Oral Quality of Life (QOL) Agreement between Caregivers and Ectodermal Dysplasia Affected Children

December 2007
By Clark Stanford, DDS, PhD, University of Iowa

A second project that we are interested in is determining the impact, if any, of the dental condition(s) on the "Quality of Life" of individuals affected by ED. This is a study that has been run by Ms. Cindy Asmussen (University of Iowa) since 2003. The purpose of this study is to evaluate the agreement between a parent’s perception of the child’s "quality of life" (QOL) and the affected children and young adults self reported QOL determined by the child completing a survey designed for their level of understanding.

To date, we have a large number of affected individuals who have completed the surveys. For instance, we have 32 children between 6–10 years of age and 35 young adults age 11–19 years completing a survey. Each child’s parent or caregiver also completed a parental questionnaire of their perceptions of the child’s QOL.

Our study looked at four areas of impact on the child’s QOL. These are: (1) the ability to chew and function, (2) perceptions of functional limitation, (3) emotional well being and (4) social well being, as it relates to the dental condition. It is interesting that we consistently are finding that there is often little agreement between what parents perceive their child’s QOL is and what the child reports. For example, the child would often report recurring mouth sores which the parent was not aware of.

We did observe a moderate agreement for parents being aware of sleep disturbance due to a dental condition but little agreement for any other measure of perceived function in either age group. In regards to emotional well–being, we observed moderate agreement between the 6–10 year olds and their parents for his/her appearance but again little agreement for other measures of emotional well being. Finally, in regards to social well being (e.g., how your child interacts with other kids) there was again little agreement between perceptions of impact on social issues at school and the dental conditions the child had.

It is important for parents to understand this is an ongoing study. We have learned that in order to be accurate, especially in our interest to understand how dental care such as denture or implants affects QOL, we need to ask the affected individual directly. It also should encourage parents to continually talk to their children about their dental condition. Many times when other children in school are also missing multiple teeth it is not a big issue but as the child gets older the affected individual may suddenly feel different and providing a solution for replacing teeth may tremendously help the young adult though the difficult transition to adulthood.

The entire investigative team thanks all the families for their time and energy in helping us with both of these studies.

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