Collection of cancer Patient Reported Outcome Measures (PROMS) to link with primary and secondary electronic care records to understand and improve long term cancer outcomes: A protocol paper.

INTRODUCTION: More people are living with and beyond a cancer diagnosis. There is limited understanding of the long-term effects of cancer and cancer treatment on quality of life and personal and household finances when compared to people without cancer. In a separate protocol we have proposed to link de-identified data from electronic primary care and hospital records for a large population of cancer survivors and matched controls. In this current protocol, we propose the linkage of Patient Reported Outcomes Measures data to the above data for a subset of this population. The aim of this study is to investigate the full impact of living with and beyond a cancer diagnosis compared to age and gender matched controls. A secondary aim is to test the feasibility of the collection of Patient Reported Outcomes Measures (PROMS) data and the linkage procedures of the PROMs data to electronic health records data. MATERIALS AND METHODS: This is a cross-sectional study, aiming to recruit participants treated at the Leeds Teaching Hospitals National Health Service Trust. Eligible patients will be cancer survivors at around 5 years post-diagnosis (breast, colorectal and ovarian cancer) and non-cancer patient matched controls attending dermatology out-patient clinics. They will be identified by running a query on the Leeds Teaching Hospitals Trust patient records system. Approximately 6000 patients (2000 cases and 4000 controls) will be invited to participate via post. Participants will be invited to complete PROMs assessing factors such as quality of life and finances, which can be completed on paper or online (surveys includes established instruments, and bespoke instruments (demographics, financial costs). This PROMs data will then be linked to routinely collected de-identified data from patient's electronic primary care and hospital records. DISCUSSION: This innovative work aims to create a truly 'comprehensive patient record' to provide a broad picture of what happens to cancer patients across their cancer pathway, and the long-term impact of cancer treatment. Comparisons can be made between the cases and controls, to identify the aspects of life that has had the greatest impact following a cancer diagnosis. The feasibility of linking PROMs data to electronic health records can also be assessed. This work can inform future support offered to people living with and beyond a cancer diagnosis, clinical practice, and future research methodologies.

Basal cell carcinoma with a sarcomatous component (carcinosarcoma): a series of 5 cases and a review of the literature.

Cutaneous carcinosarcomas are rare biphasic malignant tumors with a malignant epithelial component together with malignant stroma. Five cases treated in the Yorkshire region of England between 2003 and 2006 are presented. The patients were male with an age range from 58 to 84 years. Four lesions occurred on the face and one on the trunk. Each tumor had an epithelial component resembling a typical nodular basal cell carcinoma. The stromal components demonstrated atypical spindle cells and tumor giant cells, undifferentiated stroma, or osteoid formation. All underwent surgical excision and none showed evidence of recurrence (follow-up 3-17 months, one death from unrelated causes). The recent literature concerning the pathogenesis and prognosis of these unusual tumors is reviewed.

Subungual Bowen's disease treated by topical aminolevulinic acid-photodynamic therapy.

A 66-year-old man presented with an 18-month history of progressive nail dystrophy involving his left index finger. A diagnostic biopsy specimen confirmed the clinical suggestion of subungual Bowen's disease (carcinoma in situ). Various treatment options were considered, and the decision was made to treat with photodynamic therapy using topical 5-aminolevulunic acid administered as two treatments 4 weeks apart. The patient was reviewed 3 months after treatment and then regularly at 6-month intervals. Thirty months after treatment there remained no clinical evidence of recurrence of the condition with preservation of a normal nail unit. Although the successful treatment of cutaneous Bowen's disease with photodynamic therapy is well documented, this is the first report of the successful treatment of subungual Bowen's disease using topical aminolevulunic acid-photodynamic therapy.