1. Generating Consensus Syndrome Case Definitions September 24-25, 2007 Pittsburgh, PA Hosted by Wendy Chapman and John DowlingFunded by ISDS

2. Objective Generate explicit consensus syndrome definitions based on current syndromic surveillance practice Respiratory Gastrointestinal Fever/Constitutional/ILI

3. Overview Purpose of meeting Baseline consensus syndromes Coming to Consensus Consensus Definitions Future goals

4. Clinical Condition experienced by a patient Complaint Classifier Syndrome CategoryClinical Condition Concept (Preprocess) Classify Cough (C00529) Headache (C00421) Respiratory Neurological Admission complaint “cough/headache”

5. Purpose of Meeting

6. Aim 1 Catalogue and characterize existing chief complaint classifiers and the syndromic categories they map to Aim 2 Develop consensus syndrome categories and definitions, using the catalogue of existing definitions as a starting point

7. Possible Uses for Standardized Consensus Syndromic Definitions Research Compare chief complaint classifiers against each other using standard definitions Generate a list of clinical conditions important for surveillance –Target for NLP systems to extract from reports Generate a standardized list of conditions that can be validated for predictive power Develop a set of chief complaints with standardized annotations for research and development Public Health Provide a catalogue of what real systems across the country are surveilling Provide a benchmark for comparing different syndrome definitions against each other –Examination –Research/validation studies

8. Consensus Syndrome Definitions

9. Generating Consensus Syndromes Compiled syndrome definitions from ten surveillance systems –Clinical conditions mapped to syndromes Counted how many times each condition occurred with each syndrome Removed conditions that did not meet inclusion criteria Discussed –which syndromes to include in reference –which clinical conditions comprise each syndrome Before the meeting

10. Characterize Currently Used Syndromic Definitions 1.Collated condition-syndrome maps for 10 syndromic surveillance systems –RODS –BioPortal (Arizona) –Seattle, King County –Biosense –NCDetect –Aegis (Harvard) –Essence –New York State –Boston Public Health Dept –New York City

11. 2.Created a union of all syndromes (Respiratory, GI, Fever/Constitutional/ILI, Neurological) Merged identical syndromes together System 1: Respiratory System 2: Respiratory, Upper Resp, Lower Resp System 3: Respiratory RespU RespL Resp

12. 18 unique syndromes

13. Conditions can be signs, symptoms, findings, or diagnoses Conditions should comprise a single problem –Cough—not cough/SOB Conditions should be those that a patient may present with at an acute care visit Conditions should be reasonably described in admit complaints Conditions should be directly related to the organ system Inclusion Criteria for Clinical Conditions

14. 3.Filtered and sorted clinical conditions indicating each syndrome From an initial list of 91 conditions CCC-EDS (Thompson) If anyone used condition Keep the condition in current list For additional conditions If condition did not exist in current list Add new condition OR Leave condition out Added:Bronchitis Influenza Chills Pleural effusion Why:Signs, symptoms not in CCC-EDS General diagnoses

15. 3.Filtered and sorted clinical conditions indicating each syndrome Created an initial list of 91 conditions CCC-EDS (Thompson) If anyone used condition Keep the condition in current list For additional conditions If condition did not exist in current list Add new condition OR Leave condition out Not Added:Crohn’s Disease Diverticulitis Pulmonary Infection Why:Specific diagnoses Broad bins

16. TitleRespU RespL Resp APNEA2 ASTHMA ATTACK21 BREATHING DIFFICULTY (DYSPNEA)21 BRUISE CARDIORESPIRATORY ARREST21 CHEST PAIN1 COUGH31 COUGHING UP BLOOD (HEMOPTYSIS)31 CROUP31

17. 59 of 91 CCC-EDS conditions were used 78 new conditions added 31 conditions considered synonyms (not added) 36 additional conditions not added 136 total conditions

18. 4.Counted frequency of each condition for each syndrome in combined list Maximum Frequency 10 – Respiratory cough, breathing difficulty, coughing up blood Number of Singletons 128

19. Coming to Consensus on Reference Syndrome Definitions

20. Pittsburgh Meeting September 24-25, 2007 18 participants –13 attended Set guidelines for syndrome definition generation –purpose for syndrome definitions Viewed baseline syndromes Argued about –Which syndromes to include –Which conditions to include

21. Participants Craig Hales Carol Sniegoski Karen Olson Jeremy Espino Cathy Larson Mikaela Keller Lori Hutwagner David Thompson Dennis Cochrane Marc Paladini Julia Gunn Atar Baer Bill Lober Matt Schoeler John Dowling Rebecca Noe Peter Elkin Wendy Chapman

22. Will we accomplish anything or just argue? Will one person be headstrong and not agree with the rest? Who are we to generate reference definitions? Will they like Pittsburgh? Am I overlooking anybody?

23. Syndrome Definition purpose To assist public health in monitoring, characterizing, detecting, and responding to changes in population health based on patients’ initial clinical presentation of acute outbreaks and exposures

24. What Syndromes Do People Use? Ten surveillance systems RespUpper Lower AsthmaCold 101121 Respiratory GIAbd PainBloody DiarrheaDiarrheaVomiting 91122 Gastrointestinal ConstFebrileILIFeverFluSepsis 44211 Constitutional NeurologicalMeningoencephalitisShock_coma 831 Neurological

25. Reference Syndrome Definitions Focused on three syndromes –Respiratory –GI –Constitutional/ILI Solution to many arguments –Create a sensitive and a specific syndrome Respiratory (sensitive, specific) GI (sensitive, specific) –Create two syndromes (similar to sens and spec) Constitutional ILI 6 consensus reference syndrome definitions

26. Respiratory Syndrome 48 conditions 2616 Sensitive Specific BREATHING DIFFICULTY 11 COUGH11 HEMOPTYSIS11 ASTHMA ATTACK11 CROUP11 PNEUMONIA11 WHEEZING11 RUNNY OR STUFFY NOSE10 PLEURITIC PAIN10 SORE THROAT10 URI10 … Clinical ConditionSensSpec

27. 25 conditions 63 Sensitive Specific Clinical ConditionSensSpec ABDOMINAL PAIN10 DIARRHEA11 VOMITING11 NAUSEA10 GASTROENTERITIS11 DEHYDRATION10 GI Syndrome

28. 32 conditions 12 Constitutional Syndrome IRRITABLE BABY FEVER WEAKNESS ANOREXIA VIRAL SYNDROME FAINTNESS MALAISE BODY ACHES GENERAL ILLNESS CHILLS LYMPHADENOPATHY SWEATING

29. 17 conditions 12 Influenza-like Illness Syndrome COUGH SORE THROAT FEVER WEAKNESS VIRAL SYNDROME BODY ACHES BRONCHIOLITIS PNEUMONIA UPPER RESPIRATORY INFECTION MALAISE CHILLS INFLUENZA

30. Reasons for Excluding a Condition Not specific to the organ system –Fever in Respiratory Not systemic –Headache in Constitutional Not specific enough to a disease of interest –Abdominal Pain in Specific Gastrointestinal Not the primary presentation of a significant illness –Earache in Specific Respiratory A related concept or synonym to another concept –LLQ  Abdominal pain

31. Future Goals

32. Future Post syndrome definitions on ISDS Wiki Add –Related concepts/synonyms –Localized textual variants –Linguistic variants Write paper on the meeting and on the definitions Begin collaborative research studies –Anyone want to collaborate? Generate repository of chief complaints –Generate annotations into syndrome definitions

33. Thank you ISDS