Clinical severity measures and quality‐of‐life burden in patients with mycosis fungoides and Sézary syndrome: comparison of generic and dermatology‐specific instruments

Abstract

Background Given the severe symptom burden and chronic nature of mycosis fungoides (MF) and S ezary syndrome (SS), effective assessment of quality of life (QoL) is essential to guiding patient-centred care in this population. In this study, we aim to provide a comprehensive assessment of QoL in early-and advanced-stage MF/SS and to assess the correlation of traditional measures of clinical severity with QoL measures. Methods Between July 2017 and April 2019, outpatients at an academic medical centre with either MF/SS (n = 115) or general dermatology concerns (n = 115) completed generic and dermatology-specific QoL instruments [Health Utilities Index Mark 3 (HUI3), RAND 36-Item Short-Form Health Survey (SF-36), Skindex-29, visual analogue scale for itch (VAS itch) and 5-D pruritus scale]. The mean scores of MF/SS patients were compared to that of controls using multivariable regression models adjusted for demographics and medical comorbidities. Cluster analysis of the QoL instruments and clinical severity measures (e.g. stage and body-surface-area involvement) was performed.Results Patients with MF/SS scored significantly worse than controls on all QoL instruments used, with advancedstage (IIB-IVB) disease having the worst QoL impairment. Early-stage (IA-IIA) and advanced-stage MF/SS patients had significantly reduced overall health status (HUI3; P < 0.05), with largest decrements in social functioning and usual role functioning due to physical and emotional health (SF-36; all P < 0.05). MF/SS had significantly worse skin-specific impairment than controls, with advanced-stage disease reporting the most severe skin-specific burden (Skindex-29, P < 0.05). Clinical severity measures had a weak correlation with generic (|r s | = 0.02-0.27) and moderate correlation with dermatology-specific instruments (|r s | = 0.41-0.53).Conclusions MF/SS have a significant impact on multiple domains of patients' QoL, including social, emotional and physical functioning. Current clinical measures do not adequately address QoL outcomes, underscoring the need for integrating formal disease-specific QoL assessment into the routine evaluation of MF/SS patients.

Quality of Life, Anxiety, and Depression in Patients With Early-Stage Mycosis Fungoides and the Effect of Oral Psoralen Plus UV-A (PUVA) Photochemotherapy on it

“…Similar findings were recently observed in a larger cohort of patients with early stage MF although with different QoL instruments ( 5 ). In fact, for patients with higher stage MF (>IIA) overall a worse QoL was recently reported ( 2 , 5 ), indicating that disease stage per se does affect QoL more than area and extent of body involvement. A previous study reveals ( 1 ) that >93% of the surveyed MF patients worried about their disease being serious and >80% worried about dying.…”

“…This indicates that patients with early stage MF are affected in QoL and psychological well-being irrespective of extent of disease (as measured by mSWAT). Similar findings were recently observed in a larger cohort of patients with early stage MF although with different QoL instruments (5). In fact, for patients with higher stage MF (>IIA) overall a worse QoL was recently reported (2,5), indicating that disease stage per se does affect QoL more than area and extent of body involvement.…”

“…Studies show that MF leads to impaired quality of life (QoL) (1-3) and a higher risk for depression and anxiety in affected patients (2,4). This accounts especially for late-stage MF (2,5), alopecia within MF lesions, and female gender as a recent study suggests by observing a significantly worse health-related QoL in these patients (2). However, Semenov et al (6) showed that early stage MF must not be trivialized either as patients with MF stage IA-IIB reported poorer QoL than patients with end-stage kidney disease, diabetes mellitus, or an overall cancer cohort, only to be surpassed by patients suffering from stroke or osteoarthritis.…”

Psychiatric comorbidity, depression, and anxiety levels and quality of life of the patients with mycosis fungoides

“…Sampogna et al 20 found that impairment in global health status, emotional well‐being, fatigue, and insomnia were worse in patients with advanced stage disease. Other studies in the literature have also emphasized worse QoL scores for late‐stage MF patients and Sezary syndrome 15,22,29 . On the other hand, Holahan et al 30 did not detect such a relationship between stage of the disease and QoL, claiming that it may be due to the generally earlier stage of disease of their subjects.…”

“…In the literature similar studies have shown that 50% of the patients with a diagnosis of CTCL have limitations in their daily activities and social interactions. 13 Herbosa et al 22 also revealed reduced overall health status, with largest decrements in social functioning and usual role functioning. Although social activities and relations with family and friends are adversely affected from the disease; mood changes, pain or physical function scores were statistically similar to healthy controls in our study.…”