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Summary of progress Neurology Advisory Group Clinical utility

Summary of progress Neurology Advisory Group Clinical utility. Neurology Advisory Group WHO Raad Shakir Chair. . ICD-11 revision background. ICD 11 Revision Background. Neurosciences Topic Advisory Group

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Summary of progress Neurology Advisory Group Clinical utility

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  1. Summary of progress Neurology Advisory GroupClinical utility Neurology Advisory Group WHO Raad Shakir Chair

  2. . ICD-11 revision background ICD 11 Revision Background

  3. Neurosciences Topic Advisory Group 1.Donna Bergen, USA. 2. Pierre Bill, South Africa.3. Mandaville Gourie-Devi, India. 4. Marco Medina, Honduras. 5. Mohamad Mikati, Lebanon. 6. Hidehiro Mizusawa, Japan7. Raad Shakir , United Kingdom (Chair) Neurological NGOs:8. Murat Emre, Turkey. Alzheimer's Disease International9. Krister Kristensson, Sweden. International Brain Research Organization10. Marc Patterson, USA International Child Neurology Association11. Jes Olesen, Denmark International Headache Society12. Ettore Beghi, Italy International League Against Epilepsy13. Andreas Monsch, Switzerland. International Neuropsychological Society14. Kapil D Sethi, USA. Movement Disorders Society15. Alan J. Thompson, Director, UK. Multiple Sclerosis International Federation16. Marc Levivier, Switzerland. World Federation of Neurosurgical Societies17. Johan Aarli, Norway. World Federation of Neurology (WFN)18. Bo Norrving, Sweden. World Stroke Organization WHO SECRETARIATE 2009. 19. Tarun Dua, 20. Robert Jakob, 21. Geoffrey Reed, 22. Benedetto Saraceno,,23. Shekhar Saxena,24. Bedirhan Ustun, 25. Rosemary Westermeyer,

  4. UN Millennium Development Goals (MDGs)1-6 • Eradicate extreme poverty and hunger • Achieve universal primary education • Promote general equality and empower women • Reduce child mortality • Improve maternal health • Combat HIV/AIDS, malaria and other diseases 4

  5. NCDs are a wake-up call for non-health sectors NCDs are a development problem and threaten MDGs Policy lies at the root of the NCD crisis and its solutions Success against NCDs is possible Prevention is key Health system strengthening is essential and will have wider benefits The High-level Meeting on NCDs in September 2011 is a unique opportunity to raise the priority given to NCDs on the agendas of international leaders Noncommunicable Diseases = NCDsKey messages

  6. Noncommunicable Diseases = NCDs

  7. Other NCDs Diabetes Respiratory diseases Cancers Cardiovascular diseases Four types of NCDs account for most deaths in all regions 100% 80% 60% 40% 20% 0% WHO Region for Africa WHO Region for the Eastern Mediterranean WHO Region for the Americas WHO Region for Europe WHO Region for South-East Asia WHO Region for the Western Pacific

  8. What was achieved? Outcome of UN high-level meeting on the prevention of NCD New York 2011 ‘A rising Epidemic and its socio-economic and developmental impacts’ Item 13: ‘Note further that other NCDs such as mental health and neurological disorders, contribute also significantly to the global disease burden’

  9. ICD Revisions

  10. Overarching ICD-11 revision goals To produce a multi-purpose, coherent, international and multilingual classification Mortality, morbidity, primary care, clinical care, research, public health… Consistency and interoperability to enhance scientific comparability and communication across different uses, respectively To ensure that ICD-11 will seamlessly function in an electronic health records environment. Link ICD logically to underpinning terminologies and ontologies (e.g. SNOMED, GO, …) ICD Categories “defined” by "logical operational rules" on their associations and details

  11. “The ICD-11 Difference” Digital curation Ontology based Enhanced discussion & peer review TAGs serve as the editorial group Electronic copy  print version Work in multiple languages Planned field tests Based on Use Cases Internet-based permanent platform All year round Open to all people in a structured way Content experts focus

  12. Neurology TAG’s key responsibilities • To identify key areas for review (e.g., areas of controversy or rapid change; specific utility questions) • To match specific methods to questions, decide on strategies, marshal resources for necessary work • To identify broad and obvious structural changes that should be considered due to advances in scientific knowledge or changes in practice • To evaluate alternative or supplementary classifications in specific areas (e.g., developed by professional organizations) in terms of their objectives, structure, use, and implications for revision of ICD Chapter VI • To answer to specific uses and needs of particular users of ICD Chapter VI • To generate discussion on entities (diseases of the nervous system) outside Chapter VI

  13. ICD-10 Chapter VI block codes G0 Inflammatory diseases of the central nervous system (G00-G09) G1 Systemic atrophies primarily affecting the central nervous system (G10-G13) G2 Extrapyramidal and movement disorders (G20-G26) G3Other degenerative diseases of the nervous system (G30-G32) Demyelinating diseases of the central nervous system (G35-G37) G4 Episodic and paroxysmal disorders (G40-G47) G5 Nerve, nerve root and plexus disorders (G50-G59) G6 Polyneuropathies and other disorders of the peripheral nervous system (G60-G64) G7 Diseases of myoneural junction and muscle (G70-G73) G8 Cerebral palsy and other paralytic syndromes (G80-G83) G9 Other disorders of the nervous system (G90-G99)

  14. Linear structure • Infections of the nervous system • Movement disorders and other neurodegenerative disorders • Neurocognitive disorders • Demyelinating disorders • Epilepsy and seizures • Headache and related disorders • Root, plexus and peripheral nerve diseases • Motor neuron disorders • Neuromuscular junction and muscle disorders • Cerebrovascular diseases • Disorders of nervous system first recognized in infancy, childhood and adolescence • Nutritional and toxic disorders of the nervous system • Neoplasms of the nervous system • Traumatic injuries of the nervous system • Other disorders of the nervous system (autonomic nervous system/Disorders of consciousness /others)

  15. Neurology TAG Working Groups (WG)

  16. Major Issues in Linear Structure • Use of synonyms • Hierarchical organization by anatomical function or neurological dysfunction or clinical presentation • Addition of new disorders and new separation of disorders (e.g. prion disorders, FTD-ALS, new genetic syndromes) • Linearization and secondary parenting • Cross-referencing within and between chapters

  17. Update on Linear Structure • Phases: • Creation and Revision by Working Groups • Comments from WHO and Topic Advisory Group (TAG) • Final version from TAG • Entry into iCAT (online portal) • Linear structure received from most groups • Finalized: • Cerebrovascular diseases • Epilepsy and seizures • Headache and related disorders • Movement Disorders and neurodegenerative disorders • Neuromuscular junction and muscle disorders • Motor neuron disease and related disorders • Root, plexus and peripheral nerve diseases • Prion disorders (located within the section "other disorders of the nervous system)

  18. Content Models • Short definition, signs & symptoms, investigative findings +/- synonyms • Not including diagnostic criteria, as is seen in the mental health chapter • Definitions are concise (<100 words) and are meant to be diagnostically useful, more than just coding information • Asymmetry inherent: common and uncommon, complex and easy-to-diagnose diseases will both get <100 words in definition • Focusing first up to four digit level

  19. Content Model - Rationale • ICD-11 Content Model indicates telescoping structure from broader, less detailed categories to finest diagnostic distinctions • Different elements of content can be extracted for different presentations • Primary care, specialist, research versions would represent different ‘views’ of same source material

  20. Neurology content model

  21. Field Studies Reliability, Validity and Clinical utility of proposed changes: • Organization of categories • Categories included for different levels of use • Feasibility of criteria at different levels • Definition and description of disease entities • Primary care usage

  22. Utility for whom? Advanced Market commitments

  23. Cross-Working Group Collaborations Diseases found in multiple sections with some degree of overlap: -Infectious diseases of the nervous system, particularly peripheral nervous system -Toxic diseases of the nervous system -Disorders arising primarily in childhood -Sequelae of cerebrovascular disease -Unclear placement of sequelae of neurological infections, e.g. post-polio syndrome, post-viral parkinsonism. Currently all outside the infections of the nervous system section.

  24. Cross Specialities Issues Major: Stroke resolved Trauma of the nervous system ongoing Dementia ongoing Infections partly resolved Neoplasm ongoing Minor: Ophthalmology Paediatrics Rare diseases eg Prion diseases resolved

  25. Terminology • “Organic”? • Cognitive? • Mild cognitive impairment • Dementia?

  26. Dementia: Issues How to deal with etiology? Dementia as a syndrome and then describe the etiological classification Need for additional sub-types of dementia (e.g. Lewy Body Disease, Fronto-temporal Dementia, Dementia associated with HIV etc…..) HOW MANY? Renaming e.g. CJD as dementia associated with Prion disease. Early vs late onset distinction? – AD or also other dementias? To capture the severity? Describe mild/moderate/severe dementia Definition of dementia needs to be revisited – cognitive domains

  27. ICD 11 CLINICAL UTILIZATION APPEALLING LOGICAL CLINICALLY RELEVANT HELPFUL DIAGNOSTIC CRITERIA CONFIRMATION OF DIAGNOSIS FULLY PAPERLESS COMPATIBILITY FLEXIBLE AND EVOLUTIONARY

  28. 4. Hydrocephalus To replace G91,G94. Definition: Impairment of flow dynamics leading to an excess volume of CSF. This can be obstructive ‘non-communicating’, when the obstruction to flow is within the ventricular system or non-obstructive ‘communicating’, when the flow is impaired in the extra-ventricular CSF pathways

  29. Who does the coding and does it matter? Yes Thinking about the diagnosis Fulfilling definitions Changing diagnosis if found incorrect Better patient care More… No Changing habits? Why as long as UK doctors are paid a set salary? More …

  30. ICD11 αlpha http://www.who.int/classifications/icd/revision • ICD-11 alpha draft is INCOMPLETE • updated on a daily basis • NOT TO BE USED for CODING at this stage • not yet been approved by the TAGs, RSG or WHO • Alpha – Browser & Print 10 look & feel + descriptions – code structure ! 33

  31. Participation of Interested Stakeholders • Using a “Collaborative Authoring Tool” • WHO aims to engage all experts and stakeholders to • Make comments • Make proposals • Take part in Field Trials • Engage in translations – multilingual representation • use it in special projects

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