General
AST Patient survey on medication side effects
AST commissioned a survey assessing transplant recipients’ perceptions of unmet immunosuppressant needs. Topics included medication side-effects, treatment burden, health-related quality of life (HRQoL), adherence, self-efficacy, costs, trust, and discrimination; 10,091 responses were included (9,543 adults, 548 pediatrics) representing 232 transplant centers. Respondents were a mean of 6.6 years post-transplant, and were well represented across age, sex, race, ethnicity, organ, employment, insurance, and immunosuppression. Nearly all (92%) respondents reported at least one 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. HRQoL 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. 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 urgent need for new treatments to address these unmet needs.
https://www.amjtransplant.org/article/S1600-6135(25)02860-6/fulltext
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Thank you for sharing this!
I always assumed folks were likely prone to skipping doses due to side effects, but 25% of a pool of 10,000+ surveyed is a VERY large number and this is ultimately just a sliver of the overall transplantee community. When you factor in the other portion skipping doses due to financial reasons, the number of "non-compliant" immuno takers is almost staggering in scope.
This is interesting.
The drugs we take to stay alive have such awful side effects. What do they say? The treatment is worse than the illness? That is not true in my case but yes, side effects suck. Yet I do not want to go back, 4 point restraint, Mitts on my hands, hallucinating, tubes shoved down my throat, etc. End stage liver disease is no way to live so I take my meds but wait for the day when quality of life after transplant gets more attention.
What is AST is that a liver enzyme or blood test or does this have to do the liver
Transplant Patient
it is a liver enzyme, but it also stands for American society of transplantation. I had to do a double take too 😅