Characterizing Hodgkin lymphoma survivors' shared decision making across the care continuum Free

Introduction: With multiple stage-based treatment options like systemic treatment alone, combined modality therapy, and immunotherapy available for Hodgkin Lymphoma (HL), shared decision making (SDM), a patient-centered communication (PCC) approach, is key to high quality care. Studies of SDM in HL are limited. Nearly half of HL survivors do not experience SDM, which is associated with poor health outcomes and high utilization. We need to understand HL survivors' SDM experiences to improve PCC and HL treatment and survivorship care quality. We filled this gap by characterizing survivors' experiences with SDM in HL care across the continuum (initial treatment; relapse or change in treatment; survivorship care).

Methods: HL survivors were recruited for in-depth, semi-structured interviews to explore SDM experiences. Recruitment was conducted in collaboration with national non-profit partners Blood Cancers United, Elephants & Tea, and Cactus Cancer Society via social media and direct email. Eligibility was confirmed by participants uploading documentation to REDCap of their HL diagnosis occurring at age ≥18 years . A qualitative rapid analysis was conducted using SDM sensitizing constructs to characterize survivors' SDM experiences when making decisions in each care phase. Thematic analysis and qualitative content analysis were conducted.

Results: A total of 29 survivors participated: 7 experienced relapse; median age at diagnosis was 32 (interquartile range, IQR, 28-44) and current age was 36 (IQR, 28-52); 66% identified as White, 21% as Black, and 17% as Hispanic; 66% were privately insured, 23% were publicly insured, and 10% were uninsured at diagnosis. Collectively, survivors experienced one of three types of decision making: 1) SDM with options, 2) SDM without options, or 3) paternalistic decision making (no SDM features). For both initial treatment and survivorship decisions, survivors typically experienced SDM without options (i.e., given one treatment option but experienced other SDM features, like managing uncertainty). Most survivors (88%) felt included in decisions across all phases of care, except for those experiencing paternalistic decision making.

Survivors described experiencing five key features of SDM. First, information exchange included the presence/absence of treatment options, receipt of tailored information, discussions on treatment risks/benefits, and receipt of treatment or survivorship education. Second, survivors described how they manage uncertainty by asking questions about what to expect, risks of mortality and relapse, and side effects, to which their clinicians responded with education, emotional support, and referrals to specialists, especially for survivorship care. Third, survivors indicated engagement with clinicians when clinicians prioritized survivors' voices in decisions by allowing them to ask questions and providing thorough explanations. Fourth, survivors reported that clinicians were responsive to emotions by listening and responding to concerns, being accessible, and validating and empathizing with their feelings. Fifth, survivors describedfostering a trustworthy relationship when clinicians were accessible, knowledgeable, and responsive to concerns and, specific to survivorship care decisions, when they already had an established rapport. Lastly, it is noteworthy that clinicians' decision-making role was described differently depending on the phase of care. For treatment and relapse decisions, survivors prioritized the clinicians' decision-making role as manager/director, teacher/educator, and driver/main decider whereas for survivorship decisions, clinicians' role was more supportive and referred to as advisor, supporter/listener, or not having a decision-making role.

Conclusions: Although HL survivors typically did not receive options for initial treatment (which is part of information exchange in PCC and SDM), they do describe other SDM features and report feeling included in decisions. Results characterize survivors' experiences with SDM across the continuum and indicate survivors' perceptions of their clinician's decision-making role may differ with treatment and survivorship care decisions. Studies can use this conceptualization of SDM in HL to explore differences by survivor demographics and socioeconomic states among survivors who have a risk of worse survival outcomes, such as those who are racially, ethnically diverse, or uninsured.