OBJECTIVES: Post-transplant lymphoproliferative disease (PTLD) is an ultra-rare disease that is a type of lymphoma following solid organ transplant. This study assessed cost burden of PTLD following kidney transplant, by survival status.

METHODS: Using United States Renal Data System data, we identified 2007-2016 Medicare-covered kidney transplant recipients who were diagnosed with PTLD. A per person per year (PPPY) Medicare cost was computed in the two years following PTLD diagnosis and stratified by survival status.

RESULTS: Among the 83,828 Medicare-covered kidney transplant recipients, 364 (0.43%) patients with PTLD, while Medicare-eligible, were identified and analyzed. PTLD patients were 67% male, with an average age of 56 years at transplant (SD: 18 years), and age 58 years at PTLD diagnosis (SD: 19 years). Patients aged 0-17 years at transplant comprised of 6% of the PTLD population. Median time from transplant to PTLD diagnosis was 1.25 years (IQR: 0.67-2.70 years). A total of 222 patients (61%) were alive 2 years after PTLD diagnosis. Post-PTLD costs were $476K PPPY for those who died within 2 years of PTLD diagnosis and $78K PPPY for those who remained alive 2 years after PTLD, more than a 6-fold difference. The majority of post-PTLD costs were for inpatient stays: 69% among those who died within 2 years of PTLD diagnosis and 50% among those who remained alive. Of the patients who died within 2 years post-PTLD, 66% died within 6 months and costs were highest among these patients.

CONCLUSIONS: Costs in PTLD patients following a kidney transplant are considerable. In the two year after PTLD diagnosis, the cost burden for PTLD patients who died within 2 years of diagnosis was over six times higher than PTLD patients who survived.