screening for the haemoglobinopathies,(neonatal and antenat

8/14/2019 Screening for the Haemoglobinopathies,(Neonatal and Antenat

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September 2007

Screening for the

Haemoglobinopathies

Follow-up and Counselling in

Lambeth, Southwark and LewishamShirley Samuel

Collis Rochester-Peart, Service Co-ordinator/ Specialist Nurse Counsellor September 07


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September 2007

Introduction

Overview of service models used to follow-up ante-natal and neo-natal screening results

Explain our approach to counselling

Size of population

Screening for the Haemoglobinopathies

Follow-Up and Counselling



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September 2007

Community-based, comprehensive nursing service

Nurse-led programmes case management; genetic counselling and screening;health promotion and training; neonatal follow up of newly diagnosed babies.

Three borough (Lambeth, Southwark and Lewisham) service

Team of ten specialist nurses, supported by 4 Business Support staff

Aim to promote universal screening and optimise timeliness in offering geneticcounselling and reproductive choices for couples

Screening for the HaemoglobinopathiesFollow-Up and Counselling



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September 2007

Universal Antenatal Screening

Results received from all three laboratories on a weekly basis

The Centre informs women of their results and invites them for geneticcounselling

Genetic counselling sessions held at least three times each week


Collis Rochester-Peart, Service Co-ordinator/ Specialist Nurse Counsellor


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September 2007

Screening for the HaemoglobinopathiesFollow-up and Counselling

Counselling ApproachCounselling Approach

Client centred approach for both traits and affected cases catering for their culturaland language needs

Assess levels of anxiety DistressGive careful, sensitive explanation of inheritance.Reassure re health status if carriers.

On-going assessment of parents acceptance of diagnosis if affected and referral

Environment -Highly tensed interaction, very emotive environment

Facilitate according to parents response



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September 2007

Universal Antenatal Screening Programme

The Counselling Session

Why are they there? Focus clients on the reason for inviting them forgenetic counselling

What is the result about? Inform clients of the result with its individual andgenetic significance




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Use of inheritance pattern to explain genetic significance

Explore the implications with clients

Encourage partner screening

Outline options, including prenatal diagnosis




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September 2007

Reports sent to midwives and General Practitioners

PND cases - refer to local hospital of booking

Continued support irrespective of PND outcome




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September 2007

Non-directive

Supportive



Counselling ApproachCounselling Approach


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September 2007


Follow-up and Counselling

831123664013661795Totals

Not including 34 ATNE1214768

267

336July-Aug 08


416

537Apr Jun 08


418

525Jan-Mar 08


265

397Oct Dec 07

7 -No Of AtRiskCouples

6 -No Of PartnersWith HbVariant

5 -No PartnersScreened

4 -No Of Women WithMajor HbDisorder

3 -No Of Women WithConfirmed Traits

2 -No ResultsReceived

1 -Time Frame

LAMBETH, SOUTHWARK AND LEWISHAMHaemoglobinopathy Screening of Women Oct 07 August 08


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September 2007

CHALLENGES

Informed Population Preconceptual screening

Timeliness of Screening

Uptake of genetic counselling Education of Health Professionals

Risk Management Issues Improved IT Links

Screening for the Haemoglobinopathies Follow-Up

and Counselling


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September 2007


Universal Neonatal Screening

4 Groups:1. Normal, confirmed traits

2. Transfused babies

3. Recall of non-affected babies carriers of unusual traits

4. Recall of affected babies



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September 2007

Screening for the HaemoglobinopathiesFollow-up and Counselling

Result group 2Result group 2: Transfused Babies

Survival checks made before writing

to mothers

Repeat testing is requested

Results from repeat testing sent to parents, GP

Kings notifies Child Health Computer



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September 2007


Follow-up and Counselling

Result Group 3Result Group 3: Recall of non-affected

Carriers of unusual traits

Service Co-ordinator sends letters to mothers informing them ofpossible results and need for confirmation by repeat testing; letteralso invites mothers to contact co-ordinator for further informationand genetic counselling , if required.



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Result Group 4:Result Group 4: Affected babies Service co-ordinator receives result from laboratory, follow up delegated

to named SN on a borough basis

Home visit arranged with Familys Health Visitor to inform parents of the

result; GPs also informed of possible result and pending home visit

On-going support and counselling commence by SN; referral to local

hospital



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September 2007


C ll R h P S C d / S l N C ll /L b h

ConclusionConclusion

Timeliness is an important factor

Multi-disciplinary approach and communication in providing a

comprehensive genetic and neonatal follow up service

Cultural beliefs and values can influence decisions

Acceptance ofclients decision

screening for the haemoglobinopathies,(neonatal and antenat

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