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PRIFYSGOL BANGOR / BANGOR UNIVERSITY CANOLFAN GOGLEDD CYMRU AR GYFER YMCHWIL GOFAL CYCHWYNNOL NORTH WALES CENTRE FOR PRIMARY CARE RESEARCH 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 [email protected] 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 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 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 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 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 PRIFYSGOL BANGOR / BANGOR UNIVERSITY PRIFYSGOL BANGOR / BANGOR UNIVERSITY A framework for holistic assessment of risks and needs 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 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 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 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) PRIFYSGOL BANGOR / BANGOR UNIVERSITY A randomized controlled trial of a nurseled 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 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 patientcentred follow-up care PRIFYSGOL BANGOR / BANGOR UNIVERSITY Discussion / questions Dr Richard Neal North Wales Centre for Primary Care Research [email protected]
