“How Do You Live the Best Life You Can With This Pain?” A Qualitative Study of Adults Living With CF and Pain in the Modulator ERA

Background: Despite pain's high prevalence and impact on quality of life and health outcomes, no studies have examined psychosocial approaches for treating pain in CF. We interviewed adults with CF and pain about their experiences to inform development of a CF-specific psychosocial pain management intervention. Methods: We partnered with CF Community Voice to recruit 14 adults with CF and pain for 1.5 h individual qualitative interviews and conducted a hybrid inductive-deductive thematic analysis (NVivo 14). Results: Participants’ age ranged from 23 to 64 years; Seven were taking a modulator, 4 eligible/not taking, 3 ineligible. Pain sources included lung/chest, head/sinus, joint, bone, back, neuropathic, GI; 100% reported multiple sources. Pain experience: A major theme was the close interrelationship of pain and CF. Subthemes included pain being part of life with CF, having CF leads to high pain tolerance and effects of aging with CF. Participants described CFTR modulators effect pain experiences with 3 noting improvement and 4 worsening pain. Pain centralization was common: fatigue, difficulties with cognition/sleep, increased sensitivity to nonpainful stimuli. Pain impact: Pain has a widespread negative impact on quality of life and especially mental health. Resiliency was a theme: the need for coping strategies, support and strong self-advocacy. Advice for CF Care Teams: Participants endorsed a need for increased acknowledgment of pain experiences and co-development of a treatment plan. Conclusions: Pain remains a prominent, burdensome symptom in the modulator era, necessitating a multi-component management approach. Results informed the development and pilot of a mind-body pain intervention for adults with CF.