Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information 1 Healthcare Screening Programme Report 2015-2016 Author Christina Morrison, Health Protection and Screening Nurse Specialist Date Version control Next review due date Reviewers/review team 03.03.2017 V 4 Annual PH Governance Group
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Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
1
Healthcare Screening
Programme Report
2015-2016
Author Christina Morrison, Health Protection and Screening Nurse Specialist
Date Version control Next review due date Reviewers/review team
03.03.2017 V 4 Annual PH Governance Group
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
There were 184 women booked to attend antenatal clinic care throughout the
Western Isles, recorded in the Scottish Birth Record (SBR), in the financial period of
1st April 2015 to 31st March 2016. Data can be further divided by Scottish Index of
Multiple Deprivation (SIMD) quintile.
Deprivation quintiles split data into 5 groups, each containing 20% of the data and
with each group described from group 1 (the most deprived) to group 5 (the most
affluent). Table 1 shows the total number of women booked by SIMD in NHS WI,
documented in the SBR.
Table 1: NHS WI Cohort for antenatal screening by deprivation quintile
Local Deprivation Quintile
Born in financial year 1 2 3 4 5
Total Cohort
2013-14 47 42 27 45 46 207
2014-15 39 29 16 46 42 172
2015-16 37 32 35 41 39 184
Source: Scottish Birth Record (SBR) Cohort for Antenatal screening. (This does not include records not recorded on SBR or those delivered in Western Isles where residence is elsewhere).
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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A quick glance table of the screening uptake by pregnant women in NHS Western
Isles is provided below (Table 2).
Table 2: Total uptake of antenatal screening in NHS Western Isles by number and percentage.
Number Uptake (%)
Eligible cohort 184*
Haemoglobinopathies** 18 9.7
Rubella 171 92.9
Hep B 163 88.5
Syphilis 165 89.6
HIV 160 86.9 Source: SBR. *Haemoglobinopathies % uptake is based on samples sent for testing not actual
consent for screening. **Anomaly screening shows above 100% uptake, this is due to some anomaly
scans requiring multiple visits to complete screening requirements.
The Scottish Morbidity Record - Maternity (SMR-02) provides data on when women
attend for antenatal booking with the midwife. Eighty two percent of antenatal
bookings occurred within 10 weeks gestation and 94% of women booked by 12
weeks gestation in the period 1st April 2015 to 31st March 2016. This highlights that
NHS WI Maternity Services in NHS Western Isles are achieving the HEAT target by
successfully booking over 94% of pregnant women before 12 weeks gestation.
KPI 4.2 is timeliness of screening for haemoglobinopathies, measuring this on the
screening sample being received by 10 weeks gestation. The screening is carried
out in two parts; a screening questionnaire, and processing of the blood sample to
identify the presence of haemoglobinopathies.
The laboratory risk-assesses women based on the questionnaire; into high and low
risk categories, with the blood samples of those in the high risk category being sent
for further screening.
Of all women booked in NHS WI for 2015-16, 18 samples were sent away for
screening of haemoglobinopathies, however data are not available to identify the
total of individuals consenting to being screened or when the screening took place.
All women are offered haemoglobinopathy screening in NHS WI. However, it is not
possible to identify the uptake and delivery of this screening within 10 weeks
gestation, as recommended by the KPI, since our recording system is set up for 12
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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weeks. It is anticipated that the Badger net IT system will enable this KPI to be
assessed.
Uptake for all four communicable diseases screening tests offered at initial booking
varied between 86.9% and 92.9% (Table 2), noting that data is incomplete in the
SBR system. Tables 3-6 show the uptake rates of each communicable disease
screened for in NHS WI and by deprivation quintile. The identified percentage uptake
of antenatal screening is lower in deprivation quintile 3 in period 2015-16; however, it
is too early to draw conclusions from this as more data would be required to
establish if this is a pattern unique to NHS WI.
Table 3: NHS WI Rubella screening uptake by deprivation quintile
Rubella WI Deprivation Quintile n (%)
Delivery in financial year 1 2 3 4 5 Grand Total
2013/14 46
(98) 41
(98) 25
(93) 43
(96) 45
(98) 200 (97)
2014/15 36
(92) 28
(97) 15
(94) 46
(100) 42
(100) 167 (97)
2015/16 35
(95) 31
(97) 29
(83) 40
(98) 36
(92) 171 (93)
Source: SBR
Table 4: NHS WI HIV screening uptake by deprivation quintile
HIV Deprivation Quintile n (%)
Delivery in financial year 1 2 3 4 5 Grand Total
2013/14 44
(94) 39
(93) 25
(93) 42
(93) 42
(91) 192 (93)
2014/15 31
(80) 29
(100) 12
(75) 44
(96) 42
(100) 158 (92)
2015/16 34
(92) 30
(94) 25
(71) 36
(88) 35
(90) 160 (87)
Source: SBR
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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Table 5: NHS WI Hepatitis B screening uptake by deprivation quintile
Hep B Deprivation Quintile n (%)
Delivery in financial year 1 2 3 4 5 Grand Total
2013/14 45
(96) 41
(98) 26
(96) 40
(89) 45
(98) 196 (95)
2014/15 35
(90) 29
(100) 15
(94) 46
(100) 41
(98) 166 (97)
2015/16 33
(89) 29
(91) 28
(80) 38
(93) 35
(90) 163 (89)
Source: SBR
Table 6: NHS WI Syphilis screening uptake by deprivation quintile
Syphilis Deprivation Quintile n (%)
Delivery in financial year 1 2 3 4 5 Grand Total
2013/14 46
(98) 42
(100) 26
(96) 41
(91) 45
(98) 200 (97)
2014/15 36
(92) 28
(97) 15
(94) 46
(100) 42
(100) 167 (97)
2015/16 33
(89) 29
(91) 28
(80) 39
(95) 36
(92) 165 (90)
Source: SBR
2.3 Ultrasound scanning
Ultrasound scanning is carried out in pregnancy to assist with dating of pregnancy, to
confirm fetal growth and development and to identify specific anomalies. Three
hundred and six dating scans were carried out in the 2015-16 reporting period.
Numbers of dating scans are higher than the number of women booked as repeat
scans can be carried out for reasons such as:
unsure of dates
too early to scan for dating
poor visualisation
the need for a second opinion.
There were 220 women recorded in SMR-02 as pregnant in the reporting period, of
which 96% were reported to have received dating scans carried out in NHSWI.
Anomalies in numerator identification are apparent in pregnancy and newborn
screening due to a number of reasons; different recording systems, quality of data
recording, women may receive tertiary care in the perinatal period, or when patients
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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move residence. Thus identification of eligible cohorts is different from antenatal
communicable diseases to ultra sound scanning.
All pregnant women (100%) are offered screening for Down syndrome at booking.
Whilst 122 Nuchal dating scans were carried out, only 92 completed the CUBS
(combined ultrasound and biochemical screening) screening, therefore, uptake for
first trimester Down Syndrome screening from nuchal scans was 75% or 42% of total
women receiving local antenatal care. In the reporting period, no women in NHS WI
were tested in the second trimester of pregnancy.
It is important to note that not all CUBS samples have been recorded, as samples
from the Southern Isles have historically been sent directly to Glasgow. This system
has recently changed to ensure a more robust service and reduce possible errors or
omissions due to unrecorded information. All samples now go through NHS WI
Laboratory to Glasgow for processing.
There was a 96% uptake for anomaly scans in period 2015-16, with less than five
referrals to tertiary care.
2.4 Future developments
Gaps have been identified in the recording screening processes of antenatal care of
pregnant women. The future provision of a robust system has been identified as the
Badger net IT system and is due to be implemented in 2017-18. Badger net enables
the recording, viewing and auditing of data gathered on pregnant women in the
antenatal period, throughout NHS Western Isles. It allows women to access their
password protected information via an online portal, which can be downloaded to
their mobile phones, a positive development in woman centered care.
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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3 Newborn Bloodspot Screening
3.1 Overview
NHS WI offers all babies born in NHS WI Newborn Bloodspot on day 5 after birth. A
capillary blood sample is gained by the midwife from the baby’s heel and collected
on a specialised bloodspot card, which is sent for analysis to the Scottish Newborn
Screening Laboratory, Southern General Hospital, Glasgow. The screening aims to
identify those babies at risk of abnormalities that can lead to growth and
developmental problems later in life. The identification of disease allows for
appropriate and timely management of conditions, which can result in a normal and
healthy life. Screening is carried out for five markers:
i) Phenylketonuria (PKU): is a condition that affects 1 in 8,000 babies born in
Scotland. It means that the baby cannot digest the amino acid phenylalanine,
and the buildup of phenylalanine can cause damage to the brain. Symptoms
appear after 6 months of age and can manifest as developmental delay and
may lead to seizures, learning disabilities and behavioural difficulties.
Phenylalanine is a natural part of the protein within our body and is found in
most of our foods. PKU is treated with a special low-protein diet, which
reduces levels of phenylalanine in the body preventing brain damage.
ii) Congenital Hypothyroidism (CHT): is a condition that affects approximately 1
in every 3,500 babies born in Scotland. Congenital means that a baby is born
with the condition of Hypothyroidism meaning that the baby won’t produce
enough of the hormone thyroxine, which is needed for healthy mental and
physical development.
Although CHT cannot be cured it can be treated simply and successfully by
giving daily thyroxine, which will result in children being able to live a full and
active life.
iii) Cystic Fibrosis (CF): This condition affects 1 in every 2,500 babies born in
Scotland. It is an inherited condition that occurs when a baby inherits an altered
form of the CF gene from each of its parents, which together cause CF. Both
parents are healthy carriers of the altered gene and are unaffected by the
condition themselves. CF affects the lungs and the pancreas the most, causing
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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chest infections and problems with digesting food. One in 25 people in Scotland
is a CF gene carrier. Being a carrier has no effect on the baby's health,
however knowing that your baby is a carrier is valuable for when they grow up
and have children of their own.
Babies with cystic fibrosis may not gain weight well and frequently have chest
infections. Babies with the condition can be treated early with a high-energy
diet, medicines, and physiotherapy. Although children with cystic fibrosis may
still become very ill, early treatment can help them live longer, healthier lives.
iv) Sickle Cell Disorder (SCD): is an inherited condition affecting 1 in 2,500
babies born in the UK. It is a condition that affects the quality of the cells which
carry oxygen in the blood. The blood cells of someone with SCD change from a
round shape to a ‘sickle’ shape, and get stuck in the small blood vessels. This
can cause pain and damage to the baby’s body, sometimes leading to serious
infection and can be fatal. Once detected, treatment includes antibiotics and
immunisations to help prevent serious illness. Screening will also identify
carriers of SCD.
v) Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD): affects
approximately 1 in 10,000 babies born in Scotland. Babies with this inherited
metabolic condition have problems breaking down certain fats in order to make
energy for their body. This is not a problem when a baby is well and feeding
normally but it can lead to serious illness and in some cases could be fatal
where a baby has an infection or goes for a long time without food.
3.2 Delivery of Bloodspot Screening in NHS WI
There were 232 babies eligible for newborn bloodspot screening in NHS WI during
2015-16 (Table 7), 229 (98.7%) of the total population were screened, a 4.7%
increase on season 2014/15.
Data were unable to be broken into different Island groups.
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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Table 7: Eligible cohort for Newborn Screening, NHS WI by Deprivation quintile, period 2014-15 and 2015-16
Deprivation Quintile (number)
Born in financial year 1 2 3 4 5 Total Cohort
2014-15 52 32 35 52 45 216
2015-16 39 39 60 51 43 232
Source: Child Health System (This will include babies born outwith Western Isles and transferred in and exclude babies that have transferred out since birth)
Ancestry is requested for screening purposes as some conditions may be inherited
through genetic changes such as sickle cell. Conditions such as congenital
hypothyroidism are based on TSH concentration and can also be affected by a
newborns ethnic background. Table 8 shows the breakdown of the ancestry for
babies tested in NHS WI. 88% had white UK ancestry. Southern and other European
(White) and South East Asian ancestry were both 2%, whilst for 5% the ancestry was
not stated. Table 9 shows that 95% of mothers were born in the UK.
Table 8: Distribution of ancestry groups, NHS WI
Health Board Western Isles
Number %
A African or African-Caribbean 0 0
B. South Asian (Asian) 1 0.5
C. South East Asian (Asian) 4 2
D. Other non-European (other) 0 0
E. Southern & other European (White) 3 1.5
F. United Kingdom (White) 203 88
G. North Europe (White) 3 1.5
H. Don’t Know 0 0
I. Declined to Answer 0 0
J. Any Mixed Background 3 1.5
Z. Not Stated 12 5
Total 229 100
Source: Scottish Newborn Screening Laboratory data report 2015-16
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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Table 9: Number and percentage of mothers born in the UK, NHS WI
Source: Scottish Newborn Screening Laboratory data report 2015-16
There were a total of 250 cards received in the West of Scotland Laboratory for
newborn screening (Table 10).
Table 10: Total specimens received by the lab for testing on NHS WI newborns
Source: Scottish Newborn Screening Laboratory data report 2015-16
*More than one outcome may apply.
Table 11 identifies that 14 avoidable repeat samples were carried out within this
period, 3.6% (9) were due to insufficient samples, 1.6% (4) due to no CHI being
reported and 0.4% (1) noted as other unsatisfactory, and some cards had multiple
errors resulting in repeat samples being required.
Mother born in UK
Yes
No.
(%)
No
No.
(%)
Unknown
No.
(%) Totals
Western Isles
217
(95%)
10
(4%)
2
(1%)
229
Specimen Test – Outcomes* NHS
WI Refused all tests 0
Partial refused 0
Insufficient blood to perform all
tests
9
Unsatisfactory >14 days in transit 1
Unsatisfactory Other 1
Updated info 2
IRT tested late (total) 2
IRT tested late (Born in Scotland) 2
<3 days post T/F 1
Normal result 227
Pre-TF 1
Sent for SCD DNA 0
Total Specimens received 250
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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Table 11: Avoidable repeat samples
Health
Board Insufficient
>14
days
transit
<4
days
old
No
CHI Expired
Other
unsat
Total
avoidable
repeats
Total
cards
received
Western
Isles 9 1 0 4 0 1 14* 250
Source: Scottish Newborn Screening Laboratory data report 2015-16. * Total avoidable repeats are
less than the sum of all columns because some cards are included in more thean one category.
Timeliness of samples is important to enable specialist treatment of conditions
identified by the newborn bloodspot screening process. KPI 16 identifies that
specimens should reach the Laboratory within four working days. This KPI was
achieved for 80.2% (n 183) as shown in Table 12. This is an improvement of 4% on
period 2014-15, where 76% of samples reached the Laboratory in four working days.
Key performance indicators identify that babies screened positive for
Phenylketonuria, congenital hypothyroidism and MCADD require early access to
specialist care by 14 days of age (KPI 19), to treat and reduce severity of conditions.
This would not be possible if delays occur in the transportation to labs or the
requirement for repeat samples. However, 98% (n 223) of NHS WI samples arrived
within 7 days; this allows for processing and timely referral to specialists. It is not
possible to identify if all delays were due to remote and rural location.
Table 12: Number and percentage of babies tested vs specimen days in transit
Health Board Western Isles
Days in Transit: No. %
≤4 183 80.2
5-7 40 17.5
8-10 4 2.0
over 10 1 0.5
Total excluding pre-
transfusion cards 228 100
Source: Scottish Newborn Screening Laboratory data report 2015-16
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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3.3 Future developments
A midwife has been identified to take the lead on implementation of Newborn blood
spot screening. Steps to raise awareness and provide further education on the taking
of a blood spot sample have been adopted aiming to reduce the number of avoidable
repeats.
The blood sample cards used in the screening process are changing in September
2016, reducing the amount of blood spots from five to four, similar to the sample
cards used across the rest of the rest of the UK. This will provide the opportunity to
increase awareness of the techniques required in the screening process.
Board Meeting 30.01.19 Agenda Item: 10.1 Purpose: For Information
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4 Hearing Screening
4.1 Overview
The Universal Newborn Hearing Screening Programme (UNHS) in Scotland aims to
identify all children born with a moderate to profound permanent bilateral deafness
early and to promote the provision of ongoing high quality and appropriate
assessment and support for deaf or hearing impaired children and their families. One
or two babies in every 1,000 are born with a hearing loss in one or both ears. Most of
these babies are born into families with no experience or history of hearing loss. The
hearing screening test is a simple test carried out within the first few weeks after a
baby is born.
4.2 Service delivery
In November 2013, Healthcare Improvement Scotland set out a new set of quality
indicators (KPI), for hearing screening, identified as indicators 11 – 13: