This post is a follow up to:
- Results of Pneumonia and Lung Infection Poll: Part 1
- Results of Pneumonia and Lung Infection Poll: Part 2 Severity
- Results of Pneumonia and Lung Infection Poll: Part 3 Treatment
Question 9 asked Has your child/family member with MECP2 Duplication Syndrome ever developed pneumonia ….While in the hospital for another reason? …. Within the first four days after being discharged from the hospital? ….Within the first four day after a surgical procedure? ….That your Doctor referred to as hospital-acquired pneumonia?
There were two reasons for asking this question. First, and most obvious was to determine if hospital visits pose a risk to this population. Secondly, since hospital acquired pneumonia is a particular problem for individuals with compromised immune systems, a high incidence of hospital acquired pneumonia could provide a clue to the kinds of infections experienced and whether there is increased vulnerability to bacteria or viruses.
As seen in the chart below, hospital acquired infections appeared to be common among individuals with MECP2 Duplication Syndrome.
More than half (57.5%) of the 87 responses answered YES to at least one of these questions. More than 4 in ten (41.3%) developed a lung infection within four days after a surgical procedure. Almost one-third (32.6%) developed pneumonia while in the hospital for some other reason.
Of course, there are other factors besides viruses and bacteria that may result in the development of pneumonia in a hospital setting or after discharge, but this high incidence suggests the need for further study. It also suggests the need for consideration of special precautions. In situations where hospitalization may not be really required, it may be a reason to avoid admittance. In situations where hospitalization is necessary, it may be a reason for exercising the best precautions possible against cross infections.
Some general conclusions from this poll on pneumonia and lung infections
Clearly this poll makes it clear that most if not all children and adults with MECP2 Duplication Syndrome experience a frequent cases of pneumonia or lung infections.
These individuals not only appear to be at higher risk for developing lung infections, they also appear to have greater severity and poorer treatment outcomes.
The extent of increased vulnerability does appear to vary both in frequency and severity from individual to individual.
Some, data in comments also suggests that at least some individuals improve in their resistance as tehy get older, with fewer infections and better response to treatment.
The report of increased frequency and severity are consistent with published case reports that report a high incidence of pneumonia and report pneumonia as a frequent cause of mortality among individuals with MECP2 Duplication Syndrome.
These results are consistent with a reduced immunological response to infection, but without data on the microorganisms involved, it or other lab data, it is difficult to definitively rule out other factors.
Because pneumonia is a major contributor to morbidity and mortality in this group, because it is a serious threat to quality of life, and because it is contributes to long and expensive hospitalizations, it is important that future research be undertaken to clarify the factors that contribute to increased risk, suggest strategies for prevention, and lead to more effective treatments for these individuals.