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

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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.

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Abbreviations

HRQL:

Health-related quality of life

SF-36:

36-Item short form health survey

PI:

Principal investigator

PROs:

Patient-reported outcomes

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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.

Author information

Authors and Affiliations

  1. Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, San Francisco, CA, 94117, USA

    Jonathan Paul Singer, Joan Chen & Paul David Blanc

  2. Department of Medicine and Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, USA

    Patricia P. Katz

  3. Division of Occupational and Environmental Medicine, Department of Medicine, University of California, San Francisco, San Francisco, CA, USA

    Paul David Blanc

  4. Cardiovascular Research Institute, University of California, San Francisco, San Francisco, CA, USA

    Paul David Blanc

  5. Department of Asian American Studies, School of Public Health, University of California, Los Angeles School, Los Angeles, CA, USA

    Marjorie Kagawa-Singer

  6. Institute for Health and Aging, University of California, San Francisco, San Francisco, CA, USA

    Anita L. Stewart

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  1. Jonathan Paul Singer
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  2. Joan Chen
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  3. Patricia P. Katz
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  5. Marjorie Kagawa-Singer
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  6. Anita L. Stewart
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Corresponding author

Correspondence to Jonathan Paul Singer.

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Singer, J.P., Chen, J., Katz, P.P. et al. Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis. Qual Life Res 24, 1521–1533 (2015). https://doi.org/10.1007/s11136-014-0875-5

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