February 2024 - Last December, Susan Thornton, CEO, and Holly Priebe, COFO, of the Cutaneous Lymphoma Foundation attended the American Society of Hematology (ASH) annual meeting. The annual meeting provides researchers an opportunity to share their work through abstract poster presentations. The abstract poster, "Health-Related Quality of Life (HRQL) in cutaneous T-cell lymphoma: A post hoc analysis examining disease burden and patient characteristics from the phase 3 MAVORIC trial in mycosis fungicides and Sezary syndrome" was accepted to be included in the 2023 poster session.
As one of its authors representing the patient perspective, Susan was invited to present the abstract poster and share the high-level outcomes of the study with clinicians during the Saturday evening poster session. Below is a summary of the findings the abstract presented. The full abstract is available to read here.
Which factors affect health-related quality of life (HRQL) in patients with mycosis fungoides and Sézary syndrome?
Mycosis fungoides (MF) and Sézary syndrome (SS) are two kinds of a rare blood cancer called cutaneous T-cell lymphoma (CTCL). Patients with MF or SS often experience unpleasant skin symptoms for many years including severe itch 1, 2. When the disease progresses to more advanced stages, it may also spread to the lymph nodes, blood, and internal organs. Symptoms of MF/SS can compromise patients’ HRQL 3 ,4.
In this research, study authors looked at baseline data collected from the MAVORIC clinical trial to understand and identify which aspects of the disease (MF/SS) impact patient HRQL the most. The original clinical trial was conducted in the USA, Europe, Japan, and Australia (ClinicalTrials.gov ID NCT05455931). Baseline data which had been collected from the enrolled 372 adults with MF or SS who had not responded to previous treatment was used. Patients completed three questionnaires about their HRQL: the ItchyQol for itch-related HRQL, the Skindex-29 for skin-related HRQL, and the FACT-G for cancer-related HRQL. These questionnaires ask about symptoms and their impact on function, emotions, and general wellbeing.
The findings suggested that symptoms of the disease affect all aspects of patient HRQL. The analysis also showed that younger patients, women, those who are less physically able to care for themselves, and those who have worse itch may be more likely to experience worse HRQL overall.
This research showed that MF or SS that had not responded to previous treatment can impact many aspects of a patient’s life. Disease management strategies suggest that targeting the symptoms which have the greatest impact on HRQL may be helpful for patients.1
1 Horwitz SM et al. J Natl Compr Canc Netw 2008;6:436–42.
2. Meyer N et al. Acta Derm Venereol 2010;90:12–17.
3. Matilla BN et al. JEADV Clin Pract 2022;1:438–49.
4. Molloy K et al. Br J Dermatol 2020;182:770–9.