Burdens of Therapy: AST's National Patient Survey of Unmet Immunosuppressant Needs

Document Type

Conference Proceeding

Publication Date

8-1-2025

Publication Title

Am J Transplant

Abstract

Purpose: AST commissioned the development, dissemination, and analysis of a national survey assessing organ transplant (Tx) recipients’ perceptions of unmet immunosuppressant (IS) needs. Side effect (SE) frequency, severity, and overall burden were assessed and presented here. Methods: In partnership with 25 transplant recipients, an AST workgroup of 9 transplant professionals developed, disseminated, and analyzed an online survey containing 17 constructs. Topics included IS SEs, treatment burden, quality of life, adherence, self-efficacy, costs, and others. The survey, active from 06/2023 to10/2024, resulted in >10,000 valid responses. Patient recruitment strategies involved direct advertising and engaging clinicians to invite participants via a weblink or QR code in Tx clinics. Statistics included: descriptive, Item Response Theory to estimate SE burden, and generalized linear modeling to assess variables associated with SE burden. Results: After removing invalid responses,10,091 surveys were analyzed (9,543 adults, 548 peds) from 232 Tx centers. Respondents were a mean of 6.6 years post- Tx and were well represented across sociodemographic characteristics. Nearly all (92%) respondents reported at least one SE (median 3 [IQR 1-5]). Of the recorded SEs, 63% were reported as occurring ‘often’ or ‘always,’ and 54% were rated as having a ‘moderate’ or ‘great deal’ of impact on daily life (Figure A). Write-in SEs (which was allowed in addition to specific selections) were ranked highest in severity, and included cancer, pain/neuropathy, skin issues, kidney disease, diabetes, hypertension, memory/brain fog, and infection (Figure B). SEs of fatigue, insomnia, mood/depression/anxiety, and tremor were common, with varying degrees of severity (Figure C). Baseline characteristics significantly associated with SE burden included current IS, past IS, and demographics. Belatacept, current mTOR use, and cyclosporine were not significantly associated with SE burden (Table D). Conclusions: Findings from a US survey of >10,000 Tx recipients demonstrate IS SEs are common and have a heavy burden on daily life. Cancers, kidney disease, diabetes, hypertension, and memory issues were common write-in SEs rated as having the highest burden. SE burden was strongly associated with certain IS regimens and demographics, which may inform future efforts to develop evidence- based IS individualization recommendations. [Formula presented] CITATION INFORMATION: Taber D., Jesse M., Peipert J., Myaskovsky L., George R., Gordon E., Chisholm-Burns M., Gill J. Burdens of Therapy: AST’s National Patient Survey of Unmet Immunosuppressant Needs AJT, Volume 25, Issue 8 Supplement 1 DISCLOSURES: D. Taber: Consultant; Takeda, Veloxis, CareDx. Research Grant Site Overall Principal Investigator; Takeda, Veloxis, Merck.

Volume

25

Issue

8

First Page

S25

Last Page

S26

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