Hodgkin lymphoma survivor perspectives on their engagement in treatment decision-making and discussion of late effects.

backgroundHodgkin lymphoma has a bimodal age distribution with the first peak occurring within young adulthood and the second, among older adults. Although current therapy provides excellent disease control, survivors are at risk of developing treatment-related late effects (LEs). We sought to understand how survivors in active survivorship care perceived their role in treatment decision-making and when they acquired an understanding of LEs.

methodsSemi-structured interviews were conducted until saturation was reached. Themes were identified through direct content analysis and consensus coding by a multidisciplinary team of coders, including hematology/oncology providers, patient navigators, and survivor stakeholders.

resultsSeventeen interviews were conducted. Role in initial treatment decision-making fluctuated between passive and active engagement with providers identified as being crucial to this process. Half of interviewees (53%) expressed unmet information needs. Survivors reported having learned about LEs at multiple time points, spanning from before treatment commenced through when a LE was diagnosed. The majority (71%) expressed a desire to have learned about LEs before initial treatment ended. The impact of cancer and fertility discussions were also disclosed. DISCUSSION: Participants highlighted the importance of discussions on LEs early in the care continuum. These preliminary data will be incorporated in a planned treatment decision-making tool that incorporates information on potential LEs. IMPLICATIONS FOR CANCER SURVIVORS: Patient-centered communication approaches should be embraced to assist in treatment decision-making, while considering long-term health consequences. Survivors must be educated on their risk of LEs and encouraged to disclose their perspectives and preferences with their providers to optimize outcomes.