Abstract
Introduction: Radiotherapy (RT) is often used to manage disease burden and symptoms in patients with cutaneous lymphomas. However, patient-reported outcomes (PRO) related to symptoms and treatment-related toxicity are not often collected in routine clinical practice. Therefore, we developed and implemented a prospective PRO assessment to monitor symptoms, toxicity, and quality of life during and after RT for mycosis fungoides (MF) and other cutaneous lymphomas.
Methods: We developed a novel 30-item patient-reported outcome (PRO) assessment by combining the Skindex-16 (S16) instrument with selected validated items from the PRO-CTCAE and EORTC QLQ-C30 tools. The assessment was incorporated into routine care for all patients receiving RT for cutaneous lymphoma, and all patients at two specialized hematologic radiation clinics were invited to participate in the pilot. The assessment was administered at the initial consultation, weekly during RT, and monthly post-RT, either in paper form during clinic visits or electronically via REDCap.
Descriptive statistics were used to summarize patient and treatment characteristics. Wilcoxon rank-sum tests were used to compare S16 scores between groups. A change of ≥10 points in the S16 composite or subscale scores was considered clinically meaningful, based on previously established thresholds.
Results: Between November 2024 and July 2025, 63 patients treated for cutaneous lymphoma completed at least one PRO assessment during 75 RT courses, yielding a total of 248 assessments (47% response rate). Most patients had MF (n = 41; 65%) or cutaneous indolent B-cell lymphoma (n = 12; 19%). Median age was 60.0 years (IQR: 47.5–70.0 years). Treatment included total skin electron beam therapy (TSEBT) in 36% of courses and focal RT in 64%, most commonly targeting the face/head (33%), trunk (24%), groin (18%), or extremities (18%). Overall, 67% (n = 50) of courses were delivered using electron beam therapy, and 33% (n = 25) with photon therapy.
Baseline assessments were available for 56 patients, with a median S16 composite score of 46.8 (IQR: 24.6–64.7), where higher scores indicate worse quality of life. Baseline scores were higher among patients with MF compared to those with other histologies (51.1 vs. 29.4; p = 0.005), but did not differ significantly between patients treated with TSEBT and focal RT (52.1 vs. 42.9; p = 0.147).
Clinically meaningful improvements in composite S16 scores were observed by one month post-RT and sustained through six months. For the full cohort, median S16 scores were 19.6 (IQR: 7.9–39.9), 25.0 (IQR: 7.7–35.9), and 30.2 (IQR: 6.8–34.7) at one, three, and six months post-RT, respectively. Improvements were more pronounced in patients receiving TSEBT than those treated with focal RT. At one month, median scores declined by 69% in the TSEBT group (from 52.1 [IQR: 30.7–72.8] to 16.5 [IQR: 8.2–33.1]) and by 48% in the focal RT group (from 42.9 [IQR: 21.0–54.8] to 22.4 [IQR: 6.9–39.9]).
Subscale analysis showed parallel improvements across symptom, emotional, and functional domains following RT. Median pre-treatment scores were 37.5 (IQR: 24.0–56.3) for symptoms, 66.7 (IQR: 39.9–83.3) for emotional well-being, and 30.0 (IQR: 9.2–53.3) for function. By one month post-RT, scores improved to 14.6 (IQR: 5.2–38.5), 34.5 (IQR: 10.7–58.3), and 8.3 (IQR: 0.0–32.5), respectively.
During RT, PRO-CTCAE responses indicated moderate to very severe fatigue in 59% of patients, skin dryness in 52%, insomnia in 41%, and skin burns in 25%. By one month post-RT, these rates declined to 36% for both fatigue and skin dryness, 33% for insomnia, and 19% for skin burns.
Conclusions: Routine implementation of a structured PRO assessment in patients undergoing RT for cutaneous lymphoma is both feasible and informative. Our findings demonstrate that both focal RT and total skin electron beam therapy (TSEBT) are associated with clinically meaningful improvements in symptoms, emotional well-being, and functional status. These pilot results support broader PRO integration into routine clinical practice and highlight the important palliative role of RT in this population. Ongoing follow-up is needed to evaluate long-term toxicity and the relationship between PRO responses and disease control. Future research should aim to validate the assessment, evaluate its clinical utility, and enhance response rates and patient engagement.
