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

Research output: Contribution to journalArticlepeer-review

23 Scopus citations


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.

Original languageEnglish
Pages (from-to)1521-1533
Number of pages13
JournalQuality of Life Research
Issue number6
StatePublished - 4 Dec 2015
Externally publishedYes


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


Dive into the research topics of 'Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis'. Together they form a unique fingerprint.

Cite this