Background
Methods
Study design
Assembling of expert panel
Data collection
Procedures
Consultation round 1
Consultation round 2
Consultation round 3
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group 1: system characteristics agreed or strongly agreed with by ≥80 % of panel members;
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group 2: system characteristics agreed or strongly agreed with by 70–79 % of panel members; and
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group 3: system characteristics agreed or strongly agreed with by <70 % of panel members.
Results
Characteristics of expert panel
Panel characteristics | Total N = 51 |
---|---|
Frequency (%) | |
Country of residence | |
Australia | 3 (5.9) |
Bangladesh | 2 (3.9) |
Canada | 1 (2) |
China | 1 (2) |
Croatia | 2 (3.9) |
Ethiopia | 1 (2) |
India | 4 (7.8) |
Israel | 1 (2) |
Italy | 2 (3.9) |
Nepal | 3 (5.9) |
Netherlands | 2 (3.9) |
New Zealand | 1 (2) |
Norway | 3 (5.9) |
Pakistan | 2 (3.9) |
South Africa | 4 (7.8) |
Sudan | 1 (2) |
Switzerland | 2 (3.9) |
Turkey | 2 (3.9) |
United Kingdom | 5 (9.8) |
United Republic of Tanzania | 1 (2) |
United States of America | 8 (15.7) |
Primary area of work | |
Database | 1 (2) |
Epidemiology | 8 (15.7) |
Neonatal nursing | 1 (2) |
Neonatology | 6 (11.8) |
Obstetrics | 15 (29.4) |
Paediatrics | 4 (7.8) |
Pathology | 2 (3.9) |
Policy/Programs | 2 (3.9) |
Public Health | 12 (23.5) |
Other area of worka
| |
Epidemiology | 9 (17.6)b
|
Gynaecology | 1 (2) |
Midwifery | 1 (2) |
Neonatology | 3 (5.9) |
Obstetrics | 7 (13.7) |
Paediatrics | 2 (3.9) |
Pathology | 2 (3.9)c
|
Perinatology | 1 (2) |
Policy/Programs | 3 (5.9)d
|
Public Health | 12 (23.5)e
|
Research | 1 (2)f
|
Consultation Round 1: Open-ended question
Round 1 (N = 71) proposed characteristics | Round 2 (N = 52) agreement with system characteristic (%) | Round 2 proposed characteristics and notes on changes | Round 3 (N = 51) agreement to retain (%) | Round 3 preliminary proposed characteristics |
---|---|---|---|---|
1. A global system must have clear guidelines for use | 98 | A global system must have clear guidelines for use and definitions for all terms used | 100 | (F1) A global system must have clear guidelines for use and definitions for all terms used |
2. A global system must produce data that can be used to inform strategies to prevent perinatal deaths | 96.1 | A global system must produce data that can be used to inform strategies to prevent perinatal deaths | 96 | (F2) A global system must produce data that can be used to inform strategies to prevent perinatal deaths |
3. A global system must provide clear definitions for all terms used | 96.1 | Incorporated into #1 | - | - |
4. A global system must produce data that are easily understood and valued by end-users (those that use the cause of death data) | 96.1 | Incorporated into #8 | - | - |
5. A global system must be available in multiple languages | 96.1 | Incorporated into #10 | - | - |
6. A global system must be able to work with all levels of data (from both low-income and high-income countries) | 94.1 | A global system must be able to work with all levels of data (from both low-income and high-income countries), including minimal levels | 98 | (S1) A global system must be able to work with all levels of data (from both low-income and high-income countries), including minimal levels |
7. A global system must allow easy access to the data by the end-users | 94.1 | A global system must allow easy access to the data by the end-users | 92 | (F3) A global system must allow easy access to the data by the end-users |
8. A global system must be easy to use by those classifying the causes of death | 92.6 | A global system must be easy to use, and produce data that are easily understood and valued by users | 100 | (F4) A global system must be easy to use, and produce data that are easily understood and valued by users |
9. A global system must have high inter- and intra-rater reliability | 92.2 | A global system must have high inter- and intra-rater reliability | 94 | (F5) A global system must have high inter- and intra-rater reliability |
10. A global system must be available in different formats including inexpensive ehealth and mhealth options | 92.2 | A global system must be available in different formats including inexpensive ehealth and mhealth options, and in multiple languages | 94 | (F6) A global system must be available in different formats including inexpensive ehealth and mhealth options, and in multiple languages |
11. A global system must distinguish clearly between causes of death and associated factors | 90.6 | Incorporated into #19 | - | - |
12. A global system must require neonatal deaths to be clearly distinguished from stillbirths | 88.7 | A global system must require neonatal deaths to be clearly distinguished from stillbirth | 94 | (F7) A global system must require neonatal deaths to be clearly distinguished from stillbirths |
13. A global system must distinguish between antepartum and intrapartum conditions | 88.7 | A global system must distinguish between antepartum and intrapartum conditions | 90 | (S2) A global system must distinguish between antepartum and intrapartum conditions |
14. A global system must be useable with minimal data | 88.2 | Incorporated into #6 | - | - |
15. A global system must include cause of death categories that are relevant in all settings | 88.2 | Incorporated into #16 | - | - |
16. A global system must use valid causes of death categories | 84.9 | A global system must ensure cause of death categories are relevant in all settings | 96 | (S3) A global system must ensure cause of death categories are relevant in all settings |
17. A global system must have rules to ensure valid assignment of the cause of death | 83 | A global system must use rules to ensure valid assignment of causes of death | 98 | (S4) A global system must use rules to ensure valid assignment of cause of death categories |
18. A global system must identify the underlying cause of death | 83 | A global system must identify the underlying cause of death | 78 | - |
19. A global system must require associated factors to be recorded | 81.1 | A global system must require associated factors to be recorded and clearly distinguished from causes of death | 94 | (S5) A global system must require associated factors to be recorded and clearly distinguished from causes of death |
20. A global system must allow more than one cause of death to be recorded | 80.8 | A global system must allow more than one cause of death to be recorded | 78 | - |
21. A global system must require the single most important factor leading to the death to be recorded | 78.9 | A global system must require the single most important factor leading to the death to be recorded | 86 | (F8) A global system must require the single most important factor leading to the death to be recorded |
22. A global system must have multiple levels of causes of death | 77.4 | Incorporated into #25 | - | - |
23. A global system must require both primary and secondary causes of death to be recorded | 76.9 | A global system must require both primary and secondary causes of death to be recorded | 73 | - |
24. A global system must link to relevant birth registries | 74.5 | A global system must link to relevant birth registries | 55 | - |
25. A global system must have a small number of main categories of causes of death | 74.1 | A global system must have multiple levels of causes of death, with a small number of main categories | 82 | (S6) A global system must have multiple levels of causes of death, with a small number of main categories |
26. A global system should record the level of data available to assign the cause of death (e.g. verbal autopsy only, placental histology, autopsy, etc.) | 73.6 | A global system should record the level of data available to assign the cause of death (eg verbal autopsy only, placental histology, autopsy, etc.) | 96 | (S7) A global system should record the level of data available to assign the cause of death (e.g. verbal autopsy only, placental histology, autopsy, etc.) |
27. A global system must incorporate both stillbirths and neonatal deaths | 73.6 | A global system must incorporate both stillbirths and neonatal deaths | 86 | (S8) A global system must incorporate both stillbirths and neonatal deaths |
28. A global system must include a sufficiently comprehensive list of categories to result in a low proportion of deaths classified as “other” | 73.6 | A global system must include a sufficiently comprehensive list of categories to result in a low proportion of deaths classified as “other” | 80 | (S9) A global system must include a sufficiently comprehensive list of categories to result in a low proportion of deaths classified as “other” |
29. A global system must require the main mechanism of death to be recorded | 71.2 | A global system must require the main mechanism of death to be recorded | 35 | - |
30. A global system must reduce the percent of death classified as “unknown” | 70.6 | A global system must reduce the percent of death classified as “unknown” | 59 | - |
31. The causes of death in a global system must map to the ICD | 68.6 | The causes of death in a global system must map to the ICD | - | - |
32. A global system’s causes of death must be mutually exclusive (not overlapping) | 66.4 | A global system’s causes of death must be mutually exclusive (not overlapping) | - | - |
33. A global system must include perinatal deaths for all births after 20 weeks’ gestation | 61.5 | A global system must include perinatal deaths for all births after 20 weeks’ gestation | - | - |
34. A global system must require preventable factors to be recorded | 59.6 | A global system must require preventable factors to be recorded | - | - |
35. A global system must require the degree of certainty for each cause of death to be recorded (unlikely, possibly, probably) | 56.9 | A global system must require the degree of certainty for each cause of death to be recorded (unlikely, possibly, probably) | - | - |
36. A global system must require a principal maternal and a principal fetal/neonatal condition to be classified | 55.8 | A global system must require a principal maternal and principal fetal/neonatal condition to be classified | - | - |
37. A global system must include all perinatal deaths as a result of induced abortions | 55.8 | A global system must include all perinatal deaths as a result of induced abortions | - | - |
38. A global system must be hierarchical | 53.7 | A global system must be hierarchical | - | - |
39. A global system must align with the WHO maternal mortality classification | 51.9 | A global system must align with the WHO maternal mortality classification | - | - |
40. A global system must be clinical rather than pathological | 50 | A global system must be clinical rather than pathological | - | - |
41. A global system should be able to generate classifications from other death classification systems | 48.2 | A global system should be able to generate classifications from other death classification systems | - | - |
42. A global system must not be strictly hierarchical | 43.4 | A global system must not be strictly hierarchical | - | - |
43. A global system must assign causes of death by computer algorithm | 39.2 | A global system must assign causes of death by computer algorithm | - | - |
44. There must be separate global systems for stillbirth and neonatal death | 35.9 | There must be separate global systems for stillbirth and neonatal death | - | - |
45. A global system must use different hierarchy for assigning causes of death for different settings | 29.4 | A global system must use different hierarchy for assigning causes of death for different settings | - | - |
46. A global system must not include associated factors | 17 | A global system must not include associated factors | - | - |
Consultation Round 2: Agreement with proposed system characteristics
Consultation Round 3: Retention or discarding of system characteristics
Structural characteristics (10)
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Accommodates both stillbirths and neonatal deaths.
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Distinguishes antepartum from intrapartum conditions.
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Requires neonatal deaths to be clearly distinguished from stillbirths.
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Requires the single most important factor leading to the death to be recorded.
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Allows associated factors to be recorded and clearly distinguished from causes of death.
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Has a small number of main categories.
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Is multilayered, to accommodate varying levels of available information, in particular the low levels of data available in many LMIC settings.
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Includes a sufficiently comprehensive list of categories to minimise the proportion of deaths classified as "other."
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Ensures cause of death categories are relevant in all settings.
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Includes the level of data available to assign the cause of death (e.g. verbal autopsy only, placental histology, autopsy, etc.).
Functional characteristics (7)
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Shows high inter- and intra-rater reliability.
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Has clear guidelines for use and definitions for all terms used.
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Is easy to use.
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Produces data that are easily understood and valued by users.
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Allows easy access to the data by the end-users.
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Is available in different formats including inexpensive ehealth and mhealth options, and in multiple languages.
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Uses rules to ensure valid assignment of cause of death categories.