Sepsis and Intellectual & Developmental Disabilities

People with an IDD frequently have overall poorer health and a more challenging time getting adequate healthcare. Their life expectancy is also lower than adults without an intellectual disability, although it is rising. For example, in 1960, people with Down syndrome rarely lived beyond childhood, with an average life span of around 10 years. By 2007, the life expectancy was at 47.

People with an IDD can be at increased risk for developing:

• Cancer, especially leukemia, particularly among those with Down syndrome, and gastrointestinal (gut) cancers
• Heart disease, sometimes because they have congenital heart conditions (they were born with them)
• Respiratory disease

In addition to being at risk for certain conditions, people with an IDD, especially those who cannot communicate, may be unable to tell their caregivers if they have pain or aren’t feeling well. They might not be able say that their ear or tooth hurts, or it hurts when they urinate or cough – all possible signs of an infection. They may be unable to explain that their skin is so itchy that they can’t stop scratching, which can break the skin. A change in mental status (confusion or sleepiness) may not be obvious at first – a possible sign of sepsis. So, when they do become ill enough that someone notices it, the illness may have progressed to the point that it’s harder to treat.

In cases of sepsis, where every hour counts, valuable time may be lost. According to a study in Australia: “…circulatory system deaths and infections were the two leading causes of potentially avoidable deaths, followed by cancer [in individuals with an IDD].”

Regular check-ups are part of a preventative healthcare plan, but getting some adults with an IDD to a doctor may not be easy. First, caregivers must find a physician comfortable working with adults with IDDs and whose office can accommodate any special needs. Once the patient does attend an appointment, depending on the severity of the IDD, it may be difficult for the healthcare staff to perform routine or follow-up tests.

A good example of how this affects people with an IDD is the increased cancer rate, likely because of the reduced cancer screening. For instance, colon cancer screening is less frequent in this population and women with an IDD tend to have fewer screening mammograms for breast cancer or Pap tests to detect cervical cancer.

Poor dental health is also a possible health issue. Higher rates of dental cavities and fewer visits to the dentist can contribute to infections, which can lead to sepsis. Over a third of adults with IDD have unhealthy teeth and gums.

Communication is the key to getting good healthcare for anyone, especially for people living with an IDD. Ideally, the person who is at risk or is ill would communicate with the staff. Often though, it is the caregiver who must take on that role.

Here are some tips if you are advocating for someone with an IDD:

• Check with the office if you can have a longer than usual appointment. This would allow for the extra time it may take for the examination and questions.
• Ask for consistency by having the same doctors and other professionals for each visit.
• Keep a health journal that lists the patient’s medical history, medications, treatments, and any other information you think is essential. Bring this journal with you to all appointments.
• If possible, bring any medications to the appointment, especially if it is a new healthcare professional. If you can’t bring the medications, bring a pharmacy printout.
• Encourage the healthcare team to address the patient directly instead of you, even if the patient doesn’t seem to respond.
• If the affected person can communicate, allow them to, giving them the opportunity to share their feelings and concerns.
• Ask the healthcare team if they have simplified or visual information pamphlets.

Children with an IDD, whether they need considerable support or can function fairly independently, require special consideration and guidance if they are sick or admitted to the hospital, especially for serious conditions like sepsis or septic shock.

Sepsis Alliance created two guides, one visual and one more text-based, to help healthcare professionals when they work with this population and their parents or guardians. These guides, found below, can be shared with your child’s healthcare professional to help them better provide care and a sense of control in an often frightening situation. They can help children better understand what is going on around them. The words and photos can be a starting point for you to discuss how they feel, what they need to know, and how you will help them.