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Quality of Life Research

, Volume 24, Issue 6, pp 1521–1533 | Cite as

Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis

  • Jonathan Paul Singer
  • Joan Chen
  • Patricia P. Katz
  • Paul David Blanc
  • Marjorie Kagawa-Singer
  • Anita L. Stewart
Article

Abstract

Purpose

Health-related quality of life (HRQL) domains vary across disease conditions and are determined by standards, values, and priorities internal to patients. Although the clinical goals of lung transplantation are to improve patient survival and HRQL, what defines HRQL in lung transplantation is unknown. Employing a qualitative approach, we aimed to identify HRQL domains important in lung transplantation.

Methods

We conducted semi-structured interviews in purposefully sampled lung transplant recipients (n = 8) representing a spectrum of ages, gender, indications for transplantation, and time since transplantation as well as healthcare practitioners representing a spectrum of practitioner types (n = 9). Grounded theory was used to identify HRQL domains important in lung transplantation, building on but going beyond domains already defined in the SF-36, the most commonly used instrument in this population.

Results

In addition to confirming the relevance of the eight SF-36 domains, we identified 11 novel HRQL domains. Palliation of respiratory symptoms was identified as important. After transplant surgery, new HRQL domains emerged including: distressing symptoms spanning multiple organ systems, worry about infection and acute rejection, treatment burden, and depression. Further, patients identified challenges to intimacy, changes in social relationships, and problems with cognitive functioning. Saliently, worry about limited life expectancy was pervasive and impaired life planning.

Conclusions

We found that HRQL in lung transplantation is defined by both generic and transplant-specific domains. Delineating and refining these domains can inform efforts to improve clinical outcomes and HRQL measurement in lung transplantation.

Keywords

Lung transplantation Disability Patient-centered outcomes Health-related quality of life Qualitative methods 

Abbreviations

HRQL

Health-related quality of life

SF-36

36-Item short form health survey

PI

Principal investigator

PROs

Patient-reported outcomes

Notes

Acknowledgments

Supported in part by National Heart, Lung, and Blood Institute (K23 HL111115; JPS) and National Institute on Aging (P30-AG15272; ALS).

Conflict of interest

The authors of this manuscript have no conflicts of interest to disclose.

Supplementary material

11136_2014_875_MOESM1_ESM.docx (27 kb)
Supplementary material 1 (DOCX 27 kb)

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Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  • Jonathan Paul Singer
    • 1
  • Joan Chen
    • 1
  • Patricia P. Katz
    • 2
  • Paul David Blanc
    • 1
    • 3
    • 4
  • Marjorie Kagawa-Singer
    • 5
  • Anita L. Stewart
    • 6
  1. 1.Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of MedicineUniversity of California, San FranciscoSan FranciscoUSA
  2. 2.Department of Medicine and Institute for Health Policy StudiesUniversity of California, San FranciscoSan FranciscoUSA
  3. 3.Division of Occupational and Environmental Medicine, Department of MedicineUniversity of California, San FranciscoSan FranciscoUSA
  4. 4.Cardiovascular Research InstituteUniversity of California, San FranciscoSan FranciscoUSA
  5. 5.Department of Asian American Studies, School of Public HealthUniversity of California, Los Angeles SchoolLos AngelesUSA
  6. 6.Institute for Health and AgingUniversity of California, San FranciscoSan FranciscoUSA

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