©2007 World Heart Federation … Updated October 2008 Diagnosis and Management of Acute Rheumatic Fever and Rheumatic Heart Disease

©2007 World Heart Federation … Updated October 2008 Notification of ARF & RHD and Data Management

©2007 World Heart Federation … Updated October 2008 This presentation is intended to support the Curriculum for training health workers and others involved in the diagnosis and management of acute rheumatic fever and rheumatic heart disease. It has been made possible thanks to the support of the Vodafone Group Foundation and the International Solidarity, State of Geneva, and the ongoing support of Menzies School of Health Research, Caritas Australia, Fiji Water Foundation, Cure Kids and Accor Hospitality.

©2007 World Heart Federation … Updated October 2008 Elements of a Disease Register A disease register is a list of people who have a common illness or disease. For example: –Tuberculosis register –HIV/AIDS register –Vaccine-preventable diseases register (measles, rubella) –Acute Rheumatic Fever & Rheumatic Heart Disease A disease register should be secure so that the information is not lost or damaged A disease register can be a computer database or a paper list

©2007 World Heart Federation … Updated October 2008 Paper Register – Book or List Paper registers may contain information for a local health facility, or may provide information to a larger, central computer register. Possible Problems –Books may get lost or damaged (not safe) –The same people may be included more than once (duplicates) –Long lists be difficult to read and analyse –Important information may be missing Benefits –No specialised training required –Books and lists can be transported easily –External support is not required (e.g. electricity as for computers)

©2007 World Heart Federation … Updated October 2008 Computer Register – Database A computer registers is called a database. A database is able to record specific information for many people. Possible Problems –Computers and connections usually cost money –Specialised training and support are usually required –Electricity and other interruptions cause barriers to use –The information may not be easily transportable Benefits –The information can be secured (safe) –Duplicate entries can be avoided –Information can be searched, sorted and updated quickly –Reports can be produced automatically

©2007 World Heart Federation … Updated October 2008 Information on the Register Information to identify each person (clinic or hospital number) Personal information (name, date of birth, gender, contact details) Current disease status (ARF only, or mild, moderate, severe RHD) Diagnoses, date of diagnoses How the diagnosis was made (hospital admission, screening programme) Secondary prophylaxis details (medication, amount received each year) Surgery details Dates for next medical review (or for heart valve surgery) Date and cause of death.

©2007 World Heart Federation … Updated October 2008 Notification of ARF and RHD All people who have confirmed and suspected ARF and RHD should be notified to the RHD register so that health authorities can undertake the following: –Identify high risk individuals who require priority care –Coordinate secondary prophylaxis and follow-up programmes –Help identify others who may be at risk –Provide information on the local rates of disease

©2007 World Heart Federation … Updated October 2008 Sources of Information The following sources may contain information on individuals for the RHD Register Benzathine Penicillin injection books Echocardiogram reports Heart valve surgery lists Notes from Medical Specialists, Heart Specialists, dentists and researchers Hospital admission and discharge records (e.g. ICD-9 or ICD-10 coding) School and community screening referrals

©2007 World Heart Federation … Updated October 2008 Reports from the Register Lists of individuals needing urgent care Lists of people receiving inadequate levels of secondary prophylaxis Delivery of Benzathine penicillin injections (for each full year on treatment) Specialist clinic lists Echocardiogram and Surgery waiting lists People who are deceased and cause of death Rates of disease for the region or country

©2007 World Heart Federation … Updated October 2008 Summary A Disease Register can be on paper or computer The information should be confidential and secure The information on the register should –Help coordinate health care for individuals –Help describe the level of disease in the community All confirmed and suspected cases of ARF and RHD should be notified to the register Sources of information for the register may include –Benzathine penicillin injection books –Echocardiogram reports and surgery lists –Hospital admission books and computer systems –School screening referrals