Cutaneous Lymphoma Foundation

ABSTRACTBackgroundThere is no consensus on how best to assess the impact of living with mycosis fungoides (MF)/Sézary syndrome (SS) on a patient's quality of life.ObjectivesTo identify all potential concepts that describe disease severity or contribute to health‐related quality of life (HRQOL) from patients with MF/SS and their care partners.MethodsA systemic literature review of articles and meeting abstracts published between 2000 and 2022 was conducted. Inclusion criteria were any study that included MF/SS patients or care partners and reported any concept that patients or care partners could use to characterize any aspect of MF/SS. Thematic analysis was completed using NVIVO.ResultsOne hundred and three articles/abstracts met inclusion criteria. Within these studies, 30 existing instruments were utilized. Concepts within these existing instruments fell into the following health component categories: Physical‐functional well‐being (PF; 50.4%), mental health/emotional well‐being (MHE; 26.6%), social well‐being (S; 18.3%) or other (O; 4.7%). The most frequently measured concepts by existing instruments were physical mobility (7.5%), itching (7.2%), pain (7.0%) and fatigue (5.2%). One study conducted content validity analysis for an included instrument. Distinct concepts were identified from qualitative studies and novel instruments, and included hair loss, nail changes, cracking/fissuring of the skin, inability to regulate temperature, difficulty with wound dressings, skin infection, skin oozing/weeping/bleeding, pigmentary changes, treatment burden and treatment satisfaction, and care partners' specific concepts. One study conducted content validity analysis for an included instrument.ConclusionsNumerous PROMs have been used to assess HRQOL for patients with MF/SS, with very little content validity analysis. Several concepts identified from qualitative studies and newly developed or piloted instruments are not represented in existing PROMs. Future efforts will include prioritizing candidate core concepts by stakeholders to develop a core domain set that captures the most relevant aspects of MF/SS that impact HRQOL.