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.
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.
Authors: Mary Amanda Dew; Andrea F Dimartini; Annette De Vito Dabbs; Rachelle Zomak; Sabina De Geest; Fabienne Dobbels; Larissa Myaskovsky; Galen E Switzer; Mark Unruh; Jennifer L Steel; Robert L Kormos; Kenneth R McCurry Journal: Transplantation Date: 2008-01-27 Impact factor: 4.939
Authors: Mary Amanda Dew; Andrea F DiMartini; Annette J DeVito Dabbs; Kristen R Fox; Larissa Myaskovsky; Donna M Posluszny; Galen E Switzer; Rachelle A Zomak; Robert L Kormos; Yoshiya Toyoda Journal: Gen Hosp Psychiatry Date: 2012-01-14 Impact factor: 3.238
Authors: D Langer; C Burtin; L Schepers; A Ivanova; G Verleden; M Decramer; T Troosters; R Gosselink Journal: Am J Transplant Date: 2012-03-05 Impact factor: 8.086
Authors: Roberto Benzo; Max H Farrell; Chung-Chou H Chang; Fernando J Martinez; Robert Kaplan; John Reilly; Gerard Criner; Robert Wise; Barry Make; James Luketich; Alfred P Fishman; Frank C Sciurba Journal: Am J Respir Crit Care Med Date: 2009-05-29 Impact factor: 21.405
Authors: J P Singer; P P Katz; A Soong; P Shrestha; D Huang; J Ho; M Mindo; J R Greenland; S R Hays; J Golden; J Kukreja; M E Kleinhenz; R J Shah; P D Blanc Journal: Am J Transplant Date: 2017-01-03 Impact factor: 8.086
Authors: Christian König; Bastian Matt; Andreas Kortgen; Alison E Turnbull; Christiane S Hartog Journal: Qual Life Res Date: 2018-10-22 Impact factor: 4.147
Authors: Jonathan P Singer; Allison Soong; Joan Chen; Pavan Shrestha; Hanjing Zhuo; Ying Gao; John R Greenland; Steven R Hays; Jasleen Kukreja; Jeffrey Golden; Steven E Gregorich; Anita L Stewart Journal: Am J Respir Crit Care Med Date: 2019-04-15 Impact factor: 21.405
Authors: Eric Nolley; Jessica Fleck; Dio Kavalieratos; Mary Amanda Dew; Daniel Dilling; Rebecca Colman; Maria M Crespo; Hiliary Goldberg; Steven Hays; Ramsey Hachem; Erika Lease; James Lee; John Reynolds; Matthew Morrell; Yael Schenker Journal: J Palliat Med Date: 2020-01-02 Impact factor: 2.947
Authors: Umut Kalyoncu; Alexis Ogdie; Willemina Campbell; Clifton O Bingham; Maarten de Wit; Dafna D Gladman; Philip Mease; Ingrid Steinkoenig; Vibeke Strand; Victoria G Riese; Ana-Maria Orbai Journal: RMD Open Date: 2016-03-03