Journal article
Development and Evaluation of a Systematic Educational Intervention for Cutaneous Lymphoma Patients: A Pilot Study
Patient education and counseling, Vol.149, 109685
05/09/2026
DOI: 10.1016/j.pec.2026.109685
PMID: 42127710
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.
•Developed accessible educational materials for cutaneous lymphoma patients•The novel materials were well-received and useful to patients•The patient guide may benefit cutaneous lymphoma patients as an adjunct resource
Details
- Title: Subtitle
- Development and Evaluation of a Systematic Educational Intervention for Cutaneous Lymphoma Patients: A Pilot Study
- Creators
- William Moody - University of IowaSarah L Mott - University of IowaRoshan Abid - University of IowaEric Mou - University of Iowa Hospitals and ClinicsVincent Liu - Department of Dermatology, University of Iowa Hospitals and Clinics, 200 Hawkins Drive, Iowa City, IA 52242, USA
- Resource Type
- Journal article
- Publication Details
- Patient education and counseling, Vol.149, 109685
- DOI
- 10.1016/j.pec.2026.109685
- PMID
- 42127710
- ISSN
- 0738-3991
- eISSN
- 1873-5134
- Publisher
- Elsevier B.V
- Language
- English
- Date published
- 05/09/2026
- Academic Unit
- Dermatology; Hematology, Oncology, and Blood & Marrow Transplantation; Pathology; Internal Medicine
- Record Identifier
- 9985163459102771
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