1. The Role of Health Care Needs Assessment Dr. Siân Griffiths Specialist Registrar in Public Health

2. An Assessment of Need for Cancer Services for Children and Young People in England and Wales August 2005 Dr. Siân Griffiths, Prof. David Fone and Dr. Quentin Sandifer

3. Summary of presentation Theory of health care needs assessment How the method was used in the development of guidance for cancer services for children and young people Reflection on the contribution it made to the production of this service guidance and on the key features of the process

4. Health Care Needs Assessment (HCNA) Systematic method of identifying unmet health care need Need defined as the population’s ability to benefit from health care Approaches to HCNA  Epidemiological  Comparative  Corporate Source: A. Stevens, J. Raftery, J. Mant

5. The epidemiological approach to HCNA Triangulation Prevalence and Incidence Services available (and their costs) Effectiveness and cost-effectiveness of services Source: A. Stevens, J. Raftery, J. Mant

6. Guidance Scope ‘(a) children (from birth) and young people in their teens and early twenties presenting with malignant disease, including leukaemia and related conditions as defined by the International Classification of Childhood Cancer (ICCC)’ ‘(b) benign tumours or conditions that require complex treatment pathways, potentially including chemotherapy and radiotherapy’ Source: National Collaborating Centre for Cancer

7. Purpose of Needs Assessment To inform the development of service guidance by providing a description of the burden of disease and current service provision for children and young people with cancer

8. Process Set up project team Agreed data requirements and parameters Identified key contacts Identified need for a survey of the 17 UKCCSG and 8 TCT centres and convened a multidisciplinary team to advise on its content Regular communication with Guidance Development Group

9. Data sources National Register of Childhood Tumours National Cancer Intelligence Centre, Office of National Statistics Population data from Office of National Statistics Hospital Episode Statistics (England)/ Patient Episode Database Wales

10. Specific issues Data availability for 15-24 year olds ICCC classification v’s International Classification of Disease version 10 (ICD- 10) Benign conditions Quality of clinical coding

11. Survey 17 UKCCSG Centres plus 8 TCT Units Case load Staffing Clinical services Allied Health Services Palliative Care Shared Care Additional issues

12. The contribution of HCNA At the beginning of the process of developing service guidance it provided Detailed description of the burden of disease Trends in health services utilisation Outline of current service provision Identification of data issues of relevance for future service evaluation

13. Summary of key features First needs assessment of its type Comprehensive and contemporary description of the burden of disease and service response Required mixture of expertise Consultation with stakeholders essential Timescales challenging Process needs to be managed Resources

14. Acknowledgements Dr. Brian Cottier, Head of Cancer Service Analysis for the Department of Health Mr. Simon Davies, Chief Executive Officer, Teenage Cancer Trust Dr. Brenda Gibson, Consultant Paediatric Haematologist Dr. Ann Goldman, Consultant in Paediatric Palliative Care Leanne Harry Dr. Richard Hain, Senior Lecturer in Paediatric Palliative Medicine Miss Rachel Hollis, Senior Sister, Paediatric & Adolescent Oncology & Haematology Dr. Meriel Jenney, GDG Lead Clinician, Consultant Paediatric Oncologist Nathan Lester Pat Linck, University of Wales, Bangor Dr. Fergus Macbeth, National Collaborating Centre for Cancer Dr. Mike Quinn, Director of the National Cancer Intelligence Centre at the Office of National Statistics Dr. Cerilan Rogers, GDG Chair, Director, National Public Health Service for Wales Louise Soanes, Senior Sister for Children’s Services Professor Mike Stevens, Professor of Paediatric Oncology Mr. Charles Stiller, Director of the National Registry of Childhood Tumours Dr. John Steward, Director of the Welsh Cancer Intelligence Service for Wales Dr. Rhiannon Tudor-Edwards, University of Wales, Bangor Mrs. Janet Vickers, Macmillan Paediatric Oncology Outreach Nurse Specialist