Immunosuppression and Quality of Life: A Qualitative Study

Survey data results suggest that kidney transplant recipients who are considered tolerant (off immunosuppression) report higher rated quality of life and a lower symptom burden compared with standard living kidney transplant recipients. E. L. Wood and colleagues at the Fielding School of Public Health at the University of California, Los Angeles, conducted a qualitative study designed to examine the ways recipients perceive the impact of immunosuppression on their quality of life.

The study utilized in-depth qualitative inquiry. Results were reported during a virtual poster session at the American Transplant Congress 2020. The poster was titled Impact of Immunosuppression on Quality of Life among HLA-Identical Living Kidney Recipients at UCLA–A Qualitative Study.

The inquiry included semi-structured in-depth interviews to explore the impact of immunosuppression on the quality of life of kidney transplant recipients. Initial screening included 117 sibling pairs who underwent kidney donation/transplantation at UCLA between November 2013 and July 2019. Of those 117 pairs, 36 were human leukocyte antigen (HLA)-identical. Eleven participants completed demographic questionnaires and the semi-structured in-depth interview. The research team reviewed the transcripts of the interviews; content analysis (Atlas Ti7 Version 7.5.18) was the qualitative methodology used.

Seven of the 11 participants were male, and nine were non-Hispanic white. Mean age at time of surgery was 50 years. Overall, the cohort had high socioeconomic status (>13 years of education, mean income $110,000), and mean time since transplant was 3.6 years (six of the 11 transplants were pre-emptive).

Recipients reported an almost immediate improvement in fatigue, weakness, dyspnea, and pallor following transplant” “I feel stronger…now I can do everything. I went back to a normal life.” The burden of lifestyle changes after the transplant was a frequent topic, including being cognizant of sun exposure, changes in diet such as avoiding raw meat or sushi, and changes in behavior such as avoiding crowds and hugging and shaking hands: “You can’t fight all the germs in the airplane…it really affected travel and I love to travel.” Other frequent topics were fear of death, returning to dialysis, and graft rejection.

When participants were asked hypothetically whether they would like to be off immunosuppression, seven of the 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” were typical responses. Several recipients indicated they were comfortable in their routine: “I’m doing something on a daily basis that prevents organ rejection.”

Of the four who indicated they would prefer to be off immunosuppression medication, two had trouble remembering to take the medication and two were maintained with belatacept due to drug toxicity or other adverse side effects.

In summary, the researchers said, “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.”

Source: Wood EL, George S, Kogut N, Lum E, Veale JL. Impact of immunosuppression on quality of life among HLA-identical living kidney recipients at UCLA–a qualitative study. Abstract of a poster presented at the virtual American Transplant Congress 2020 (Abstract B-248), May 30, 2020.