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Measuring cause specific mortality: the use of verbal autopsies Alan Lopez Chalapati Rao Uses of cause of death data • To study and explain levels, trends and differentials in age specific mortality (Preston and disciples) • To guide priorities for resource allocation for intervention programs, biomedical and sociomedical research • To monitor public health programs • To provide clues for epidemiological research Sources of national cause-specific mortality data – vital registration systems – GOLD STANDARD – sample registration systems – household surveys – population laboratories and surveillance systems – epidemiological estimates • For deaths registered in these systems, cause of death is either – certified by a medical practitioner – based on "verbal autopsies" – not given at all VR: Data availability, around 2000 Useable data Complete enumeration Total countries in region Africa 4 1 46 The Americas 32 14 35 Eastern Mediterranean 7 4 22 Europe 47 39 51 South-East Asia 4 0 11 Western Pacific 21 8 27 World 115 66 192 WHO Region Data quality Quality Criterion used Countries High ICD 9 or 10 coding, and completeness >90% and illdefined codes <10% Australia, Bahamas*, Canada, Chile*, Cuba, Estonia, Finland, Hungary, Iceland*, Ireland, Japan, Latvia, Lithuania, Malta, Mexico, New Zealand, Republic of Moldova, Romania, Russian Federation, Saint Vincent and the Grenadines*, Singapore, Slovakia, Ukraine, United Kingdom, United States of America, Uzbekistan, Venezuela Medium Completeness 70-90% OR ill-defined codes 10-20% OR non-ICD codes used Antigua and Barbuda*, Austria, Azerbaijan, Barbados*, Belarus, Belgium*, Belize*, Brazil, Brunei Darussalam, Bulgaria, Colombia*, Cook Islands, Costa Rica, Croatia, Czech Republic, Denmark*, El Salvador*, France*, Georgia, Germany, Grenada*, Guyana*, Israel*, Italy, Kazakhstan, Kuwait, Kyrgyzstan, Luxembourg, Mauritius, Mongolia, Netherlands, Niue, Norway, Panama, Philippines*, Republic of Korea, Saint Kitts and Nevis*, Saint Lucia*, Seychelles, Slovenia, Spain, Sweden, Switzerland*, The former Yugoslav Republic of Macedonia, Trinidad and Tobago*, Turkmenistan*, Uruguay Low Completeness < 70% OR illdefined codes > 20% Albania, Argentina, Armenia, Bahrain, Bosnia and Herzegovina*, Cyprus*, Dominica*, Dominican Republic*, Ecuador, Egypt, Fiji, Greece*, Iran, Jamaica*, Kiribati, Nicaragua, Paraguay, Peru, Poland, Portugal, Qatar, San Marino, Serbia and Montenegro, South Africa*, Sri Lanka*, Suriname*, Syrian Arab Republic, Tajikistan*, Thailand, Tonga*, Tuvalu Strategies to improve COD data availability • Accelerate development of civil registration – SLOW, EXPENSIVE, LOW GOVERNMENT PRIORITY • Introduce / improve physician certification, ICD coding, and statistical processing of data – CRITICAL, NEEDS BIG ‘WHO’ PUSH, NO CHAMPIONS – • Introduce and develop local applications of verbal autopsy procedures for data acquisition through • vital registration • sample registration • demographic surveillance systems • household surveys What is VA ? • VERBAL AUTOPSY (VA), a two step procedure – Data collection : interview of bereaved relatives to collect information on symptoms experienced by deceased before death, using some form of survey instrument – COD assignment : methods include – physician review of VA data – ICD certification, coding, and tabulation – computerised algorithms for population fractions Principles of VA • Based on recall by relatives of symptoms \ illness prior to death, sometimes difficult for adult deaths (similar symptoms) • Requires identification of clearly distinguishable symptom complexes for each cause of interest, not available for some adult causes – lung cancer, TB, diabetes, different forms of liver disease etc • So far, found useful and validated for infant and maternal deaths; deaths due to injuries • Recent experiences suggest utility of gathering information from medical documents if available within household Historical use of VA • Measuring cause specific mortality in populations – SCDR / SRS - India – DSP / VR – China – AMMP (Tanzania) • Investigating COD in specific age-sex cause groups – infant / child deaths – maternal causes of death – Injury related deaths • Investigating outbreaks / epidemics – Ebola fever epidemic in West Africa – Diarrhoeal disease in Bangladesh Historical use (contd) • Assessing coverage and effectiveness of disease specific interventions – insecticide impregnated bed nets in Africa – Pneumococcal vaccine trials in Bohol – Home based neonatal care in India • In developed countries – confidential enquiries of maternal mortality – Sudden infant death syndrome – QOL / mental health status in terminal illness among elderly VA in India •Survey of causes of death – rural (SCDR) 1967 – 1998 (1400 PHCs, rep) •Structured instrument, lay assignment of cause, ICD classification since 1996 •problems with incomplete coverage, inadequate investigator training / physician verification of cause •New system being implemented in SRS, covering 8 million •New instruments, field protocols, training support •Five year retrospective survey planned soon •independent field studies by Ind C Med Res in 5 zones, 1 million pop each •Need for integrated approach, involving civil registration systems SCDR Results Leading causes of death, 1996-1998 and GBD 2000 estimates for India 1996 Year 1997 1998 GBD 2000 Ill defined causes 20.6 19 18.4 0 Respiratory (incl TB) 17.8 16.4 17.2 15 Infectious (excl TB) 14.8 13.1 12 16 Cardiovascular (excl stroke) 10.2 12.1 12.5 19 External causes 8.4 8.9 9.6 10.3 Perinatal 7.9 8.7 7.9 8 Neuropsych (incl stroke) 6.2 6.5 6.6 6.6 Cancers 3.6 4.3 4.3 6.9 Anaemia 3.4 3.2 3.3 0.4 Digestive 2 2.1 2.1 3.3 Endocrine 1.2 1.1 1.2 1 Other causes 3.9 4.6 4.9 13.5 Total 100 100 100 100 43168 44409 40351 10109157 Cause group Deaths VA in China • Two mortality statistics systems – NMS, DSP • NMS (VR) – medical certification (urban) / lay reporting (rural) 120 m pop • DSP –– 1981, now 145 points, nationally representative, 10 m pop • medical certification / VA for household deaths (80%) • Semi structured instrument, physician COD assignment, ICD classification since 1987 • Household visit by township hospital staff • Much reliance on free text response to ‘ What was the cause of death in this person?’ • Use of supportive medical documentation available at home / from hospital records • Needs to be tested for reliability, and if possible, validity • Research projects underway (UQ, Harvard) DSP Results 5q0 DSP 17.3 45q15 Males 45q15 Females 122 75 GBD 2000 Leading causes of death in 2000 Cause DSP 2000 GBD 2000 Stroke 18.7 17.7 COPD 12.9 13.7 8.2 2.6 6.3 7.5 Other cardiac diseases IHD Ill-defined diseases 5.0 Trachea, bronchus and lung cancers 3.9 3.5 Liver cancer 3.8 3.6 Hypertensive heart disease 3.6 2.3 Stomach cancer 3.5 4.5 Lower respiratory infections 3.0 3.3 Self-inflicted injuries 2.7 3 Road traffic accidents 2.3 2.6 Oesophagus cancer 2.1 2.4 Other malignant neoplasms 2.0 0.6 All other causes Total deaths 22.1 45716 32.7 875873 VA in Tanzania • Adult morbidity and mortality project in 3 districts • 1992 onwards • Instruments developed by LSHTM – AMMP • Physician assignment of cause • Non ICD mortality classification • Recent introduction of ICD certification / coding (2003) • Validation study underway (UQ, Harvard, LSHTM) AMMP results - 2000 Cause Percent TB/AIDS 21.4 Acute febrile illnesses 20.4 Ill defined causes 11.2 Cardiovascular 8.3 Perinatal (incl stillbirths) 7.9 Others 7.4 Acute respiratory infections 6.1 External causes 5.2 Diarrhoea 5.0 Neoplasms 4.3 Digestive 2.8 Total 100.0 Deaths 3721 Important issues in VA • Standard survey instruments including modules for – Free text narrative – Structured questions – Recording household medical document information • Interviewer – Education background, training • Choice of respondent – Proximity to deceased, education, age and sex, cultural factors • Recall periods – Minimum and maximum intervals • Cause of death assignment and ICD coding – Physician / trained health professional review using standard protocols – Computerized programs – ICD mortality tabulation lists • Validation studies Validation studies • To develop standard verbal autopsy instruments and procedures that are applicable in different epidemiological and cultural settings with minimal modifications • To measure biases in community cause of death patterns when using VA instruments validated in hospital based studies • To improve understanding of quality of cause of death information for estimating global and regional mortality patterns Methods • VA validation study in Tanzania • VA validation and mortality statistics evaluation study in China Study design - Tanzania For each death 3000 deaths Medical record DC/ underlying cause from reviewer 1 Verbal autopsy DC/ underlying cause from reviewer 2 Agreement DC/ underlying cause from reviewer 1 Disagreement reconciled by consensus MR Underlying cause Verbal autopsy validation DC/ underlying cause from reviewer 2 Agreement VA Underlying cause Study design - China 2700 deaths Medical record Death certificate Routine system validation – urban areas 1900 deaths Verbal autopsy validation Routine system death certificate 3500 deaths Verbal autopsy death certificate Routine system reliability – rural areas Future research • Gates proposal – Africa, Bangladesh, Philippines • New UQ sites in Indonesia, Thailand • Egypt, Syria, other EMRO countries ? • Expression of interest by Indian SRS to adopt WHO VA methodology ? • Other opportunities in Africa through PEPFAR? Conclusions • Information on symptoms could be combined with available clinical evidence for judging cause of death at individual level • Scope for application of Bayesian principles in deriving population level cause specific mortality fractions from data gathered in surveys • • For adult deaths, could be useful for understanding broad cause group mortality at population level • • A measure of discriminatory power of individual questions / algorithms for identifying specific causes of adult deaths would be useful Conclusions (contd) • Need to evaluate biases from VA instrument validation in hospital studies, and cross cultural comparability of responses to specific questionnaire items • Need for standardization of protocols for both data collection and cause of death assignment • All VA implementation should contain elements of validation • Examples of potential application – Sentinel sites in northern Brazil – Representative sites in Tanzania – Data quality improvement in Thailand, China • No other option to rapidly increase usability of cause of death data from developing countries