Classical Hodgkin Lymphoma; Real-World Observations from Physicians, Patients, and Caregivers on the Disease and Its Treatment (CONNECT)-a Cross-Sectional Survey of Patients with Stage III or IV Classical Hodgkin Lymphoma Compared By Age

Introduction

Hodgkin lymphoma (HL) represents ~10% of all lymphomas in the United States (US) with classical HL (cHL) accounting for ~95% of all HL cases. cHL has a bimodal age distribution with peaks at ages 15-39 and ≥75 years. As part of CONNECT, the first real-world survey in cHL to include physicians, patients, and caregivers, patient treatment preferences for those with stage III or IV cHL were explored and differences evaluated between those aged <40 years (corresponding to the upper end of the age range for adolescence and young adulthood [US National Cancer Institute]) and ≥40 years at diagnosis.

Methods

The CONNECT patient survey was a non-interventional patient-centered survey. Participants included were aged ≥18 years at the time of participation (aged ≥12 years at diagnosis), diagnosed with cHL within the past 10 years, and previously or currently being treated for cHL in the US. The CONNECT survey was reviewed and approved by the New England Institutional Review Board and administered from December 30, 2020, to March 1, 2021.

Results

In CONNECT, 182 participants had stage III or IV cHL (64% female; 77% Caucasian) with 64% aged <40 years at diagnosis. Overall, median (interquartile range) age at cHL diagnosis was 32 (25-50) years (aged <40, 27 [23-32] years; ≥40, 57 [49-64] years). Sixty-two percent of participants were diagnosed with stage III or IV cHL within the past 2 years and 27% were receiving treatment at time of survey.

Cure was ranked as the first or second goal of initial cHL treatment for 86% of participants aged <40 years and 52% of participants aged ≥40 years (P < 0.001; Figure A). A higher percentage of participants aged ≥40 than <40 years ranked living longer (43% vs 28%) and having better quality of life (26% vs 8%, P = 0.001) as the first or second goal for initial cHL treatment. Among those with stage III or IV cHL in remission (<40, n=105; ≥40, n=11), 86% aged <40 and 100% age ≥40 years ranked staying in remission as the first or second most important survivorship goal.

At diagnosis, a significantly higher percentage of participants aged <40 than ≥40 years preferred to treat their cancer aggressively (79% vs 60%, P = 0.016; Figure B). These participants were willing to trade off short-term risks for long-term efficacy (93% vs 71%,

P < 0.001; Figure B). However, 44% of those aged <40 and 45% of those aged ≥40 years were willing to make that same trade-off for long-term risk reduction.

A significantly higher percentage of participants aged <40 than ≥40 years reported being informed by their health care provider (HCP) about the following short-term side effects: nausea/vomiting (93% vs 80%, P = 0.015), hair loss (97% vs 74%, P < 0.001), fatigue (96% vs 74%, P < 0.001), risk of infection from low blood counts (90% vs 62%, P < 0.001), low blood count (87% vs 63%, P < 0.001), numbness and tingling (91% vs 45%, P < 0.001), and muscle weakness (74% vs 55%, P = 0.014). Regardless of age, fewer participants reported being told about the long-term risks of cHL treatment with those aged <40 years being more informed about the risk of developing other cancers (73% vs 55%; P = 0.028) and infertility (74% vs 22%; P < 0.001), and those aged ≥40 years being more informed about stroke (40% vs 13%; P < 0.001). Most participants reported being told about the short-term (<40 years, 85%; ≥40 years, 72%) and long-term (< 40 years, 75%; ≥40 years, 62%) side effects of cHL treatment during a discussion of treatment options with their HCP.

When asked about long-term side effects of greatest concern, a significantly higher percentage of participants aged <40 compared with ≥40 years were concerned about secondary cancers (81% vs 46%; P < 0.001) and infertility (23% vs 6%; P = 0.007) whereas a significantly higher percentage of those aged ≥40 compared with those <40 years were concerned about heart disease and stroke (58% vs 42%; P = 0.046) and infections (31% vs 4%; P < 0.001).

Conclusion

Treatment goals differ significantly between participants with stage III or IV cHL based primarily on age, with those aged <40 years focusing on cure and aggressive treatments and those ≥40 years focusing on living longer and obtaining a good quality of life. Additionally, participants aged <40 compared with those ≥40 years were more willing to accept short-term risks in exchange for long-term benefits. Lastly, regardless of age, most participants were told about short-term and long-term side effects in discussion of treatment options with their HCP.

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