Healthcare Publications

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Tiny Tickers Publications

1. Pathway: Prenatal Congenital Heart Disease: a new beginning, Feb. 2010 (this link opens a 510kb PDF)
Summary of recommendations for an integrated care pathway to improve standards of care in prenatal congenital heart disease, with information from CCAD (Central Congenital Audit Database) on UK detection rates.

Alternative "tiny" link: http://tinyurl.com/TTCoHD or http://tiny.cc/TTCoHD (opens the same PDF as above)

This publication was provided to the review of children's heart surgery - "Safe and Sustainable: The Need for Change", to improve understanding of prenatal care. 

This document is a summary of an earlier document: Antenatal CoHD Pathway (PDF, 440kb) July 2009 - with issues and recommendations for an integrated care pathway to improve standards of care in prenatal congenital heart disease - created from a RCOG convened workshop held in 2008 with 30 invited professionals.

2. Training CD: Tiny Tickers Fetal Heart Scan CDs
Link to information about our fetal heart scan CDs, which complement our "hands-on" fetal heart training.

CD1 can be downloaded (via 3rd party download websites);  CD2 can be previewed.

3. Online Article:  "Examination of the fetal heart – making a diagnosis and avoiding pitfalls", 2007
(old link:  http://tinyurl.com/diagnosis2007)

4. CVC:  Also see Tiny Tickers CVC Publications (extracts, below)

Related Publications & Resources

Think HEART

Save a baby's life - signs of heart disease - especially in the first 3 weeks after delivery

Reference: Delayed diagnosis of congenital heart disease worsens preoperative condition and outcome of surgery in neonates.
Heart. 2006 Sep;92(9):1298-302. Epub 2006 Jan 31.
Brown KL, Ridout DA, Hoskote A, Verhulst L, Ricci M, Bull C.
Cardiac Unit, Great Ormond Street Hospital for Sick Children, London, UK. BrownK@gosh.nhs.uk
http://www.ncbi.nlm.nih.gov/pubmed/16449514

FASP (Fetal Anomaly Screening Programme) Publications

http://fetalanomaly.screening.nhs.uk/onlineresources - online resources to support the '18+0 to 20+6 weeks fetal anomaly scan - National standards and guidance for England 2010'

http://fetalanomaly.screening.nhs.uk/reports - a list of all reports by the Fetal Anomaly Screening Programme (England)

http://fetalanomaly.screening.nhs.uk/fetalanomalyleafletsforprofessionals - leaflets for professionals

Also see our recommended 5 Transverse View screening protocol (a practical proven way to screen the fetal heart for most forms of CoHD), which also includes results from the FASP Ultrasound Survey 2008.

NICE (National Institute for Clinical Excellence) Antenatal Care

http://guidance.nice.org.uk/CG62 - list of publications regarding antenatal care and screening  (updated 2008)

http://www.nice.org.uk/guidance/CG62/NICEGuidance/doc - 1.7 Screening for Fetal Anomalies & Appendix E (economic model) - refs. below:

• 804. Ritchie K, Bradbury I, Slattery J, et al. Economic modelling of antenatal screening and ultrasound scanning programmes for identification of fetal abnormalities. BJOG: an International Journal of Obstetrics and Gynaecology 2005;112(7):866–74.
• 1016. Bonnet D, Coltri A, Butera G, et al. Detection of transposition of the great arteries in fetuses reduces neonatal morbidity and mortality. Circulation 1999;99(7):916–18.
• 1017. Bonnet D, Jouannic JM, Fermont L. Impact of prenatal diagnosis on perinatal care of transposition of the great arteries. Ultrasound in Obstetrics and Gynecology 2003;22(S1):66–7.
• 1018. Kumar RK, Newburger JW, Gauvreau K, et al. Comparison of outcome when hypoplastic left heart syndrome and transposition of the great arteries are diagnosed prenatally versus when diagnosis of these two conditions is made only postnatally. American Journal of Cardiology 1999;83(12):1649–53.

http://www.nice.org.uk/aboutnice/qualitystandards/qualitystandards.jsp - list of quality standards

CCAD (Central Cardiac Audit Database)

CCAD Paediatric Congenital Heart Disease statistics (see "Antenatal Diagnosis" for percentage of infants requiring treatment for CHD in the first year of life who were diagnosed antenatally).  NEW:  Quick link to Antenatal Diagnosis CCAD page on new NICOR website (2012).

BCCA (British Congenital Cardiac Association)

Fetal Cardiology Standards (2010) - Old BCCA standards for fetal cardiology service in a tertiary centre (i.e. cardiac centre) - BEING UPDATED!

Key reference documents (index)

Review of Children's Congenital Heart Surgery: Safe and Sustainable

Commissioning Safe and Sustainable Specialised Paediatric Services (part of www.specialisedservices.nhs.uk)
Also see:  www.childrens-heart-fed.org.uk |  www.dh.gov.uk
There is also a review of Adult CHD surgery.

Antenatal Screening Wales

Screening standards

Consultation on the future of the National Congenital Anomaly System

www.ons.gov.uk/about/consultations/consultation-on-the-future-of-the-national-congenital-anomaly-system/index.html

BHF (British Heart Foundation)

These cover a range of postnatal congenital heart conditions:

C1 Aortic Stenosis, C2 Coarctation of the Aorta, C3 Large Ventricular Septal Defect, C4 Pulmonary Stenosis, C5 Tetralogy of Fallot, C6 Transposition Great Arteries

Note: if the appropriate page does not open, search within the document list.

Tiny Tickers & CVC Publications

Tiny Tickers is a member of the Cardio & Vascular Coalition, a coalition of over 40 voluntary and professional organisations with an interest in promoting and protecting cardiac and vascular health in England.

1. Congenital Heart Disease Briefing Paper

With more people living with congenital heart disease (CoHD) than ever before, it is critical that quality services are made available to match the demand. Prepared by members of the CVC CoHD Working Group, this briefing is an exploration of these challenges, with recommendations to address the different concerns. Key issues and recommendations cover the patient pathway from antenatal diagnosis of CoHD to end of life care. 
Download the briefing here (PDF, 140k)

2. Destination 2020

EXTRACT from Section 6. "Addressing specific areas of need"

Measures are required to address key areas where targets have not yet been met or were outside the
remit of the existing NSFs. Priorities for further work in cardiac and vascular conditions include:
• Prevention in children
• Congenital conditions
• Emerging needs for acute conditions
• Emerging needs for chronic conditions
• Rehabilitation
• End of life care

Prevention in children

Following standards set in the Children’s National Service Framework,measures specifically devoted to
improving children’s long-term cardiac and vascular health are required.
The growing emphasis on prevention, early risk detection and treatment based on current risk factors
and genetic testing for conditions such as channelopathies (conditions that affect the movement of
ions through cell membranes) and familial hypercholesterolemia (inherited high cholesterol) means
that there will be a greater need for child specific services to deal expertly with young people.

• Future planning should include prevention and specialised services for children and young people with
cardiac and vascular conditions.This should extend the standards set in the Diabetes and Renal NSFs.
• Childhood prevention strategies aimed at tackling smoking, increasing physical activity and
improving diets are needed.
• Children, young people and families should receive high quality cardiac and vascular services that
are co-ordinated around their individual and family needs and take account of their views, as set
out in the NSF for Children.

Congenital conditions

Congenital heart disease (CoHD) is a defect in the structure of the heart and primary blood vessels
which is present from birth.Congenital conditions are different from acquired cardiac and vascular
diseases, as they are present at birth and require different treatment.The number of people affected
by congenital conditions is small compared to most other cardiac and vascular conditions.However,
this group of patients was not included in the CHD NSF and needs to be included in future planning.
CVC member charities report that services for CoHD patients are patchy.As a consequence, there is
variability in patient outcomes,with specialist services difficult to access in some parts of the country.
Care planning processes need to ensure patients have access to treatment in age appropriate,well
staffed, specialist centres throughout the course of their life.

Children

CoHD is the commonest birth defect, affecting approximately one baby in every 133 (or 5,000 babies
every year in the UK).About half of these havemajor and life-threatening structural heart defects,
requiring surgery and life-long follow-up.Congenital conditions should be addressed specifically,
because although some generalmeasures, such as provision of excellent treatment,will apply, there are
also specific needs that should bemet.Themajority (85%) of babies with CoHD are born to women with
no identifiable risk factors,whichmakes the case for whole population screening of pregnant women.
• A national policy/pathway to improve the diagnosis and management of CoHD is needed.
• Services for congenital cardiac and vascular conditions should be commissioned nationally.
• The audit of variations in outcomes in the management of CoHD should be strengthened and
measures taken where required to match the outcomes achieved in the best performing centres.
• Charities working in this area would like to see more specialist training for healthcare professionals
working with children with congenital heart and vascular diseases.
• Routine antenatal ultrasound screening should include examination of the fetal heart for major
congenital anomalies.National standards for screening should be introduced and audited to reduce
current variations.

Grown up congenital heart disease patients

80-85% of people born with CoHD now survive to adulthood,with an annual increase of 2,500 young
adults (Somerville, 2002). Evidence suggests that some adults are still being treated by paediatricians
due to the lack of specialist adult services,while others are seen in local adult cardiology centres where
there are varying levels of expertise in treating congenital conditions (Somerville 2002).
• A national structure should be developed for grown up congenital heart disease (GUCH) patients,
providing properly resourced and staffed specialist care in geographically appropriate centres.
These centres and their locations should take into account demand and critical mass,
implementing the centre structure defined in the NHS GUCH Guide (DH, 2006b).
• GUCH patients have a high prevalence of complex rhythm problems, so centres for these patients
must have ready access to sub-specialists with experience of managing these problems.

To link to the full PDF: Destination 2020 (PDF, 794kb) March 2009
See Chapt 6, Addressing specific areas of need, pages 18-20 for Congenital Heart Disease (extract shown above)