Spini Bifida tanılı çocuklarda yaşam kalitesinin değerlendirilmesi
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Tarih
2022
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Yayıncı
Trakya Üniversitesi Tıp Fakültesi
Erişim Hakkı
info:eu-repo/semantics/openAccess
Özet
Spina bifida tanılı çocuklar; duyusal, motor, sistemik ve bilişsel pek çok sorunla karşılaşmaktadır. Bu hastaların sosyal hayatlarını kısıtlayan sorunların başında, nörolojik bulgular, kas-iskelet sistemi anomalileri ile mesane ve barsak problemleri sayılabilir. Bu çalışmada SB tanılı hastaların yaşam kalitelerinin normal popülasyona göre karşılaştırılması ve yaşam kalitesini etkileyen faktörlerin saptanması amaçlanmıştır. Trakya Üniversitesi Tıp Fakültesi Çocuk Sağlığı ve Hastalıkları Anabilim Dalı, Çocuk Nefroloji Bilim Dalı tarafından 2005-2019 yılları arasında izlenen Spina Bifida tanılı hastalar tarandı. Tarama sonucunda saptanan 46 hastadan, 4-16 yaşları arasında bulunan, anketteki soruları algılayıp cevaplandıracak yeterlilikte olan ve çalışmaya katılmayı kabul eden 37 hastaya genel yaşam kalitesi ölçeği uygulandı ve sonuçlar değerlendirildi. Karşılaştırma yapabilmek adına hasta grup ile eşit sayıda sağlıklı çocuk çalışmaya dahil edildi. Çalışmaya yaşları 4-16 arasında değişen toplam 74 hasta katıldı. Bunlardan 39’ı erkek (%52.3), 35’ü kız (%47.2) idi. Hastalar yaş gruplarına göre; 4 ile 7 yaşları arasında 39 hasta (%59.7), 8 ile 11 yaşları arasında 13 hasta (%17.5), 11 ile 16 yaşları arasında 22 hasta (%22.8) olarak sınıflandırıldı. Hastaların YK puanları kız ve erkek cinsiyet olarak sınıflandırıldığında kız cinsiyette toplam YK puanı 65,34±14,48, erkek cinsiyette YK puanı 64,62±10,55, kız cinsiyet hastalık alt ölçek puanı 62,37±16,32, erkek cinsiyet hastalık alt ölçek puanı 59,03±19,79 olup, hiçbir yaş grubunda cinsiyete göre toplam ve hasta grupta YK’da istatistiksel olarak anlamlı fark saptanmadı. Hastaların yaş grupların göre değerlendirmesinde 4-7 yaş grubu çocuklarda hasta grup YK puanı 27,24±2,79, kontrol grubu YK puanı 28,33±2,54 olup istatistiksel olarak anlamlı fark izlenmedi (p>0,05). 8-11 yaş grubu çocuklarda hasta grup YK puanı 12,33±3,51, sağlıklı grup YK puanı 73,75±9,28 olup istatistiksel olarak anlamlı fark izlendi (p=0,014). 12-16 yaş grubu çocuklarda ise hasta grup YK puanı 55,5±10,06, sağlıklı grup YK puanı 74,22±10,67 olup istatistiksel olarak anlamlı fark izlendi (p=0,001). Hastalarda sosyoekonomik durumun YK üzerine etkisini göstermek amacıyla gelir düzeyiyle YK arası ilişki incelendiğinde gelir düzeyi yüksek olan grubun düşük olan gruba göre YK puanlarının istatistiksel olarak anlamlı yüksek olduğu izlendi (p=0,006). Hastalar sistem tutulumlarına göre gruplandırıldığında lokomotor sistem tutulumunun 31 kişi ile %83.78, gastrointestinal sistem tutulumunun 24 kişi ile %64,86, ürogenital sistem tutulumunun 33 kişi ile %89,19, nörolojik sistem tutulumunun 31 kişi ile %83,78 oranında olduğu, solunum sistemi ve kardiyovasküler sistem tutulumunun da hiçbir hastada olmadığı görüldü. Çalışmamızda ambulatuar durumun YK üzerine etkilerini incelediğimizde bağımsız yürüyebilen grubun YK’larının istatistiksel olarak anlamlı yüksek olduğu bulundu (p=0,019). İnkontinans ile YK arasındaki ilişki incelendiğinde ise idrar inkontinansının YK’yı etkilemediği ancak gaita inkontinansının YK’yı olumsuz etkilediği görüldü (p>0,05, p=0,006). Hidrosefali ve VP şant varlığının hasta grupta YK üzerine etkileri inceleniğinde ise istatistiksel olarak anlamlı fark saptanmadı(p>0,05). Bunun yanısıra literatürlerdekinden farklı olarak çalışmamızda psikiyatrist takibinin hasta grubun YK’sını anlamlı düzeyde etkilemediği görülmüştür. Yapılan çalışmalardaki çelişkilere rağmen çalışmamızda doğum şeklinin YK’yı anlamlı düzeyde görüldüğü açıkça görülmektedir (p=0,016). Pek çok parametrenin SB tanılı hastalarda YK’yı açıkça etkilediği ortadadır. Spina bifida ile ilgili bulguların ayrıntılı olarak değerlendirileceği ölçeklerin geliştirilmesi, hastaların başta yürüme ve mesane kontrolü olmak üzere spesifik problemlerine değinerek yeni ve hastalığa özgü YK’ların geliştirilmesine ışık tutacaktır.
Children diagnosed with spina bifida; it encounters many sensory, motor, systemic and cognitive problems. These problems are among the problems that limit their social lives, neurological findings, musculoskeletal system anomalies, and bladder and bowel problems. In this section, it is aimed to compare the SB-defined files quality of life compared to the normal population and to determine the factor factors of the lifestyle. Patients diagnosed with Spina Bifida who were followed up by Trakya University Faculty of Medicine, Department of Pediatrics, Pediatric Nephrology between 2005-2019 were scanned. Of the 46 patients, between the ages of 4-16, sufficient to answer your perception in the questionnaire, and 37 patients' general quality of life scale was applied and comments were evaluated. In order to make comparisons, an equal number of healthy children were included in the study. A total of 74 patients aged 4-16 participated in the study. 39 of them were boys (52.3%) and 35 were girls (47.2%). Patients according to age groups; 39 patients (59.7%) between the ages of 4 and 7 were classified as 13 patients (17.5%) between the ages of 8 and 11, and 22 patients (22.8%) between the ages of 11 and 16. There was no significant difference in QOL score as 65.34 ± 14.48, QOL score in male gender 64.62 ± 10.55, female gender disease subscore 62.37 ± 16.32 in male gender. In 4-7 age group children, the patient group evaluates whether there is a QOL score of 27.24 ± 2.79, and the control group has a QOL score of 28.33 ± 2.54 (p> 0.05). A significant difference was observed in the 8-11 age group, with a patient group QOL score of 12.33 ± 3.51 and a healthy group QOL score of 73.75 ± 9.28 (p = 0.014). A significant difference was observed, with a score of 55.5 ± 10.06 and a healthy group score of 74.22 ± 10.67 (p = 0.001). When the relationship between income level and QOL was examined in order to show the effect of socioeconomic status on QOL in patients, it was observed that the group with high income was statistically significantly higher than the low group (p = 0.006). When patients are grouped according to system involvement, the locomotor system involvement is 83.78% with 31 people, gastrointestinal system involvement is 64.86% with 24 people, urogenital system involvement is 89.19% with 33 people, neurological system involvement is 83.78% with 31 people. system and cardiovascular system involvement was not observed in any patient. When we examined the effects of ambulatory status on QOL in our study, the QOLs of the group that could walk independently were found to be statistically significantly higher (p = 0.019). When the relationship between incontinence and QOL was examined, it was observed that urinary incontinence did not affect QOL, but stool incontinence negatively affected QOL (p> 0.05, p = 0.006). When the effects of hydrocephalus and VP shunt presence on QOL in the patient group were examined, no statistically significant difference was found (p> 0.05). In addition, in our study, unlike in the literature, psychiatrist follow-up did not significantly affect the QOL of the patient group. Despite the contradictions in the studies, it is clearly seen in our study that the mode of delivery is significantly seen in the QOL (p = 0.016). It is obvious that many parameters clearly affect QOL in patients with SB. The development of scales, in which the findings related to spina bifida will be evaluated in detail, will shed light on the development of patients' QOLs, since patients will address specific problems, especially walking and bladder control.
Children diagnosed with spina bifida; it encounters many sensory, motor, systemic and cognitive problems. These problems are among the problems that limit their social lives, neurological findings, musculoskeletal system anomalies, and bladder and bowel problems. In this section, it is aimed to compare the SB-defined files quality of life compared to the normal population and to determine the factor factors of the lifestyle. Patients diagnosed with Spina Bifida who were followed up by Trakya University Faculty of Medicine, Department of Pediatrics, Pediatric Nephrology between 2005-2019 were scanned. Of the 46 patients, between the ages of 4-16, sufficient to answer your perception in the questionnaire, and 37 patients' general quality of life scale was applied and comments were evaluated. In order to make comparisons, an equal number of healthy children were included in the study. A total of 74 patients aged 4-16 participated in the study. 39 of them were boys (52.3%) and 35 were girls (47.2%). Patients according to age groups; 39 patients (59.7%) between the ages of 4 and 7 were classified as 13 patients (17.5%) between the ages of 8 and 11, and 22 patients (22.8%) between the ages of 11 and 16. There was no significant difference in QOL score as 65.34 ± 14.48, QOL score in male gender 64.62 ± 10.55, female gender disease subscore 62.37 ± 16.32 in male gender. In 4-7 age group children, the patient group evaluates whether there is a QOL score of 27.24 ± 2.79, and the control group has a QOL score of 28.33 ± 2.54 (p> 0.05). A significant difference was observed in the 8-11 age group, with a patient group QOL score of 12.33 ± 3.51 and a healthy group QOL score of 73.75 ± 9.28 (p = 0.014). A significant difference was observed, with a score of 55.5 ± 10.06 and a healthy group score of 74.22 ± 10.67 (p = 0.001). When the relationship between income level and QOL was examined in order to show the effect of socioeconomic status on QOL in patients, it was observed that the group with high income was statistically significantly higher than the low group (p = 0.006). When patients are grouped according to system involvement, the locomotor system involvement is 83.78% with 31 people, gastrointestinal system involvement is 64.86% with 24 people, urogenital system involvement is 89.19% with 33 people, neurological system involvement is 83.78% with 31 people. system and cardiovascular system involvement was not observed in any patient. When we examined the effects of ambulatory status on QOL in our study, the QOLs of the group that could walk independently were found to be statistically significantly higher (p = 0.019). When the relationship between incontinence and QOL was examined, it was observed that urinary incontinence did not affect QOL, but stool incontinence negatively affected QOL (p> 0.05, p = 0.006). When the effects of hydrocephalus and VP shunt presence on QOL in the patient group were examined, no statistically significant difference was found (p> 0.05). In addition, in our study, unlike in the literature, psychiatrist follow-up did not significantly affect the QOL of the patient group. Despite the contradictions in the studies, it is clearly seen in our study that the mode of delivery is significantly seen in the QOL (p = 0.016). It is obvious that many parameters clearly affect QOL in patients with SB. The development of scales, in which the findings related to spina bifida will be evaluated in detail, will shed light on the development of patients' QOLs, since patients will address specific problems, especially walking and bladder control.
Açıklama
Anahtar Kelimeler
Spina bifida, Yaşam kalitesi, KINDL-R, Quality of life
