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Associations between demographic characteristics and unmet supportive care needs in adults with cystic fibrosis
  1. Laura Liliana Obregon1,
  2. Kwonho Jeong2,
  3. Zachariah P Hoydich3,
  4. Jonathan Yabes4,
  5. Joseph Pilewski5,
  6. Connie Richless5,
  7. Laura T Moreines6,
  8. Elisabeth P Dellon7,
  9. Christopher H Goss8,
  10. Robert M Arnold3 and
  11. Dio Kavalieratos3
  1. 1H. John Heinz III College of Information Systems and Public Policy, Carnegie Mellon University, Pittsburgh, Pennsylvania, USA
  2. 2Center for Research on Health Care Data Center, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  3. 3Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  4. 4Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  5. 5Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  6. 6Department of Geriatrics, Northeast Medical Group, Yale New Haven Health System, New Haven, Connecticut, USA
  7. 7Division of Pulmonology, Department of Pediatrics, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, North Carolina, USA
  8. 8Division of Pulmonary, Critical Care and Sleep Medicine, University of Washington, Seattle, Washington, USA
  1. Correspondence to Dr Dio Kavalieratos,Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA; diok{at}pitt.edu

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.

  • cystic fibrosis
  • supportive care needs
  • income
  • demographics
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Footnotes

  • Presented at This work, in draft form, was presented at the 2018 Annual Assembly of the American Academy of Hospice and Palliative Care (Boston, Massachusetts, USA).

  • Collaborators Dara Ikejiani; Adelina Malito.

  • Contributors All authors have participated in the design of the study, analysis and/or drafting and reviewing of the manuscript.

  • Funding This work was supported by the National Institutes of Health/National Heart, Lung, and Blood Institute (K01HL133466); the Cystic Fibrosis Foundation (PILEWS14QI0 and KAVAL18QI0).

  • 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).

  • Patient consent for publication Not required.

  • Ethics approval We subsequently received approval from the University of Pittsburgh Institutional Review Board (#PRO16070142) to deidentify the dataset and perform cross-sectional analyses, including the present analysis.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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