Frede Olesen
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1 , Professor, MD, DrMedSc, FRCGP (hon.) The Research Unit for General Practice Aarhus University, Denmark Former chairman for the Danish Cancer Society
2 2004: Due time suspicion of cancer = the patient must wait for service from NHS A large number of supportive letters from doctors and lay people - this is a national problem, that must be dealt with
3 Milestones in early diagnosis - the Aarhus statement Total interval Patient interval Doctor interval System interval Primary care interval Secondary care interval Diagnostic interval Treatment interval First symptom First presentation / clinical appearance First investigation, primary care responsible for the patient First referral to secondary care/transfer of responsibility First specialist visit Diagnosis Treatment start Source: Weller D et al. The Aarhus statement: improving design and reporting of studies on early cancer diagnosis. BJC 2012;106:1262 7
4 The 3 cancer plans in Denmark National Cancer Plan I: Hospitals/medicine Radiotherapy equipment 2-week waiting time guarantee from diagnosis to treatment National Cancer Plan II: Hospitals/medicine Screening Case management Fast track referral Palliative treatment Cancer Patient Pathways (CPPs) National Cancer Plan III: Hospitals/medicine Screening Diagnostic centres Health education and promotion National training programme for GPs on diagnosing cancer Public Cancer Awareness campaign Policies: Research: Comparison of Nordic cancer registries Studies quantifying delay among Danish cancer patients Studies exploring reasons for and impact of delay New comparison of Nordic cancer registries Tørring ML. The Danish National Board of Health 200, 2005, 2010; Olesen 2009; Vrangbæk 2010; Søgaard 2011
5 The diagnostic process >15% of adults have alarm symptoms every year The ocean of symptoms And ALL the other symptoms In 6% of consultations, the GP suspects serious disease incl. cancer (1-2 per day) Attend the doctor 50% referred, primarily to imaging 50% wait and see Referred to secondary care 5% have cancer (1 per month) Cancer
6 Lung cancer - delay in primary care Delay in primary health care Delay in days Delay in primary health care 25% 50% 75% Delay in days % 50% 75% Patients Patients False negative x-ray Weak and unspecific symptoms Marianne Bjerager. phd afhandling Forskningsenheden for Almen Praksis, Aarhus Universitet, Delay in diagnosis and treatment of lung cancer
7 Time from first symptom until treatment Olesen, Hansen, Vedsted. British Journal of Cancer. 2009;101:S5 S8. - Hansen, Vedsted, Olesen et al. BMC Health Serv Res. 2011;11:284.
8 Total interval broken up - Olesen, Hansen, Vedsted. British Journal of Cancer. 2009;101:S5 S8. - Hansen, Vedsted, Olesen et al. BMC Health Serv Res. 2011;11:284.
9 Total delay (mean) Patient, Fordeling doctor af and patient, system læge delay og system in a cohort delay - Only 50% present with obvious signs of cancer Alarm 49,7% 49.7% Almen 23.9% Ukarakteristisk 26.4% Lægens svar vedr. symptomtolkning General 23,9 % Non char. symptoms 26,4% Patientdelay Systemdelay Prim System delay prim. c. GP Lægedelay Systemdelay Sec System delay sec. c.
10 Positive predictive value of alarm symtoms in GP - a GP must investigate or refer between 13 and 50 patients to find one cancer in patients with alarm symptoms Blood in the urine Difficulty in swallowing Blood in sputum Men Women N Cancer PPV 3 year Cancer PPV 3year ,4% 162 3,4% ,7% 81 2,4% ,5% 81 4,3% Blood in stools ,4% 154 2,0% Jones R et al. BMJ 2007;334;1040
11 Adverse effect of the gatekeeper system? - Gatekeeper systems: the systems with long waits and often double gatekeeping with poor access to diagnostic services (scans, endoscopies and diagnostic imaging) Relative one-year survival (%) Countries Median (%) p-value Gatekeeper No Yes List system No Yes First point of contact Always Depends No Vedsted P, Olesen F. Are the serious problems in cancer survival partly rooted in gatekeeper principles? BJGP 2011
12 E.g. Presenting symptoms in 1900 consecutive newly diagnosed cancer patients Nielsen, Hansen, Vedsted. Ugeskr Læger. 2010;172:
13 Delay in the diagnostic process increases mortality - or the story about flaws in previous analytical thinking Thesis Marie Louise Tørring 13
14 Total delay (mean) Patient, Fordeling doctor af and patient, system læge delay og system in a cohort delay - Only 50% present with obvious signs of cancer Alarm 49,7% 49.7% Almen 23.9% Ukarakteristisk 26.4% Lægens svar vedr. symptomtolkning General 23,9 % Non char. symptoms 26,4% Patientdelay Systemdelay Prim System delay prim. c. GP Lægedelay Systemdelay Sec System delay sec. c.
15 The GPs see three types of symptoms! Symptom type % of cancer patients Alarm symptom 50 Serious, non-specific 20 Common 30 Jensen H, et al. BMC Cancer 2014;14:636 Nielsen T, el al. Ugeskr Læger. 2010;172:
16 Waits are unacceptable: Cancer as an acute disease the 3-point strategy from the Danish Cancer Society : Improved acces to relevant diagnostic investigations without waits when required by the front line GPs (What we now tends to call the yes/no concept) Reduce double gatekeeping 2: Diagnostic centres at all major hospitals Multidisciplinary acute assessment by specialists without waits A patient can be referred by the GP with the diagnosis: I suspect serious disease, but I do not know which disease cancer is a possibility. Please help my patient 3: Fast track clinical pathways when a specific cancer is considered The fast track packages have been developed by multidisciplinary cancer groups in a process led by the National Board of Health Regional multidisciplinary cancer groups implement the strategy FROM 2007 MASSIVE POLITICAL AND MANAGERIAL FOCUS ON CANCER AS AN ACUTE DISEASE
17 The diagnostic centre
18 But what about the simple problem..?
19 Symptoms in general practice a continuum Trivial Low-but-not-no-risk Serious Refer Green: Managed in practice perhaps a follow-up Red: Refer to relevant investigation! Grey: Is it something? Should/can I refer? Serious yes or no?
20 Change the GPs or change the system? Increase the GPs awareness Educate GPs in how to use the system correctly Develop indicators of GP performance But what if it is the health system that is functioning poorly?
21 GP and hospitals collaboration on diagnosis The 3-legged strategy a ship with 3 masts
22 Where are we now The fast track with diagnostic packages are working (well?) The concept with diagnostic centres are implemented in all regions and is about to be understood by clinicians and administrators they develop in two directions: a clean diagnostic center for the difficult diagnosis a two legged centre: the difficult the yes/no approach Government now go for improved yes/no access to hospital investigations from GP incl. technology improvement.
23 What is the yes/no concept? Trivial Low-but-not-no-risk Serious Refer When a GP has a grey patient: he needs a short answer should I think of serious disease. Yes or no The tool to give the answer is often a simple investigation. The government demands that hospitals give GPs easy and quick access to these investigations without waits the hospital as a diagnostic service provider to GP s patients
24 Direct access to investigations Implemented as No-Yes-Clinics (NYC) GPs have direct access to expedited investigations Ultrasonic investigation of abdomen, pelvis, CT, endoscopy etc. The GP is fully responsible No record, history taking etc. at clinic only a No or a Yes!
25 The Danish (and British?) mistake We believed far too much in screening max 10-15% of all cancers We believed too much in a fast track approach We started with a cancer diagnosis and not a symptom in our thinking it is changing within the last year We did not know the waiting time paradox and its explanations We did not listen to GPs and the way they meet patients We started implementation of the 3 legged strategy with fast tracks for a suspected cancer we should have started with yes/no It took long time before diagnostic centres were understood We are about to understand the yes/no concept
26 Increase in 1-year relative survival for WOMEN All cancers except skin and breast Engholm G, et al. Danish Cancer Society. Unpublished
27 Increase in 1-year relative survival for MEN All cancers except skin and prostate Engholm G, et al. Danish Cancer Society. Unpublished
28 This summer a new government. - and the election campain had health care as a main componenet - a patient has the right to have a complete diagnostic work up within 30 days - a patient with a diagnosis has the right to be treated within 30 days - we need a 4th cancer plan to ensure that we can cope with demand
29 The cancer-journey - The Ca-Pri vision for a research agenda and for a good life after cancer Dying Terminal Support of relatives Recurrence of disease Rehabilitation Treatment Final diagnostics Primary diagnostics incl. waiting times Which symptoms are predictive of what? Perceived symptoms, iatrogenic threshold Screening Life style, health promotion, primary prevention Crisis Need for GP
30 Waits are unacceptable: Cancer as an acute disease the 3-point strategy from the Danish Cancer Society : Improved acces to relevant diagnostic investigations without waits when required by the front line GPs (What we now tends to call the yes/no concept) Reduce double gatekeeping 2: Diagnostic centres at all major hospitals Multidisciplinary acute assessment by specialists without waits A patient can be referred by the GP with the diagnosis: I suspect serious disease, but I do not know which disease cancer is a possibility. Please help my patient 3: Fast track clinical pathways when a specific cancer is considered The fast track packages have been developed by multidisciplinary cancer groups in a process led by the National Board of Health Regional multidisciplinary cancer groups implement the strategy FROM 2007 MASSIVE POLITICAL AND MANAGERIAL FOCUS ON CANCER AS AN ACUTE DISEASE
31 Center for Research in Cancer Diagnosis in Primary Care CaP The head of a research driven proces with a changed understanding of the diagnosis of cancer in GP
32
Frede Olesen. Frede Olesen
Professor, DrMedSc, GP, FRCGP(hon.) The Research Unit for General Practice, Aarhus University Chairman of the board of The Danish Cancer Society FO@alm.au.dk Denmark - City of Aarhus How to get be)er
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