Development and evaluation of a systematic educational intervention for cutaneous lymphoma patients: A pilot study.

Abstract

Mycosis fungoides (MF) and Sézary syndrome (SS), forms of cutaneous T-cell lymphoma (CTCL), manifest an indolent course in early stages, making symptom control and quality of life (QoL) paramount. Clear and actionable patient education materials may support improved QoL; however, no standardized educational intervention exists for patients with MF/SS. This single-arm pilot study aimed to develop a novel patient guide and assess its readability, actionability, feasibility, and exploratory patient-reported outcomes. The "Managing Cutaneous T-cell Lymphoma: A Patient's Guide" (MCLPG) was iteratively developed to enhance clarity, readability, and actionability. Sixteen patients with MF/SS were recruited and underwent a standardized education session using the MCLPG learning tool. Study enrollees completed baseline, midpoint (30-50 days), and final (90-110 days) follow-up surveys evaluating QoL, patient satisfaction, illness perception, material usefulness, and self-efficacy. The MCLPG understandability score increased from 76% to 94%, and the actionability score rose from 66% to 83% during the revision process. The reading grade level improved from a 9th to a 7th-grade level. At the midpoint, 100% of participants reported the MCLPG as useful, and 82% still endorsed its usefulness at the final follow-up. No statistically significant changes were observed across the patient-reported outcomes. Skindex-16 emotion, symptom, and functioning scores trended toward improvement over time but were not statistically significant. The novel patient education materials were well received by patients with MF/SS. Further research is necessary to clarify the efficacy and generalizability of the MCLPG in clinical practice. The MCLPG may serve as a feasible adjunct educational resource in clinical settings, but its efficacy on patient-reported outcomes requires additional evaluation.