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Kidney Week

Abstract: PO2065

Development of a Conceptual Model to Understand Disease Burden in Kidney Transplantation

Session Information

Category: Transplantation

  • 1902 Transplantation: Clinical


  • Marshall, Chris, DRG Abacus (Part of Clarivate), London, United Kingdom
  • Sharma, Garima, Novartis AG, Basel, Basel-Stadt, Switzerland
  • Naujoks, Christel, Novartis AG, Basel, Basel-Stadt, Switzerland
  • Gharbi, Hakam, Novartis AG, Basel, Basel-Stadt, Switzerland
  • Pegram, Hannah C., DRG Abacus (Part of Clarivate), London, United Kingdom
  • Aldhouse, Natalie V. J., DRG Abacus (Part of Clarivate), London, United Kingdom
  • Brown, Fiona, DRG Abacus (Part of Clarivate), London, United Kingdom
  • Kuessner, Daniel, Novartis AG, Basel, Basel-Stadt, Switzerland

While kidney transplantation offers patients with end stage kidney disease significant health benefits compared to dialysis, the immunosuppressive therapies designed to improve graft survival result in complex treatment regimens and side effects for patients. The development of new therapies to reduce this patient burden and improve long-term patient outcomes is needed. To guide selection of patient-reported outcome (PRO) measures for clinical trials, it is important to understand how patients feel or function related to a health condition or its treatment. This study sought to develop a preliminary conceptual model in kidney transplantation to provide a visual representation of the concepts of importance to patients (signs, symptoms, and impacts).


A targeted review of published literature was conducted in Embase, Medline, and PsycInfo databases to identify qualitative articles describing the patient experience following kidney transplantation and associated use of immunosuppressive treatment. Studies were selected based on number of concepts and direct patient quotations available for thematic analysis.


From 61 eligible publications identified for full-text review, 20 were selected for data extraction. All studies involved qualitative interviews, focus groups, or analysis with kidney transplant recipients, and were conducted across various geographic locations (US, Europe and Australia). The most frequently reported concepts across studies included: ‘feeling anxious/worried’ (100%, n=20); ‘feeling distressed, overwhelmed’ (75%, n=15); ‘fatigue’ (60%, n=12); and ‘weight gain/loss’ (60%, n=12). The conceptual model identified nine domains to group the concepts as reported in the literature. These domains were delineated into the proximal effects of kidney transplantation (side effects and illnesses; physical/cosmetic changes; functional limitations; taxing medication regimen; and frequent medical appointments); and the more distal impacts (impacts on emotions, work, lifestyle, and relationships).


The conceptual model was based on a rich source of patient quotes and provides an important first step to understand the patient experience of kidney transplantation and inform the selection of PRO measures for use in clinical trials based on their conceptual coverage.


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