Next steps in developing a national newborn hearing screening data set

1

Proportion of eligible babies that complete newborn hearing screening.

Screening

2

Proportion of eligible babies that have completed screening by 30 days of age.

Screening

3

Proportion of babies receiving a refer (positive) result following screening.

Screening

4

Proportion of babies that require referral to audiological assessment are referred within 3 business days of screening.

Screening

5

Proportion of referred babies that have audiological diagnosis completed by 3 months of age.

Audiology

6

Proportion of screened babies that receive a diagnosis of permanent bilateral moderate to profound hearing loss.

Audiology

7

Proportion of babies referred to Hearing Australia offered an appointment within 2 weeks of referral.

Amplification

8

Proportion of babies with bilateral permanent moderate to profound hearing loss recommended for hearing aid that have their hearing aid fitted by 6 months of age.

Amplification

9

Proportion of babies that meet criteria for cochlear implantation that receive the implant by 12 months of age.

Implantation

10

Proportion of eligible babies that have access to NDIS support by 6 months of age.

Early Intervention

National performance indicator 1

Proportion of eligible babies that complete newborn hearing screening

Proportion of eligible babies born in a reference period who complete a newborn hearing screen through a jurisdictional newborn hearing screening program.

Number of eligible babies born in a reference period who complete a hearing screen. Relevant NBEDS items:

• Date of screening completion (not null).
• Overall outcome of screening (values 1– 4: 1. Complete, discharged from screening; 2. Complete, referred for targeted follow-up; 3. Complete, referred for audiological assessment; 4. Bypass, non-screening pathway).
• Of these, babies ineligible for newborn hearing screening will be excluded.

Number of eligible babies born in a reference period. Relevant NBEDS items:

• Total number of unique baby IDs with a valid date of birth. Note: Comparison to the number of babies collected in the National Perinatal Data Collection may be undertaken.
• Of these, babies ineligible for newborn hearing screening will be excluded.

The number of eligible babies who complete a newborn hearing screen through a jurisdictional screening program as a proportion of all eligible babies born in a reference period.

1.1.1. All babies of at least 34 weeks’ gestation and up to 6 months of age are eligible for newborn hearing screening, except for babies that are unsuitable for screening.

1.1.2. Newborn hearing screening should be offered to all eligible babies. Babies over 6 months are out of scope for newborn hearing screening due to equipment limitations.

This indicator measures the proportion eligible babies who complete a newborn hearing screening program.

Newborn hearing screening should be offered to all eligible babies. Eligible babies are all babies of at least 34 weeks gestation and up to 6 months of age, excluding babies that are unsuitable for screening (for example those with microtia or atresia, are medically unwell, are stillborn or have died). For some babies, a referral for medical bypass is more appropriate than screening.

All efforts are made to maximise participation in newborn hearing screening in Australia, taking into consideration medical suitability and parental consent to undertake screening. Universal newborn hearing screening is important for population health as it lowers the age of diagnosis of permanent hearing loss.

Depending on data quality and availability, the data could be disaggregated by:

• State or territory of birth
• State or territory of screen
• Age (chronological and corrected) at completed screen
• Gestational age
• Corrected age
• Sex
• Indigenous status
• Remoteness and SEIFA (usual residence of the mother)
• Number of completed screens
• Screen outcome
• Reason not screened

• The denominator should be the number of live births. The National Perinatal Data Collection provides a comprehensive validated dataset of all live births in Australia. The National Perinatal Data Collection data is often available 18 months after the collection period (with preliminary data from most states available within 12 months). Most jurisdictional newborn screening programs can provide a suitable and timely alternative which would likely be used for reporting.
• This indicator restricts the inclusion criteria to eligible babies. Differences in jurisdictional programs’ eligibility criteria need to be considered alongside any indicator reporting. Eligibility status may be determined by the nationally proposed scope. In this case, the AIHW will be able to filter eligible records based on babies age and ‘reasons not screened’. If, however, jurisdiction-specific eligibility is used, states and territories would need to provide a flag or code to highlight eligible babies according to their criteria.
• The National Framework notes that the reason why babies are excluded from newborn hearing screening should be recorded in accordance with jurisdiction procedures. Therefore, consideration and reporting of the subgroup of babies who are not screened will be useful adjunct reporting.
• Babies who bypass screening and are referred directly to audiology are often still included as having completed screening as a clinical determination and valid referrals are made in these cases. These cases can be captured using the agreed items.
• The reference period is yet to be determined. This could be a calendar or financial year period depending on administrative and collection processes.

National performance indicator 2

Proportion of eligible babies that have completed screening by 30 days of age (corrected)

Proportion of eligible babies born in a reference period who complete a newborn hearing screen through a jurisdictional newborn hearing screening program by 30 days of age (corrected).

Number of eligible babies born in a reference period who complete a hearing screen within 30 days.

Relevant NBEDS items:

• Date of screening completion (not null and within 30 days of age or corrected age).
• Overall outcome of screening (values 1– 4: 1. Complete, discharged from screening; 2. Complete, referred for targeted follow-up; 3. Complete, referred for audiological assessment; 4. Bypass, non-screening pathway).
• Baby’s date of birth.
• Gestational age (to calculate corrected age).
• Corrected age (derived): to be used where babies are born prior to 37 weeks’ gestation.

Babies ineligible for newborn hearing screening will be excluded.

Number of eligible babies born in a reference period. Babies ineligible for newborn hearing screening will be excluded.

Relevant NBEDS item: Total number of unique baby IDs with a valid date of birth.

Comparison to the number of babies collected in the National Perinatal Data Collection may be undertaken.

The number of eligible babies who complete a newborn hearing screen through a jurisdictional screening program within 30 days of (corrected) age as a proportion of all eligible babies born in a reference period.

1.3.1. Where possible, eligible babies should have completed screening by 30 days of age (corrected).

1.3.2. Reasons for screening being completed after 30 days (corrected age) should be recorded consistent with jurisdiction protocols.

This indicator reflects the internationally recognised '1-3-6 benchmark' for newborn hearing screening which aims for screening to be completed by one month (30 days); audiologic diagnosis by 3 months, and enrolment in early intervention by 6 months (Joint Committee on Infant Screening 2007). However, the 2019 Joint Committee on Infant Heating (JCIH 2019) position statement recommends that jurisdictions already meeting the ‘1-3-6’ benchmark should be striving for a more ambitious '1-2-3 benchmark'.

Evidence indicates that early detection and management of hearing loss leads to improved speech, language and educational outcomes (Ching 2015).

Depending on data quality and availability, the data could be disaggregated by:

• State or territory of birth
• State or territory of screen
• Age (chronological and corrected) at completed screen
• Sex
• Indigenous status
• Remoteness, SEIFA (usual residence of the mother)
• Number of completed screens
• Screen outcome
• Reason not screened

• This indicator is a subset of indicator 1. It could therefore be reported as a disaggregation of Indicator 1 instead of a standalone indicator.
• The denominator should be the number of live births. The National Perinatal Data Collection provides a comprehensive validated dataset of all live births in Australia. The National Perinatal Data Collection data is often available 18 months after the collection period (with preliminary data from most states available within 12 months). Most jurisdictional newborn screening programs can provide a suitable and timely alternative which would likely be used for reporting.
• This indicator restricts the inclusion criteria to eligible babies. Differences in jurisdictional programs’ eligibility criteria need to be considered alongside any indicator reporting. Eligibility status may be determined by the nationally proposed scope. In this case, the AIHW will be able to filter eligible records based on babies age and ‘reasons not screened’. If however, jurisdiction-specific eligibility is used, states and territories would need to provide a flag or code to highlight eligible babies according to their criteria.
• The National Framework notes that the reason/s why babies are excluded from newborn hearing screening should be recorded as applicable in accordance with jurisdiction procedures. Therefore, consideration and reporting of the subgroup of babies who are not screened will be useful adjunct reporting.
• Babies who bypass screening and are referred directly to audiology are often still included as having completed screening as a clinical determination and valid referrals are made in these cases. These cases can be captured using the agreed items.
• The reference period is yet to be determined. This could be a calendar or financial year depending on administrative and collection processes.
• 30 days is used as an ‘average month’ and is consistent with measures used across other nationally reported indicators.
• Calculation of corrected age: Corrections are applied for babies who are born <37 weeks gestation. For example, a baby born at 36 + 0 weeks has 7 days (1 week) + 30 days to complete hearing screening to meet the target for National Performance Indicator 2. 37 weeks is based on the WHO definition that identifies 37 weeks as the earliest point of a term birth (see product of conception). The AIHW notes that perinatal literature (such as Tita et al. 2018, Bentley et al 2018) suggests that a birth between 37­-38 weeks is considered ‘early term’ with poorer outcomes than those born between 39-41 weeks. As the clinical understanding on pre-term outcomes evolves, amendments to the calculation of corrected age could be considered.

National performance indicator 3

Proportion of babies receiving a refer (positive) result following screening

Proportion of eligible babies that have received a refer (positive) result following newborn hearing screening.

Number of babies born in a reference period who returned a refer (positive) newborn hearing screen. Relevant NBEDS items:

• Total number of unique baby IDs with a valid date of birth
• Outcome of the final completed screen (unilateral refer or bilateral refer)
• Date of hearing screening completion (not null)

Babies ineligible for newborn hearing screening will be excluded.

Number of babies born in a reference period who completed a newborn hearing screen (excluding screening bypass babies).

Relevant NBEDS items:

• Total number of unique baby IDs with a valid date of birth
• Date of screening completion (not null)
• Overall outcome of screening (values 1-3):

1. Complete, discharged from screening
2. Complete, referred for targeted follow-up
3. Complete, referred for audiological assessment

The number of babies who returned a refer (positive) newborn screening hearing result as a proportion of all babies screened.

2.2.5 Screening programs will monitor screening results and investigate if positivity rates are substantially higher (or lower) than 2% of total screens conducted.

The positivity or referral rate of the screening test is an important indication of how well the screening test is performing. A positivity rate of less than 2% is expected using AABR technology; a higher rate could indicate that the screening test is yielding too many false positive results or indicate an increase in the prevalence of hearing loss worthy of further investigation. A notably low positivity rate could indicate testing is yielding too many false negative results.

The positivity rate of the screening test provides an indication of how well the screening test is functioning as a test of potential congenital permanent bilateral, unilateral sensory, or permanent conductive hearing (or mild hearing loss).

Depending on data quality and availability, the data could be disaggregated by:

• State or territory of birth
• State or territory of screen
• Age (chronological and corrected) at completed screen
• Sex
• Indigenous status
• Remoteness, SEIFA (usual residence of the mother)
• Number of completed screens
• Screen outcome
• Refer status (unilateral or bilateral)

• This indicator restricts the inclusion criteria to eligible babies. Differences in jurisdictional programs’ eligibility criteria need to be considered alongside any indicator reporting. Eligibility status may be determined by the nationally proposed scope. In this case, the AIHW will be able to filter eligible records based on babies age and ‘reasons not screened’. If however, jurisdiction-specific eligibility is used, states and territories would need to provide a flag or code to highlight eligible babies according to their criteria.
• The reference period is yet to be determined. This could be a calendar or financial year period depending on administrative and collection processes.
• Babies can be screened on multiple occasions. The NBEDS captures outcomes from 3 completed screens. The outcome of the last completed screen can be used to determine the overall pass or refer status of the baby’s screen. There is also a separate item that captures the overall outcome of the screening process.
• The NBEDS will be able to distinguish unilateral refer results from bilateral refer results.
• The proportion of babies who receive a refer (positive) result may include those who obtain false positive results. Research has indicated that false positives using AABR equipment can be around 2% (Mehl & Thomson 1998).
• The disaggregation for this indicator will ensure that the screening test is performing equally across some population subgroups. Investigation of other subpopulations based on CALD and socioeconomic status would require further development.
• An understanding of how many babies bypass the screening pathway and obtain direct referral to audiology are considered helpful adjunct reporting. Bypass babies are excluded from the calculation as this indicator seeks to determine positive results following a screen.
• In the future, another indicator of how well the screening test is functioning could be obtained from the positive predictive value of the screening test, which is the proportion of babies who receive a refer (positive) hearing screen who, following further assessment, are diagnosed with is congenital permanent bilateral, unilateral sensory, or permanent conductive hearing loss including neural hearing loss of >40 decibels (or mild hearing loss).