Health-related Quality of Life in Cutaneous Lymphomas: Past, Present and Future

Jonak, Constanze; Porkert, Stefanie; Oerlemans, Simone; Papadavid, Evangelia; Molloy, Kevin; Lehner-Baumgartner, Eva; Cozzio, Antonio; Efficace, Fabio; Scarisbrick, Julia

doi:10.2340/00015555-3171

Cited by 28 publications

(37 citation statements)

References 46 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Quality of life (QoL) is a broad concept incorporating all aspects of an individual's existence, while health‐related quality of life (HRQoL) is a subset of QoL that relates more specifically to the effects health/illness(es) . While QoL and HRQoL are used interchangeably and synonymously in the literature, both aim to capture patient health and well‐being .…”

mentioning

confidence: 99%

Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index ( PROCLIPI ) study

Molloy

Jonak

Woei-A-Jin³

et al. 2019

Br J Dermatol

112

View full text Add to dashboard Cite

Summary Background Mycosis fungoides (MF) and Sézary Syndrome (SS) are the most common cutaneous T‐cell lymphomas. MF/SS is accompanied by considerable morbidity from pain, itching and disfigurement. Aim To identify factors associated with poorer health‐related quality of life (HRQoL) in patients newly diagnosed with MF/SS. Methods Patients enrolled into Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI; an international observational study in MF/SS) had their HRQoL assessed using the Skindex‐29 questionnaire. Skindex‐29 scores were analysed in relation to patient‐ and disease‐specific characteristics. Results The study population consisted of 237 patients [60·3% male; median age 60 years, (interquartile range 49–70)], of whom 179 had early MF and 58 had advanced MF/SS. In univariate analysis, HRQoL, as measured by Skindex‐29, was worse in women, SS, late‐stage MF, those with elevated lactate dehydrogenase, alopecia, high modified Severity Weighted Assessment Tool and confluent erythema. Linear regression models only identified female gender (β = 8·61; P = 0·003) and alopecia (β = 9·71, P = 0·02) as independent predictors of worse global HRQoL. Item‐level analysis showed that the severe impairment in symptoms [odds ratio (OR) 2·14, 95% confidence interval (CI) 1·19–3·89] and emotions (OR 1·88, 95% CI 1·09–3·27) subscale scores seen in women was caused by more burning/stinging, pruritus, irritation and greater feelings of depression, shame, embarrassment and annoyance with their diagnosis of MF/SS. Conclusions HRQoL is significantly more impaired in newly diagnosed women with MF/SS and in those with alopecia. As Skindex‐29 does not include existential questions on cancer, which may cause additional worry and distress, a comprehensive validated cutaneous T‐cell lymphoma‐specific questionnaire is urgently needed to more accurately assess disease‐specific HRQoL in these patients. What's already known about this topic? Cross‐sectional studies of mixed populations of known and newly diagnosed patients with mycosis fungoides (MF)/Sézary syndrome (SS) have shown significant impairment in health‐related quality of life (HRQoL). Previous studies on assessing gender‐specific differences in HRQoL in MF/SS are conflicting. More advanced‐stage disease and pruritus is associated with poorer HRQoL in patients with MF/SS. What does this study add? This is the first prospective study to investigate HRQoL in a homogenous group of newly diagnosed patients with MF/SS. In patients newly diagnosed with MF/SS, HRQoL is worse in women and in those with alopecia and confluent erythema. MF/SS diagnosis has a multidimensional impact on patient HRQoL, including a large burden of cutaneous symptoms, as well as a negative impact on emotional well‐being.

show abstract

mentioning

confidence: 99%

Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index ( PROCLIPI ) study

Molloy

Jonak

Woei-A-Jin³

et al. 2019

Br J Dermatol

112

View full text Add to dashboard Cite

show abstract

“…There are a variety of tools to assess patients’ HRQoL that include domains for symptoms, function and emotions. Instruments commonly used in epidemiological and clinical studies of patients with CTCL are Skindex‐29, a tool developed specifically for patients with skin disease, and generic tools such as the Functional Assessment of Cancer Therapy‐General (FACT‐G), 36‐item Short Form Health Survey, EORTC Quality of Life Core Questionnaire (QLQ‐C30), General Health Questionnaire and the Spitzer Quality of Life Index 112 …”

Section: Effect Of Ctcl On Hrqolmentioning

confidence: 99%

The changing therapeutic landscape, burden of disease, and unmet needs in patients with cutaneous T‐cell lymphoma

2020

View full text Add to dashboard Cite

Summary Cutaneous T‐cell lymphomas (CTCLs) have a chronic, relapsing course, and the most common subtypes are mycosis fungoides and Sézary syndrome. The disease causes visible skin alterations and can also cause alopecia, pruritus and pain, all of which can impact patients’ health‐related quality of life (HRQoL). The goal of treatment is to reduce symptoms and prevent disease progression. However, treatment recommendations are often based on low levels of evidence due to the lack of well‐designed randomised clinical trials and treatment guidelines, and approved drugs vary considerably across different countries and regions. Currently, available treatments rarely lead to durable remissions and eventually become less effective, meaning patients often require multiple therapy changes. Skin‐directed therapies (SDTs) are first‐line treatments for early‐stage CTCL, whereas systemic therapies may be needed for early‐stage disease that does not respond to SDT or for advanced‐stage disease. However, patients can experience significant side‐effects with these treatments or may be unable to tolerate them. Hence, there is an unmet need for effective therapies with good safety profiles for the treatment of early‐ and late‐stage CTCL. Here, we review current treatment guidelines, investigational and approved treatments, the impact of CTCL on patients’ HRQoL, and the treatment of pruritus.

show abstract

“…A wait-and-see attitude is considered possible in the EORTC [ 6 ] and the National Comprehensive Cancer Network (NCCN) guidelines [ 35 ]. The expectant management could be distressing for patients with PCBCL given the impact of the disease on health-related quality of life (HRQoL) [ 36 ].…”

Section: Indolent Pcbclmentioning

confidence: 99%

Diagnosis and Treatment of Primary Cutaneous B-Cell Lymphomas: State of the Art and Perspectives

Dumont

Battistella

Ram‐Wolff

et al. 2020

Cancers

View full text Add to dashboard Cite

Primary cutaneous B-cell lymphomas are rare entities that develop primarily in the skin. They constitute a heterogeneous group that represents around a quarter of primary cutaneous lymphomas. The 2018 update of the World Health Organization-European Organization for Research and Treatment of Cancer (WHO-EORTC) classification differentiates primary cutaneous marginal zone lymphoma and primary cutaneous follicle center lymphoma with an indolent course from primary cutaneous diffuse large B-cell lymphoma, leg type with an aggressive behavior. The broad spectrum of clinical presentations and the disease course marked by frequent relapses are diagnostic and therapeutic challenges. The classification of these diseases has been refined in recent years, which allows to better define their immunopathogenesis and specific management. In the present article, we review the main clinico-biological characteristics and the current therapeutic options of these three main subsets. Based on the recent therapeutic advances in nodal B-cell lymphomas, we focus on the development of novel treatment options applicable to primary cutaneous B-cell lymphomas, including targeted therapies, combination treatments and immunotherapeutic approaches, and cover basic, translational and clinical aspects aiming to improve the treatment of cutaneous B-cell lymphomas.

show abstract

Health-related Quality of Life in Cutaneous Lymphomas: Past, Present and Future

Cited by 28 publications

References 46 publications

Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index ( PROCLIPI ) study

Characteristics associated with significantly worse quality of life in mycosis fungoides/Sézary syndrome from the Prospective Cutaneous Lymphoma International Prognostic Index ( PROCLIPI ) study

The changing therapeutic landscape, burden of disease, and unmet needs in patients with cutaneous T‐cell lymphoma

Diagnosis and Treatment of Primary Cutaneous B-Cell Lymphomas: State of the Art and Perspectives

Contact Info

Product

Resources

About