Hepatitis

What is hepatitis?

There are several forms of hepatitis (inflammation of the liver). Hepatitis A, B and C are contagious forms of hepatitis caused by a virus. They can cause acute illness (acute hepatitis) but the virus can also lie dormant in the liver for years (chronic hepatitis).
Other forms of hepatitis and liver damage are non-alcoholic steatosis (fatty liver disease), and liver damage due to alcohol abuse or the use of medication or drugs.  ³⁰¹

What are the complaints associated with hepatitis?

Not everyone becomes ill after being infected with a hepatitis virus. The course of the disease can also vary depending on the virus. Fatigue and nausea may be seen. Other symptoms are fever and pain in the upper right part of the abdomen. The white of the eye may turn yellow and there may be skin complaints: the skin can also turn yellow (jaundice). The urine may be dark (the colour of strong tea) and the colour of the stools may be light (like putty). Poor appetite may lead to a loss of weight and there may also be gouty symptoms.

In non-viral hepatitis, liver damage may manifest itself as jaundice in the way described above, but also as general symptoms such as fever, rash and general malaise.  ³⁰²

People with intellectual disabilities sometimes find it impossible to communicate these symptoms. The people around them may then notice only a change in behaviour.

How common is hepatitis in the general population?

Hepatitis has to be reported and so we have a fairly accurate picture of the number of new cases annually. The incidence of hepatitis A in the Dutch population is declining: about 900 new cases were reported in 2003, and that number fell to 109 in 2013. The incidence of hepatitis B has fallen slightly in the Netherlands. In 2013, 1267 new cases of hepatitis B were reported: 140 cases of acute hepatitis B and 1127 cases of chronic hepatitis B. The number of reported cases was 1877 in 2003. The incidence of acute hepatitis C in the Netherlands has increased in recent years: 15 cases of acute hepatitis C were reported in 2003 and 64 in 2013. The incidence of hepatitis E in the Netherlands is increasing: there were 67 reported cases in 2013 and 205 in 2014. Elevated transaminase levels (indicating liver malfunction) occur in an estimated 1 to 4% of the general population. The most common reason is chronic alcohol use.  ³⁰²

How common is hepatitis in people with intellectual disabilities?

The reports of hepatitis required by law do not state whether people have an intellectual disability. There are therefore no current figures indicating how many people with intellectual disabilities contract hepatitis annually in the Netherlands. People with intellectual disabilities are known to be at risk of hepatitis B infection (HBV).

An old study of hepatitis B in people with intellectual disabilities in the Netherlands found that 10.3% of the men were carriers.  ³⁰³

A later study of people with intellectual disabilities found that 3.8% were carriers and that the disease had developed in 28.8%.  ³⁰⁴

In 2002, vaccination was recommended for all people with intellectual disabilities in intramural facilities and staff working with HBV carriers or at risk of contact with infected blood, children with Down syndrome, all residents and staff caring for HBV carriers in small-scale residential facilities, visitors and carers in day facilities when HBV carriers are unable to comply with hygiene measures.  ³⁰⁵

This recommendation was adopted at the national level (see national hepatitis centre). It has been almost universally implemented and a recent study therefore found a sharp reduction in the percentage of carriers among people with intellectual disabilities: 1.1%.  ³⁰⁶

It is also known that people with Down syndrome have a higher risk of hepatitis B infection than people with intellectual disabilities but no Down syndrome. ³⁰⁷ ,  ³⁰⁸

Although only people living in an institution are vaccinated in the Netherlands, Irish research has shown that people with intellectual disabilities who live in their own homes and follow a day programme have an increased risk (11%) of hepatitis B.  ³⁰⁹ The risk factors are the same: living in close proximity and poor personal hygiene (problems with complying with instructions).  ³¹⁰

1% to 4% General population 1.10% People with intellectual disabilities