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In PressCC BY V4.0, Open Access
In PressCC BY V4.0, Open
Journal article
Pain in adults with cystic fibrosis – Are we painfully unaware?
Journal of cystic fibrosis, Vol.24(2), pp.236-245
25/01/2025
PMID: 39864974
Appears in Recent Faculty of Health Publications
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Abstract
Background: A previous Australia-wide pilot study identified pain as a significant burden in people with CF (pwCF). However, the prevalence, frequency and severity have not been evaluated using validated tools.
Methods: Australian adults, pwCF and healthy controls (HC) were invited to complete an online questionnaire from July 2023 – February 2024, consisting of four validated tools: Brief Pain Inventory, Pain Catastrophising Scale, PAGI-SYM and PAC-SYM. The questionnaire, disseminated via Cystic Fibrosis Australia, CF Together and online social media groups, explored experiences surrounding pain and its management using closed and free text entries.
Results: There were 206 respondents, consisting of 117 CF patients and 89 HC. Over 70% (n = 69) of pwCF reported pain compared to 28% (n = 21) of HC (p = <0.001). Further, significantly higher pain frequency per month was reported for pwCF than HC (40% vs. 10%; p <0.001). Symptom clustering was also observed where at least three other locations of pain were reported, and pain was reported to trigger other physiological and psychological symptoms. Notably, there was no significant difference in the locations, occurrence, frequency or severity of pain between those on a CFTR modulator or not (p = 0.625). PwCF also reported significantly lower relief from over-the-counter therapies (p = 0.002) and expressed themes of unmet symptom and management needs.
Conclusions: This study identified a high prevalence of pain affecting multiple body parts in pwCF compared to HC and suggests that pain is sub-optimally managed, impairing their quality of life. Increased awareness and early recognition within the CF clinics and the development of clinical pathways are critically needed to better manage and monitor pain in pwCF, leading to improved quality of life and health outcomes.
Details
- Title
- Pain in adults with cystic fibrosis – Are we painfully unaware?
- Creators
- Anastasia Ward - Southern Cross UniversityRamil Mauleon - Southern Cross UniversityGretel Davidson - Sydney Children's HospitalChee Y. Ooi - UNSW SydneyNedeljka Rosić - Southern Cross University
- Publication Details
- Journal of cystic fibrosis, Vol.24(2), pp.236-245
- Publisher
- y Elsevier B.V. on behalf of European Cystic Fibrosis Society.; AMSTERDAM
- Grant note
- National Health and Medical Research Council (NHMRC, Australia): 2020/GNT1194358 Australian Government Research Training ProgramSouthern Cross University Faculty of Health
This research did not receive any specific grant from public, commercial, or not-for-profit funding agencies. Chee Y. Ooi is funded by the National Health and Medical Research Council (NHMRC, Australia) Investigator Grant (2020/GNT1194358). Anastasia Ward is funded by the Australian Government Research Training Program and Southern Cross University Faculty of Health.
- Identifiers
- 991013253461202368
- Copyright
- © 2025 The Authors.
- Academic Unit
- Human Sciences; Faculty of Health
- Language
- English
- Resource Type
- Journal article