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Manual detailing the Graf USS screening for DDH. More detail than required for FRCS level, but a good overview and some useful images to help understand the technique and image interpretation.

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Newborn and infant physical examination (NIPE) screening programme handbook

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NIPE - Newborn and Infant Physical Examination

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NIPE - Newborn and Infant Physical Examination

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Details about the NIPE programme - relevant to DDH screening

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This handbook informs and supports best clinical practice and should be used in conjunction with the NIPE programme standards and the NIPE screening pathways. It relates to the screening elements of the top-to-toe physical examination of the baby.

1. NIPE screening examination

The NHS newborn and infant physical examination ( NIPE) programme's main aims are to:

These ages are recommended based on best practice and current evidence and should facilitate a prompt referral for early clinical assessment.

The NIPE programme screens babies (ideally) within 72 hours of birth ( NIPE newborn screening examination) and again at 6 to 8 weeks of age ( NIPE infant examination) for conditions relating to the:

All references to the NIPE examination in this document relate to the 4 screening elements above. References to parent(s) also relate to carer(s), if appropriate.

1.1 NIPE infant screening examination

The infant examination should be performed at 6 to 8 weeks of age for all 4 conditions (as some conditions can develop or become apparent after the newborn screen). This is usually undertaken in a primary care setting.

There are no NIPE national standards for the infant screening examination, as there is no way of systematically measuring them. This document includes good practice guidance and recommended referral timescales for the infant examination until there is a reliable method of recording, measuring and reporting on this part of the NIPE programme.

Please note that the infant examination is not a formally managed part of the national programme and local commissioners will provide scrutiny (as required) to oversee this part of the examination. It is recommended that all screening results are recorded on the GP IT system and in the personal child health record ( PCHR), the 'red book'.

1.2 NIPE screening pathways

For further information please refer to the NIPE newborn and infant screening pathways.

2. Information for parents

It is important that all parents receive Public Health England's ( PHE's) screening tests for you and your baby information about antenatal and newborn screening. PHE has more guidance on how to provide information to the parents effectively, including a range of resources to support health professionals which can be requested from the PHE screening helpdesk.

This information should be given:

during the antenatal period

before offering the NIPE newborn and infant screening examination

Screening tests for you and your baby: babies in special care units has more information for parents of babies in:

Healthcare professionals should inform parents of findings at each examination and advise them to report any concerns about their baby's wellbeing at any time.

2.1 NIPE examination declined

When the NIPE examination is declined:

parent(s) should be fully informed of the NIPE newborn and infant screening examinations and why screening is being offered and undertaken

consent should be obtained and recorded

Parent(s) have the right to decline all or part of the NIPE newborn or infant examination.

If they decline all or part of the NIPE newborn screening examination, this should be documented on the NIPE national IT system (SMaRT4NIPE ( S4N)), communicated to the GP and health visitor and recorded in the PCHR. The parent(s) should be reminded that their baby will remain eligible for NIPE newborn screening until 6 weeks of age and will be offered NIPE infant screening at 6 to 8 weeks of age. Contact details should be provided for the parent(s) from the discharging service, in case they change their mind.

If they decline all or part of the NIPE infant screening examination, the reason should be documented in the GP IT system and in the PCHR. The examination can be undertaken later. See section 7: Babies who have missed screening below for clinical information regarding screening older children.

3. Screening tests

3.1 NIPE newborn screening examination

This examination should ideally take place before 72 hours of age. For babies born in hospital, it is recommended that the examination is completed before transfer home. This will maximise the opportunity for completing the examination within 72 hours of age.

There must be a local follow-up pathway to ensure screening takes place, ideally within 72 hours of age or as soon after this as possible.

Local arrangements should be in place to meet national timescales when babies are:

born at home

transferred home before NIPE newborn screening is completed

This could be by attending a designated NIPE clinic or arrangements being made for the examination to take place at home or in the primary care setting. It is the responsibility of the care provider to ensure the NIPE newborn screening is completed.

Local arrangements should also be in place to meet national timescales when babies are transferred from one acute provider to another before NIPE newborn screening is completed or there are screen positive results requiring follow-up.

Babies in neonatal units

If a baby is receiving care in a neonatal unit, this is not an automatic reason to delay screening. NIPE newborn screening should be undertaken as soon as the baby is well enough and, or has reached 34 weeks plus 0 days (34⁺⁰) weeks corrected age (see below).

'Too young' for NIPE newborn screening

If a baby is born before 34⁺⁰ weeks gestation, screening can be delayed to 34⁺⁰ weeks corrected age. The baby continues to remain eligible for NIPE newborn screening and the examination should be performed as soon as the baby is deemed old enough and is well enough. The screening of babies before 34⁺⁰ weeks corrected age is a local clinical decision. The result should be recorded on S4N.

Please note that the terminology used has changed from 'too preterm' to 'too young' for NIPE newborn screening in national standards and guidance.

'Too ill' for NIPE newborn screening

Screening may be delayed if a baby is too ill for screening. These babies should be accounted for in key performance indicator ( KPI) data, giving the reason for delay as a mitigation against the screening by the 72 hours of age performance threshold.

Possible clinical reasons for this delay include:

respiratory support (other than low flow oxygen), including the presence of chest drains for the first 72 hours

any cardiovascular support, for example, inotropes, prostin

ventilated infant until extubated

baby on continuous positive airway pressure (CPAP)

therapeutic hypothermia

intense phototherapy (double or more, need for immunoglobulin or exchange transfusion)

chest drain in place (without additional respiratory support)

umbilical lines and, or arterial lines in place

post-operative, until off analgesia

unstable hypoglycaemia until off intravenous dextrose

where active reorientation of care to comfort or palliative care is taking place

Trusts can use the above reasons to mitigate against performance thresholds for .

This is not an exhaustive list and clinical judgement should also be used when assessing suitability for newborn NIPE screening.

Screening results - NIPE newborn screening examination

All screening and outcome results should be recorded on S4N and in the baby's PCHR.

Screen negative

Following the NIPE newborn screening examination, the parent(s) should be informed of the results. For babies who have transferred into the area or between care providers with a screen negative result, no further action is required.

The parent(s) should be informed that the NIPE infant screening examination will be undertaken in the primary care setting at 6 to 8 weeks of age (as some conditions can develop or become apparent later).

Screen positive

The parent(s) should be informed of the results and of any referral process that may be required, including expected appointment timescales.

If a baby was not brought for any follow-up appointment, further appointments should be made in line with the trust did not attend (DNA) or was not brought (WNB) policy.

If the baby is in a treatment pathway for one of the screening elements, the NIPE infant 6 to 8-week screening will still need to be completed for the remaining screening elements.

Where there is a screen positive result and NIPE newborn screening examination has been undertaken after the target timescale, a specialist appointment should be arranged without delay.

3.2 NIPE infant 6 to 8-week screening examination

Information about the NIPE infant screening examination should be given to the parent(s) during the postnatal period and again before the NIPE infant screening examination is offered and undertaken. This examination typically takes place in a primary care setting.

There should be timely checks to ensure that:

If the baby is screen positive for any element of the NIPE newborn screening examination, the practitioner undertaking the NIPE infant screening examination should check the progress along the care pathway to ensure required actions have taken place.

Screening results - NIPE infant screening examination

All screening and outcome results should be recorded on the GP IT system and in the baby's PCHR.

Screen negative

Following the NIPE infant screening examination the parent(s) should be informed of the results. For babies who have transferred into the area or between care providers with a screen negative result, no further action is required.

The parent(s) should be advised that the baby will follow the Healthy Child Programme.

Screen positive

The parent(s) should be informed of the results and of any referral process that may be required, including expected appointment timescales.

Where there is a screen positive result and NIPE infant screening examination has been undertaken after the target timescale, a specialist appointment should be arranged without delay.

4. Record keeping

Providers should obtain verbal consent for screening from parent(s), which should be documented, and a record should be made of the screening result and any referrals following screen positive result(s). The above information should be recorded in:

S4N (NIPE newborn screening examination) or GP IT system (NIPE infant screening examination)

baby's clinical notes

baby's PCHR

local clinical data collection system (where appropriate)

There should be:

local arrangements to ensure all babies with screen positive results are referred and seen in line with national standards

regular feedback of attendance at appointment or specialist review after screen positive referrals to enable recording of outcomes in S4N

a local process to follow up all non-attendance of appointments after screen positive referral

a process to record all screening results and outcomes (including post referral outcomes on S4N)

5. Babies who move in and out of area

5.1 Babies who move into the area

Babies who move into the area (move into the country or county) and are unscreened are the responsibility of the current care provider.

5.2 Transfer of unscreened baby to another care provider

If a baby is transferred to another care provider before the NIPE newborn screening has been undertaken or completed, the transferring care provider should formally hand over responsibility and communicate this to the receiving care provider both verbally and using S4N.

After transfer, the receiving care provider should undertake the NIPE examination. This may be a maternity, neonatal or paediatric service. Screening results for these babies should be recorded on S4N wherever possible.

5.3 Babies with screen positive results who transfer between care providers

The transferring provider is responsible for communication with the receiving provider to ensure completion of any outstanding elements of the screening pathway.

If there is an agreement, the record is formally transferred on S4N. The receiving provider is then responsible for follow-up and recording of post referral outcomes. If the birth unit chooses to keep the responsibility for follow-up appointment (due to local decision) they should ensure outcomes are known, recorded and communicated to the responsible care provider.

If there is not a prior agreement and formal transfer of care, the assurance of the completion of the screening pathway and recording of the outcome remains the responsibility of the birth unit.

6. Communication pathways following bereavements

There should be local systems to identify deceased babies and inform other relevant screening and clinical services without delay. If a baby dies before NIPE newborn screening has been completed, this should be marked on the baby's S4N record.

7. Babies who have missed screening

The following clinical guidance outlines the appropriate screening tests depending on age for babies found to have missed NIPE screening. If the missed screen is due to a screening pathway failure, then actions should be taken in line with national screening incident guidance.

7.1 Classification of missed NIPE newborn screening examination

All babies should have all elements of the NIPE newborn screening examination before being fully discharged from the care of any maternity, neonatal or paediatric inpatient services.

A NIPE newborn screening examination is classified as 'missed' if it is not completed:

At 6 weeks of age, babies become eligible for the NIPE infant screening examination.

7.2 Infants who have missed NIPE screening

Up to and including 3 months of age

NIPE newborn screening examinations not undertaken by 72 hours of age should be completed as soon as possible after this time by the current care provider (see the NIPE newborn screening examination section above for reasons screening can be delayed).

Babies remain eligible for NIPE newborn screening examination until 6 weeks of age, but the examination should be completed as close to the 72-hour target as possible. This includes unscreened babies who 'move in' to an area or between care providers.

Eligible babies who move into the area who have not been screened should be offered screening by the responsible service provider. This may be by the maternity, neonatal or paediatric services or in primary care depending on the age and condition of the baby. For these babies, screening results will, in practice, only be recorded on S4N if the NIPE newborn screening examination is undertaken by the maternity or neonatal service.

If NIPE newborn screening is performed at or after 6 weeks of age, it is not necessary to do the NIPE infant screening examination.

Older than 3 months of age

If the NIPE infant screening examination is overdue (after 6 to 8 weeks of age), it should be done as soon as possible.

The screening examination for unstable hips using the Barlow and Ortolani manoeuvres is no longer accurate at this age. Any asymmetry of leg length or restricted hip abduction should be assessed, and the child's gait observed, if walking.

In line with advice in the PCHR, the parent(s) should be advised to contact their GP or health visitor if they have any concerns regarding their child's wellbeing.

7.3 Completing a missed NIPE examination

The relevant examination or observation must be undertaken by a NIPE qualified practitioner.

8. Screening examination of the eyes

Eye development is complex, and a wide range of structural abnormalities may occur if the process is disturbed either due to genetic, infective or sporadic causes.

The primary purpose of the NIPE newborn and infant eye screening examination is to identify congenital cataract(s). Some abnormalities, particularly congenital cataract, are treatable but require early detection, rapid referral and management to prevent lifelong visual impairment.

8.1 Incidence

Around 2 to 3 in every 10,000 babies (200 per year in England) are born with cataracts. In over 50% of these, both eyes will be affected. One fifth of affected babies will have a family history of cataracts. Cataract is the most common treatable cause of blindness in childhood in the UK and worldwide.

A congenital cataract is an opacity within the lens of the eye, which is located behind the pupil. It can occur in one or both eyes and range in severity. A severe cataract blocks light and images from reaching the retina, preventing visual pathway development at a critical stage. Although rare, it is the most common, treatable, visually significant condition identified during NIPE eye screening.

The screening practitioner should be alert to risk factors, such as genetic syndrome, pre-natal infection, sensorineural hearing loss, neurodevelopmental issues or a family history of an eye condition with onset in infancy or early childhood.

Babies with other eye abnormalities, incidental findings or risk factors identified at the NIPE newborn or infant screening examination should be referred for specialist review according to locally agreed pathways.

Please note the guidance below relates to both the NIPE newborn and infant eye screening examinations unless otherwise stated.

8.2 Before the NIPE eye screening examinations

Before the examinations, practitioners should:

Risk factors for congenital cataracts

Babies with a family history of bilateral congenital or hereditary cataracts in a first-degree relative are at risk of developing early cataracts. Even if the NIPE screening examination is normal, these babies may be considered for referral for early specialist opinion, via locally agreed pathways.

Risk factors for other eye or visual problems

Risk factors include:

a first-degree relative with an ocular condition which was congenital or developed in early childhood, for example aniridia (absent iris), coloboma (malformation of the eye) or retinoblastoma (malignant retinal tumour) childhood

prematurity

genetic syndromes, such as trisomy 21, associated with eye and vision disorders

extensive port wine stain involving the eyelids, which can cause glaucoma

maternal exposure to viruses during pregnancy, including rubella and cytomegalovirus

neurodevelopmental conditions or sensorineural hearing loss (deafness caused by abnormal nerve function in the inner ear)

Although practitioners should be aware of these risk factors, they do not alter the NIPE national eye screening pathway. Babies identified with such risk factors should be managed via locally agreed pathways.

8.3 The eye examination

NIPE newborn eye screening examination

The primary aim of the NIPE eye screening examination is the detection of congenital cataracts. In addition, although not part of the screening programme, it is considered good practice to include assessment of the:

NIPE infant eye screening examination

In addition to the assessment described for the newborn eye screening examination, the 6 to 8-week infant eye screening examination should also include checking:

The red reflex examination

The red reflex should be assessed. This is the normal reflection of white light from the back of the eye which is seen as a red glow in the pupil on ophthalmoscopy and is like the red-eye effect seen on flash photography.

To undertake the examination, the practitioner should:

The examination can be repeated by an experienced practitioner if the examination is equivocal. This should ideally be within the 72-hour guideline period of the NIPE newborn examination.

The normal red reflex varies in hue depending on the baby's ethnicity. White babies have an orange-red reflex. The reflex can be less bright and appear magnolia in colour in black, Asian or minority ethnic babies. If the assessment is difficult, it can help to assess the baby's parents' red reflexes to determine the expected reflex colour.

Examples of normal red reflex by ethnicity of baby (from left to right: black, Asian, white)

Congenital cataracts

Congenital cataracts cause a central shadow, completely obscure the red reflex or may make the reflex in one eye appear duller than the other. A severe cataract can make the pupil appear white when viewed with the naked eye.

The red reflex is abnormal if it is completely or partially obscured, is abnormal in shape (iris coloboma or aniridia), white or asymmetrical in colour or brightness to the other eye.

Examples of partially (left) and completely (right) obscured red reflexes

An example of a white 'red reflex'

8.4 Screen negative (normal red reflex assessment)

Babies with screen negative eye results for the NIPE newborn screening examination should have the NIPE infant screening examination at 6 to 8 weeks of age. Infants with screen negative eye results for the NIPE infant screening examination should follow the Healthy Child Programme.

Babies with screen negative eye results but with risk factors described above may be referred via locally agreed pathways.

8.5 Screen positive (abnormal red-reflex assessment)

Surgery for severe cataract is usually undertaken between 6 to 10 weeks of age for optimal visual outcome.

Babies with screen positive eye results following infant screening examination should be referred promptly and seen by a consultant ophthalmologist or paediatric ophthalmology service by 11 weeks of age.

8.6 Parental concerns

Parents should be advised to contact their midwife, GP or health visitor whenever they have any concerns about their baby's eyes or visual behaviour, including:

inability of their baby to fully open their eyes or if eyelid opening appears asymmetrical

apparent deterioration of visual interest

a wobbling of the eyes

a consistent eye misalignment

an abnormal appearance of the eyes

a white reflex, consistently seen on flash photography

asymmetry of the red reflex, consistently seen on flash photography

Note that a family history of an eye or vision condition developing later in life does not require a neonatal referral to ophthalmic services.

Other eye abnormalities should be managed according to local referral pathways.

9. Screening examination of the heart

The purpose of screening is early identification of congenital heart problems. Congenital heart disease ( CHD) is a term used to describe a problem with the heart's structure and function that is present at birth.

Note that the NIPE heart screening pathway will be reviewed in the tax year 2021 to 2022.

9.1 Incidence

The overall incidence of CHD ranging from non-significant to major and critical lesions, is about 8 per 1,000 (range 6 to 12 per 1,000 live births). Critical congenital heart disease ( CCHD) accounts for 15% to 25% of these and is a leading cause of morbidity and mortality. Congenital heart abnormalities can be categorised as:

CCHD, which includes all potentially life-threatening duct-dependent conditions and those conditions that require procedures within the first 28 days of life

major serious CHD, which includes defects not classified as critical but requiring invasive intervention in the first year of life

Some critical and major cardiac lesions may be detected during pregnancy as part of the NHS fetal anomaly screening programme ( FASP), during the 20-week ultrasound scan. The acceptable FASP standard target detection rate for specific cardiac abnormality is at least 50%.

Risk factors for CHD include:

family history of CHD (first-degree relative)

fetal trisomy 21 or other trisomy diagnosed (these babies have high risk of cardiac defects and require continued surveillance)

cardiac abnormality suspected from the antenatal scan

maternal exposure to viruses, for example, rubella during early pregnancy

maternal conditions, such as diabetes (type 1), epilepsy, systemic lupus erythematosis (SLE)

teratogenic drugs taken during pregnancy

Although practitioners should be aware of these risk factors, they do not alter the NIPE national heart screening pathway.

9.3 Undertaking the heart examination

Before the examination, practitioners should establish relevant information regarding:

Parents should be asked if their baby:

ever gets breathless or changes colour at rest or while feeding

is not feeding well or ever too tired to feed, quiet, lethargic, or has poor muscle tone

9.4 Observation

Observation includes reviewing the baby's:

general tone

central and peripheral colour

size and shape of chest

respiratory rate

symmetry of chest movement, use of diaphragm and abdominal muscles

signs of respiratory distress (recession or grunting)

9.5 Palpation

Palpation involves examination of the baby's:

femoral and brachial pulses for strength rhythm and volume

assessment of perfusion through capillary fill time

position of cardiac apex (to exclude dextrocardia)

palpation of liver to exclude hepatomegaly (may be present in congestive heart failure)

vibratory sensation felt on the skin (+/- thrill)

9.6 Auscultation

Auscultation includes identification of a murmur, either systolic or diastolic or loudness. It also includes the assessment of the quality of heart sounds at:

second intercostal spaces adjacent to the sternum left (pulmonary area)

second intercostal spaces adjacent to the sternum right (aortic area)

lower left sternal border in the fourth intercostal space (tricuspid area)

apex (mitral area)

midscapulae (coarctation area)

9.7 Screen negative results

Babies with screen negative heart results following the NIPE newborn screening examination should have the NIPE infant screening examination at 6 to 8 weeks of age.

Infants with screen negative heart results following the NIPE infant screening examination should follow the Healthy Child Programme. Parents should be advised to contact their healthcare professional or emergency services if they have any concerns about their baby.

9.8 Screen positive results

Babies with screen positive heart results following the NIPE newborn screening examination should be seen by a senior paediatrician with expertise in cardiology in the early neonatal period as required. The urgency will depend on suspected condition. Please note that confirmation of assessment within 24 hours of the examination will constitute an outcome in S4N.

If a suspected major or critical heart condition is found on the NIPE newborn screening examination, the baby should be seen as a matter of urgency and definitely before discharge home.

Babies with screen positive heart results following the NIPE infant screening examination should follow the locally agreed referral process. Urgency will depend on the clinical condition of the baby.

Signs and symptoms that suggest critical or major congenital heart abnormality

These include:

tachypnoea at rest

episodes of apnoea lasting longer than 20 seconds or associated with colour change

intercostal, sub-costal, sternal or supra-sternal recession, nasal flaring

central cyanosis

visible pulsations over the precordium, heaves, thrills

absent or weak femoral pulses

presence of cardiac murmurs or extra heart sounds

Significant murmurs

These are:

Benign murmurs

These are typically short, soft, systolic, and localised to the left sternal border. They have no added sounds or other clinical abnormalities associated with them.

The examining practitioner should discuss findings with a senior paediatrician or a paediatrician with expertise in cardiology and refer as appropriate. Urgency will depend on the assessment of the clinical condition of the baby.

Many babies will have cardiac murmurs in the first 24 hours of life in the absence of a cardiac defect (linked to physiological changes at birth). However, cardiac murmurs may be absent in babies with a significant cardiac defect.

9.9 Heart screening standards

Although there are no NIPE heart screening standards, it is recommended that the national clinical pathway above is followed. Practitioners should be familiar with, understand and follow any existing local policies, guidelines and referral pathways.

10. Screening examination of the hips

The guidance below relates to both NIPE newborn and infant screening examinations unless otherwise stated. Note that the hip screening standards and pathways changed in April 2021. National hip risk factors and suspected abnormality on clinical hip examination all now follow the same pathway.

The primary purposes of screening are:

early identification of a dislocated or a dislocatable hip(s)

the identification of sonographic pathological hip dysplasia through selective ultrasound scan (USS)

minimising the risk of long-term complications through:

timely hip ultrasound scan

further expert assessment

early intervention

10.1 Incidence

The incidence of babies requiring treatment is:

3 to 5 per 1,000 live births that may require a Pavlik Harness

1 to 2 per 1,000 live births that may require surgery

Undetected unstable hip(s) with delayed treatment may result in the need for complex surgery and, or long-term complications such as impaired mobility and pain osteoarthritis of the hip and back.

Early diagnosis and intervention should improve health outcomes and reduce the need for surgical intervention.

10.2 NIPE hip risk factors

NIPE national hip risk factors include:

first-degree family history of hip problems in early life - this includes baby's parents or siblings who have had a hip problem that started as a baby or young child that needed treatment with a splint, harness or operation

breech presentation at or after 36 completed weeks of pregnancy, irrespective of presentation at birth or mode of delivery - this includes babies who have had a successful external cephalic version (ECV)

breech presentation at the time of birth between 28 weeks gestation and term

10.3 Multiple pregnancy

All babies from a multiple pregnancy where any of the NIPE hip risk factors listed above are present should have a hip ultrasound. This is because if one of the babies meets the criteria of breech presentation described above during pregnancy, it may be difficult to accurately identify which baby was affected.

10.4 Undertaking the hip screening examination

Before the examination, practitioners should establish:

a mother's recent obstetric history

a baby's family history

the presence of any NIPE hip risk factors

The examination should take place in a warm environment and on a firm, flat surface with the baby undressed and settled.

10.5 Observation and manipulation

Observation covers:

Please note that observation of skin creases for symmetry is no longer part of the NIPE screen. This is no longer regarded as a screen positive finding.

You should undertake both the Barlow and Ortolani test manoeuvres on each hip separately to assess hip stability. The Barlow manoeuvre is used to screen for a dislocatable hip (a dislocatable hip will be displayed out of the joint by this manoeuvre). The Ortolani manoeuvre is used to screen for a dislocated hip (a dislocated hip will be felt clunking into place).

10.6 Screen negative

Babies with screen negative hip results on NIPE newborn clinical examination and no national hip risk factors present should have the NIPE infant screening examination at 6 to 8 weeks.

Infants with screen negative hip results on NIPE infant examination (and no national hip risk factors - unless they have not been previously referred), should follow the Healthy Child Programme.

10.7 Parental concern

Parents should be advised to contact their healthcare professional at any time if they have any concerns about their baby's hip(s). They should observe if:

10.8 Screen positive

A screen positive hip result is an abnormal clinical hip examination (with or without risk factors) and, or presence of NIPE hip risk factors.

A suspected abnormality on clinical examination is defined by:

difference in leg length

knees at different levels when hips and knees are bilaterally flexed

restricted unilateral limitation of hip abduction (with a difference of 20 degrees or more between hips)

gross bilateral limitation of hip abduction (loss of 30 degrees abduction or more)

palpable 'clunk' when undertaking the Ortolani or Barlow manoeuvre

Babies with screen positive hip results following NIPE newborn screening examination should be managed as outlined below.

10.9 Referral and outcome decision

The standards S03 (NP2) and S04 are effective from 1 April 2021 and replace all previous versions.

Standard 3 (NIPE S03 - NP3)

For babies with screen positive hip results, NIPE standard 3 requires the hip USS to be undertaken within the target timescale.

For babies who are born at <34⁺⁰ weeks gestation, hip USS should be undertaken between 38⁺⁰ and 40⁺⁰ weeks corrected age.

Referral to orthopaedic services after hip USS will then depend on the scan result and local management policy in place.

Please see the Good practice guidance section below for further guidance.

Standard 4 (NIPE S04)

For babies who attend for ultrasound scan of the hips after screen positive newborn hip referral, standard 4 requires an outcome decision to be made within the target timescale. This is to ensure that babies who require treatment enter the treatment pathway by 6 weeks of age.

For babies who are born ≥34⁺⁰ gestation, an outcome decision should be made by 6 weeks of age.

For babies who are born <34⁺⁰ weeks gestation, an outcome decision should be made by 40⁺⁰ weeks corrected age.

An outcome decision is either:

discharge from the hip screening pathway after review of normal hip USS results

attendance for clinical assessment by orthopaedic specialist (it is required that hip USS has been undertaken in advance of the decision)

Infants with screen positive results following NIPE infant 6 to 8-week screening examination should be referred directly to paediatric orthopaedic surgeon for urgent expert opinion and be seen by 10 weeks of age.

10.10 Good practice guidance and additional information

A 'one stop shop' model can be provided, in which ultrasound and review by orthopaedic specialist or specialist practitioner is undertaken on the same day, during the same care episode. In order to meet the national standards associated with the pathway, this joint care episode should be between 4 and 6 weeks of age (or between 38⁺⁰ and 40⁺⁰ weeks corrected age for babies born <34⁺⁰ weeks gestation).

If hip USS and orthopaedic specialist assessment are undertaken separately, the scan will need to be routinely done soon after 4 weeks of age (or equivalent corrected age) to give time for orthopaedic appointment to be arranged, outcome decision to be made and, if required, treatment to be started by 6 weeks of age (or equivalent corrected age).

In line with national standard S04 and after local agreement, babies can be discharged by ultrasound services after normal hip scan. However, please note that some areas may wish review of all hip scan results by an orthopaedic specialist.

The term 'orthopaedic specialist' (standard S04) encompasses anyone with delegated responsibilities to initiate treatment decisions based on local policy or practice arrangements. These may include roles such as specialist paediatric physiotherapists, specialist orthopaedic nurse specialists and experienced radiographers.

If a hip rescan is required for technical reasons, it should, wherever possible, take place before 6 weeks of age (or equivalent corrected age). This will ensure that the final outcome decision is known and, if necessary, treatment can start within the optimum timescales (within 6 weeks of age or equivalent corrected age).

If a hip rescan is required for findings of immature hips (Graf 2a), it is acknowledged that this will be required at a timescale exceeding 6 weeks of age (or 40⁺⁰ weeks corrected age).

In both instances, the need for rescan should be recorded on S4N with the specific reason added in the comments box. Comments should include the keywords 'technical' or 'immature'.

The national programme will be reviewing the hip screening pathway. It is vital that S4N data is accurate and complete to enable full analysis when the hip screening pathway is reviewed. A performance threshold will be set for standard 4 (outcome decision) in due course. A hip rescan undertaken after 6 weeks of age (or equivalent corrected age) will not count as an outcome decision as the screening pathway is not complete and an outcome decision is still required.

A local agreement should be in place to ensure that the results of the hip ultrasound scan and orthopaedic specialist or specialist practitioner appointment are recorded on S4N. This can be supported by enabling ultrasound and orthopaedic services access to S4N so that outcomes can be added.

10.11 Confirmation of breech presentation

Note that it may not always be feasible to arrange for a same day USS.

If the practitioner is sure of the findings on abdominal palpation (at or after 36 weeks gestation) and has recorded breech presentation in the woman's records, this would count as a national NIPE hip risk factor.

If the practitioner is unsure of the findings on abdominal palpation (at or after 36 weeks gestation) and has recorded them as '? breech' in the woman's records, this initial finding of '? breech' would not count as a national NIPE hip risk factor. Ultrasound at the earliest opportunity or senior practitioner assessment would be required.

In both these scenarios, if the woman gives birth before confirmation ultrasound and the presentation at birth is cephalic, the NIPE examiner should seek local senior practitioner advice to assess whether the risk factor would apply (this would be a local decision).

10.12 Management of 'clicky hips'

Hip screening aims to identify hip instability. The significance of isolated 'clicks' is debated. On balance and after review of evidence, isolated clicks are not considered clinically significant by the NHS NIPE screening programme.

Isolated clicks without any other relevant clinical findings should therefore not be classified as screen positive and do not require referral for ultrasound.

If the examiner is unsure of their findings, confirmation of the screening outcome should be sought by an experienced clinician. After a second opinion, and if the screening outcome is still unclear, an ultrasound scan may be considered. This would be a local clinical referral and not part of the national NIPE hip screening pathway and should be recorded as an 'other' hip finding on S4N.

Local audits may be carried out to assess clinical competency and feedback to practitioners about 'clicky hip' findings.

Relevant studies related to 'clicky hips' include Kamath and others, 2005, Nie and others, 2017 and Marson and others.

Please contact the PHE screening helpdesk if further references regarding hip pathway changes are required.

11. Screening examination of the testes

The primary purpose of screening is to identify bilateral undescended testes or unilateral undescended testis.

Note that the NIPE testes screening pathway will be reviewed in the tax year 2021 to 2022.

11.1 Incidence

Undescended testes affect approximately 2 to 6% of male babies born at term. One in 100 of these babies will have testes that stay undescended unless treated.

Undescended testes are associated with:

Bilateral undescended testes in the newborn may be associated with ambiguous genitalia or an underlying endocrine disorder. Congenital adrenal hyperplasia must be excluded in a baby with bilateral impalpable gonads.

Early diagnosis and treatment at an early age can reduce the risk of fertility problems and reduce the risk of testicular cancer.

11.2 Clinical risk factors

Clinical risk factors include:

Although practitioners should be aware of these risk factors, they do not alter the NIPE national testes screening pathway.

11.3 Undertaking the examination

Before the examination, practitioners should review the mother's recent obstetric history and baby's family history.

11.4 Observation

Observe the scrotum for symmetry, size and colour.

11.5 Palpation

Carry out palpation of scrotal sac to determine location of testes bilaterally. Undertake palpation of the inguinal canal and perineum if testes are not located in the scrotal sac. Where testes are felt bilaterally but high in the inguinal canal, this should be managed as screen positive.

The term 'undescended' applies for clinical findings of either 'absence' and 'incorrect position'.

11.6 Screen negative

Babies with screen negative results following the NIPE newborn screening examination should have the NIPE infant screening examination at 6 to 8 weeks of age.

Infants with screen negative results following the NIPE infant screening examination should then follow the Healthy Child Programme. Parents should be advised to contact their healthcare professional or emergency services if they have any concerns about their baby.

11.7 Screen positive

A screen positive result is the absence or incorrect position of one or both testes.

Babies with screen positive findings of bilateral undescended testes following NIPE newborn examination should be seen for assessment by a senior paediatrician within 24 hours of the examination to rule out metabolic and disorders of sex development conditions.

Infants with screen positive findings of bilateral undescended testes following NIPE infant screening 6 to 8-week examination should be referred and seen by a senior paediatrician within 2 weeks of the examination.

Infants with screen positive findings of persistent unilateral undescended testis following NIPE infant screening 6 to 8-week examination should be reviewed by a GP between 4 and 5 months of age, then be referred to a surgeon if testis still absent or not descended (to be seen no later than 6 months of age).

12. Training and maintenance of competency

All healthcare professionals have a personal and professional responsibility to maintain their clinical competency. There is also an organisational responsibility to ensure a safe and competent workforce.

Those who undertake NIPE examinations must work in a framework of professional accountability and code of conduct. Each practitioner is responsible for maintaining their own competence to carry out the examination to the highest standard and to identify gaps in their knowledge and any training needs.

To provide duty of care, an appropriately trained health professional must carry out NIPE examinations.

12.1 NIPE newborn screening examination

This must be completed by a trained practitioner who is competent to undertake all elements of the newborn screening examination and who has undergone relevant training and a locally agreed competency assessment by a practising NIPE examiner. This can be a midwife, nurse or health visitor who has successfully completed a university accredited 'examination of the newborn' programme of study or a doctor.

Any newly qualified midwife who has undertaken the module as part of their pre-registration midwifery training must have completed both the theoretical and clinical components of the module before they can be deemed competent to undertake the examination. When employing newly qualified midwives (who are trained in examination of the newborn), providers need to be diligent to ensure all required elements of the course have been successfully completed as pre-registration course content varies across the country.

Nursing associates

The national programme considers that nursing associates would not be eligible to undertake examination of the newborn training or the newborn examination (as agreed by the NIPE Education and Training working group January 2020).

12.2 NIPE infant (6 to 8-week) screening examination

Doctors

It is suggested that any GPs who have not undertaken the 6 to 8-week exam for some time or for whom it is a new activity should firstly refresh by working through the NIPE e-learning module. In addition, a number of universities undertake one-off updates and clinical study days. These could be accessed by contacting the NIPE course leader at local university for details.

If the GP or practice feels it necessary, they may wish to consider the GP working with a colleague who is confident and competent to undertake NIPE practitioner in the practice to offer some mentorship or observed practice.

Physician's associates

The ability to undertake the NIPE newborn or infant screening examination will depend on the training and qualification achieved. Physicians associates who require training should contact the relevant university provider to discuss enrolment for the examination of the newborn course.

Health visitors or nurses

The examination can also be carried out by a health visitor or nurse with suitable competency. To be considered competent, a health visitor or nurse is expected to:

successfully complete a university-accredited examination of the newborn course, as elements of this would also be relevant for the infant examination

undergo a locally agreed competency assessment by a practising NIPE examiner

Currently there are no courses that specifically focus on training for the 6 to 8-week NIPE infant examination. Current national guidance is that health visitors or nurses should undertake an examination of the newborn training, as some elements of the course are transferrable and relevant to undertake the infant screening examination.

12.3 Maintenance of competency

A local competency assessment process should be in place. The focus should not be on a minimum number of examinations, but on the quality of the examination performed. Local providers may choose to determine and set minimum numbers of examinations, but this is not a programme requirement.

The NIPE e-learning module should be completed annually. Registration and a password are required to access the resource on the e-Learning for Healthcare platform.

12.4 Non-university accredited training courses

If practitioners undertook a 'short unaccredited examination of the newborn course' (prior to 2016) then in line with national guidance at the time, practitioners need not undertake another course. In such cases, trust(s) would need to ensure they have a process to assess the practitioner competence and CPD and manage any risk associated with this approach ( NIPE Education and Training working group January 2020).

Trusts should seek university accreditation or a formal university quality assurance process for any in-house NIPE practitioner training courses. In order to ensure appropriate expertise of assessors, any assessment should be undertaken by a university which provides an accredited examination of the newborn practitioner course. A quality assurance process should assess course content in line with required competencies, documentation (including teaching materials and lesson plans) and assessment processes. An annual review should include evaluation strategies, including feedback from students and inform future course planning.

Trusts are responsible for managing any risk associated with the approach where they enable practitioners to undertake the NIPE screening elements of the newborn examination by:

offering, commissioning or accessing a locally delivered examination of:

the newborn practitioner training course

an unaccredited course

Note that short courses or in-house training may not be recognised by all providers, so this may pose a problem if practitioners were to transfer from one trust to another.

13. Quality assurance

The NIPE screening programme has a defined set of standards that providers must meet to ensure local services are safe and effective. Quality assurance ( QA) is the process of checking these standards are met and encouraging continuous improvement.

It includes:

Formal QA visits provide the forum for a peer review of the whole multidisciplinary screening pathway.

Screening quality assurance service ( SQAS) teams make recommendations to providers and commissioners about what is needed to make sure the service meets the national service specifications and standards. They monitor and provide expert advice on the management of screening incidents and promote shared learning and examples of good practice at national, regional and local levels.

Participation in a formal process of QA is the responsibility of each local screening provider. The performance of local services is monitored in a variety of ways including the national data reports, at local trust meetings and within screening programme boards.

13.1 Key performance indicators (KPIs)

KPIs provide a way of measuring screening programme performance in specific areas. They contribute to the overall quality assurance of screening programmes but are not sufficient to fully quality assure, or performance manage, screening services. KPIs help local screening services identify potential or actual problems so remedial actions can be taken.

The 2 for the NIPE screening programme are NP1 and NP3 (S03).

13.2 Coverage data and failsafe

For babies screened by non-NHS services (independent or private), there is no obligation to complete S4N. However, it is good practice to record that screening has taken place by a private provider if this information is known.

The NIPE programme produces quarterly reports that are available on S4N.

Trusts should regularly review S4N failsafe reports and follow up babies identified as 'not screened' or who have not attended for post screen positive referral appointments. These reports should also be reviewed and discussed at local screening programme boards.

13.4 Screening safety incidents

Health professionals should use the managing incidents guidance if there are any problems during screening.

NIPE screening programme standards provide a defined set of measures that providers must meet to ensure local programmes are safe and effective.

The NIPE national standards are available.

Trusts should make sure there are local systems for entering all relevant coverage and outcome data on to S4N including date of post screen positive referral appointment or review.

Trusts should make sure all NIPE screening and outcome data is inputted onto S4N to:

Where NIPE newborn screening examinations have taken place in primary care, local feedback mechanisms should be developed and agreed so screening results can be entered on S4N in a timely fashion.

Summary S4N data reports are produced quarterly and sent to screening and immunisation teams and SQAS to provide a useful overview and quarter by quarter comparison. PHE Screening publishes KPI data reports quarterly and shares an extended KPI data set with NHS England.

We gratefully acknowledge professionals involved (including members of the NIPE expert working groups) for their contribution to the content of this handbook. If you would like further information, please contact the PHE screening helpdesk.

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Newborn and infant physical examination (NIPE) screening programme handbook

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This handbook informs and supports best clinical practice and should be used in conjunction with the NIPE programme standards and the NIPE screening pathways. It relates to the screening elements of the top-to-toe physical examination of the baby.

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Hip displacement in children with cerebral palsy | Bone & Joint

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Hip displacement in children with cerebral palsy -the point of no return

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Hip displacement in children with cerebral palsy -the point of no return

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Abstract

Aims

The migration percentage (MP) is one criterion used for surgery in dislocated or displaced hips in children with cerebral palsy (CP). The MP at which a displaced hip can no longer return to normal is unclear. The aim of this paper was to identify the point of no return of the MP through a large population-based study.

Methods

All children registered on the Cerebral Palsy Integrated Pathway Scotland surveillance programme undergo regular pelvic radiographs. Any child who had a MP measuring over 35% since the programme's inception in 2013, in at least one hip and at one timepoint, was identified. The national radiography database was then interrogated to identify all pelvic radiographs for each of these children from birth through to the date of analysis. A minimum of a further two available radiographs following the initial measurement of MP ≥ 35% was required for inclusion.

Results

A total of 239 children (346 hips) were identified as suitable for analysis at a mean of 6.5 years (2.0 to 14.8) follow-up. In all, 1,485 radiographs taken both prior to and after a hip had a MP ≥ 35% were examined and the MP measured to identify any progression of displacement. Interrogation of the data identified that hips with a MP up to 46% returned to a MP below 40% without intervention, and all hips with a MP equal to or greater than 46% displaced further and the MP did not return to the normal range. Statistical analysis showed the result to be 98% specific with this degree of certainty that hips reaching a MP ≥ 46% would not spontaneously regress.

Conclusion

These findings are clinically relevant in showing that it may be reasonable to continue to monitor hips with a MP not exceeding 46%. This threshold will also guide referral for further management of a displacing hip.

Cite this article: Bone Joint J 2021;103-B(2):411-414.

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Hip displacement in children with cerebral palsy | Bone & Joint

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Hip displacement in children with cerebral palsy

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The Management of Children with Acute Musculoskeletal Infection

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The Management of Children with Acute Musculoskeletal Infection

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Management of Anterior Cruciate Ligament Injury in the Skeletally Immature Patient

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Management of Anterior Cruciate Ligament Injury in the Skeletally Immature Patient

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Early Management of the Paediatric Forearm Fracture

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Early Management of the Paediatric Forearm Fracture

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Supracondylar Fractures in the Humerus in Children

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Supracondylar Fractures in the Humerus in Children

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CPIPs - Cerebral Palsy Integrated Pathway

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CPIPs - Cerebral Palsy Integrated Pathway

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Link to information about the CPIPs system

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To improve the lives of Children/Young People with Cerebral Palsy by offering a high quality, standardised programme of regular physical and radiological examination, enabling early detection and treatment of secondary musculoskeletal conditions and facilitating multidisciplinary management.

1. Establish a standardised cerebral palsy musculoskeletal assessment system.

2. Establish consistent pathways of care for children with cerebral palsy.

3. Ensure equity of access to the pathway for all children with cerebral palsy.

4. Improve communication between members of the network team.

5. Identify children early who may need specialist intervention.

6. Reduce the number of complex surgical procedures required.

7. Improve transition to adult services.

8. Collect information to guide service provision and facilitate high quality research.

How does the Cerebral Palsy Integrated Pathway Work?

All specialists who treat children with cerebral palsy will have received extensive training and bring their own experience.

One of the aims of The Cerebral Palsy Integrated Pathway is to make the assessment of a child's musculoskeletal system (bones, muscles, ligaments, tendons and joints) more consistent so a child will be examined the same way no matter who sees them or where they live in the country.

All healthcare practitioners using CPIP are trained according to a programme developed by highly experienced experts in their field. This training is reinforced by annual updates.

Children with cerebral palsy have a risk of hip migration. This is where the hip joints very gradually start to come out of their sockets. We know that children with dislocated hips often get pain and difficulties with sitting, washing and dressing.

In the early stages, it is very difficult to tell if the hips are beginning to move out of place and therefore regular x-rays are required.

For the more mild forms of cerebral palsy, a child may only need 3 hip x-rays (at ages 2, 6 and 16). For the more severe types, annual x-rays are recommended from 2 to 8 with 2-yearly x-rays from age 8 to 16. Sometimes your specialist may suggest further x-rays in addition to these.

All children entered on to the Cerebral Palsy Integrated Pathway will be seen and examined by a trained specialist every 6 months from age 2 to 6 and every year until age 16 (18 in some regions).

At the moment, the examination focusses on the back, hips and legs. In the future, we are looking at adding arm and hand examination.

Every effort is made to include everyone so no one is left out or missed.

Once the examination and x-rays are done, the results are entered onto an electronic patient record. This was designed and is hosted by the Health Informatics Centre at the University of Dundee.

An individual child's information is accessible to specialists involved in their care. This means that if a physiotherapist examines a child, that information is immediately available to that person's orthopaedic surgeon and visa versa.

We may also use anonymised data about children to try an improve things for the future. All such uses will be subject to rigorous independent ethical approval and data protection requirements.

A Brief History of the Cerebral Palsy Integrated Pathway

In 1994, Sweden began a system of regular childhood physical and xray examination for children with cerebral palsy.

Uppföljningsprogram för personer med cerebral pares ( ) was started in Sweden in 1994 and adopted as a National Quality Register in 2005. It has since been adopted in Norway (2006), Denmark (2010) and Iceland (2012).

They have shown that with this patient management system, the chance of getting a dislocated hip or requiring major orthopaedic surgery reduces dramatically. Other benefits are being investigated and many peer reviewed scientific publications are available.

In 2010 a meeting was held in Liverpool with the aim of reaching a consensus regarding the management of hip problems in cerebral palsy.

Following this, a group of clinicians met later that year to discuss the possibility of introducing a hip surveillance programme, based on the Swedish model, for children with CP in Scotland. They agreed that a hip surveillance programme for children with CP was desirable for Scotland and basing it on the Swedish model was feasible.

Those attending the meeting (Miss Heather Read, Messrs , , , , ) Professor (Orthopaedic Surgeon, Lund, Sweden), Professor (Public Health, University of St Andrews) and Dr Paul Eunson (Paediatric Neurologist, Royal Hospital for Sick Children, Edinburgh) sought collaboration with paediatric physiotherapy colleagues to agree protocols for physical and x-ray examinations.

A group was established to develop resources to support implementation (, Lesley Harper, , Susan Quinn and ). Training for physiotherapists for the physical examination of children with cerebral palsy was provided and supported by The Association of Paediatric Chartered Physiotherapists () Scotland. Audio-visual support was provided by NHS Greater Glasgow and Clyde Medical Illustration Services.

The Cerebral Palsy Integrated Pathway Scotland (CPIPS) programme was formally established in 2013 with funding from the Robert Barr Trust, Brooke's Dream and the Scottish Government for three years. Funding continues through the Sick Kids Friends Foundation and other sources.

The APCP Neurodisability Committee hosted a study day in September 2015 to bring together paediatric orthopaedic surgeons, paediatricians and physiotherapists to learn about the Cerebral Palsy Integrated Pathway, its introduction across Scotland from the CPIPS Development Team and to discuss how to implement it in other areas of the UK.

Following the meeting, a of physiotherapists, paediatric orthopaedic surgeons and paediatricians was established with support from , the British Academy of Childhood Disability () and the British Society for Children's Orthopaedic Surgery ().

In 2016, Stephen Cooke secured funding for the 1st region in England and CPIP West Midlands was established. Implementation of CPIP is now spreading across England, Wales and Northern Ireland with several areas having set up their own regional networks.

In 2019, colleagues from the Republic of Ireland joined the network in order to support the implementation of CPIP within Ireland.

In 2020, CPIP gained national funding for 3 years through the NHS England CQUIN scheme . Funding has been provided win Wales through the Cerebral Palsy Register and work continues in Northern Ireland.

Cerebral Palsy Integrated Pathway UK & RoI Map

The slideshow below shows how far we've come in the last few years. Red areas have no standardised patient management system (PMS), amber areas are using a standardised PMS but no electronic database and green areas (at least in part) are using the web based CPIP system.

Cerebral palsy is the most common cause of childhood physical disability in the Western World yet we still don't know even some basic facts such as...

How many people are affected and how severely?

What assessments and treatments are being carried out?

What are the outcomes of these interventions?

Large studies have shown that...

Up to 75% of children with cerebral palsy experience pain.

One third suffer hip displacement.

4 in 10 undergo major orthopaedic surgery.

Uppföljningsprogram för personer med cerebral pares ( ) has been in place in Sweden since 1994. They now have over 20 years of information and have shown that regular surveillance dramatically reduces the number of children suffering a hip dislocation (to less than 1%) and reduces the number requiring orthopaedic surgery (to less than 15%). These are just 2 of over 80 peer reviewed scientific by the CPUP group, a number growing all the time as more and more knowledge is gained.

The Cerebral Palsy Integrated Pathway Scotland () was based on CPUP and is showing similarly impressive improvements in outcomes (see video below).

Several important guidelines from the National Institute for Health and Care Excellence (), the National Confidential Equiry in to Patient Outcome and Death (), Getting it Right First Time (), the and others support the development of evidence based integrated care pathways, consistently applied across the country collecting and sharing important data to improve care and make children's lives better. More information can be found.

Whilst we don't claim that the Cerebral Palsy Integrated Pathway solves every problem, it is a step in the right direction. Better, more consistent musculoskeletal assessment, surveillance x-rays, established pathways, enhanced communication and high quality data collection shared with those who need to know will undoubtedly enhance the care of children with cerebral palsy.

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About CPIP | Cerebral Palsy | History of CPIP

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To improve the lives of Children/Young People with Cerebral Palsy by offering a high quality, standardised programme of regular physical and radiological examination, enabling early detection and treatment of secondary musculoskeletal conditions and facilitating multidisciplinary management. 1. Establish a standardised cerebral palsy musculoskeletal assessment system. 2.