Cutaneous T-cell and B-cell lymphomas
Project summary
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.
Achievements
This research study has taken place in 5 countries (6 centres) across Europe. So far, 69 patients (target 60) have been recruited from each of the following representative patient groups: early MF (stage IA-IIA), late MF (stage IIB-IVB) and cutaneous B cell lymphoma.
Healthcare professional (HCP) interviews have now been completed (last HCP recruited 22/03/22) with 22 participants (planned 3-4 per site; total 18-24). Unfortunately, the Kiel site were unable to complete HCP interviews due to unexpected illness. However Vienna (German speaking site) have provided 6 HCP interviews which compensates for the 3-4 originally planned HCP interviews at the Kiel Site.
An updated systematic literature review has been completed to identify new issues; this has been combined with baseline issue list and a new issue list generated for phase 1b interviews.
A grant has been awarded to Dr. Kevin Molloy for recruit a study co-ordinator for three years for this project (The City of Dublin Skin and Cancer Hospital Charity).
Future plans
- Obtain ethical approval for updated study protocol for phase 1b
- Attend training workshop for phase ½ module development
- Activate and begin participant recruitment once ethical approval obtained at each co-ordinating site
For patients
Skin lymphomas are rare cancers of white blood cells that appear in the skin. They are not found in other parts of the body at the time of diagnosis. There are two main types:
Cutaneous T-cell lymphomas (CTCL): often show up as red, scaly patches, thicker raised plaques, or larger lumps called tumours. In some people, the cancerous cells also circulate in the blood. CTCL can also cause the skin to become red and inflamed all over the body (erythroderma), which can be particularly uncomfortable and distressing.
Skin lymphomas are rare cancers of white blood cells that appear in the skin. They are not found in other parts of the body at the time of diagnosis. There are two main types:
Cutaneous B-cell lymphomas (CBCL): usually appear as small raised spots that may develop into flat, thickened areas (plaques) or larger red-purple lumps (nodules or tumours).
Living with skin lymphoma has a major impact on quality of life. Symptoms such as relentless itching, pain, and visible skin changes can be physically uncomfortable and socially distressing, affecting self-confidence and relationships. At present, there is no cure for skin lymphoma, so understanding and measuring how the disease affects patients’ day-to-day lives is especially important.
Currently, quality of life in skin lymphoma is assessed using two separate questionnaires—one designed for skin conditions and one for cancer. This approach does not fully capture the unique challenges faced by people living with skin lymphoma.
The aim of this research is to develop a new, comprehensive quality of life questionnaire specifically for skin lymphoma. This tool will combine both skin-related and cancer-related aspects of the disease, providing a more accurate picture of how patients are affected and helping to guide better care and support.