1855. Understanding Cytomegalovirus (CMV) Symptom Management, Quality of Life, and Care Coordination in Transplant Recipients Through Patient and Care Partner (CP) Experiences

BACKGROUND: Transplant recipients with CMV infection have a high risk of complications and mortality. This study aimed to better understand patient and CP knowledge of post-transplant CMV and identify how it can be improved. METHODS: The study included 2 research phases (Fig 1). We report results from Phase 2 (September 2022–March 2023), which included an educational webinar with a pre- and post-webinar assessment comprising 4 questions on the risk, symptoms, treatment, and complications of CMV; participants (pts) self-reported their confidence rating pre- and post-webinar. Transplant recipients and CPs also completed a quantitative survey on CMV management and patient/CP burden. Pts were recruited via the PatientsLikeMe (PLM) website, email, or social media. [Figure: see text] RESULTS: The webinar was completed by 33 pts. There was a total of 86 and 121 correct responses to the 4 pre- and post-survey questions, respectively, indicating a significant improvement in understanding of CMV post-webinar as compared with before (p< 0.05; t-test statistic). Almost half (n=16 [48%]) of pts reported feeling “not at all confident” in recognizing CMV symptoms post-transplant pre-webinar; post-webinar, this was 0 pts. Twenty-eight transplant recipients (27 solid organ transplant; 1 hematopoietic cell transplant) and 1 CP completed the quantitative survey. Half of recipients received a CMV diagnosis post-transplant and 16/28 reported having no awareness of their or their donor’s CMV status prior to transplant. Most (27/28) recipients reported a positive experience with their care team post-transplant. Half of recipients set goals with their care team or were provided resources to track them post-transplant. Recipients reported CMV medication changes and challenges with treatment (Table 1). Patients primarily contacted their surgeon about CMV and sought information on the internet. [Figure: see text] CONCLUSION: Although transplant recipients reported positive experiences with their healthcare team, the post-transplant care journey could be improved by better educating patients about CMV and CMV management. Aggregate-level learnings from the study with be shared on the PLM platform to reinforce the value of participation in research. Funding: Collaborative research study; primary funding from Takeda Pharmaceuticals U.S.A., Inc. DISCLOSURES: Deepshikha Singh, MPH, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Mary C. Burke, MHA, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Subhara Raveendran, PhD, Ascendis Pharma: Employee|PatientsLikeMe: Ownership Interest Erlyn Rachelle Macarayan, PhD, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Maisha Razzaque, MS, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Genovefa Papanicolaou, MD, Allovir: Advisor/Consultant|Amplyx: Advisor/Consultant|Astellas: Advisor/Consultant|Cidara: Advisor/Consultant|CSL Behring: Advisor/Consultant|DSMC: Advisor/Consultant|Merck: Advisor/Consultant|Merck: Grant/Research Support|Merck: institutional research support for clinical trials|MSD: Advisor/Consultant|Octapharma: Advisor/Consultant|Partners Rx: Advisor/Consultant|Shire/Takeda: institutional research support for clinical trials|Symbio: Advisor/Consultant|Symbio: Advisor/Consultant|Takeda: Advisor/Consultant|Vera Pharma: Advisor/Consultant Macey L. Levan, PhD, Takeda Pharmaceuticals: Advisor/Consultant Maggie McCue, MS, RD, Takeda Pharmaceuticals U.S.A., Inc.: Employee Megan Gower, PharmD, Takeda Pharmaceuticals U.S.A., Inc.: Employee|Takeda Pharmaceuticals U.S.A., Inc.: Ownership Interest Daniele K. Gelone, PharmD, Abbott Laboratories: Ownership Interest|Ionis Pharmaceuticals: Ownership Interest|Johnson & Johnson: Ownership Interest|NovoNordisk: Ownership Interest|Pfizer: Ownership Interest|Regenxbio: Ownership Interest|Takeda Pharmaceuticals U.S.A., Inc.: Employee|Takeda Pharmaceuticals U.S.A., Inc.: Ownership Interest|Vertex Pharmaceuticals: Ownership Interest