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01.06.2015

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

verfasst von: Jonathan Paul Singer, Joan Chen, Patricia P. Katz, Paul David Blanc, Marjorie Kagawa-Singer, Anita L. Stewart

Erschienen in: Quality of Life Research | Ausgabe 6/2015

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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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Titel: Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis
verfasst von: Jonathan Paul Singer
Joan Chen
Patricia P. Katz
Paul David Blanc
Marjorie Kagawa-Singer
Anita L. Stewart
Publikationsdatum: 01.06.2015
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 6/2015
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-014-0875-5

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Abstract

Purpose

Methods

Results

Conclusions

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