Patients and Doctors: Bridging the Divide

Transcription

1 Patients and Doctors: Bridging the Divide Thomas Ullman, M.D. Director, Center for IBD The Mount Sinai IBD Center Chair, Professional Education, CCFA

2 What we d like to avoid....

3 Differing Points of View: Overview Cause of PSC/IBD Prescription Medicines Alternative Medicines Diet Internet and Information about PSC/IBD

4 Epidemiology Of Crohn s Disease Temporal Trends In Crohn s Disease, Olmsted County, Adjusted Incidence Per 100,000 Person-Years Male Female Total Year Of Diagnosis Prevalence: cases per 100, ~ ,000 cases in US 3 1. Ingle et al. Gastroenterology. 2007;132(4 Suppl 2):A Presented at Digestive Disease Week; May 19-24, # Bernstein et al. Am J Gastroenterol. 2006;101: Loftus. Gastroenterology. 2004;126:

5 Etiologic Theories in Inflammatory Bowel Disease Genetic Predisposition IBD Mucosal Immune System (Immuno-regulatory Defect) Environmental Triggers (Lumenal Bacteria, Infection)

6 NOD2 and Intra- Cellular Bacteria CD14 LPS MD2 TLR-4 CARD CARD NOD2 PGN LRR MyD88 IRAK RICK/Rip2 NIK TRAF6 ECSIT IKK Smallest unit of PGN muramyl dipeptide IκB NF-κB NF-κB Pro-inflammatory gene expression

7 Key Inflammatory Mediators in Crohn s Disease Antigen APC cell Activated macrophage TNF-α APC cell IL-12 IFN-γ CD4 T cell Activated T cell Th1 cell TNF-α

8 Lumenal Bacteria Stimulate Immune-Mediated Colitis No Bacteria No Immune Activation No Colitis Mice Bacteria IL-2 - / - IL-10 - / - TCRα - / - CD 3 E 26 TG SAMP1/yit DSS CD 45 RB hi SCID Rats B 27 /β2m TG Indomethacin Guinea pigs Carrageenan IL-1β TNFα TNFα IFNγ Colitis TH 1

9 Cause of PSC and IBD: Patient Perspective Bad genes (my parents; will I give it to my children?) Environment (bad food) Environment (medicine, tobacco) Don t Much Care

10 Don t really know Common Ground We re both here to get patients better

11 Differing Points of View: Overview Cause of PSC/IBD Prescription Medicines Alternative Medicines Diet Internet and Information about PSC/IBD

12 Step-up vs Top-down Approach Step-up approach Biologics (TNF Antagonists) Immunosuppressives Corticosteroids Top-down approach 5-Aminosalicylates and Antibiotics

13 Long-term Maintenance of Remission in CD Week Infliximab 5 mg/kg (ACCENT I) Adalimumab 40 mg EOW (CHARM) Certolizumab 400 mg 4-weekly (PRECiSE 2) Placebo Percent of Patients N = 113 N = 172 N = 215 Remission (CDAI<150) Hanauer et al. Lancet. 2002;359:1541. Colombel JF, et al. Gastroenterology. 2007;132(1): Schreiber S, et al. Presented at UEGW 2005.

14 But is it safe?

15 Paths Meet Keeping one another informed of latest progress Open-mindedness of weighing benefits and risks Hippocratic Oath to do no harm vs. giving something a shot because it might work Individualize Clinical trials....

16 Differing Points of View: Overview Cause of PSC/IBD Prescription Medicines Alternative Medicines Diet Internet and Information about PSC/IBD

17 CAM: Physician s Perspective If it hasn t been subjected to a doubleblind, placebo-controlled, double-dummy randomized trial with concealed allotment, then I m not interested. It s too soon to tell

18 But is it safe?

19 CAM s: Patients Perspective Natural and safe Probiotics Prebiotics Herbal medications Vitamins Acupuncture Supplements Yoga Other....

20 Paths Meet Keeping one another informed of latest progress Open-mindedness Hippocratic oath to do no harm vs. giving something a shot because it might work Clinical trials....

21 Overview Cause of PSC/IBD Prescription Medicines Alternative Medicines Diet Internet and Information about PSC/IBD

22 Diet in IBD: Physician s Perspective It s about the plumbing Avoidance of uncooked fruits and vegetables in patients with stricturing disease Liquid diet with partial obstruction General principles of micronutrient absorption I dunno Impossibility of dietary trials It s too soon to tell

23 Diet: Patient Perspective Near primary or primary importance Something to take control of Success with manipulation Specific Carbohydrate Diet (SCD)

24 Overview Cause of PSC/IBD Prescription Medicines Alternative Medicines Diet Internet and Information about PSC/IBD

25 Avail 1996 Avail 2004

26 On the fly data. Unpublished Italian study found that taking lithium seemed to slow progression of ALS. 34 patients from the website solicited lithium Rx from their doctors and started taking it. Up to 109 members now. And now track their progress with the data tools on the website. Is this good for people for whom the pace of traditional science is too slow to help them? Even it s half true, it s still groundbreaking. I don t want to wait for something else. I don t have time to wait.

27 NOPE Physician Advocacy of the Internet? Only 4% of patients were ever advised by a physician to get medical information from the Web (JAMA Conner Oct 18, 2000) Only 39% of physicians see the internet as a valuable health information resource for consumers (Reents et al Neither the growth in patient use of the Web as an information resource nor a significant volume of web content is being driven by physicians

28 One Physician s Practical pscpartners.org Approach ccfa.org site has spot on information crohnsandme.com web site also Discuss findings on the web with physician before changing approach to therapy Grain of salt for everything on the web (especially chat rooms)

29 Thank you