Pain in adults with cystic fibrosis - Are we painfully unaware?
"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...
| Autores principales: | , , , , |
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| Formato: | Journal Article |
| Lenguaje: | Inglés |
| Publicado: |
Elsevier
2025
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| Materias: | |
| Acceso en línea: | https://hdl.handle.net/10568/174608 |
| _version_ | 1855514386435670016 |
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| author | Ward, Anastasia Mauleon, Ramil Davidson, Gretel Ooi, Chee Y. Rosić, Nedeljka |
| author_browse | Davidson, Gretel Mauleon, Ramil Ooi, Chee Y. Rosić, Nedeljka Ward, Anastasia |
| author_facet | Ward, Anastasia Mauleon, Ramil Davidson, Gretel Ooi, Chee Y. Rosić, Nedeljka |
| author_sort | Ward, Anastasia |
| collection | Repository of Agricultural Research Outputs (CGSpace) |
| description | "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." |
| format | Journal Article |
| id | CGSpace174608 |
| institution | CGIAR Consortium |
| language | Inglés |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
| publisher | Elsevier |
| publisherStr | Elsevier |
| record_format | dspace |
| spelling | CGSpace1746082025-11-12T04:55:13Z Pain in adults with cystic fibrosis - Are we painfully unaware? Ward, Anastasia Mauleon, Ramil Davidson, Gretel Ooi, Chee Y. Rosić, Nedeljka health health care quality of life questionnaires adults symptoms information dissemination statistical analysis pain diagnosis treatment "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." 2025-03 2025-05-15T08:19:26Z 2025-05-15T08:19:26Z Journal Article https://hdl.handle.net/10568/174608 en Open Access application/pdf Elsevier Ward, Anastasia, Ramil Mauleon, Gretel Davidson, Chee Y. Ooi, and Nedeljka Rosić. "Pain in adults with cystic fibrosis–Are we painfully unaware?." Journal of Cystic Fibrosis (2025). |
| spellingShingle | health health care quality of life questionnaires adults symptoms information dissemination statistical analysis pain diagnosis treatment Ward, Anastasia Mauleon, Ramil Davidson, Gretel Ooi, Chee Y. Rosić, Nedeljka Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title | Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title_full | Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title_fullStr | Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title_full_unstemmed | Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title_short | Pain in adults with cystic fibrosis - Are we painfully unaware? |
| title_sort | pain in adults with cystic fibrosis are we painfully unaware |
| topic | health health care quality of life questionnaires adults symptoms information dissemination statistical analysis pain diagnosis treatment |
| url | https://hdl.handle.net/10568/174608 |
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