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Vital registration maternal mortality. Case of Jamaica
1. WHY VITAL DATA UNDER-COUNT
MATERNAL DEATHS IN DEVELOPING
COUNTRIES -- CASE STUDY, JAMAICA: 2008
AFFETTE MCCAW-BINNS
Reproductive Health Epidemiologist
University of the West Indies, Mona, Jamaica
YVETTE HOLDER
International Biostatistics and Information Services, St Lucia
JASNETH MULLINGS
University of the West Indies, Mona, Jamaica
2. MATERNAL MORTALITY SURVEILLANCE:
JAMAICA - HISTORY
1981-83: First confidential enquiry
Only 31% of maternal deaths reflected in vital
data
Registrar General‟s Department (RGD)
1986-95: Voluntary MM reporting failed
1998: Maternal mortality surveillance initiated
Maternal deaths classified as a Class I event
Active surveillance by public health team
Investigatereported deaths (community, hospital)
Review deaths in women 10-50 years to identify
maternal and late maternal deaths
3. DEATH CERTIFICATION: MATERNAL DEATHS
43RD WORLD HEALTH ASSEMBLY (1990): RESOLUTION WHA 43.24
ICD-10 recommends countries include on death certificates:
Questions about pregnancy within one year preceding death
Shown to reduce under-reporting of maternal deaths
Reminds the certifier to consider whether the death was due to a
complication of pregnancy.
Suggested questions for inclusion on MCCD.
If female, was the woman:
[ ] pregnant at the time of death
[ ] not pregnant at the time of death, but pregnant within 42 days
[ ] pregnant within the past year
2006: pregnancy check box added to Jamaican MCCD
“pregnancy ended within 42 days of death [ ] yes [ ] no”
?? exclusion of women who died undelivered
4. MILLENNIUM PROJECT: MDGs
Contract between developed and developing
countries to work to improve quality of life in
developing world
8 goals; 3 health related (MDG4, 5, 6)
MDG 5: reduce maternal mortality ratio by 75%
Indicators and monitoring framework
Created measurement ethos
No data? Estimate it!
5. GLOBAL MATERNAL MORTALITY ESTIMATES
(WHO ET AL, 2005 & 08; IHME, 2008 & 11)
Modeled estimates used proxy measures of risk:
Total fertility rate
GDP
HIV seroprevalence
Neonatal mortality
Female literacy
Produce maternal mortality estimates for Jamaica
inconsistent with our surveillance data, e.g.
IHME (2008) – 34 vs 89/100,000
WHO (2005) – 170 vs 94/100,000
Where vital data available:
Information used without regard for its validity or reliability.
6. JUSTIFICATION & AIM
Change in Approach:
Estimating Maternal Mortality: vital data vs. RAMOS
data
WHO/UNICEF, World Bank, 2005 and 2008
Hogan, et al; 2008 and 2011
Jamaica‟s efforts to modernize vital registration
system
Aim
Understand why only one in five maternal
deaths show up in vital data
7. OBJECTIVES:
PREGNANCY RELATED DEATHS 2008…
Identify the universe of maternal, coincidental
and late maternal deaths for 2008
Determine whether they are accurately
certified, registered and correctly coded
Examine factors associated with delays in
registration of maternal deaths
8. METHODOLOGY
CASE IDENTIFICATION AND DATA COLLECTION
Deaths in women 10-49 years reviewed from:
Registered deaths – RGD
MVAs, violence, suicide – police
Maternal mortality surveillance – MOH
Preliminary list given to data collectors who visited –
Hospitals (public and private)
Forensic pathologists (community deaths)
Existing cases updated with any new information
Missed cases added to the database
10. DEATH
REGISTRATION
FORM (DRF)
1. Cause of death
4
transcribed from 1
2
MCCD by
registrar 3
2. Include
demographic
data
3. Code
4. Select underlying
cause
5. Data entry
11. Form D:
Replaces MCCD
Same demographic
and clinical
information as
MCCD but….
Not updated to
include:
a. Duration of illness
b. Pregnancy check
box
FORM D –
CORONER’S CASES
12. QUALITY REVIEW: CERTIFICATION AND CODING
Inspected MCCDs/Form Ds at RGD to determine
if:
Pregnancy check box was utilized (MCCD only)
MCCD /Form D accurately reflected cause of death
information in maternal mortality surveillance reports
Inadequate/incomplete certification
Logical sequence of events
Duration of illness noted
ICD10 codes accurately reflect UCOD on MCCD
Coding/misclassification errors
RGD database consistent with the MCCD
Transcription/data
entry errors (MCCD/Form
D DRF database)
13. DATA ANALYSIS
Deaths classified as:
Direct obstetric
Indirect obstetric
Coincidental
Late maternal
Data analysed (SPSS 16.0) to:
Determine factors associated with non-registration and
misclassification
Demographic: Age, region of residence, place of death
Clinical: Duration from delivery to death, cause of death
Measure impact of delayed registration and
misclassification on the maternal mortality ratio (MMR).
15. FLOW CHART – SHORT LISTED CASES
100
Possible maternal deaths
81 19
pregnancy-related non-pregnancy related
65 16 19
registered not registered registered
44 16 late maternal 10 4 late maternal
WHO-defined & WHO-defined & 2 coincidental
maternal deaths 5 other deaths maternal deaths deaths
13 31 2 19 0 1 18
coded O00-95 incorrectly coded coded O00-95 correctly coded coded ‘O’ ‘C’ coded ‘O’ correctly coded
16. TIMELINESS OF MATERNAL DEATH REGISTRATION,
BY REGION OF DEATH: 2008
<3 months 3-11 months 1-2 years Not registered (>2 years)
100 92.6
90
80 71.7 75.0 72.7
70
60
50
40
25.0 27.3 27.3
30 24.5
18.2
20
6.4
10
0
JAMAICA South east North east South West
17. QUALITY OF CERTIFICATION BY PHYSICIANS
44 registered deaths
32 MCCD, 5 Form D, 7 not located
Pregnancy Check Box (MCCD only)
7/32(22%) pregnancy check box used correctly
8th case: check box inappropriately used
Doctor checked “no” to the question “pregnancy ended within 42
days of death” for a woman who had died undelivered.
Duration of Illness (MCCD only)
Reported on 8/32 certificates (25%)
Less often completed for indirect (9%) than direct (32%)
deaths (Fisher‟s p=.158)
18. QUALITY OF CERTIFICATION BY PHYSICIANS,
continued…
Logical sequence of events (MCCD/Form D)
64% of cases (28/44) sequence of events logical
One: totally backwards,(UCOD before immediate)
Seven: out of sequence (16%)
Omission of important information
Eight (18%): Omission misclassification
Information available on MM surveillance reports
e.g. Eclampsia (O15) and stroke (I61.9); MCCD-stroke listed
More often for indirect (43%) than direct deaths (7%)
19. EVIDENCE OF PREGNANCY ON MCCD, BY
CATEGORY OF MATERNAL DEATH: JAMAICA, 2008
60
No mention of
pregnancy/birth
50 Pregnancy check
42.9
box only used
40 Explicit* reference to
pregnancy
30 Implicit** reference
18.2 *EXPLICIT – use of terms
20
such as pregnancy, abortion,
6.7 childbirth on MCCD
10
** IMPLICIT -- implied in
0 COD such as eclampsia, PPH,
ALL Direct Indirect puerperal cardiomyopathy
DEATHS
24. DELAYED REGISTRATION
Coroner‟s cases
Possible unintended consequence of policy requiring
autopsy (post mortem or PM) for all maternal deaths
Distinguish between „routine‟ PMs & Coroners cases
Routine PM – hospital pathologist
Hospital death within 24 hours of admission
Death within 72 hours of surgery
Uncertain cause of death during admission
Maternal deaths (in hospital)
Coroner‟s case – forensic pathologist
Accidental deaths
Violence, including suicide
Sudden unexpected death in previously healthy person
Including maternal deaths in the community
Death where no medical certificate forthcoming
25. MCCD: JAMAICA – NOT GOOD FOR
IDENTIFYING MATERNAL DEATHS
Check box not being used:
1 in 8 certificates only
Font size too small, ignored
Duration of illness often missing
Late deaths being misclassified
Revised MCCD should ask “if female 10-50
years”
1. At the time of death was she pregnant (y/n)
2. Did she have a pregnancy which ended in past year (y/n)
3. If yes, date pregnancy ended: ___________
4. Gestation: < 22 weeks
≥ 22 weeks or unknown
26. TRANSCRIPTION ERRORS
Poor penmanship
Inadequate understanding of medical terms
Registrars and coders should be required to:
i. Have basic course in human biology/anatomy
ii. Understand medical terminology
iii. Understand common pathways from underlying to
immediate cause of death
Electronic certification
Now being field tested for births
Medium term plan for deaths
27. CODING MATERNAL DEATHS
RGD coders
Lack of training to manually code maternal deaths
Limited experience coding difficult cases
Over-reliance on ACME/MICAR coding software to perform functions
not intended to perform
1 in 3 pregnancy related deaths=late deaths
096=late deaths
O97=deaths from sequelae of pregnancy related conditions >1 year
Deaths of clinical significance for programme planners despite lack of
statistical importance
WHO guidelines
forthcoming
(October 2012)
28. TRENDS: MISCLASSIFICATION OF MATERNAL
DEATHS, 1981-83; 1998; 2008
70 64
49 54
60
50 44
36 36 36
40
25
30 19
20 13 13
10
0
Maternal Registered Pregnancy Coded as
deaths mentioned maternal
Avg/yr 1981-83 1998 2008
References:
1981-83: Walker et al. Identifying maternal deaths in developing countries, IJE 1990 19: 599.
1998: McCaw-Binns et al. Multi-source method for determining mortality in Jamaica:
1996 and 1998. Report to PAHO, 2002.
29. MATERNAL MORTALITY TRENDS: JAMAICA
1981-2009 (RATIO/100 000 LIVE BIRTHS)
1981-3 1986-7 1993-5 1998-0 2001-3 2004-6 2007-9
118.6
120
98.7
100
86.3
80
60
46.9
36.4
40
20.8
20 16.7
5.2
1.6
0
Total Direct Indirect Coincidental Late
30. SUMMARY OF CERTIFICATION & REGISTRATION
EFFECTS ON MMR – 2008, JAMAICA
Maternal Mortality Ratio
/100 000 live births
Missed cases
RGD Poorly
misclassified, 6 certified, 16
4 Other, 40
Not
registered, 24
RGD O
code, 24
33. ACKNOWLEDGEMENTS
REGISTRAR GENERAL‟S DEPARTMENT
INTER-AMERICAN
MINISTRY OF HEALTH/REGIONAL HEALTH AUTHORITIES
DEVELOPMENT BANK
MINISTRY OF NATIONAL SECURITY/JAMAICA
PLANNING INSTITUTE OF
JAMAICA
CONSTABULARY
DELAWARE GRUPO (ESP) MINISTRY OF JUSTICE/CORONER‟S COURTS
DATA COLLECTION TEAM
Editor's Notes
In the late 1970s clinicians were reporting maternal deaths incidences which were not consistent with the official statistics. This lead to Jamaica’s first confidential enquiry into maternal deaths which confirmed that less than a third of maternal deaths were being reported in vital data. As efforts to institute voluntary reporting failed, in 1998 Jamaica began maternal mortality surveillance classifying maternal deaths a class 1 notifiable event. This meant that all maternal deaths were to be reported to the Ministry of Health. Reported deaths were investigated by surveillance officers who also actively reviewed deaths in women of reproductive age to identify maternal and late maternal deaths.
In 1990 the 43rd World Health recommended the addition of a pregnancy check box to medical certificates to remind certifiers to consider whether the death was due to complication of pregnancy with suggested questions. The Jamaican registrar was advised of these recommendations but condensed the three questions to one which said “pregnancy ended within 42 days of death” and added it to the certificate in 2006. The maternal mortality surveillance committee was concerned that the wording might exclude women who died undelivered, and describes 25-33% of deaths each year. The check box has not been evaluated since its introduction.
After the Nairobi conference the millennium project created an environment where developed and developing countries agreed to work toward improving the quality of life for citizens in the developing world, with one of the outcomes being reducing maternal mortality. The millennium goals included indicators to monitor progress and created a measurement ethos around which measurement experts converged. Where data didn’t exist, then a great deal of time and money was invested in developing methodologies aimed at developing estimates of the outcome of the interest from whatever available data existed.
These models use proxy measures of risk including TFR, GDP, HIV prevalence, neonatal mortality and female literacy. The problem however is that the estimates that these models produced for Jamaica were not consistent with our research data.
With this move toward use of vital data as the basis for estimating maternal mortality Jamaica’s efforts to modernize our vital registration system, we aimed to understand why only one in five maternal deaths were consistently showing up in vital data
Pregnancy related deathswere identified from registered deaths, police cases and cases identified by the maternal mortality surveillance process. Short listed cases were selected from women 10-49 years regardless of whether coded to an obstetric code if the reported condition had a high likelihood of being associated with pregnancy.
This is a typically completed Jamaican Medical certificate. ►The check box, in a very small font and is often ignored. ►Also frequently ignored is the section on the duration of illness.
The information on the MCCD is transcribed to a death registration form or DRF by the registrar along with demographic information provided by the informant. ►It is on this form the coders record the ICD10 codes for the listed conditions and then ►select the underlying cause of death. Then it goes to data entry. For this young lady, while they appropriately select O99.4 to represent the heart disease complicating pregnancy, the I05 (mitral stenosis) is selected as the underlying cause.
Cases passing through the Coroner’s courts are registered using a Form D. For the most part it carries the same demographic and clinical information as the medical certificate however it has not been updated to include information on duration of illness or include the pregnancy check box.
Cases were classified as direct, indirect, coincidental or late maternal and analysed using SPSS. We looked at demographic and clinical factors associated with non-registration and misclassification of deaths and measured the impact of data quality issues on the maternal mortality ratio.
Three of four deaths were registered within 3 months of death, the time period necessary to ensure that a death gets counted for statistical purposes. Timeliness of registration however varied by health region from 93% in the south east to only 18% in the western region.
Of the 44 registered deaths, we were able to inspect 32 medical certificates and 5 Form Ds, used to register Coroners cases. 7 supporting documents were not located.► the pregnancy check box, which only appears on the medical certificate, was only used in 8 instances, correctly for 7 while for the 8th case the doctor checked no to the question ‘pregnancy ended within 42 days of death’ for a woman who died undelivered.►Likewise, duration of illness was also only reported on one in four certificates.
Performance improves however, with the logical sequence appropriate for 64% of certificates, including the Form Ds. One however had the underlying cause on line A and in another 7, things were a bit jumbled.►When we compared the surveillance reports to the certificates, in 8 instances doctors omitted important information which would have contributed to the misclassification of the cause of death. For example, one woman had eclampsia and a stroke at one hospital and was transferred to a tertiary hospital where she died in the ICU. Only the stroke was listed on the medical certificate; the doctor inappropriately thought it was adequate to only note the condition for which she was being treated in the ICU. These omissions however more often occur for indirect than direct deaths.
The fact of pregnancy should be noted on the medical certificate to prevent misclassification. This may include the explicit use of terms such as pregnancy, abortion or childbirth either in part 1 or 2 of the certificate. Pregnancy may also be implied from direct causes of death such as eclampsia, post partum haemorrhage or puerperal sepsis.Fact of pregnancy was omitted from 16% of certificates, particularly indirect deaths where more than 1 in 3 certificates failed to note this information. In a few indirect deaths, only the check box was used but this information was not transcribed to the death registration form which is coded.
This case represents how ACME/SuperMICAR, the NCHS coding software, functions in a developing world setting. This doctor used the ►check box and attempted to note duration of illness. ►Septicaemia was noted only in part II as a contributing cause, however the case appeared in the database as A41.9, sepsis of undetermined origin. When we enquired why the case was coded this way, the coder ran it through the ►ACME/superMICAR software and we were surprised when it spat back I51.9 for the cardiac disease listed on line b,► instead of the superimposed pre-eclampsia listed on line c.
This graph summarizes how Jamaican maternal deaths disappear. The universe of events consisted of 54 cases with a MMR of 128. 83% were registered, which is similar to the number picked up by the Ministry of Health’s maternal mortality surveillance system, they however were not the same cases. The 37 or 73% which had pregnancy explicitly mentioned or implied would have yielded an MMR of 87/100,000. The pregnancy check box was not very useful by itself. The greatest challenge however was that only 13 cases were coded by the RGD to an ICD-10 obstetric or O code, but only 10 were registered early enough to get counted for statistical purposes with the 2008. That rate was 23.7/100,000 compared to the 127.5 we started with.
So how do these registration and misclassification problems affect cause specific mortality? ►The first column shows the universe of deaths, the second cases identified by surveillance, the third the registered deaths with fact of pregnancy noted on the relevant certificates and the final column, those registered on time and coded to maternal causes.►Surveillance was missing 3 of 4 first trimester events, mainly community deaths from ruptured ectopic pregnancies. ►Both the surveillance and certification process were missing one in 4 direct deaths. When coding deficiencies were added, 3 of 4 direct deaths were being missed. ► Surveillance was more effective in identifying most of the indirect deaths, however certifiers were failing to record fact of pregnancy of half of the certificates, with only one indirect death correctly coded. ► In the end, the actual ratio of 127 end up as 24 per 100,000 in the official statistics, with 4 of 5 maternal deaths missed.While surveillance was picking up most indirect deaths, doctors were failing to note the fact of pregnancy on the certificates leading to 1 in 2 indirect deaths being lost at this stage. Poor coding practices however mean that more than 9 of every 10 indirect deaths were being missed.
Guidelines are need which distinguish between what are routine post mortems needed to clarify cause of death and Coroners cases. The former would be investigated by hospital pathologists who would advise the attending physician of their findings, who would then issue the medical certificate. Coroners cases would be referred to the forensic pathologist and restricted to cases of accidental deaths, violence and other sudden deaths outside of a medical facility.
The check box was only used on one in 8 certificates. It is probably being ignored because the font is too small. The wording was also misinterpreted by at least one person regarding one woman who died during labour; many certifiers are not completing the duration of illness part of the certificate and even when they do it is ingnored. Because the duration between delivery and death is not clearly noted some late deaths were misclassified. The revised certificate should include specific questions which clearly identify maternal deaths.
To get around the problems associated with deciphering poor penmanship, registrars and coders should have a basic understanding of human biology, anatomy and medical terminology. Coders in particular need to understand some of the common pathways from underlying to immediate cause so that they can qualitatively judge when certificates need to be returned for clarification. Electronic certification is now being field tested for births and should be included over the medium term for death registration.
Was 2008 typical? Well yes and now. Under-reporting is clearly a long standing problem, however more maternal deaths are registered, with better certification, more certificates bear evidence of the fact of pregnancy, however the coding practices at the RGD is letting us down.
As indirect deaths grow in increasing prevalence relative to all maternal deaths; misclassifications errors, if they persist, will increasingly under-estimate our maternal mortality ratio.
In summary, the 10 deaths registered on time and coded correctly by the RGD, give a MMR of 24/100,000. Another 64 deaths/100,000 could be added if the existing MCCDs were coded correctly, however 40/100,000 however would still be missed due to non-registration and poor certification. So, now we know why only one in 5 are officially reported in Jamaica. Is this problem unique to Jamaica or can be repeated in other developing countries where health information systems have been neglected for decades as countries faced with economic challenges and repeated IMF interventions to cut non-essential services have ignored these systems. Will the millennium project lead to revitalization of these systems or investment in more estimation?