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Abstract: PO2490

"Some Person Behind a Desk Is Going to Be Looking at My File": Thematic Analysis of the Health Records of a National Sample of Patients with Advanced Kidney Disease Evaluated for Kidney Transplant

Session Information

Category: Transplantation

  • 1902 Transplantation: Clinical

Authors

  • Butler, Catherine, University of Washington, Seattle, Washington, United States
  • Wightman, Aaron G., Seattle Children's Hospital, Seattle, Washington, United States
  • Taylor, Janelle S., University of Toronto, Toronto, Ontario, Canada
  • Richards, Claire, University of Washington, Seattle, Washington, United States
  • Liu, Chuan-fen, VA Puget Sound Health Care System, Seattle, Washington, United States
  • O'Hare, Ann M., University of Washington, Seattle, Washington, United States
Background

To be considered for kidney transplant, patients with advanced kidney disease must participate in a formal evaluation and selection process. Little is known about how this process unfolds in real-world clinical settings.

Methods

We conducted a thematic analysis of clinician documentation related to the kidney transplant evaluation in the VA-wide electronic medical records of patients who were referred to a transplant center among a random sample of 4,000 adults with advanced kidney disease between 2004 and 2014 who were followed through 2019.

Results

We identified 211 patients (5.2%) who were referred to a VA transplant center during follow-up. Four dominant themes emerged from qualitative analysis of clinician documentation in the electronic medical records of these patients: 1) far-reaching and inflexible medical evaluation: patients were expected to complete a demanding evaluation that could take a substantial physical and emotional toll on them and their family members, made little accommodation for their individual needs, and impacted many other aspects of their care; 2) psychosocial valuation: the psychosocial transplant assessment could be subjective and intrusive and placed substantial demands on patients’ family members; 3) surveillance over compliance: clinicians monitored patients’ adherence to a wide range of medical recommendations; 4) disempowerment and lack of transparency: patients had a strong desire to receive a transplant, but neither they nor their local clinicians had a clear understanding of what to expect from the evaluation process or the rationale for selection decisions, which left patients and their clinicians with little choice but to adhere to the transplant center’s recommendations.

Conclusion

To be considered for kidney transplant, patients had little choice but to engage in a rigid, demanding, and opaque evaluation process over which neither they nor their local clinicians had much control. These findings call for a more evidence-based, transparent, and individualized approach to the kidney transplant evaluation process.

Funding

  • Veterans Affairs Support