There have been several studies of celiac disease sufferers and health-related quality of life (HRQoL), but few of these studies have focused on children. Since diseases that develop through childhood (as celiac disease often does) usually negatively impact physical, social and psychological development, it is important to determine the extent to which celiac children suffer as a result of the disease.
In the present study, 160 celiac children (55 males and 105 females) were given questionnaires to assess mental health, social health and physical health over the four weeks prior to when the test was taken. Children were divided into three age groups: 8-11 years, 12-15 years and 16-18 years. Parents were given a proxy version of the questionnaire to assess their children. Questions came from the short version of the DISABKIDS questionnaire (a well-validated research method used for different chronic disease diagnostic groups). Age and severity of disease at onset were examined to determine if these factors influenced self-valuation later in life.
Children with more severe symptoms at onset rated their HRQoL higher than children who had more mild symptoms, or were asymptomatic at onset. This is likely because more symptomatic children are able to perceive more of a dramatic change in their overall health after starting on gluten-free diet. They feel relatively better, so they rate themselves higher.
Parents tended to rate their children's HRQoL lower than then the children themselves did. This underestimation is probably a result of parental worrying, guilt and/or sense of responsibility. Parents whose children were younger at onset of disease, or had lived with the disease longer tended to judge their children's HRQoL more accurately.
This study suggests that children adapt well to celiac disease, and that parents tend to overestimate the negative impact the disease has on their children. At risk of overtreatment of the psychological, social and physical impacts of the disease, it is important that parents of celiac children let their children be heard about their perceived quality of life.