Implementing Haemoglobinopathy Screening in Scotland Summary of screening, laboratory and clinical...
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Transcript of Implementing Haemoglobinopathy Screening in Scotland Summary of screening, laboratory and clinical...
Implementing Haemoglobinopathy Screening in ScotlandSummary of screening, laboratory and
clinical service mapping exercise May 2009
Purpose Review of existing policy, practice andresources to inform implementation and
serviceplanning
Approach 14 territorial NHSS boards2 questionnaires
» Wider haemoglobinopathy screening service» Laboratory specific
Site visits Standard agenda and discussiontemplate
Questionnaire1. General information
-population, policy, practice
2. Results – positive, negative, partner testing3. At risk 4. Affected babies and follow up
Population
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10000110001200013000140001500016000
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Ayr
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and
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and
Cly
de
Hig
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Lana
rksh
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Loth
ian
Ork
ney
She
tland
Tay
side
Wes
tern
Isl
es
NHS Board
Number of pregnant women who book for antenatal care by NHS Board
Population
0
10
20
30
40
50
60
70
80
90
100
%
Arg
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Cly
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NHS Board
Ancestry Groups Newborn Bloodspot Cards January - December 2008
British/Irish
Other ancestry groups
……
General information
Practice • Approximately 30% women booked by 10 weeks • Majority of booking and initiation of
haemoglobinopathy screening done by midwives in ANC
• Criteria – ethnicity (SWHMR), obstetric history, GP or patient request, name
• Coordination of screening – 4/5 nominated role• Time to result – 3-14 days
Results
Negative given by midwife at next ANC appointment2 boards provide written confirmation, not necessarily
recorded within SWHMRPositive given by a range of staff –midwife/obstetrician/haematologist
at ANC and usually counselled.
Partner screening initiated asap. May be carried out at ANC or GP surgery
time to result ranges from 3-14 daysresults given by same range of staff and may be
verbal/written4 boards provide written confirmation of negative
result6 boards provide written confirmation of positive
result (5 had no experience)
At risk
• 8 boards had no experience• known couples referred for specialist care• 3 provide written confirmation of status• gestation at which couples are counselled depends on whether
newly identified – up to15 weeks• 1 board would not offer PND beyond 20 weeks• sample – CVS not always available locally• molecular diagnosis – most boards refer to Oxford laboratory• time to result – 3-14 days• results given by range of staff – as before plus geneticist or
specialist nurse and likely to provide ongoing support• support following TOP – routine/ plus consultant haematologist
Affected babies and follow up
• 5-6 babies diagnosed with SCD/year
• results given in postnatal ward or at clinic
• written information given
• referred to paediatric haematologist with review at appropriate clinic – joint local or referral centre
• clinical management consistent
Laboratory questionnaire
• General • Equipment• Workload• Results • Reporting• Partner testing• Organisation• Literature and cards
Laboratory questionnaire
General –17 laboratories across all HB areasEquipment–5 unable to process all samples on site–8 share equipment with another departmentWorkload–Range 300-7000 samples pa–criteria – by request, abnormal RCI, name. Not always identified as antenatal specimens–further testing for Hb variants – range of locationsResults –small number of cases identifiedReporting– time to process and issue result – up to 16 days. –May issue interim report pending result of rare thal/unusual variant–9 have identified role that ensures follow up action is taken
Laboratory questionnaire cont’d
Partner testing – Specimens may not be identified as such and are less likely
to be linked to the partner– Fewer labs have an individual responsible for ensuring that
follow up action is taken following partner testing– 2 laboratories can generate a list of results that remain
outstandingOrganisation
– Not all CPA accredited (1 conditional)– 10 have named individual responsible for
haemoglobinopathy screeningLiterature and cards
– 8 issue literature and status cards with results
Issues and themesHaemoglobinopathy services• Policy and practice variable• Lack of clarity around leadership roles and responsibilities• Lack of effective systems and processes, including IT• Lack of specialist haemoglobinopathy screening expertise
Wider aspects raised at site visits• Clarity around national v local responsibilities/ systems and
processes e.g. education/standardised request forms/administering FOQ
• Major workforce, operational and resource issues around requirement to book women by 8 weeks – education, service redesign and additional human and physical resources
• Inequity – CVS/timescales• Challenge of engaging specific population groups –
ethnicity/deprivation• Interpretation services – availability and cost• QA – reliance on manual systems for many board areas