10. Aetiology
Updated 9 April 2024
Applies to England and Wales
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This publication is available at https://www.gov.uk/government/publications/newborn-hearing-screening-programme-nhsp-operational-guidance/10-aetiology
Aetiology is the attribution of the cause of the hearing loss. Aetiological investigation refers to the process where the cause is investigated.
The doctor(s) responsible for the aetiological investigation service will work closely with the local hearing screening programme and the audiology service to ensure that children identified with permanent childhood hearing impairment (PCHI) as a result of screening are offered an appropriate aetiological investigation. The doctor(s) are responsible for adding aetiological investigation data for children with PCHI into the NHSP national IT system.
Clinical protocols and guidance
Detailed guidance and protocols for the investigation of PCHI have been developed by the British Association of Audio-Vestibular Physicians.
Recording aetiological information
Entering data into the NHSP national IT system provides a national dataset that will help shape medical services for families and babies with hearing loss.
There is a minimum dataset of 9 data items for each patient as shown in the table below.
| Data item | Field type | Entry options |
|---|---|---|
| Date aetiology investigations discussed/offered | Date | Any date after date of birth |
| Investigations accepted | Drop-down | * In total * In part * Declined |
| Consent for data storage | Drop-down | * Yes * No |
| Diagnosis | Drop-down | a list of ~290 diagnoses |
| Ear | Drop-down | * Left * Right * Bilateral |
| Certainty | Drop-down | * Probable * Certain |
| Date | Date | Any date after date of birth |
| Practitioner | Drop-down | Any aetiology practitioner assigned to site |
| Department | Drop-down | Any aetiological investigations department assigned to site |
There are options to record details of clinical examinations, tests and investigations if this is useful locally and to print out summaries for use in medical notes or inclusion with letters.
To request a login contact your NHSP local manager.
If you have not used the NHSP national IT system before please ask your local manager to give you a brief introduction. Detailed guidance on using the system is available in the national IT system chapter of this operational guidance.
There is a training version of the national IT system that you can use for practice. This training system does not require an N3 connection. Please contact the national IT system helpdesk for a log in or for more help using the system.
National hearing screening IT helpdesk
Email S4H.helpdesk@nhs.net
Phone 0845 0130183
For users of the S4H IT system. The helpdesk is open from 7am to 7pm, 365 days a year.
You must only enter genuine patient data in the live system and you must only enter dummy data in the training system.
If you have a query about what data to enter or other more clinical queries please contact the screening helpdesk and put ‘NHSP - aetiology data query’ in the subject line.
If you encounter a problem entering data or accessing the national IT system please contact the national IT system helpdesk.
Consent for aetiology data storage
As the doctor responsible for aetiological investigations you should obtain and record consent for clinical investigations as usual. You will need to obtain a separate signed consent from the parents or guardian for the storage of the results of investigations or diagnoses on the national IT system. You can amend the consent form template to include local service provider details.
Obtaining informed consent
The doctor responsible for aetiological investigations will need to explain to parents how the data will be stored and how it will be used. Section 1 of the consent form lists the relevant points.
Recording consent
The doctor responsible will need to record the name of the person who gives consent and their relationship to the child in the clinical notes as well as the name of the person who takes consent. A suitable consent form is included in this document. You can change the branding of this form to include local service provider detail, but not the content.
Who can give consent?
Consent must be given by a person with parental responsibility for the child. This is defined by law and described in The Children Act 1989; amended December 2003.
A mother always has parental responsibility even if she is less than 16 years of age unless she is deemed not competent; parental responsibility is then decided by a court order.
A father will have automatic parental responsibility if he is married to the mother. An unmarried father will only have parental responsibility if he has:
- registered the child’s birth jointly with the mother
- obtained a parental responsibility order from the court
- registered a parental responsibility agreement with the court
If in doubt about who can give consent seek advice locally. Safeguarding teams and medical records teams may be able to help.