How will we demonstrate success?
The ultimate outcome for the treatment of a patient with cancer is survival. However, the relatively small number of new patients diagnosed each year in Scotland and the diverse nature of the cancers make changes in survival difficult to measure, as the effect of any change in treatment may take a number of years to become apparent. It is therefore important to have other measures to assess quality of care and these may ultimately lead to improvement in overall survival and the quality of that survival.
The MSN has already developed a small number of outcome measures, which will be used to evaluate the service and demonstrate improvement (Appendix 2). The measures will review the organisation of care, referral to treatment, patient centeredness, MDT working, stages of the disease process, rehabilitation, survivorship and palliative care.
Any delay in diagnosis may potentially allow spread of the cancer. The MSN will link with colleagues in primary care and secondary care to explore times when there may be delay in referral or diagnosis and if there are interventions which may improve this.
Access to the right care at the right time
The MSN will develop pathways of care so that every patient will have access to the appropriate specialised care at both diagnosis and later in their management.
By delivering the service on a national basis and having supportive care guidelines, the quality of care for an individual patient will be the same, irrespective of where they are treated. Emphasis will be placed on improved communication between the various units treating the patients. This will include the use of shared information on an electronic basis.
It is recognised that certain patients will have to be referred out with Scotland for optimal care. There are nationally agreed referral arrangements for patients with retinoblastoma and with liver tumours requiring surgery, and more recently international referral for proton therapy.
Access to trials
The MSN will deliver equity of access to clinical trials irrespective of geography and age. Recruitment by trial availability across the age range will be monitored and audited.
The majority of children and young people with cancer will become long-term survivors. It is important that both the treatment and follow-up is in a setting appropriate to their age group. The survivorship program will be integral to ensuring appropriate transition for all patients.
Academic and research profile
NHS Scotland has a long tradition of research and academia and a strong teaching ethos. Edinburgh has a Chair of Paediatric Oncology and Glasgow the only full time academic paediatric haematologist in the United Kingdom.
Scottish paediatric cancer centres have been, and will continue to be, strong supporters of clinical trials and of translational and basic research. The MSN acting as a single service for children and young people with cancer in Scotland will encourage and facilitate national research from a wider population base than previously available to any individual centre. A national paediatric cancer research forum will be established with membership encouraged not just from paediatric haematology and oncology, but from the paediatric subspecialties with which cancer interfaces and from adult leukaemia and cancer researchers. It is expected that the Chief Scientist Office will be supportive. The non-clinical trial research portfolio should include basic, translational and clinical research and reflect the interests of a multidisciplinary specialty and the entire age range.
Quality of life issues and late effects are assuming increasing importance as outcomes improve. Scotland has an international reputation in the management of the late effects of chemotherapy, particularly in the area of fertility preservation lead by Professor Hamish Wallace. The SIGN Guideline on the Long term Follow-Up of Survivors of Childhood Cancer (2004) is currently being updated. The haematology molecular laboratory at RHSC, Glasgow has been and remains one of a small number of paediatric laboratories active in translational research, mainly in the field of minimal residual disease, which is now used to risk stratify childhood leukaemia, allowing the tailoring of treatment and the limiting of side effects.
The MSN recognises the importance of a strong research ethos to medical trainees and for retaining and attracting a high calibre workforce to Scotland.
Links to the UK and EU
The prime aim of the MSN is to achieve the best possible outcomes for children and young people with cancer throughout the patient pathway and comparisons require the collection of robust data. Data collection is important both for comparison of outcomes and incidence analysis. The MSN will strengthen links with the Information Services Division (ISD), NHS National Services Scotland to ensure data collection continues to be of the highest possible standard and that the data collected allows meaningful comparisons. ISD exchanges information with UK wide organisations, such as the National Cancer Research Network (NCRN), National Cancer Intelligence Network (NCIN), National Cancer Research Institute (NCRI) and historically, has done so with their predecessors. This is a valuable relationship which allows comparisons of Scottish outcomes by cancer type with those of the rest of the UK. UK organisations in turn link with the European Network of Cancer Registries, which provides wider comparisons. All cancers in children and young people are rare compared to adult cancers and the MSN recognises that interpretation of comparisons may be limited by small numbers.
The MSN will ensure equity of access to the best possible care and will strive to improve outcomes for children and young people with cancer in Scotland.
Email: Fiona McKinlay