Kvalitet života dece i adolescenata sa celijakijom

Abstract

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 clinical 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.