title: Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis.
abstract: OBJECTIVE
  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.
authors.affiliation: 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, jon.singer@ucsf.edu.
authors.forename: Jonathan Paul
authors.initials: JP
authors.lastname: Singer
authors.forename: Joan
authors.initials: J
authors.lastname: Chen
authors.forename: Patricia P
authors.initials: PP
authors.lastname: Katz
authors.forename: Paul David
authors.initials: PD
authors.lastname: Blanc
authors.forename: Marjorie
authors.initials: M
authors.lastname: Kagawa-Singer
authors.forename: Anita L
authors.initials: AL
authors.lastname: Stewart
mesh_terms: D000328:Adult; D000368:Aged; D001007:Anxiety / Q000209:etiology; D003863:Depression / Q000209:etiology; D005260:Female; D006304:Health Status; D006801:Humans; D007407:Interviews as Topic; D016040:Lung Transplantation / Q000523:psychology; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires