*Purpose: Tolerant kidney transplant recipients (off immunosuppression) report higher self-rated quality of life and a lower symptom burden compared to standard living recipients when using survey data.¹ We sought to explore how recipients perceive the impact of immunosuppression on their quality of life through in-depth qualitative inquiry.

*Methods: In this qualitative study, the first author (ELW) conducted semi-structured in-depth interviews to explore the impact of immunosuppression on recipient quality of life. A total of 117 sibling pairs who underwent kidney donation/transplantation at UCLA between 11/2013 and 7/2019 were screened, 36 of whom were human leukocyte antigen (HLA)-identical. A total of 11 participants completed demographic questionnaires and a semi-structured in-depth interview. Transcripts were reviewed by ELW with input from SG and JV. The qualitative methodology employed was content analysis in (Atlas Ti7 Version 7.5.18).

*Results: The cohort of recipients were mostly male (7 of 11), White/Not Hispanic (9), young (mean age 50 at time of surgery), had high socioeconomic status (>13 years education, mean income $110,000), with mean time since transplant of 3.6 years (6 were preemptive). Recipients noted an almost immediate improvement in fatigue, weakness, dyspnea and pallor after transplant: “I feel stronger⋯now I can do everything, I went back to a normal life.” Recipients frequently discussed the burden of lifestyle changes after transplant: being cognizant of sun exposure, dietary changes (e.g. avoiding raw meat/sushi) and behavior changes (avoiding crowds, shaking hands/hugging): “You can’t fight all the germs in the airplane…It really affected travel and I love to travel.” Fear of death, dialysis and rejection were common. When asked a hypothetical if they would like to be off immunosuppression (eg. In a tolerance trial), 7 of 11 declined: “I haven’t had any effects with the medication” and “the medications are…not that bad… I’m just taking [the] very minimum.” With several recipients expressing comfort in their routine “I’m doing something on a daily basis that prevents organ rejection.” Of the 4 who would have preferred to be off immunosuppression, two had trouble remembering to take their medication and two were maintained with Belatacept because of drug toxicity or other side effects.

*Conclusions: Three years after transplant, most HLA-identical recipients were minimally bothered by their immunosuppression. Evaluation of recipients further out from transplantation (who may be experiencing more sequelae of chronic immunosuppression) is warranted.

1. Madariaga ML, Spencer PJ, Shanmugarajah K. Effect of tolerance versus chronic immunosuppression protocols on the quality of life of kidney transplant recipients. JCI Insight 2016; 1 (8): e87019. https://doi.org/10.1172/jci.insight.87019.

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