=52) were collected at discharge of two clinical trials (ClinicalTrials.gov: NCT01974791, NCT03699007). Six independent co-design meetings were held with patient (n= 10) and caregiver (n=14) consultants to establish consensus within and between groups. Results were validated in a wrap-up meeting.
Results:
Patients and caregivers described that exposure treatment helped them to better process pain-related emotions, feel empowered, and improve their relationship with each other. Consultants developed and agreed upon twelve ideas for improvement (e.g., to make patients, caregivers, and the general public more aware about pain exposure treatments). Consultants prioritized thirteen helpful treatment elements (e.g., the personalization of treatment through the pursuit of individualized goals).
Conclusions:
The results have the potential to contribute to the refinement of pain treatments more broadly. At its core, they suggest that pain treatments should be more disseminated, flexible, and transparent. Clinical Trial: NCT01974791, NCT03699007, https://osf.io/46258
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