Background: In blood cancer like lymphoma, patients often feel their cancer is invisible to others, and may have less contact with the healthcare team during periods of prolonged remission. Further, lymphoma patients experience significant enough levels of anxiety and depression to impact participation in treatment or hinder treatment decision-making and quality of life. The aim of the present study was to describe how lymphoma patients characterize their cancer-related distress and concerns, including symptoms of anxiety and depression, and to explore associations between key distress domains and anxiety/depression risk and if associations vary by current remission status.

Methods: 200 lymphoma patients/survivors enrolled in Cancer Support Community's online Cancer Experience Registry from 2015-2021 and completed CancerSupportSource™(CSS), a 25-item validated distress screening tool in which participants rate their level of concern (0=Not at all, 1=Slightly, 2=Moderately, 3=Seriously, 4=Very seriously) across five domains: (1) emotional well-being (EWB; 8 items, α=.92; including 2-item depression and anxiety risk screening subscales); (2) symptom burden and impact (SYM; 8 items, α=.89); (3) body image and healthy lifestyle (BHL; 4 items, α=.81); (4) healthcare team communication (HCC; 2 items, α=.65); and (5) relationships and intimacy (REL; 2 items, α=.46). The average item rating for each domain was calculated. Logistic regression was used to explore associations between anxiety/depression risk and distress domains (SYM, BHL, HCC, and REL) controlling for demographic/clinical variables associated with anxiety or depression risk.

Results: The sample (n=200) was 80% Non-Hispanic White, 66% female, 79% urban/suburban; mean (SD) age was 56 (15) years (range: 21-83). 45% were employed, 29% retired, and 23% unemployed; 25% reported household income<$40K. Median time since diagnosis was 2 years (range: <1-34); 33% reported a general diagnosis of lymphoma, 47% specified non-Hodgkin lymphoma, and 21% Hodgkin lymphoma; 53% were in remission. 90% had received chemotherapy, 32% radiation, 20% immunotherapy, 17% targeted therapies, and 10% stem cell transplantation; 39% were currently receiving treatment. Mean (95% CI) distress subscale score was highest for BHL concerns (1.37; 1.22-1.51), followed by EWB (1.27; 1.13-1.41), SYM (1.22; 1.09-1.35), REL (0.97; 0.83-1.11), and HCC (0.73; 0.60-0.87). Regarding BHL, top concerns (% moderately to very seriously concerned) included eating and nutrition (53%) and exercising and being physically active (47%). With regard to EWB, items of greatest distress were worrying about the future (51%) and worrying about finances (45%). For SYM, over half (49%) were concerned about fatigue, and 46% about sleep problems, and for REL, one-third (36%) were concerned about intimacy, sexual function, or fertility, and 21% about problems in relationship with their spouse or partner. Regarding HCC, 26% reported concern related to making treatment decisions, and 19% about communicating with their doctor. Nearly half (46%) were identified as at risk for clinically significant anxiety, and 37% identified as at risk for clinically significant depression; 33% were at risk for both anxiety and depression. Odds of anxiety risk were predicted by concerns about HCC (OR=5.78, p<.001), SYM (OR=4.67, p=.001), and REL (OR=2.04, p=.022), and odds of depression risk by SYM (OR=8.20, p<.001) and BHL (OR=2.33, p=.025). The associations did not vary significantly by current remission status.

Conclusion: In this sample, one-third to one-half of lymphoma survivors experienced substantive symptoms of depression and anxiety. Unaddressed and untreated emotional distress, regardless of cancer remission status, may contribute to increased risk. Concerns about symptom burden and impact had strong associations with both anxiety and depression risk. Interestingly, concern about healthcare team communication, on average, was lower than other distress domains but had the strongest association with anxiety risk. Routine multidimensional distress screening, including risk assessment for both anxiety and depression, can identify cancer-related concerns and triage patients to tailored care for emotional and mental health. Future research should examine barriers to accessing care for emotional and mental health concerns among lymphoma patients and survivors.

Miller:BeiGene: Research Funding; Takeda Oncology: Research Funding; Pfizer Oncology: Research Funding; Merck & Co.: Research Funding; GlaxoSmithKline: Research Funding; Genentech: Research Funding; Bristol Myers Squibb: Research Funding; Astellas Pharma: Research Funding; Janssen: Research Funding; Novartis: Research Funding. Fortune:Takeda Oncology: Research Funding; Sumimoto Dainippon Pharma Co: Research Funding; Merck & Co, Inc: Research Funding; Lilly Oncology: Research Funding; Gilead Sciences: Research Funding; Genentech: Research Funding; Bristol Myers Squibb: Research Funding; Astellas Pharma: Research Funding; AstraZeneca: Research Funding; Amgen Oncology: Research Funding; AbbVie: Research Funding. Zaleta:Gilead Sciences: Research Funding; Pfizer: Research Funding; Astellas Pharma: Research Funding; Novartis: Research Funding; Seattle Genetics: Research Funding; Boston Scientific Foundation: Research Funding.

Author notes

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Asterisk with author names denotes non-ASH members.

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