Patient-reported distress in Hodgkin lymphoma across the survivorship continuum

Abstract

Purpose Hodgkin lymphoma (HL) survivors face long-term, elevated risk of treatment-related sequelae, including psychosocial distress associated with poor health outcomes. The magnitude and sources of distress are not well described in the routine care of HL outside of clinical trials. Methods We conducted a retrospective cohort study of patients visiting a tertiary-care center for treatment or long-term follow-up of HL. Patient-reported distress was documented using the National Comprehensive Cancer Network Distress Thermometer (DT) and Problem List. Three survivor groups were compared using descriptive methods: on treatment, surviving < 5 years, and surviving ≥ 5 years since diagnosis. Results A total of 1524 DT were abstracted for 304 patients (106 on treatment, 77 surviving < 5 years, and 121 surviving ≥ 5 years). Distress was low overall (median DT = 1, inter-quartile range 0–4) and was similar across survivor groups. However, actionable distress (score ≥ 4) was reported at 29.5% of clinical encounters. Patients on treatment more frequently reported actionable distress (32.5% of visits) compared with patients surviving < 5 years (20.4%) and ≥ 5 years (28.7%) ( P = 0.065). Distress was associated primarily with physical and emotional problems, especially fatigue, worry, and sleep. We did not observe any associations between distress and clinical prognostic factors. Conclusions Distress burden is low in HL, but survivorship is marked by periods of actionable distress, largely related to physical symptoms and emotional issues. This burden may be higher when on treatment and is unrelated to disease-related prognostic factors. Survivorship research typically focuses on the post-therapy period, but our results support testing the efficacy of interventions to address distress in HL during active treatment as well.

Palliative and End-of-Life Care for Patients With Hematologic Malignancies

“…68 Even among patients with highly curable hematologic malignancies, such as Hodgkin's lymphoma, 30% of patients struggle with clinically meaningful distress years after completing their therapy. 69 Similarly, patients with chronic lymphocytic leukemia, an often indolent disease that patients may live with for more than a decade, have been shown to have worse emotional wellbeing than patients with more serious solid tumors. 70 More research is needed to better understand the needs of survivors of hematologic malignancies, especially in the era of new treatments such as CAR T-cell therapy, to inform the development of palliative and supportive care interventions.…”

Advances in Hodgkin Lymphoma: Including the Patient’s Voice

“…One example of a gap in care that could be narrowed with PROs is evaluation of psychosocial stressors. Distress in HL has been reported to exceed 30%, and recent work by Troy revealed distress levels were highest during active treatment, related to patient stress and experience of disease and therapy (65,69). Worry and nervousness were also reported as acute psychosocial stressors (3).…”

Psychological Adaptation to Serious Illness: A Qualitative Study of Culturally Diverse Patients With Advanced Chronic Kidney Disease

“…Psychological distress, which occurs when the cognitive, emotional, and behavioral resources to adapt to stress are exceeded, is prevalent in serious illness. 1,2 Individuals with serious illness and limited socioeconomic resources, defined as having a low annual income, financial instability, or poor educational attainment, experience higher rates of psychological distress as compared with those with adequate resources. 3 Advanced chronic kidney disease (CKD) is a serious illness that disproportionately affects those with limited socioeconomic resources, but psychological adaptation to distress remains poorly investigated in this group.…”