Next steps in developing a national newborn hearing screening data set

Glossary items with existing metadata include a link to the item on METEOR.

Attempted screen: hearing screens which are interrupted or stopped for clinical or equipment reasons and do not lead to a pass or refer result are not included.

Audiology: A field of research and clinical practice devoted to the study of hearing disorders, assessment of hearing, hearing conservation and aural rehabilitation. [METEOR identifier 562492]

Audiology assessment: An audiology assessment provides information about the status of middle ear function, diagnosis of hearing loss, and recommendations for clinical care and rehabilitation, such as communication strategies, classroom amplification, hearing aids, speech therapy and educational support. An audiological assessment can also monitor changes in hearing associated with medical and surgical management of middle ear conditions. [METEOR identifier 529778]

Corrected age: The number of weeks since birth minus the number of weeks born pre-term (see Duration of conception). Corrected age is used for pre-term births to consider the developmental progress of the baby.

Duration of conception: The World Health Organization identifies the following categories for duration of gestation:

• pre-term: less than 37 completed weeks (less than 259 days) of gestation
• term: from 37 completed weeks to less than 42 completed weeks (259 to 293 days) of gestation
• post-term: 42 completed weeks or more (294 days or more) of gestation

[See related ‘product of conception’ METEOR identifier 695332]

Flip-flop screen result: A screening result where a unilateral refer (positive) result switches ear on the second screen. Such results can be due to screener error or have a clinical basis.

Gestational age: The gestational age of a product of conception in completed weeks. Gestational age is the best clinical estimate of the duration of pregnancy at a specific point in time, based on the first day of the last menstrual period (LMP), ultrasound or physical examination of the baby. [METEOR identifier 695332]

Hearing Screen: a single stage in the hearing screening procedure, used to detect possible hearing loss. A screen must produce a test result outcome which can be a pass (negative) or refer (positive). Screening is typically conducted in hospital settings but can also be conducted through outpatient and outreach services. Attempted screens which do not lead to a pass or refer result are not included.

Hearing screen complete, discharged from screening: the planned exit of a baby from the screening pathway after a finding of functionally normal hearing at screening. The parent/guardian has received the pass result. Not to be confused with discharge from any other clinical care (such as a hospital).

Hearing screen outcome: the overall outcome of the hearing screening process, which includes the following categories:

• Hearing screen complete, referred for targeted follow-up: the follow-up of babies, otherwise discharged from the screening program (following a bilateral pass result), for diagnostic audiological assessment due to the presence of known risk factors for hearing loss.
• Hearing screen complete, referral made for audiological assessment: where a baby has undergone a hearing screen, the parent/guardian has received a refer result and referral for audiological assessment has been made.
• Hearing screen bypass, non-screening pathway: where a baby cannot be screened for clinical reasons and a direct referral to Audiology is made instead. Some reasons for direct referral include: Atresia (absence of an ear canal), Microtia (incomplete or underdeveloped ear), Bacterial or Viral Meningitis (confirmed or suspected), Cleft Lip/Palate, Down Syndrome, craniofacial abnormalities, babies who spend time in intensive care.
• Hearing screen in process: This category is to be used for babies when a screening outcome has not been made by the end of the reference period.

Hearing screen, incomplete: when a baby has not undergone any stage of hearing screening or has not completed a follow-up screen following a refer result on a previous screen (see also Primary reason not screened). This may also include cases where the parent/guardian has not consented to screening (see Informed consent) or been informed of the screening result. This excludes cases that are directly referred to audiology for clinical reasons (see hearing screen bypass, non-screening pathway).

Indigenous status: An indicator of identification as an Aboriginal and/or Torres Strait Islander. [METEOR identifier 602543]

• Indigenous Australians (also known as First Nations Australians):
  • Aboriginal but not Torres Strait Islander origin.
  • Torres Strait Islander but not Aboriginal origin.
  • Both Aboriginal and Torres Strait Islander origin.
• Non-Indigenous Australians:
  • Neither Aboriginal nor Torres Strait Islander origin.
• Not stated/inadequately described: This category is not to be available as a valid answer to the questions but is intended for use:
  • Primarily when importing data from other data collections that do not contain mappable data
  • Where the answer cannot be determined without clarification from the respondent (for example, 'No' and 'Yes, Aboriginal' are both selected)
  • Where an answer was declined
  • Where the question was not able to be asked because the client was unable to communicate or a person who knows the client was not available

Informed consent: Voluntary consent given by a legal guardian for a baby to participate in the screening program after being informed of the purpose, methods, procedures, potential benefits and potential harms. The essential criteria of informed consent are that the legal guardian has both knowledge and comprehension, that consent if freely given without duress or undue influence, and that the right of withdrawal at any time is clearly communicated.

Live birth: defined by the World Health Organization to be the complete expulsion or extraction from the mother of a baby, irrespective of the duration of the pregnancy, which, after such separation, breathes or shows any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of the voluntary muscles, whether or not the umbilical cord has been cut or the placenta is attached. Each product of such a birth is considered live born. [METEOR identifier 733187]

National Best Endeavours Data Set (NBEDS): a metadata set for which there is a commitment to provide data nationally on a ‘best endeavours’ basis but is not formally mandated for national collection. When data quality, comparability, and universal coverage are achieved, a business case is made to the advisory committee and then the National Health Data and Information Standards Committee, for these data items to become mandatory for collection. [METEOR identifier 344846]

National Minimum Data Set (NMDS): a metadata set which specifies a minimum set of data elements which must be collected and reported across Australia. There must be national agreement for the NMDS to collect uniform data and to supply it as part of the mandatory national collection. [METEOR identifier 344846]

Neonate: a live birth who is less than 28 days old. The neonatal period is exactly four weeks or 28 completed days, commencing on the date of birth (day 0) and ending on the completion of day 27. [ see METEOR identifier 327284]

Pass (negative) screen result: A result indicating that increased risk of hearing loss was not detected by hearing screening. Babies receiving a pass (negative) screen result are generally discharged from the screening program if no risk factors are present.

Postcode: The Australian numeric descriptor for a postal delivery area for an address. [METEOR identifier 611398]

Primary reason not screened: the main contraindication or reason why screening of a newborn was not performed or completed, as indicated by the Screener. If there were multiple reasons, only the most relevant or obvious reason is to be recorded. Primary reasons for not screening are:

• Declined: neonates parents/guardian opted out or declined to consent to screening. A decline form is signed by all parents/guardians who decline a screen.
• Missed screening or invitation: Where babies are:
  • Not captured or invited for screening, such as when they did not appear on the list of deliveries and contact with families is lost.
  • Screened once but not subsequently rescreened when required; or where screening results are not documented.
  • Where babies did not attend a scheduled appointment.
• Moved interstate: where a newborn moves interstate after birth but prior to screening in the jurisdiction of birth.
• Medical exclusion: newborns deemed medically unfit or unstable for screening by a treating clinician. This can include the baby being unwell, being treated for hyperbilirubinemia/jaundice, requiring continuous cardio-respiratory or oximetry monitoring, taking medication that affect brain/ears, on a ventilator, in an incubator.
  This category may also include babies with microtia or atresia or those with genetic conditions known to be associated with hearing loss (for example, Usher Syndrome, Pendred Syndrome).
• Hearing screening bypass, non-screening pathway: when a baby cannot be screened for clinical reasons and a direct referral to Audiology is made instead.
• Baby deceased: neonatal death prevented the screen being performed or completed.
• Ineligible: when babies do not meet age criteria when screening is able to be undertaken.
• Other: other reasons screening was not completed (not captured by other response categories)
• Not stated/inadequately described: the primary reason why screening was not performed or completed is unknown.

Referral: a referral made from the jurisdictional hearing screening program following a refer (positive) result (either unilaterally or bilaterally) or referral directly to audiology due to known risk factors for hearing loss and/or factors that make them unsuitable for screening.

Referral outcome: The outcome of the referral from the jurisdictional hearing screening program. These include:

• Referral following positive screen: a referral has been made from the jurisdictional hearing screening program following a refer (positive) result (either unilaterally or bilaterally).
• Referral following negative screen: a referral has been made from the jurisdictional hearing screening program following a bilateral pass result for diagnostic audiological assessment due to the presence of known risk factors for hearing loss.
• Referral without screening: referral direct to audiological assessment due to known risk factors for hearing loss and/or factors that make them unsuitable for screening.
• No referral required: where no referral was needed following completed screening.
• No referral provided: where no referral had been provided. This could include cases where the referral was in progress but not completed or where a parent/guardian was unable to be contacted.

Refer (positive) screen result: A result indicating that possible hearing loss was detected by hearing screening. Babies receiving a refer (positive) screening result are generally referred to audiological assessment. These are separated into two specific results:

• Unilateral refer (positive) screen result: A result indicating that possible hearing loss was detected in one ear by hearing screening. Babies receiving a unilateral refer (positive) screening result are generally re-screened and/or referred to audiological assessment.
• Bilateral refer (positive) screen result: A result indicating that possible hearing loss was detected in both ears by hearing screening. Babies receiving a bilateral refer (positive) screening result are generally rescreened or referred to audiological assessment.

Referral type: the type of service that a baby was referred to from a jurisdictional hearing screening program. These include:

• Audiologist, audiological assessment: audiological assessment that occurs after a baby has received a refer (positive) result at screening. The assessment, performed by an audiologist, includes hearing tests to assess and diagnose the type and degree of hearing loss.
• Audiologist, targeted follow-up: the follow-up of babies, otherwise discharged from the screening program (following a bilateral pass result), for diagnostic audiological assessment due to the presence of known risk factors for hearing loss.
• Other: any other referrals made that do not include the above types.

Rescreen: A second screening for babies who do not pass the initial screen. The rescreen generally occurs after 24 hours but within two weeks of the initial screen.

Screener: persons trained to use hearing screening equipment and perform newborn hearing screening.

Statistical Area Level 2 (SA2) of usual residence (mother): The geographical region in which the mother of the baby usually resides, as represented by a statistical area level 2 (SA2) code. SA2s are a code set representing a medium-sized general purpose area aggregated from whole Statistical Area Level 1s (SA1s). An SA2 is identifiable by a 9-digit fully hierarchical code. [METEOR identifier 747275]

Stillbirth: A fetal death prior to the complete expulsion or extraction from its mother of a product of conception of 20 or more completed weeks of gestation or of 400 grams or more birthweight. The death is indicated by the fact that after such separation the fetus does not breathe or show any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. [METEOR identifier 733271]

Usual (residence): The place where the person has or intends to live for 6 months or more, or the place that the person regards as their main residence, or where the person has no other residence, the place they currently reside.