Leicester’s ICC Clinic

Getting to the HEART of the matter: ICC CLINIC – Leicester

I'm Dr. Harshil Dhutia, consultant cardiologist and medical lead for the JHMT and runs the adult ICC clinic at Glenfield Hospital, University hospitals of Leicester

As part of SADS Awareness Week 2020 – I'll be giving you an insight into the role of a Glenfield's ICC Clinic.

The sudden death of a young individual is a tragic and highly emotional event. Apart from the devastation within a family unit, the sudden nature of the event and the loss of decades of life have a lasting impact on friends, peers, and both the lay and medical communities.

How common is sudden cardiac death in the young?

The reported frequency of sudden cardiac death in the young (14-35 years) is approximately 1 in 50,000. Deaths due to cardiovascular disease are the leading cause of non-accidental deaths in this age group.

What are the causes of sudden cardiac death in the young?

Common causes of young sudden cardiac death include several inherited cardiac conditions affecting the heart structure or heart electrical system, and some acquired and congenital conditions.

Other Common Questions

What about genetic testing?

Genetic testing can be offered to patients with a definite or probable ICC diagnosed clinically. Genetic counselling is an important part of this process. Currently, genetic testing is not performed for diagnostic purposes because not all patients with a clear clinical diagnosis will have a genetic alteration identified. In some ICC, genetic testing can guide therapeutic decisions (e.g. Long QT syndrome) and prognosis (dilated cardiomyopathy).

What about the rest of the family?

ICCs can run in families. For most ICCs, there is a 50% chance that a family member of a patient will harbour the same condition (clinical or genetic diagnosis). Therefore, it is routine practice for first degree family members of patients with definite or probably ICC to be evaluated in the ICC clinic. For those under the age of 16, assessment in paediatric cardiology services is recommended.

Genetic testing can be offered to relatives of those patients who have a genetic alteration identified. This can be helpful as can guide the need for on-going clinic surveillance and the frequency of surveillance.

If I have a positive genetic test, will I develop the clinical features of the ICC?

This is one of the challenges with genetic testing in ICCs. We know that two patients with the same genetic alteration can exhibit different levels of clinical features of the ICC (we call this variable expressivity). Additionally, we cannot readily predict when the clinical feature of an ICC develops in a patient with a confirmed genetic alteration (we call this incomplete penetrance)

Can I exercise with an ICC?

The aim of the ICC clinic is to support patients in having as normal a quality of life as possible including exercise participation. Restrictions on exercise depend on the type and severity of ICC, the symptoms the patient experiences, the type of sport being undertaken and the level at which the sport is being undertaken (e.g. competitive vs recreational). Currently, most restrictions apply to competitive sport but with better evidence, there is now a growing trend to relax some of these restrictions to a degree and also encouragement to include the patient in the decision-making process (shared decision making).

I have an ICC. Should I have children?

If you have a faulty gene known to cause ICC, then there's also a 50:50 chance you could pass it on to each of your children. Most inherited cardiac conditions follow this pattern; there are rare exceptions when a particular faulty gene can only be passed on by a mother. However, it is very difficult to predict how passing on the gene will affect them. Pre-pregnancy counselling and monitoring of women during pregnancy is an important part of the ICC patient journey.

How is JHMT involved in ICC services in Leicester?

JHMT is proud to have a long standing partnership with University hospitals of Leicester. In addition to running an annual SADS Awareness Week and Conferences for medical practitioners in affiliation with the hospital trust, JHMT have funded a bereavement liaison officer to support relatives after the tragedy of sudden cardiac death in a family member.

Furthermore, JHMT is the process of funding a dedicated specialist ICC nurse to help develop a state of the art service for patients and families in Leicestershire and the east Midlands.


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