Acta Dermato-Venereologica 99-7CompleteContent | Page 7

640 REVIEW ARTICLE Health-related Quality of Life in Cutaneous Lymphomas: Past, Present and Future Constanze JONAK 1 , Stefanie PORKERT 1 , Simone OERLEMANS 2 , Evangelia PAPADAVID 3 , Kevin MOLLOY 4 , Eva LEHNER- BAUMGARTNER 5 , Antonio COZZIO 6 , Fabio EFFICACE 7 and Julia SCARISBRICK 4 1 Department of Dermatology, Medical University of Vienna, Vienna, Austria, 2 The Netherlands Comprehensive Cancer Organization, Eindhoven, The Netherlands, 3 Department of Dermatology, University Hospital of Athens, Athens, Greece, 4 University Hospital Birmingham, Birmingham, UK, 5 Department of Clinical Psychology, General Hospital of Vienna, Vienna, Austria, 6 Department of Dermatology and Allergology, Kantonspital St. Gallen, St. Gallen, Switzerland, and 7 Italian Group for Adult Hematologic Diseases, Data Center and Health Outcomes Research Unit, Rome, Italy Previous studies have reported that primary cutaneous lymphomas profoundly influence patients’ health-rela- ted quality of life (HRQoL). However, assessment of this psycho-social concept is not common in routine pa- tient care unless required within clinical trials. The aim of this review is to provide a comprehensive overview of HRQoL measures and outcomes in cutaneous lym­ phomas in order to inform clinicians. Advanced-stage cutaneous lymphomas were found to be associated with worse HRQoL than early-stage disease. Specifi- cally, progression of the disease, age, sex, psychoso- cial issues, educational level and therapy were rela- ted to the extent of impairment of HRQoL. Treatment response was linked to improved HRQoL, but notably ameliorated HRQoL scores were also reported despite objective disease response. However, the variety of instruments applied to measure HRQoL in cutaneous lymphomas makes it difficult to compare data directly. In conclusion, speciality-specific HRQoL instruments were superior to generic ones, which probably failed to recognize small, but relevant, changes, demonstrating the need for a disease-specific tool. Key words: health-related quality of life; quality of life; primary cutaneous lymphomas; patient care; quality of life question­ naires. Accepted Mar 13, 2019; E-published Mar 14, 2019 Acta Derm Venereol 2019; 99: 640–646. Corr: Constanze Jonak, Department of Dermatology, Medical University of Vienna, Waehringer Guertel 18-20, AT-1090 Vienna, Austria. E-mail: [email protected] Q uality of life (QoL) is a broad concept incorporating all aspects of an individual’s existence. Health- related quality of life (HRQoL) is a subset relating only to the health domain of that existence (1). Health implies “a state of complete physical, mental and social well-being and not merely the absence of disease or in- firmity” according to the WHO’s definition (2). In line with this, HRQoL is understood as an individual percep- tion of one’s position in life, related to culture and value systems (3), and therefore may vary due to cultural and geographic differences (4, 5). HRQoL can be measured with questionnaires completed by patients themselves. Generic instruments attempt to provide a summary of doi: 10.2340/00015555-3171 Acta Derm Venereol 2019; 99: 640–646 SIGNIFICANCE Patients’ health-related quality of life can be impaired physi­ cally or psychologically due to symptoms and/or vis­ ible lesions of dermatoses. Therefore, assessment of health-related quality of life is of significant importance in patients with primary cutaneous lymphomas, which pro- foundly influence patients’ health-related quality of life in terms of a visible stigma and its potential lethality. Health- related quality of life in patients with cutaneous lymphomas should be considered a vital sign in the face of predomina- tely palliative therapeutic settings. This review provides an overview of health-related quality of life data, in order to highlight the necessity of patient-reported outcomes within clinical trials and to consider the concept of health-related quality of life in routine care. HRQoL, while specific ones focus on individual diseases, patient groups, or areas of function. To gain significant data on HRQoL, measures must be both responsive/ reliable (high ratio of signalling) and valid (measuring for the intended purpose) (6). Meanwhile, questionnaires scoring individual disease-related conditions are standard tools and mandatory in clinical trials (7) to evaluate changes in patients’ HRQoL in context with the efficacy of new (cancer) drugs. HRQoL in clinical dermatology is of particular im- portance, although there are few life-threatening condi- tions. Nevertheless, the majority of dermatoses impair patients’ lives in a physical, emotional and functional manner (8). Thus, previous studies have reported a high mental burden in patients with psoriasis, eczema, cuta- neous lupus erythematodes, non-melanoma skin cancer and actinic keratosis, all representing chronic dermatoses with visible stigmas (9–12). This review emphasizes the aspects of HRQoL in primary cutaneous lymphomas (CL), a heterogeneous group of clonal lymphoproliferative skin disorders of T-cell (CTCL) and B-cell (CBCL) origin (13); subtypes are recorded in the World Health Organization – Euro- pean Organization of Research and Treatment of Cancer (WHO-EORTC) classification (14). CBCL (25%) mostly show an indolent course and CTCL (75%) also predomi- nantly have an excellent prognosis in the early stages. In This is an open access article under the CC BY-NC license. www.medicaljournals.se/acta Journal Compilation © 2019 Acta Dermato-Venereologica.