Patient preferences and travel burden before radiotherapy for primary cutaneous lymphoma: baseline results from the S-MISR registry

PURPOSE: Patients with primary cutaneous lymphoma may have substantial impairments in health-related quality of life (HRQoL) and may require referral to specialized radiation oncology centers. The current exploratory baseline analysis assessed patient preferences for quality of life (QoL) versus length of life (LoL), travel distance, and baseline HRQoL before radiotherapy. METHODS: Of 130 screened patients, 82 patients with primary cutaneous lymphoma referred for radiotherapy were enrolled in the prospective S‑MISR registry between September 2019 and August 2024. Their QoL-versus-LoL preferences were assessed using the Quality-Quantity Questionnaire. Baseline HRQoL was evaluated using Skindex-29 and EORTC QLQ-C30. Travel distance to the treating radiation oncology department was analyzed overall and by lymphoma subtype. RESULTS: Median age was 63 years (range 34-92), and 59 patients (72%) had advanced-stage disease. Fifty-six patients (68%) had mycosis fungoides (MF), 13 (16%) had Sézary syndrome (SS), and 13 (16%) had other primary cutaneous lymphomas. Overall, 31 patients (38%) prioritized QoL, 21 (25%) prioritized LoL, and 30 (37%) rated both equally. Median travel distance was longest for Sézary syndrome (201 km), followed by mycosis fungoides (114 km) and non-MF/SS lymphomas (65 km). Older age and longer travel distance emerged as potential factors associated with QoL preference. Baseline Skindex-29 scores indicated greater HRQoL impairment in MF and SS than in non-MF/SS lymphomas. CONCLUSION: Patient preferences regarding QoL versus LoL vary considerably before radiotherapy. Travel burden may be an important patient-centered factor for treatment planning, shared decision-making, and future prospective radiotherapy studies.