Attitudes on pain and opioid prescription practices in cystic fibrosis centers


Attitudes on pain and opioid prescription practices in cystic fibrosis centers


Yang Y; Mukadam Z; Laxova A; Meyer KC; Hollatz T



Pediatric Pulmonology




chronic pain; cystic fibrosis; opiate; prescription; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adult; Analgesia; Anxiety; Child; cyst; drug combination; Female; Human; Life Expectancy; Male; Mood; nurse; opiate addiction; Palliative therapy; Prevalence; quality of life; Questionnaire; sinus headache; thorax wall


Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses, chest pain, and arthralgias. Furthermore, pain interferes with general activities, mood and occupational performance in 41-57% of patients. These studies concluded that the prevalence of pain in CF patients may be underestimated and can greatly affect quality of life (Loganes C, et al. J Cyst Fibros. 2004;3:51-7; Lechtzin N, et al. Chest 2011;140:1598-603). While opioids can be effective for palliation of pain in an end-of-life setting, there are no data on the use of opioids for chronic pain management in the general CF population. Methods: A questionnaire concerning the prevalence and characteristics of pain in patients with CF was distributed to accredited pediatric and adult CF programs throughout the US. Additional questions addressing provider attitudes on pain management and opioid use were also included. Those respondents that do not utilize opioids at their center were able to skip 13 of the 30 questions. Results: Survey responses from 100 programs were analyzed. Responders who completed the survey included CF providers (67%), clinic coordinators (21%) and nurses (6%). Responses came from 51 adult core or affiliated centers (Adult Responders - AR), 36 from pediatric core or affiliated centers (Pediatric Responders - PR), and 13 were from combined programs. While most of the PR (71%) indicated that 0-10% of their patients experience chronic pain, 48% of AR reported that 11-25% of their patients have chronic pain. Furthermore, 43 of the AR said that >50% of those with chronic pain also have comorbid depression or anxiety. When asked to rank types of chronic pain, 56% of PR ranked sinus/headache symptoms as the most common, with GI pain as the second most common. AR ranked chest wall as the most frequent site (57%), with headache/sinus ranked next. Chest wall pain was the most common reason for prescribing opioids in adults with chronic pain. While most centers (83%) report that pain management in patients with CF is a very important or important issue, 48% of AR feel uncomfortable in prescribing opioids. A majority (66%) would prefer a pain specialist to be responsible for prescribing opioids, yet 49% of the CF providers are currently responsible for this task. Only 32% of AR use pain specialists. 88% of PR and 83% of AR would find guidelines on pain management helpful or very helpful. Conclusion: Chronic pain is common in adult CF patients, and management presents a formidable challenge to providers. Most providers would prefer not to prescribe opioids but are often doing so despite inadequate training and a lack of guidelines to follow. Providers have multiple concerns regarding potential drug side effects, most notably, the possibility of opioid addiction. As life expectancy increases for adult patients with CF, chronic pain will likely be more prevalent and problematic. The development of a guideline and/or collaboration with pain specialists will likely be beneficial to both patients and providers..


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Yang Y; Mukadam Z; Laxova A; Meyer KC; Hollatz T, “Attitudes on pain and opioid prescription practices in cystic fibrosis centers,” Pediatric Palliative Care Library, accessed September 26, 2023,