1. RARE SKIN TUMOURS IN THE SOUTH WEST J Weeks, V Poirier, J Verne, C Harling on behalf of the Skin Cancer Tumour Panel Objective NICE Improving Outcomes Guidance for skin cancer is currently in development and includes a section on rare skin cancers. Very little is known about the incidence of these rare types, which can be as aggressive as malignant melanoma. Clinical coding for rare skin cancers is complex and it can be difficult to define a rule for extracting cases from the cancer registry. This study undertaken with the Skin Cancer Tumour Panel aims to look at the incidence, demographics and patient pathways for rare skin cancers, and also to investigate how accurate the clinical coding is for these conditions. Method All histopathology departments in the South West were asked to provide an extract of their records over the past 10 years for rare skin cancers according to a list of morphology codes provided. These were compared to records held on the cancer registry. Conclusions At present the recording of rare skin cancers is not accurate enough to give a robust estimation of incidence. The Skin Cancer Tumour Panel has made recommendations to NICE to simplify and improve the accuracy of coding. The establishment of skin MDTs should also help to improve the quality of data for these rare tumours. Results 12 hospitals returned a total of 1135 histopathology reports. Not all of these were skin tumours and not all were malignant. There appeared to be variations in the coding of rare skin cancers between hospitals which could reflect differences in practice across the region. 16 rare skin histology reports 12 on cancer registry 8 with same morphology code Matching histology reports with Cancer Registry Numbers of frequently reported rare skin cancers by Trust Discussion The results are influenced by inaccuracies in coding in histology departments. Reasons for these inaccuracies in coding include: 1.The T code is often entered by non-medical technical staff 2. Different computer systems are used in different departments 3. Computer systems are changed in departments and data may be inaccurately transferred if not inaccessible 4. Pathologists use different codes for the same entity 5. The M code is dictated by the pathologist but entered by a secretary with potential for misunderstanding and error Recommendations In order to improve ability to search for rare skin tumours, we recommend that histopathologists include one of the following M codes on ALL adnexal tumour reports as appropriate: Skin appendage carcinoma (M83903) or Skin appendage adenoma (M84000). (The term adenoma is not entirely accurate for eg benign pilar tumours but it is the best available). Include sweat gland adenocarcinoma (M84003) on coding for all malignant apocrine and eccrine tumours South West Public Health Observatory Cancer Intelligence Service 0117 970 6474 www.swpho.nhs.uk From a sample of 16 rare skin cancers recorded on histopathology reports with a behaviour code of 3, topography code corresponding to skin, and resident in the South West, 12 patients could be found on the SWCIS Cancer Registry. Only 8 of these had the same morphology code as on the histopathology report and an ICD10 code of C44. Example of rare skin tumour: Kaposi's sarcoma (KS) forms small purple or brownish red patches or lumps on the skin but can affect other parts of the body including the lining of the mouth, the lungs and the gut. KS has been shown to be linked to a virus, the human Kaposi's sarcoma virus (HKSV) and can affect people whose natural defences to infection (the immune system) are weakened. AIDS-related KS, is the commonest and most quickly developing form of the disease. 0.001% (166) of hospital consultant episodes were for KS in England (HES 2002-03)