Constanze Jonak, Stefanie Porkert, Simone Oerlemans, Evangelia Papadavid, Kevin Molloy, Eva Lehner-Baumgartner, Antonio Cozzio, Fabio Efficace, Julia Scarisbrick
DOI: 10.2340/00015555-3171

Previous studies have reported that primary cutaneous lymphomas profoundly influence patients’ health-related quality of life (HRQoL). However, assessment of this psycho-social concept is not common in routine patient care unless required within clinical trials. The aim of this review is to provide a comprehensive overview of HRQoL measures and outcomes in cutaneous lym­phomas in order to inform clinicians. Advanced-stage cutaneous lymphomas were found to be associated with worse HRQoL than early-stage disease. Specifically, progression of the disease, age, sex, psychosocial issues, educational level and therapy were related 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.

Patients’ health-related quality of life can be impaired physi­cally or psychologically due to symptoms and/or visible lesions of dermatoses. Therefore, assessment of health-related quality of life is of significant importance in patients with primary cutaneous lymphomas, which profoundly 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 predominately 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.