1. Associations between demographic characteristics and unmet supportive care needs in adults with cystic fibrosis.
- Author
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Obregon LL, Jeong K, Hoydich ZP, Yabes J, Pilewski J, Richless C, Moreines LT, Dellon EP, Goss CH, Arnold RM, and Kavalieratos D
- Subjects
- Adult, Health Services Needs and Demand, Humans, Male, Needs Assessment, Pain, Prevalence, Surveys and Questionnaires, Cystic Fibrosis epidemiology, Cystic Fibrosis therapy, Quality of Life psychology
- Abstract
Context: Patients living with cystic fibrosis (CF) report impaired quality of life. Little is known about unmet supportive care needs among adults living with CF and how they are associated with demographic characteristics., Objectives: The primary objective of this study was to identify associations between demographic variables and unmet supportive care needs regarding anxiety, sadness, pain and uncertainty about the future of living with CF., Methods: We recruited 165 adults with CF from a single academic medical centre to complete a brief demographic survey and the Supportive Care Needs Survey (SCNS-34), a validated self-reported needs assessment that measures the prevalence of and preferences for support for 34 needs that commonly occur in patients with serious illness., Results: Approximately half of the participant sample was male, with a median age of 29 years, varying income levels and a range of lung disease severity. We found statistically significant associations between insufficient income and increased odds of reporting need for support regarding anxiety (OR: 6.48; 95% CI 2.08 to 20.2), sadness (OR: 6.15; 95% CI 2.04 to 18.5), pain (OR: 7.06; 95% CI 2.22 to 22.4) and worries surrounding uncertainty about the future (OR: 3.43; 95% CI 1.18 to 9.99)., Conclusion: Adults with CF report significant unmet needs for support in several physical and emotional domains. Many of these domains were associated with demographic characteristics, most notably, income. Our findings underscore the importance of developing treatment approaches that are sensitive to patient demographics when addressing unmet supportive care needs among adults with CF., Competing Interests: Competing interests: DK receives research support from the NIH/NHLBI (K01HL133466) and the Cystic Fibrosis Foundation (PILEWS14QI0 and KAVAL18QI0). EPD receives research support from the Cystic Fibrosis Foundation (DELLON14QI0 and DELLON16QI0). CHG receives research support from the FDA (R01FD003704), NIH (R01HL113382, R01AI101307, UM1HL119073, P30DK089507 and UL1TR000423) and the Cystic Fibrosis Foundation. JP receives research support from the Cystic Fibrosis Foundation and National Institutes of Health (U01 HL131046, P30 DK072506 and U01 HL128954).National Institutes of Health(U01 HL131046, P30 DK072506 and U01 HL128954)., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2022
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