(PS2-13) From Patient Insights to Intervention: Developing a Mind-Body Program for Cystic Fibrosis and Chronic Pain

Cystic fibrosis (CF) is a chronic genetic disease that affects over 100,000 people worldwide and impacts most major organ systems, especially the lungs and gastrointestinal systems 1. Rates of depression and anxiety are 2-3 times higher in persons living with CF (PLwCF) compared to the general population 2. An estimated 89% of adults with CF experience pain, negatively impacting their quality of life. The CF Foundation recently published guidelines recommending an individualized, multi-modal approach to pain management by CF care teams for the assessment and treatment of pain in PLwCF 3. While Cognitive Behavioral and mind-body approaches have been shown to be effective for pain management, there have not yet been any studies on a psychosocial approach to pain management in CF 4. The objective of this study was to gather input from the CF community in the development and pilot of the first mind-body program designed to address pain for adults with CF.
Qualitative interviews with 14 PLwCF were conducted about their pain experiences and their needs and preferences for a proposed psychosocial intervention. Participants ranged in age from 23-64 years, with 7 eligible for and taking a CFTR modulator, 4 eligible/not taking, and 3 ineligible. Results of a hybrid inductive-deductive thematic analysis were used to inform the creation of a CF-specific, non-pharmacologic mind-body pain management intervention. Emergent themes were (1) the need to address related mental health concerns; (2) the need for a program that is individually tailored; (3) a preference for CF care team program delivery; (4) feedback on proposed CF-specific content, and (5) perceived barriers and facilitators to patient engagement with a mind-body pain management intervention in CF.
Participants provided crucial perspectives on the structure and substance of a mind-body intervention for chronic pain that is designed specifically for PLwCF. The feedback was utilized to create the Pain Acknowledgement-Coping-Empowerment (PACE-CF) program, which is currently being piloted at two CF centers. PACE-CF consists of three sessions: (1) Intro to a Mind-Body Approach to Understanding and Acknowledging Pain, (2) Actions and Attitudes that Improve Comfort and Well-Being, (3) Skills that Empower: Support, Communication, and Advocacy. This qualitative approach may be replicable for co-developing psychosocial interventions for chronic illness populations tailored to their unique needs and preferences.