Patient-centered development of a cognitive behavioral pain intervention for cystic fibrosis: The PACE CF program.

BACKGROUND

Despite treatment advances, the majority of adults with cystic fibrosis (CF) experience chronic pain, negatively impacting quality of life. CF Foundation guidelines call for a multi-modal approach to pain management. While nonpharmacologic behavioral interventions are an effective and safe component of such an approach, there are no existing behavioral interventions that have been designed specifically for adults with CF who experience chronic pain.

OBJECTIVE

We created a novel cognitive-behavioral and mind-body intervention tailored to the needs, preferences, and experiences of adults with CF and chronic pain.

METHODS

Individual qualitative interviews were conducted with 14 adults with CF and chronic pain. A hybrid inductive-deductive thematic analysis was conducted to identify themes regarding needs and preferences to inform intervention development.

RESULTS

We identified the following themes: (1) the importance of addressing mental health, (2) need for an individualized/tailored program, (3) preference for CF care team delivery, (4) CF-specific modifications of proposed content, and (5) barriers and facilitators of patient engagement with a mind-body pain management intervention in CF.

DISCUSSION: Adults with CF provided vital feedback on the structure and substance of a cognitive-behavioral and mind-body intervention for chronic pain, which was utilized to create the Pain Acknowledgement, Coping, and Empowerment (PACE CF), a program to be delivered as part of routine care in CF centers.