1. CANOLFAN GOGLEDD CYMRU AR GYFER YMCHWIL GOFAL CYCHWYNNOL NORTH WALES CENTRE FOR PRIMARY CARE RESEARCH PRIFYSGOL BANGOR / BANGOR UNIVERSITY Developing and testing new models of follow-up care in cancer Dr Richard Neal Clinical Senior Lecturer in General Practice North Wales Centre for Primary Care Research r.neal@bangor.ac.uk r.neal@bangor.ac.uk

2. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Overview Why follow-up in cancer? Differing models for follow-up and the evidence for them Some theory about contemporary follow-up Using two examples to consider the development and evaluation of the design of future trials

3. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Why follow-up in cancer? Detect recurrence (patients’ main concern) Assess response and side-effects of treatment Assess disease progression and further treatment planning Preparing for palliative and terminal care Assessment and treatment of psychosocial issues Information provision Ongoing management of co-morbidity Co-ordination of care Patient preference and reassurance Continuity of care from treating doctor Carer support Clinical trials

4. PRIFYSGOL BANGOR / BANGOR UNIVERSITY ‘Traditional’ hospital follow-up Conventional hospital based follow-up places a considerable burden on hospital outpatient clinics Is of debatable value for many cancers in terms of prompt diagnosis of recurrence and improved survival Patients may find it reassuring Patients may find it anxiety raising Patients may find it a waste of time

5. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Who provides follow-up, and how? Specialists – Medical / clinical oncologists – Surgeons – Physicians GPs Specialist nurses (nurse-led models) Models – Traditional – Phone – Patient initiated – ….or a combination of these

6. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Huge variation in follow-up needs Patient: – By cancer – By stage – By treatment modality – By prognosis – By co-morbidity – By needs – By preference.....not a one size fits all

7. PRIFYSGOL BANGOR / BANGOR UNIVERSITY

8. A framework for holistic assessment of risks and needs

9. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Designing trials Which patients? Which interventions? – Biomarkers – Imaging – Clinical examination – Psycho-educational – Setting / clinician / mode Which outcomes? – Patient safety – Detection of recurrence – Quality of Life – Satisfaction

10. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Developing interventions For lung and prostate cancers we have undertaken: Guideline review Systematic review Case-note analysis Database analysis Qualitative study …….and developed / developing trial interventions

11. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Developing interventions For lung cancer: Primary care Continues to see patients frequently after diagnosis Knows these patients well Is good at managing co-morbidity Is good at smoking cessation Is good at co-ordination and liaison Primary care is less good at Specialist lung cancer knowledge Understanding what is happening in secondary care

12. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Developing interventions For prostate cancer: Need for robust primary research to inform future evidence-based models of follow-up care Deficiencies in the system between primary and secondary care Some patients falling between primary and secondary care and getting lost to follow-up Identified steps needed to breakdown the barriers to make primary care follow-up happen High levels of unmet needs (especially psychosocial, sexual, incontinence)

13. PRIFYSGOL BANGOR / BANGOR UNIVERSITY A randomized controlled trial of a nurse- led psycho-educational intervention delivered in primary care to prostate cancer survivors (PROSPECTIV) Funding: Prostate Cancer Charity, PI: Eila Watson, Oxford Brookes (with Bangor, Edinburgh, Oxford, Cambridge) Cluster randomization (150 practices) Identification of men suitable for discharge to primary care from participating practices Screen to identify patients with problems (urinary, sexual, bowel, hormonal, anxiety / depression) (n=350) Allocation to nurse led psycho-educational intervention or usual care Follow up: 1, 6, 12 months Main outcome: prostate cancer related quality of life

14. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Potential Macmillan funding for BCUHB / north Wales Interventions: An ‘end of active treatment MDT’ held for prostate cancer patients held, for care planning, with levels of intervention stratified with risk of adverse events An automated IT system linking primary and secondary for routine aspects (PSA) Clinical Nurse Specialists as change agents to train primary care practitioners in the delivery of high quality patient- centred follow-up care

15. PRIFYSGOL BANGOR / BANGOR UNIVERSITY Discussion / questions Dr Richard Neal North Wales Centre for Primary Care Research r.neal@bangor.ac.uk