Therapeutic Needs in Solid Organ Transplant Recipients: the American Society of Transplantation Patient Survey.

The American Society of Transplantation commissioned a survey assessing transplant recipients' perceptions of unmet immunosuppressant needs. Topics included medication side effects, treatment burden, health-related quality of life, adherence, self-efficacy, costs, trust, and discrimination; 10 091 responses were included (9543 adults, 548 pediatric respondents) representing 232 transplant centers. Respondents were a mean of 6.6 years posttransplant and were well-represented across age, gender, race, ethnicity, organ, employment, insurance, and immunosuppression. Nearly all (92%) respondents reported at least 1 side effect (median of 3); most side effects occurred "often" or "always." The majority (54%) of side effects were rated as having a "moderate" or "great deal" of impact on daily life. Side effects with the greatest daily burden included skin cancer, pain/neuropathy, skin issues, kidney disease, memory/brain fog, diabetes, cancer, and hypertension. Fatigue, headache, insomnia, tremors, and mood/depression/anxiety were the most selected side effects. Health-related quality of life was rated as "fair" to "good." Trust in providers, self-efficacy, and medication adherence were rated highly, though 25% reported skipping doses due to side effects, and 40% skipped due to costs. The findings demonstrate that side effects are nearly universally experienced and have a major burden on daily life. Immunosuppression induces a heavy toll on transplant recipients; there is an urgent need for new treatments to address these unmet needs.