Perceptions of Role in Treatment Decision Making and Understanding of Late Effects Among Hodgkin Lymphoma Survivors: Results From a National Survey HL Decision Making and Late Effects

Abstract

Background: Hodgkin Lymphoma (HL) survivors are at risk of treatment-related late effects (LEs). With these potential risks and increasing numbers of treatment options for newly diagnosed patients, communication and shared decision making are essential to supporting patients throughout the cancer care continuum. We aimed to gather perspectives of HL survivors about their actual role in treatment decision making and their understanding of LEs.

Materials and methods: After initial pilot testing at a cancer survivor conference, we disseminated a 23-question survey in a single-wave e-mail through the Leukemia & Lymphoma Society's national listserv. We focused on 4 constructs: (1) patient's understanding of HL at diagnosis; (2) initial discussions with an oncologist; (3) factors in decision making of treatment, and (4) current health status.

Results: A total of 135 participants responded to the survey. While 73% of survey respondents perceived some involvement in decision making, one-half of respondents felt the treatment plan was a shared decision with their provider. Among patient-level factors, side effects/LEs were most frequently endorsed as important to treatment decisions. Eighty-four percent of respondents had been educated about risk for potential LEs. Thirty-six percent had been diagnosed with a LE at the time of survey completion with 3% reporting a second cancer diagnosis.

Conclusion: Survey respondents described their role in treatment decision making for newly diagnosed HL. Nearly half of patients did not endorse participating in shared decision making. A substantial number had experienced LEs. Future work should focus on improving patient-provider communication in decision processes for newly diagnosed HL.

Keywords: Chemotherapy; Lymphoma; Survivorship.