CANOLFAN GOGLEDD CYMRU AR GYFER YMCHWIL GOFAL CYCHWYNNOL

NORTH WALES CENTRE FOR PRIMARY CARE RESEARCH

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Developing and testing new models of follow-up care in cancer

Dr Richard NealClinical Senior Lecturer in General Practice

North Wales Centre for Primary Care Researchr.neal@bangor.ac.uk

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TY 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

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TY 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

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‘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

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TY 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

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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

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A framework for holistic assessment of risks and needs

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TY 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

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TY 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

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TY 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

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TY Developing interventionsFor 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)

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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

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TY 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

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Dr Richard NealNorth Wales Centre for Primary Care Research

r.neal@bangor.ac.uk