19 June 2012 Part 1 of this report discussed the number of episodes of pneumonia and lung infections experienced by children and adults with MECP2 Duplication Syndrome. In this part, information is presented on the severity of these infections and the impact on the individual.
Question 3 asked “Approximately how many times has your child/family member required hospitalization for pneumonia or a lung infection?”
The responses for 89 individuals are included in the chart below. This excluded the 9 individuals who were reported to never have pneumonia. In addition, 5 other surveys did not include an answer to this question.
Four (4.5%) were reported to have never been hospitalized. These four ranged from 1 year old to over 32 years old. The two remaining individuals were 5 and 21 years old. The oldest of these four had experienced four bouts of pneumonia and the 21 year old had experienced more than 1o bouts of pneumonia. In the absence of more detailed information it is difficult to draw conclusions but it would appear that respiratory infections may be more easily managed in these individuals than in some of the others.
The most frequent response reported 19 (21.3%) individuals who had been hospitalized 11 or more times with pneumonia or lung infections. They ranged in age from 6 to 23 years.
The median number of hospitalizations was 4. Half of the response indicate 4 or less and the other half indicated 4 or more hospitalizations.
Question 4 asked “If your child/family member has been hospitalized with pneumonia or a lung infection, please answer this question. Approximately what is the longest period of hospitalization has your child/family member experienced due to pneumonia or lung infection? “ The chart below indicates the pattern of responses.
Short stays of 2 or 3 days were reported by 12.8% of respondents The most frequent response was more than two weeks with 35 (40.7%) of respondents choosing this length of stay. In addition (12.8%) had at least one hospital stay of a month or more for pneumonia or a lung infection. Studies from various countries suggest that typical length of hospitalization for pneumonia is 5 to 9 days.
As seen in the following chart, 50 (55,6%) of the individuals reported in this study had at least one admission to an intensive care unit for pneumonia or a lung infection.
In addition, a number of responses indicated that respirators and tracheotomies were required as are discussed in Part 3: Treatments.