caa a22 4500 606178007 CHVBK 20210128100754.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s11136-014-0875-5 doi (NATIONALLICENCE)springer-10.1007/s11136-014-0875-5 Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis [Elektronische Daten] [Jonathan Singer, Joan Chen, Patricia Katz, Paul Blanc, Marjorie Kagawa-Singer, Anita Stewart] 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. Springer International Publishing Switzerland, 2014 Lung transplantation nationallicence Disability nationallicence Patient-centered outcomes nationallicence Health-related quality of life nationallicence Qualitative methods nationallicence HRQL : Health-related quality of life nationallicence SF-36 : 36-Item short form health survey nationallicence PI : Principal investigator nationallicence PROs : Patient-reported outcomes nationallicence Singer Jonathan Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut Chen Joan Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut Katz Patricia Department of Medicine and Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, USA aut Blanc Paul Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut Kagawa-Singer Marjorie Department of Asian American Studies, School of Public Health, University of California, Los Angeles School, Los Angeles, CA, USA aut Stewart Anita Institute for Health and Aging, University of California, San Francisco, San Francisco, CA, USA aut Quality of Life Research Springer International Publishing 24/6(2015-06-01), 1521-1533 0962-9343 24:6<1521 2015 24 11136 https://doi.org/10.1007/s11136-014-0875-5 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0875-5 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Singer Jonathan Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut NATIONALLICENCE 700 1- Chen Joan Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut NATIONALLICENCE 700 1- Katz Patricia Department of Medicine and Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, USA aut NATIONALLICENCE 700 1- Blanc Paul Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, 94117, San Francisco, CA, USA aut NATIONALLICENCE 700 1- Kagawa-Singer Marjorie Department of Asian American Studies, School of Public Health, University of California, Los Angeles School, Los Angeles, CA, USA aut NATIONALLICENCE 700 1- Stewart Anita Institute for Health and Aging, University of California, San Francisco, San Francisco, CA, USA aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/6(2015-06-01), 1521-1533 0962-9343 24:6<1521 2015 24 11136