Kvalitet života dece i adolescenata sa celijakijom
Quality of life of children and adolescents with celiac disease
Author
Stojanović, BiljanaMentor
Vuletić, Biljana
Committee members
Đonović, Nela
Rađen, Slavica
Simović, Aleksandra
Metadata
Show full item recordAbstract
Uvod: Celijakija je autoimuna bolest, koja nastaje kod genetski predisponiranih osoba
kao posledica konzumiranja glutena i srodnih proteina. Kvalitet života uslovljen
zdravljem se definiše kao individualna procena bolesnika, koliko bolest i terapija
utiču na njegov fizički, socijalni ili emocionalni osećaj “dobrog”. Terapija celijačne
bolesti je stroga doživotna ishrana bez glutena.
Ciljevi: Ispitati kvalitet života dece i adolescenata sa celijakijom i dobiti
celovitu sliku o narušenosti fizičkog i psihičkog zdravlja kao i socijalnog
funkcionisanja. Ispitati uticaj uzrasta deteta u kome je postavljena dijagnoza
celijakije na uspeh terapijske dijete bez glutena. Ispitati značaj dužine vremenskog
perioda koji je protekao od pojave prvih simptoma bolesti do postavljanja dijagnoze na
uspeh terapijske ishrane i prolagođavanje deteta i porodice. Ispitati uticaj koji ima
oblik kliničke manifestacije bolesti na prihvatanje dijetalne ishrane bez glutena.
Istražiti koliki značaj ima ...stepen atrofije crevnih resica u bioptiranom materijalu
na uspeh terapije pravilnom bezglutenskom ishranom.Proceniti uspeh terapije dijetom
bez glutena na osnovu seroloških testova – antitela na tkivnu transglutaminazu IgA i
IgG. Ispitati značajnost razlike između subjektivnog doživljaja dece sa celijakijom i
njihovih roditelja o kvalitetu života koji vode uz kontrolisanu ishranu.
Metod: Sprovedena Studija je prospektivna, opservaciona. Ispitivanu grupu su činili
deca i adolescenti oboleli od celijakije uzrasta 5-18 god. lečena u Institutu za
zdravstvenu zaštitu majke i deteta Srbije „Dr Vukan Čupić“ na Novom Beogradu, i u
Univerzitetskoj dečjoj klinici u Beogradu, kao i njihovi roditelji radi analize
kvaliteta života. Kontrolnu grupu su činila zdrava deca i adolescenti uzrasta 5-18 god.
Zavisne varijable su činili: Skorovi upitnika (Pediatric Quality of Life InventoryTM –
version 4.0, PedsQLTM), ukupni SCARED skor, ukupni. MFQ skor, Skorovi upitnika
(Celiac disease–specific pediatric health-related instrument (CDPQOL). Istraživanjem je
obuhvaćen uzorak od (N=116) dece i adolescenata sa dijagnozom celijakije koji su na
bezglutenskoj ishrani minimum godinu dana.
Rezultati:Istražujući psihofizičko zdravlje i socijalno funkcionisanje dece i
adolescenata sa celijakijom ispitanici su pokazali na testovima nižu vrednost pet od
šest PedsQL skorova, izuzetak je Fizičko funkcionisanjekao i nižu vrednost pet od
šest SCARED skorova, izuzetak prisustvo socijalne anksioznosti. Statističku
značajnost dostiže razlika skora Socijalnog funkcionisanja između podgrupe
ispitanika sa celijakijom kojima je dijagnoza postavljena do druge godine koji imaju
niži skor u odnosu na podgrupu ispitanika sa celijakijom kojima je dijagnoza
postavljena od 13. do 18. godine. Analizirajući dužinu vremenskog perioda koji je
protekao od pojave prvih simptoma bolesti do postavljanja dijagnoze na uspeh terapijske
ishrane i prolagođavanje deteta i porodice utvrđene su statistički značajne razlike kod
Fizičkog funkcionisanja, Emocionalnog funkcionisanja, Psihosocijalnog zdravlja i
Ukupnog skora. Ukupan skor je statistički značajno najniži u podgrupi ispitanika sa189
celijakijom kojima je dijagnoza postavljena jednu godinu nakon pojave prvih simptoma. U
grupi ispitanika uzrasta od 13–18 godina utvrđene su statistički značajne razlike kod
skorova: U školi, Izlasci i socijalna događanja, Samopouzdanje i ukupan CDPQOL skor.
Statistički značajno najniži CDPQOL (13–18 godina) skor je u podgrupi ispitanika sa
celijakijom kojima je dijagnoza postavljena tri meseca nakon pojave prvih simptoma
celijakije. U odnosu na oblik kliničke manifestacije bolesti u grupi ispitanika sa
celijakijom nađeno je da postoji statistički značajna razlika distribucije prema skoru
koji ukazuje na prisustvo depresivnih simptoma u podgrupi ispitanika sa celijakijom sa
atipičnim kliničkim manifestacijama bolesti. Uticaj stepena atrofije crevnih resica
u bioptiranom materijalu na uspeh terapije pravilnom bezglutenskom ishranom utvrđena
je statistički značajna razlika kod skora Školsko funkcionisanje u podgrupi
ispitanika sa celijakijom kod kojih je biopsijom utvrđena delimična atrofija. Razlike
između subjektivnog doživljaja dece sa celijakijom i njihovih roditelja o kvalitetu
života koji vode uz kontrolisanu ishranu utvrđena je statistički značajno veća vrednost
skorova Separacijska anksioznost, Izbegavanje škole, Separacijska anksioznost kod
dece u odnosu na roditelje .
Zaključci: Deca i adolescenti sa celijakijom imaju značajno niži ukupni kvalitet
života (HRQOL) u odnosu na zdrave vršnjake i to kako na osnovu samoprocene tako i na
osnovu roditeljske procene. Kod dece sa celijakijom se moraju uzeti u obzir i
psihološki i socijalni aspekti bolesti. Tokom lečenja je neophodno usmeravanje,
osnaživanje i praćenje kako bi se dete oduprlo svim iskušenjima kršenja dijete što je u
direktnoj vezi sa kvalitetom života.
Introduction: celiac disease is an autoimmune disease that occurs in genetically susceptible
individuals as a consequence of consumption of gluten and the related proteins. The health
related quality of life, is defined as an patients subjective evaluation, about its physical, social or
emotional feeling of "good" and the way that disease and treatment is affecting it. Treatment of
celiac disease is strict lifelong gluten-free diet. Objectives: To evaluate the quality of life of
children and adolescents with celiac disease and get a complete picture of impairment of physical
and mental health and social functioning. To examine the effect of childrens age in whom the
diagnosis of celiac disease was established on the success of therapeutic gluten free diet.To
examine the influence of length of time that has elapsed since the onset of symptoms to
diagnosis on the success of therapeutic nutrition and adaptation of child and its family. To
examine the impact in the form of clinic...al manifestations of disease on the acceptance of a
gluten-free diet. To investigate the influence of the atrophy degree of the villi in biopted
material on the success of the dietotherapy.To estimate the success of gluten-free diet on the
basis of serological tests - antibodies to tissue transglutaminase IgA and IgG. To examine the
difference between the subjective experience of children with celiac disease and their parents
about their quality of life with a controlled diet. Methods: The study is a conducted as a
prospective, observational type. The study group consisted of children and adolescents suffering
from celiac disease aged 5-18 years. treated at the Institute for Health Protection of Mother and193
Child of Serbia "Dr Vukan Čupić" New Belgrade and the University Children's Hospital in
Belgrade, as well as their parents in order to analyze the quality of life. The control group
consisted of healthy children and adolescents aged 5-18 years. Dependent variables were: the
questionnaire score (Pediatric Quality of Life InventoryTM -version 4.0 PedsQLTM) SCARED
total score, total. MFQ score, a score of questionnaire (Celiac disease-specific health-related
pediatric instrument (CDPQOL). The study included a sample of the (N = 116) of children and
adolescents diagnosed with celiac disease, which are on gluten free diet at least one year.
Results: In domains of mental and physical health and social functioning, children and
adolescents with celiac disease showed a lower value on the tests in five of the six PedsQL
scores. The exception is Physical functioning. Also, they showed a lower value on five of the six
SCARED scores with exception of the presence of social anxiety..There is a statistically
significant difference in social functioning between the sub-groups with celiac disease formed by
criteria of the age that diagnoses was established. Childeren that were diagnosed with celiac
disease by the age of two had lower scores compared to the subgroup of patients with celiac
disease, which were diagnosed when they were from 13 to 18 years old. By analyzing the length
of time that has elapsed since the onset of symptoms to diagnosis the success of therapeutic
nutrition and adaptation of child and family on it, there are four significant differences observed:
Physical functioning, Emotional functioning, Psychosocial health and total score. A total score
was significantly lowest in the subgroup of patients with celiac disease where the diagnosis is
made one year after the first symptoms. In the group of respondents aged 13-18 years, there are
four significant differences. At school functioning, Going out and social events, CDPQOL
Confidence and total score. Significantly lowest CDPQOL (13-18) score was found in the
subgroup of patients with celiac disease, which was diagnosed three months after the first
symptoms of celiac disease. In relation to the form of the clinical manifestations of the disease in
a group of patients with celiac disease has been found that there is a statistically significant
difference in the distribution according to the score that indicates the presence of depressive
symptoms in the subgroup of subjects with celiac disease with atypical clinical manifestations.
The influence of the degree of atrophy of the villi in biopted material on the success of the
therapy proper gluten-free diet was found in a statistically significant difference. It was score in
domain of the school functioning in a subgroup of patients with celiac disease in which the
biopsy determined partial atrophy. Differences between the subjective experience of children
with celiac disease and their parents about the quality of life with controlled diet are with
significantly higher value of three scores in children compared to parents in domains of
Separation Anxiety School avoidance and Separation Anxiety.
Conclusions: Children and adolescents with celiac disease have a significantly lower overall
quality of life (HRQOL) compared to healthy peers, both on the basis of self-assessment and on
the basis of parental assessment. In children with celiac disease must be taken in to account the
psychological as well as social aspects of diseaseThe guidance, empowerment and monitoring
is necessary during treatment in order to help the child to resist all temptations and violations of
a diet which is directly related to the quality of life.