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  • Gryphon Myers
    Gryphon Myers

    Health-Related Quality of Life in Celiac Children on Gluten-Free Diet

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: CC - Cuito Cuanavale

    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.

    Photo: CC - Cuito CuanavaleIn 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 rated their HRQoL surprisingly high, with a median score of 92/100 (85 points for mental health, 95 for social health and 100 for physical health). Sex and age did not show any significant correlation, though years since diagnosis showed slight correlation (children rated themselves higher the longer it had been since disease onset). Children who were younger at diagnosis also rated themselves higher, which is likely because young children have not grown accustomed to gluten-containing foods, and thus miss them less. It is also likely that children closer to adolescent age have a harder time accepting their 'otherness' due to their psychological development.

    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.

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    Celiac disease is a chronic failure so children know how to handle the situation. Therefore parents must let their children face the problem themselves instead of underestimating them.

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    I have two boys that have celiac disease. One also has diabetes type 1 and ulcerative colitis. Both found out that they had celiac disease in their teens. It has greatly impacted them, as both have negative thoughts about food. They often prefer not to eat food at all rather than eat gluten-free food because of its taste and texture. One just eats food with gluten in it anyway, stating he 'doesn't care'. I find your article and other such statements that children just get over it annoying. Have you ever though perhaps the children didn't know to do the surveys correctly or didn't want to be too negative?

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    Posted

    I have two boys that have celiac disease. One also has diabetes type 1 and ulcerative colitis. Both found out that they had celiac disease in their teens. It has greatly impacted them, as both have negative thoughts about food. They often prefer not to eat food at all rather than eat gluten-free food because of its taste and texture. One just eats food with gluten in it anyway, stating he 'doesn't care'. I find your article and other such statements that children just get over it annoying. Have you ever though perhaps the children didn't know to do the surveys correctly or didn't want to be too negative?

    The article was not written to suggest that children should just "get over it", but rather to report findings that they are often more capable of dealing with celiac disease than their parents expect/perceive.

     

    As for error: as with any self-report study, there is always that possibility, but keep in mind that the children's scores were averaged to produce the net findings of the study. It is highly unlikely that a majority of the children were confused or felt the need to respond a certain way. The DISABKIDS questionnaire has also proven itself as a reliable research method specifically for children with health concerns, so it is unlikely that it was too difficult or confusing for them.

     

    In your sons' cases, their situation actually fits the study's findings well: they found out in their teens, which is when children seem have the most trouble dealing with it.

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  • About Me

    Gryphon Myers recently graduated from UC Berkeley with a degree in interdisciplinary studies, research emphasis in art, society and technology. He is a lifelong vegetarian, an organic, local and GMO-free food enthusiast and a high fructose corn syrup abstainer. He currently lives in Northern California. He also writes about and designs video games at Homunkulus.

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