3620 - National Social Media Survey for Treatment Decision Making, Financial Toxicity, and Quality of Life in Adolescent and Young Adult Patients with Hodgkin Lymphoma
Presenter(s)
B. Fregonese1, B. S. Imber1, J. Yahalom1, M. Banegas2, L. A. Boe3, L. Ghazal4, F. Chino5, and K. R. Tringale6; 1Department of Radiation Oncology, Memorial Sloan Kettering Cancer Center, New York, NY, 2Department of Radiation Medicine and Applied Sciences, UC San Diego Health, San Diego, CA, 3Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY, 4University of Rochester, Rochester, NY, 5Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX, 6Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, CA
Purpose/Objective(s): Despite excellent overall survival in Hodgkin lymphoma (HL), adolescent and young adult (AYA) patients face significant challenges given high rates of financial hardship, stress, and medical debt. Curative treatment (systemic therapy alone or in combination with radiotherapy [RT]), can be personalized based on patient risk and anticipated toxicities. Omission of RT may spare toxicities but increases risk for relapse. While effective, salvage therapy can negatively impact quality of life, including financial well-being. This survey-based study sought to assess key drivers of financial toxicity with the hypothesis that relapse is associated with worse financial toxicity and treatment decision regret.
Materials/Methods: Participants =18 years old were recruited through various social media platforms between 7/2023-11/2024. The anonymous survey incorporated validated measures (Fact-COST, Decision Regret Scale) and questions on demographics, treatment, relapse, and factors influencing treatment decisions.
Results: Of 55 respondents, at the time of HL diagnosis the median age was 24 (19, 30), 60% (33) were women, 62% (34) identified as heterosexual, 67% (37) were White, 76% (42) had private insurance, and 56% (31) were employed. 59% (32) had advanced-stage (III-IV) HL and 32% (18) received RT. 29% (6) later relapsed.
67% (37) reported only one treatment option was discussed at diagnosis and 73% (40) felt involved in their treatment decision. Median decision regret (range 0-100, higher score = more regret) was 19 (0-70), indicating mild regret. ‘Overall survival’ and ‘treatment recommended by my doctor’ were ranked as the most important factors for treatment decision making, and ‘religious/spiritual beliefs’ and ‘mental health’ as least important. Median Fact-COST (range 0-44, lower score = worse financial toxicity) was 14 (0-40), indicating high financial toxicity. Most indicated they worry about future finances due to their illness or treatment (72%), are financially stressed (89%), and felt their illness has been a financial hardship to themselves and their family (63%). Decision regret score was numerically higher for those with relapsed disease (24 vs 15; p=0.4) but Fact-COST scores did not differ (13 vs 14, p=0.5); neither were statistically significant.Conclusion: This national survey of AYA HL survivors finds significant financial burdens related to treatment and survivorship. Many patients prioritized treatment recommended by their doctors and a majority felt involved in the decision-making process, suggesting a complex relationship between provider recommendations and patient autonomy. Relapse may impact decision regret, but future analyses are needed from the ongoing survey to confirm these preliminary findings.