Self perception and quality of life of adolescents who had undergone open heart surgery due to cyanotic congenital heart disease in their infancy

Year 2011, , 220 - 227, 01.09.2011

Cenk Eray Yıldız Oğuzhan Zahmacıoğlu Bülent Koca Veysel Oktay Selman Gökalp Ayşe Güler Eroğlu Gürkan Çetin Funda Öztunç

https://doi.org/10.4274/tpa.46.78

Abstract

Aim: To assess the quality of life of the teenage patients who had undergone open heart surgery because of cyanotic heart disease during their infancy together with their parents and to compare their self perception to that of the physically healthy control group Material and Method: This study includes 53 patients who had undergone operation for cyanotic congenital heart disease in İstanbul University Institute of Cardiology between 1989 and 1994 The relatives and the patients were informed with a consent form approved by İstanbul University Cerrahpaşa Medical Faculty Clinical Studies Ethics Commitee Decree no D 005 Date: 11 10 2009 Group 1 was the healthy control group 15 patients median age: 19 years 8 months Group 2 included patients with single ventricle who had undergone Fontan procedure 20 patients median age: 19 years 6 months; 10 of them had tricuspid atresia 5 of them had pulmonary atresia with intact ventricular septum 3 of them had double inlet left ventricle 1 of them had double outlet right ventricle 1 of them had ventricular septal defect and pulmonary atresia group 3 included patients who had undergone operation for congenital cyanotic heart disease 33 patients median age: 19 years 2 months; 18 of them had transposition of the great arteries 10 of them had tetralogy of Fallot 2 of them had complete atrioventricular canal defect and pulmonary stenosis 2 of them had double outlet right ventricle 1 of them had pentalogy of Fallot In this study the quality of life and self perception inventories were used The quality of life inventory was completed by patients healthy adolescents and their parents seperately The self perception inventory was completed only by the patients and healthy adolescents The comparison of age and self perception scores between the groups was carried out with unidirectional analysis of variance ANOVA and the multicomparisons with LSD Least Significant Difference Since the quality of life variable did not have a normal distribution the comparions were carried out with Kruskal Wallis nonparametric ANOVA test and the multicomparisons were carried out with Dunn 39;s test Results: There was not a significant difference between the groups in terms of age and sex In the quality of life scale QOLS for the replies to related questions a significant difference was determined between the groups The replies of group 2 and 3 about quality of life of both the children and the parents were far more negative when compared to those of the control group When the groups were compared via multiple comparison tests there was no significant difference between group 2 and 3 The replies of the parents regarding their children 39;s quality of life were statistically more negative than those of their children p lt;0 001 Within the self perception scale there were significant differences in terms of social acceptance behaviours in relationships and general self perception p=0 03 p=0 03 and p=0 01; repectively between group 1 and 3 The most significant difference that was detected between group 1 and 2 was about behaviours in relationships p=0 04 Conclusions: With the help of developing technology and surgical experience many complex cyanotic heart diseases are treated successfully and most patients reach puberty However the responses for quality of life and self perception paremeters of this group of patients are more negative than those of the control group Therefore these adolescents and especially their parents may need psychosocial support Turk Arch Ped 2011; 46: 212 9

Keywords

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Bebeklik döneminde siyanotik kalp hastalığı nedeniyle açık kalp cerrahisi uygulanmış ergenlerde kendilik algısı ve yaşam niteliği

Abstract

Amaç: Bebeklik döneminde siyanotik kalp hastalığı nedeniyle açık kalp ameliyatı geçiren hastaların, ergenlik dönemindeki yaşam niteliği ölçeğini ebeveynleriyle beraber değerlendirmek ve kendilik algılarıyla birlikte fiziksel olarak sağlıklı kontrol grubuyla karşılaştırmaktır.

Gereç ve Yöntem: Bu çalışmaya 1989-1994 yılları arasında İstanbul Üniversitesi Kardiyoloji Enstitüsü’nde doğuştan siyanotik kalp hastalığı nedeniyle ameliyat edilmiş 53 hasta alındı. İstanbul Üniversitesi Cerrahpaşa Tıp Fakültesi Klinik Araştırmalar Etik Kurulu’ndan (Karar numarası: D-005, Tarih: 10-11-2009) onay alınarak, hasta ve yakınları onam formuyla bilgilendirildi. Grup 1 fiziksel olarak sağlıklı kontrol grubu (15 kişi, ort. yaş: 19 yıl, 8 ay), grup 2 Fontan ameliyatı uygulanan tek ventriküllü hastalar (20 hasta, ort. yaş: 19 yıl, 6 ay; 10’unda triküspit atrezisi, beşinde intakt ventriküler septumlu pulmoner atrezi, üçünde çift girişli sol ventrikül, birinde çift çıkışlı sağ ventrikül, birinde ventriküler septal defekt ve pulmoner atrezi), grup 3 ise diğer doğuştan siyanotik kalp hastalığı nedeniyle ameliyat olmuş hastalardı (33 hasta, ort. yaş: 19 yıl, 2 ay; 18’inde büyük arterlerin transpozisyonu, 10’unda Fallot tetralojisi, ikisinde tam atriyoventriküler kanal defekti, pulmoner darlık, ikisinde çift çıkışlı sağ ventrikül, birinde Fallot pentalojisi). Çalışmada yaşam niteliği ve kendilik algısı ölçekleri kullanıldı. Yaşam niteliği ölçeğini hasta ve fiziksel olarak sağlıklı ergenler ile ebeveynleri ayrı ayrı doldurdu. Kendilik algısı ölçeğini sadece hasta ve fiziksel olarak sağlıklı ergenler doldurdu. Yaş ve kendilik algısı puanlarının gruplar arasındaki karşılaştırmaları tek yönlü varyans analizi (ANOVA) ile; çoklu karşılaştırılmaları ise LSD (Least Significant Difference) ile yapıldı. Yaşam niteliği değişkeni normal dağılıma sahip olmadığı için karşılaştırmalar Kruskal-Wallis nonparametrik ANOVA testi ile, çoklu karşılaştırmalar ise Dunn testi ile yapıldı.

Bulgular: Yaş ve cinsiyet açısından gruplar arasında anlamlı fark yoktu. Yaşam niteliği ölçeğinde, ilgili sorulara verilen yanıtlarda gruplar arasında ileri derecede anlamlı fark saptandı. Grup 2 ve 3 için yaşam niteliğine yönelik yanıtlar hem ebeveynlerde hem de çocuklarda kontrol grubuna göre çok daha olumsuzdu. Çoklu karşılaştırma testi ile gruplar kıyaslandığında, grup 2 ve 3 arasında anlamlı fark saptanmadı. Ebeveynlerin çocuklarının yaşam niteliği ile ilişkili yanıtları, çocuklarınınkinden istatistiksel olarak daha olumsuzdu (p<0,001). Kendilik algısı ölçeğinde ise özellikle grup 1 ve 3 arasında toplumsal kabul görme, ilişkilerdeki davranışlar ve genel kendilik değeri açısından anlamlı fark vardı (sırasıyla; p=0,03, p=0,03 ve p=0,01). Grup 1 ve 2 arasında saptanan tek anlamlı fark ise ilişkilerdeki davranışlarda görüldü (p=0,04).

Çıkarımlar: Gelişen teknoloji ve artan cerrahi deneyim ile birçok ağır doğuştan siyanotik kalp hastalığı başarıyla tedavi edilmekte ve hastaların çoğu ergen yaşa ulaşmaktadır. Ancak bu kişilerde yaşam niteliği ve kendilik algısı fiziksel olarak sağlıklı ergenlere göre daha olumsuzdur. Bu nedenle ergenlerin ve özellikle ailelerinin psikososyal desteğe gereksinimleri vardır. (Türk Ped Arfl 2011; 46: 220-7)

Keywords

Doğuştan kalp hastalığı, ergen, kendilik algısı profili, siyanoz, yaşam niteliği

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