Cutaneous lymphoma (CL) is a cancer of white blood cells that develop in the skin and not any other areas of the body at the time of diagnosis. Quality of life (QoL) in patients with CL is negatively impacted by a large burden of disease symptoms including intractable itch, pain and discomfort to socially stigmatising cosmetic disfigurement which may adversely affect patient self-esteem and interpersonal relationships. There is currently no cure for CL and as such, accurate determination of patient QoL is of paramount importance. To date, the impact of both skin disease and of a cancer diagnosis on patient QoL in CL is assessed using separate questionnaires. A composite QoL questionnaire addressing all aspects of the disease is lacking.
The aim of this research study is to develop a validated comprehensive QoL questionnaire (module) for patients with CL. Once completed, this will be validated and used in conjunction with the EORTC QLQ-C30 for a more accurate assessment of the impact of QoL in patients with skin lymphomas.
This research study is taking place in 5 countries across Europe. We have begun patient interviews and identifying issues (phase I) which will be used to generate items (phase II)
We anticipated to have completed Phase I-II of this project by September to December 2021
Skin lymphoma (also known as ‘cutaneous’ lymphomas) is a cancer of white blood cells that develop in the skin and not any other areas of the body at the time of diagnosis. There are two main types of cutaneous lymphomas: those affect T lymphocytes (T-cell lymphoma) and B lymphocytes (B-cell lymphoma). Cutaneous T cell lymphomas (CTCL) commonly presents with flat, red, scaly patches or thicker raised lesions calls plaques, and sometimes large nodules called tumours. A more severe leukaemic type of CTCL also has cancerous T-cells in the blood. Cutaneous B cell lymphomas on the other hand presents with small, raised, solid areas of skin that can look like small pimples called papules or they may develop into thickened but still quite flat areas called plaques, or larger lumps, often deep red or purplish, called nodules or tumours. Quality of life (QoL) in patients with skin lymphoma is negatively impacted given the large burden of disease symptoms from intractable itch, pain, discomfort and socially stigmatising cosmetic disfigurement which adversely affects patient self-esteem and interpersonal relationships. There is currently no cure for skin lymphoma and as such accurate determination of patient QoL of paramount importance. To date, the impact of both skin disease and of a cancer diagnosis on patient QoL in skin lymphoma is assessed using separate questionnaires. The aim of this research is develop a comprehensive skin lymphoma QoL questionnaire that simultaneously addresses both skin and cancer related issues that affect people with this disease.