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Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO by Erik Wendel, Danish Cystic Fibrosis Association Hamburg.

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Presentation on theme: "Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO by Erik Wendel, Danish Cystic Fibrosis Association Hamburg."— Presentation transcript:

1 Transparency: Should CF-care centers ”open their books” and publish treatment outcomes? PRO by Erik Wendel, Danish Cystic Fibrosis Association Hamburg Cystic Fibrosis Europe Symposium

2 Ref. Jim Littlewood, CF Trust, UK

3 A tool for doctors: Obtain information to keep on record Evaluate treatment result Make new, or change present treatment methods/strategies Pass information to others Pass ways of good practice to other – avoid pitfalls Setting treatment goals Transparency Stand up for what You do, and what You belive in A tool for patients: Quality improvement Access to information about other treatment strategies Quicker access to new/other treatments Why Data Collection and Publishing

4 Ref. Michael P. Boyle, NACFC 2007

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9 Open data must come with open CF Care Center treatment standards (What they do, how they do it )

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11 The US have opened the data door EU and US doctors have agreed on methods, data collection and what to publish Europe will have to follow with open data too Patient organisation can speed up this process We have passed the Point of No Return Open data - Where are we

12 450 patients 2 CF Care Centers Rigshospitalet (RH - East Denmark) established pts (100 children, 200 adults) Registration of patient data since 1967 Skejby (SKS - West Denmark) established 1990 App. 150 pts, (80 children, 70 adults) No official registration before 2000 Year 2001: Danish Registry (RH + SKS) Year 2007: Published data - Country vs. Center Why Open Data - The Danish Story

13 __________________________________________________________________________________________________ Year Age ave. Age spread __________________________________________________________________________________________________ 2006 (19 patients) 28,21 yrs yrs 2005 (9 patients) 26,44 ysr yrs 2004 (4 patients) 18,50 yrs yrs 2003 (6 patients) 34,50 yrs yrs 2002 (9 patients) 24,33 yrs yrs 2001 (8 patients) 30,38 yrs yrs 2000 (9 patients) 23,44 yrs yrs __________________________________________________________________________________________________ 64 patients Age at death with out transplantation Age at transplantation CFF 2007 Danish patients death/TX

14 2006 SexCenterBornTX† -TXAge∆ SKS∆ RHNotes 1MSKS1972TX 34 2MSKS1973TX 33 3KSKS1973TX 33 4MSKS1978TX 28 5MSKS1978TX 28 6KSKS1979 †27 7KSKS1981TX 25 8KSKS1981TX 25 9KSKS1983 †23 10KSKS1985TX 21 11MSKS1985 †21 12KSKS1986TX 20 13KSKS1991 †15 25,61 13/150 = 8,67% 1MRH1968TX 38 2MRH1971TX 35 3MRH1972TX 34 4KRH1972TX 34 5MRH1974 †32 6MRH1976TX 30 33,836/300 = 2% 7MRH1987 †19 Car accident 2005 SexCenterBornTX† -TXAge ∆ SKS ∆ RHNotes 1KSKS1964TX 41 2KSKS1973 †32 3KSKS1980 †25 4MSKS1983TX 22 5MSKS1985TX 20 6KSKS1994 †11 25,17 6/150=4% 1MRH1963TX 42 2KRH1979TX 26 3KRH1986TX 19 29,003/300=1%

15 Investigation of more detailed data needed Why Open Data - The Danish Story

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17 Copenhagen (east) vs Skejby (vest) Z-score BMI, children born after , patients del508 homozygotes

18 Copenhagen (east) vs Skejby (vest) Lung function FEV1 of predicted, children born after , patients del508 homozygotes

19 Data are not different Data are different DK Reactions to 2005 Data Outcomes

20 Stage 1: The data are wrong Stage 2 The data are right, but it’s not a problem Stage 3 The data are right; It is a problem; But it’s NOT my problem Stage 4 I accept the burden of improvement Typical reactions to Data Outcomes

21 What data to go for? Overall data on FEV1 and BMI, children and adults, is a good start. BUT most CF patients die from chronic lung infection with Pseudomonas, Burkholderia, Achromobacter etc. THEREFORE data on how our CF Care Centres handle and treat these infections, and the clinical output they get, IS IMPORTANT AND URGENT FOR PATIENTS

22 NACFConference 2008

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24 Christine Rønne Hansen, 2009

25 Christine Rønne Hansen, 2010

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27 Factors which affect the outcome of CF CF mutations + ’modifier genes’. - all mutations demand treament when lung infection is present Lung infection (main cause of death in CF) - Infection type (pseudomonas, burkholderia, achromobacter etc.) - Treatment - Age when infection debut - Individuel reaction to infection (immunrespons) - Individuel reaction to treatment (allergy) - Not possible to predict individual treatment effect or output The individual approch – Living with CF - Acceptance - Understand CF as a disease and it’s development - Capabillty of action Social factors - country vs city (zip codes), education, family situation

28 PRO - Take Home Messages Most patients do not wish to change CF Care Center. Patients just want their doctors to give them access to the treatments with best clinical output. For patients, it’s not important by whom a treatment has been developed, as long as it works. Open data and open treatment standards bring the ’best treatments’ to patients faster. Open data and open treatment standards may expose the practice of some doctors. It may hurt doctors egos and personal feelings, BUT - The patients always come first. We pay the ultimate price for bad choices - with our lives.


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