Development of Quality of Life Questionnaire in Skin Lymphoma
Research type
Research Study
Full title
Development of the European Organisation for Research and Treatment of Cancer (EORTC)/ Cutaneous Lymphoma Task Force (CLTF) questionnaire to assess HRQoL in cutaneous lymphoma
IRAS ID
270203
Contact name
Julia Scarisbrick
Contact email
Sponsor organisation
University Hospitals Birmingham NHS Trust
Duration of Study in the UK
4 years, 11 months, 29 days
Research summary
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 types of lymphocytes: B lymphocytes (B-cells) and T lymphocytes (T-cells). Skin lymphomas can develop from either T-cells or B-cells.
Cutaneous T cell lymphoma (CTCL) is the most common type of skin lymphoma (75-80%) of which mycosis fungoides (MF) is the most common subtype. MF commonly presents with flat, red, scaly patches or thicker raised lesions calls plaques, and sometimes large nodules called tumours. A more severe type of leukaemic type of CTCL called Sézary syndrome is characterised by an extensive red, itchy rash covering at least 80% of the body and the presence of cancerous T-cells in the blood. Cutaneous B cell lymphoma is less common type of skin lymphoma (20-25%) and 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. A composite QoL questionnaire addressing all aspects of the disease is lacking. The aim of this research is develop a validated comprehensive skin lymphoma QoL questionnaire.
REC name
North West - Preston Research Ethics Committee
REC reference
20/NW/0204
Date of REC Opinion
11 Jun 2020
REC opinion
Further Information Favourable Opinion