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Does Atopic Dermatitis Affect a Family’s Quality of Life as much as the Child's Skin?
October 24, 2008
In a society so obsessed with physical appearance and perfection it comes as no surprise that a condition affecting an organ that is always in view would affect one’s quality of life. A child with the disease does not only have physical pain from their symptoms, but also emotional pain as it affects their physical appearance due to the oozing sores and cracked skin. It is difficult to grow up with a skin disease that is easily aggravated and can have negative affects on your self esteem, behavior, and attitude. It also affects their families who have to deal with their loved ones discomfort or pain. Several studies have been done to determine the affect of atopic dermatitis on the quality of life of those afflicted with the disease and their families
What is Atopic Dermatitis?
Atopic Dermatitis commonly known as eczema is a non-contagious disease characterized by chronic inflammation of the skin. The definition given by the National Institute of Arthritis and Musculoskeletal and Skin Diseases says “In atopic dermatitis, the skin becomes extremely itchy. Scratching leads to redness, swelling, cracking, ‘weeping’ clear fluid, and finally crusting and scaling.” The disease seems to go through cycles of extreme irritation and times when it is fairly clear. There is no cure for the disease, but doctors say that most children will ‘grow out’ of it or the severity will decrease over time.
Things that Trigger Flare Ups:
Ways to Minimize Flare-Ups:
Terminology and Abbreviations:
AD – Atopic dermatitis
CIAD – The Childhood Impact of Atopic Dermatitis
PCA – Principle Components Analysis;
PIQoL-AD - The Parents' Index of Quality of Life – Atopic Dermatitis
QoL – quality of Life
PRO – Patient Reported Outcome.
Several studies have been conducted to find the effectiveness of different medical treatments for AD with a secondary goal of evaluating the QoL of those with AD and their families
One study called “The benefit of Pimecrolimus (Elidel, SDZ ASM 981) on Parents’ Quality of Life in the Treatment of Pediatric Atopic Dermatitis” had such primary and secondary aims using Elidel cream. The study had two parts. The first was a six week treatment, double blind and randomized where 403 patients from 2 to 17 years with AD were used 267 received Elidel and 136 received the placebo. The second part gave the medicine to all the patients for six months. The QoL of parents was evaluated using PIQoL-AD which had several statements in which parents responded if the statements applied to them. The parents were evaluated qualitatively at the baseline, at 6 weeks and at 6 months. At the end of the entire study all of the parents showed significant improvement in their QoL after using the Elidel cream. These results showed that when the children’s AD was not under control and more severe, their and their parents QoL was much lower and as the experiment continued with use of the Pimecrolimus cream was used and the AD was under control their QoL was significantly better.
A second study was done to develop a method to measure the quality of life of adults with AD internationally. First, in-depth qualitative interviews were held with those afflicted with AD to evaluate different aspects of their lives such as “mental and emotional stimulation, physical and emotional stability, security, sharing and belonging, self-esteem, personal development and fulfillment.” These interviews were used to make an instrument reliable enough to use on all other participants in the future. The study also utilized the Rasch model as a means of measuring QoL quantitatively using qualitative responses.
Another study was done to evaluate the quality of life in infants and children with atopic dermatitis. The Rasch model was also used in this study to determine the QoL. Items included in the study were phrases such as ‘I have no time to relax’ and ‘I worry about the way he looks’ in addition ‘he is very moody’ and ‘he is very demanding’ which correlated with parents QoL. Again this study
Based on the studies it is clear eczema can affect one’s life as well as their loved ones. These studies established a way to turn a qualitative interview into quantitative data using the Rasch Model as a way to standardize all interviews about QoL with AD. This showed that many parents and young people suffering from AD had the same feelings as far as how AD was affecting their lives. The parents were affected by their children’s lack of comfort, and children were more irritable because of their constant discomfort. The studies also showed that when the eczema was more under control using Elidel cream everyone’s QoL improved. There is a clear correlation between the improvement of a child’s skin and the improvement of their and their families QoL.
someone who suffers from atopic dermatitis, the disease affects more than just
your skin. It is painful, embarrassing, and ugly which causes problems with
self-esteem. Most of your time is spent scratching or hiding your skin from
your friends and family. It makes you very irritable especially when people try
to keep from scratching because most of the times it is the only means of
reducing the itch. Parents can only do so much to comfort their children and
with such a lack of knowledge it makes it nearly impossible to look forward to
an end. With steady use of topical medication the quality of life of parents
and their children can be improved while dealing with atopic dermatitis.
McKenna, S.P., Doward, L.C., Meads, D.M., Tennant, A., Lawton, G., & Grueger, J. (2007). Quality of life in infants and Children with atopic dermatitis: Addressing issues countries in multinational clinical trials. Health and Quality of Life Outcomes,5. Retrieved October 1,2008, from BioMed Central Ltd.
Pauli-Pott U, Darui A, Beckmann D: Infants with atopic dermatitis: maternal hopelessness, child-rearing attitudes and perceived infant temperament. Psychother Psychosom 1999, 68:
Whalley D, Huels J, McKenna SP, van Assche D: The benefit of Pimecrolimus (Elidel ®, SDZ ASM 981) on the quality of life of parents in the treatment of paediatric atopic dermatitis. Pediatrics 2002, 110:1133-6.
Whalley D, McKenna SP, Dewar AL, Erdman RA, Kohlmann T, Niero M, Cook SA, Crickx B, Herdman MJ, Frech F, Van Assche D: A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD). Br J Dermatol 2004, 150(2):
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