The Addenbrooke s Hospital Cambridge Cambridge
Follow up- Why?- Medical Monitor and treat Acute side effects of treatment Early detection of Local and Regional Recurrences (Curative) Early detection of metastatic disease Assess Late effects
Follow up- Why?-Patient Reassurance Help side effects of treatment Emotional support
Standard FU Schema 3 monthly for 2 years 6 monthly up to 5 years? Yearly up to 10 years
2004 What CBU wanted to achieve Meet new targets Free up space for symptomatic patients Define group of patients suitable for less intensive follow up
What the Papers Say Donnelly et al. Int.J.Clin. Practice 2001 Sept; 55(7):431 recurrences' usually present to an interval clinic. Most that present to routine clinic are symptomatic. Grunfeld et al. BMJ.1996 Sept 14: 313 (7058): 665-9 -GP follow up of breast cancer in remission is not associated with increase time to diagnosis of recurrence or anxiety, or deterioration in quality of life
Benefits of adopting a self management model Increased patient satisfaction and quality of care Individualised support that meets patients needs Reduced OP follow up/unplanned admissions 7
Focus Groups Share information Rapid access back to specialist care
Percent net survival Net survival* for breast cancer diagnosed 1998-2003 at Cambridge University Hospitals NHS Foundation Trust 120% 100% 80% 60% 5 year net survival EPG 103.5% GPG 103.8% MPG1 102.7% EPG GPG MPG1 MPG2 PPG VPPG 40% MPG2 87.4% PPG 73.4% 20% VPPG 60.3% 0% 0 1 2 3 4 5 Survival in years
Local Recurrence following breast conserving surgery for invasive breast cancer. CBU 5-year LR = 1.13% 1.01 1.00 NPI Groups1-3.99.98.97.96.95.94 NPI groups 4-6 NPI Groups 1.00 1.00-censored.00.93 0 20 40 60 Time to local recurrence (months) 80 100.00-censored Ann R Coll Surg England 2010 Oct;92(7):562-8
Follow up NPI Groups 1-3 Mammographic FU only. Patient led follow up NPI Groups 4-6 Mammographic FU yearly clinic visit up to year 3 then discharge to patient led Follow up
Patient-Led Follow-Up PLFU Regular mammographic surveillance No routine clinical breast examination Written information Contact telephone number for specialist nurse Rapid access to clinic for specialist surgeon/oncologist/nurse Sep 2005 NPI <3.4; Sep 2007 NPI <4.4
Results of Audit PLFU Telephone Contact September 05 December 08 406 patients Telephone contact 49 patients Side effects medication/complimentary therapies New lumps/chest wall pain/seromas/lymph nodes Lymphoedema Vaginal bleeding Bony pain Plastic surgery referral request
Results of Audit PLFU Clinic Visits 32 patients attended clinic 20 making 1 clinic visit 5 making 2 clinic visits 5 making 3 clinic visits 1 making 5 clinic visits 1 making 7 clinic visits During the 3 year period a total of 1125 patient visits were saved, a reduction of 92.4% in clinical attendance for this group of patients
Results of Audit PLFU Letters of Referral from GPs 37 letters of referral from GPs 7 did not need to attend clinic 16 made 1 clinic visit 10 made 2 clinic visits 2 made 3 clinic visits
Results of PLFU New Breast Primaries 6 new Breast Primaries 2 found by patient 1 contralateral breast primary at 36 months 1 contralateral breast DCIS at 54 months 4 detected by screening contralateral DCIS at 12, 14, 23 months Invasive breast cancer at 37 months
Results of Audit PLFU Local/Systemic Recurrence 3 local/systemic recurrences 2 found by patient Lung metastasis at 1 month Chest wall recurrence in mastectomy scar at 39 months 1 referred by GP with liver/bony metastasis at 13 months
Results of Audit PLFU Deaths 4 deaths 1 cardiac 1 liver/bony metastasis from breast 2 unknown
Results of Audit PLFU Mammogram Attendance Wide Local excision annually for 5 years Mastectomy biennially for 5 years 312 patients had all mammograms 77 did not need mammograms Mammogram not yet due Bilateral mastectomies 2 had partial mammographic follow up 15 had no mammographic follow up
Number of patients seen per month in surgical follow-up clinic after introduction of PLFU 140 120 100 80 60 patients 40 20 0 S O N D J F M A M J J A S O N D
Summary 406 patients in 3 year study period 86 telephone consultations 93 clinic appointments 21.2% of patients required additional support or access to diagnostic services. 1125 clinic appointments avoided over 3 years Mammographic surveillance important modality Patients and GPs were able to access specialist help and advice easily and quickly without compromising patient safety
Conclusion Patient-led (reduced clinical) follow up is an effective and safe way to follow up patients with an excellent or good prognosis following completion of breast cancer treatment. The reduction in routine clinic appointments allows time to be spent with those patient who require additional support or to create extra clinic slots for new patients.
100% patients were satisfied/very satisfied with PLFU 97% had clear idea how to contact the unit Patients concerns 1. Additional psychological support 2. Advice about treatment side effects
Percent net survival Net survival* for breast cancer diagnosed 2004-2009 at Cambridge University Hospitals NHS Foundation Trust 120% 100% 80% 60% 40% 5 year net survival EPG 100.0% GPG 102.7% MPG1 99.3% EPG GPG MPG1 MPG2 PPG VPPG 20% MPG2 93.4% PPG 86.3% 0% VPPG 62.0% 1 2 3 4 5 Survival in years
PLFU- Audit 2 January 2009- December 2012 479 Further patients 406 original patients 125/479 patients contacted CBU 26% compared to 21.5% in the previous audit
PLFU- Audit -2 - Trials IMRT, Import High and Low Trials Yearly Follow up Radiographer Practitioner. Trial related only 53 patients
PLFU- Audit-2 MMG Attendance Failed to attend for any follow up MMGs 29/479 6% Audit cycle 2 15/406-3% Audit cycle 1
PLFU- Audit -2 MMG recalls Recurrences found on FU MMGs 1/ 479 audit cycle 2 4/406 audit cycle 1
PLFU- Audit 2 Deaths 9 deaths audit cycle 2 4 breast cancer related 4 unrelated to Breast Cancer 1 unknown 4 deaths audit cycle 1 1 breast cancer related 1 unrelated to breast cancer 2 unknown
PLFU recurrences PLFU audit cycle 2 2 new primaries 5 local/systemic PLFU audit cycle 1 6 new primaries 3 local/systemic
PLFU Audit 2 Misc 16/479 1.25% of patients returned to annual FU Small cohort unable to cope with out routine yearly outpatient visits Small cohort ended up having yearly visits to the new patient 2 week wait clinic with a new problem Small number with recurrences returned to yearly FU
PLFU- Investigations Routine yearly MMGs for 5 years. Organised at exit interview DEXA scan follow up for those on AIs
Setting up PLFU : Mammograms 1. Regular recall system in place for the full 5 years instigated at the exit interview 2. Method of sending results to GP and Patient
Resource pack Personal information file Treatment diary This file provides information about individual s condition and treatment Belongs to the patient.
Specialist nurse Contact numbers of CNS Key worker Explain Follow up Post-op surgical & RT changes Lymphoedema/Body image/sexuality Endocrine treatment
Patient comments; At the end of Radiotherapy it felt as though I dropped into a black hole. The arrangements for follow up could have been better explained. However, this session did provide a valuable opportunity to discuss what s next and specifically what things to look out for regarding getting my life back on track
Dietician Advice on Diet and Nutrition WCRF guidelines on functional foods Dairy, Soya, Complimentary and alternative diets Alcohol YES NO Not much
Physio Nicola Hopkins Why should breast cancer survivors exercise? Improvements seen in Reduced fatigue, tiredness Mood, anxiety, depression Weight control Overall Quality of life Bone health Reduced risk of relapse
Exercise for life DVD and booklet produced by Sarah Tunnicliffe www.cuh.org.uk/.../exercise_for_life_dvd_encourages_patients_to_keep_ active.html
Life Coaching- Sue Rae 6 sessions. 1:1. over 10 weeks 2 follow up sessions 1 & 3 months later Wed/Thurs afternoons in Breast Unit. Evaluation - HADDS questionnaire. - Patient written/oral feedback. Began Jan 2013. Currently 13 participants
PLFU : Parallel Help Wallace Cancer Centre- Maggie s Wallace Cambridge Cancer Help Centre at Scotsdales Garden Centre
To follow-up or not: that is the question NICE guidelines 2009 Follow-up has no effect on Detection of recurrence Overall survival Serious clinical events Follow-up may be in primary, secondary or tertiary care
PLFU What next? PLFU for all what ever the risk Patients in trials as per the trial protocol HOPE Macmillan self management course.