Tedavisi tamamlanmış çocuk onkoloji hastalarının eğitim, çalışma, alışkanlıklar ve yaşam değişikliklerinin değerlendirilmesi
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Date
2018
Authors
Yiğit, Galip
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Publisher
Bursa Uludağ Üniversitesi
Abstract
Çocukluk çağı kanserlerinde sağ kalım oranları son yıllarda yoğun tedavi ve destek bakımları ile %80'lerin üzerine çıkmıştır. Sağ kalım oranlarındaki bu artış tedavinin erken ve geç dönem yan etkilerini beraberinde getirmiştir. Bu yan etkilerden bir kısmı hasta ve ailelerinde ortaya çıkan psikolojik, sosyal, eğitim-öğretim, iş ve sigara-alkol gibi alışkanlıklardaki değişikliklerdir. Çalışmamızda bu değişikliklerin değerlendirilmesi ve sonuçların daha sonraki hasta gruplarındaki destek tedavilere yol gösterici olması amaçlanmıştır. Çalışmamıza 01.01.2000-31.12.2015 tarihleri arasında Uludağ Üniversitesi Tıp Fakültesi Çocuk Onkoloji Bilim Dalı tarafından tanısı konan ve tedavisi yapılan lenfoma ve solid tümörlü hastalardan, hastalığı izlemde nüksetmemiş ve kür sağlanmış 155 hasta dahil edildi. Ortalama izlem süresi 93±48,8 ay olan hastaların %60'ı erkek ve çalışma dönemindeki yaş ortalaması 17,3±5,3 yıl idi. İlk tanı anındaki yaş ortalaması 8,2±5,0 yıl ve en sık tanı grubu %49 ile lenfomalar idi. Tüm hastalar sistemik kemoterapi ve %41,9'u ek olarak radyoterapi almıştı. Çalışma döneminde hastaların %50,3'ü 18 yaşından büyüktü ve bunların %3,8'i evliydi ve %2,53'ünün çocuğu vardı. Tanı-tedavi döneminde okula gitmesi gereken çocukların %61,4'ü ortanca olarak 12 ay okula ara vermişti. Tedavi sonrası dönemde okul hayatına devam etmeyen/okulu bitirmiş olan toplam hasta sayısı 115 olarak bulundu. Bu grubun %27,8'i düzenli bir gelire sahipti. Kız ve erkekler arasında ve radyoterapi alanlar ve almayanlar arasında eğitim düzeyi açısından anlamlı fark saptanmadı. Hastalar, lenfoma tanılı hastalar ve solid tümör tanılı hastalar olarak iki gruba ayrıldığında, eğitim düzeyleri (üniversite ve üniversite öncesi) arasında anlamlı fark saptanmadı. Çalışma zamanında hastaların %40'ı lise ve dengi okula devam etmekte veya mezun durumunda iken %20'si ise üniversiteden mezun olmuş veya mezun durumunda idi. Bu veriler ülkemiz ortalamalarının üzerinde saptanmıştır. HDL nedeniyle intratekal tedavi uygulanmış ve/veya kraniyal/kraniyospinal radyoterapi almış olan hastalar %71,4 oranında lise ve üstü eğitim almışken diğer hastalarda bu oran %92,6 olarak sonuçlanmıştı (p=0,03). Hastaların %84'ü tedavi sırasında veya sonrasındaki herhangi bir zamanda psikolojik destek almamıştı. Tedavi alanların ise, tedavi bitiminden sonraki dönemde tedavi sırasına göre psikolojik destek alma oranı daha fazlaydı. Psikolojik destek ile cinsiyet ve yaş arasında istatistiksel olarak anlamlı ilişki saptanmadı. Psikolojik destek oranları radyoterapi alanlarda almayanlara göre istatistiksel olarak anlamlı düzeyde yüksekti. (p=0,043) Hastaların alışkanlıkları tedavi öncesi ve sonrası kıyaslandığında, alkol ve sigara kullanımının tedavi sonrasında belirgin olarak arttığı görüldü. Daha önce kullanmadıkları halde tedavi sonrası %12'si sigaraya, %5,8'i ise alkole başlamıştı. Bu alışkanlıklar ile cinsiyet ve tedavi yaklaşımı arasında anlamlı ilişki saptanmadı. Tedavi sürecinde yeni kardeşi olanların kötü alışkanlık edinme oranları daha düşüktü. Yedi ve on yaş arası çocuklar da dahil olmak üzere hastaların büyük çoğunluğu gelecekte kendilerini daha iyi bir yerde göreceğini düşünmekteydi. Okuma yazma bilmeyen annelerin de babaların da oranı %6,5; üniversite mezunu anne oranı %3,2; baba oranı %11,0 idi. Hiç okula gitmemiş %6 baba ve anne (farklı çocukların ebeveynleri) tedavi süreciyle ilişkili olarak okuma yazma öğrenmiş, annelerin %5,1'i ve babaların %2,5'i de bu süreçte eğitimini yükseltmişti. Annelerin %85'i ev hanımıydı, babalarınsa %9,6'sı düzenli bir işte çalışmıyordu. Bunlardan %7,6 anne ve %3,1 baba tedavi sonrasında eskiden çalışmadığı halde işe başlamıştı. Sonuç olarak çalışmamız çocukluk çağı kanserlerinden kurtulanların, ve ailelerin tanıdan yıllar sonra da sorunların devam ettiği,yaşları büyüdükçe topluma entegre olmada karşılaştıkları zorlukları anlamamız için yararlı bilgiler sunmaktadır. Ayrıca mevcut bulgular, bu hastaların çocukluk çağında kanserden kurtulsa ve hayatlarını devam ettirseler dahi eğitim ve sosyal ihtiyaçları bakımından önemli eksikliklere sahip olduklarını göstermektedir. Bu çalışmanın bulguları, bu hastaların akademik ve sosyal başarılarını daha üst düzeye çıkarmak, benlik saygısını geliştirmek ve psikososyal desteği sağlamak için, tedaviyle sağ kalımın amaçlanması yanında, erken dönem destek tedavilerinin uygulanması ve uzun vadede bu desteğin devam etmesi gerekliliğini göstermektedir.
Survival rates in childhood cancers have increased over 80% in recent years with intensive treatment and supportive care. This increase in survival rates resulted in early and late side effects of treatment. Some of these side effects are changes in habits such as psychological, social, education, work and cigarette-alcohol consumption occurring in patients and their families. In our study, it was aimed to evaluate these changes and to guide the results to support therapies in subsequent patient groups. One hundred and fifty five patients with lymphoma and solid tumors diagnosed and treated by the Department of Pediatric Oncology at Uludağ University Medical Faculty between 01.01.2000 and 31.12.2015 were included in the study. The mean follow-up time was 93 ± 48,8 months and 60% of the patients were male. The mean age at the time of diagnosis was 8,2 ± 5.0 years and the most common diagnosis was lymphomas with a rate of 49%. All patients had systemic chemotherapy and 41,9% of them received radiotherapy. During the study period, 50,3% of the patients were older than 18 years and 3,8% of them were married and 2,53% had children 61,4% of children who had to go to school during the diagnosis-treatment period took a coercibly break for median time of 12 months. The total number of patients who did not attend school or completed school after treatment was found to be 115 27,8% of this group had a regular income. No significant difference in education levels was found between girls and boys and those who received radiotherapy and those who did not. When patients were divided into two groups as patients with lymphoma and solid tumor, there was no significant difference between education levels (pre-university and university). At the time of study, 40% of the patients were attending high school or equivalent school, and 20% were graduates or graduated from university. These data is above the average of our country. 71,5% of the patients who underwent intrathecal treatment and / or received cranial / craniospinal radiotherapy had high school or higher education and this rate was 92,6% in the other patients (p = 0,03). 84% of the patients did not receive psychological support at any time during or after treatment. Those receiving treatment were more likely to receive psychological support in the period following the end of the treatment than during the treatment. There was no statistically significant relationship between receiving psychological support and gender and age.Psychological support rates were significantly higher than those who did not receive radiotherapy(p=0,043) When patients' habits were compared before and after treatment, alcohol and cigarette usage increased significantly after treatment. 12 % of the patients started smoking and 5,8% of them started drinking alcohol after treatment although they did not used before. No significant relationship was found between these habits and gender and treatment approach.Those who had a new sibling during the treatment had lower rates of bad habit. The majority of patients, including children between the ages of seven and ten, thought that they would see themselves in a better place in the future. The ratio of non-educated mothers and fathers were 6,5%; the percentage of mother with a university degree was 3,2%; the rate of father was 11,6% of mother and father (parents of different children) who have never attended school have learned to read and write during the treatment process, 5,1% of mothers and 2,5% of fathers raised their education level in this process 85% of mothers were housewives, and 9,6% of fathers did not have a regular job .about 7,6% of these mothers and 3,1% of fathers who did not have a job, started working after the treatment. In conclusion, our study provides useful information for the survivors of childhood cancers and families to understand the difficulties that they face in integrating into society as their age increases. In addition, the present findings suggest that these patients have significant deficiencies in education and social needs, even if they survive cancer in their childhood and continue their lives. The findings of this study show that in addition to aim survival through treatment, it is necessary to provide early supportive therapies and to maintain this support in the long term in order to improve the academic and social success of these patients and also enhance self-esteem and provide psychosocial support.
Survival rates in childhood cancers have increased over 80% in recent years with intensive treatment and supportive care. This increase in survival rates resulted in early and late side effects of treatment. Some of these side effects are changes in habits such as psychological, social, education, work and cigarette-alcohol consumption occurring in patients and their families. In our study, it was aimed to evaluate these changes and to guide the results to support therapies in subsequent patient groups. One hundred and fifty five patients with lymphoma and solid tumors diagnosed and treated by the Department of Pediatric Oncology at Uludağ University Medical Faculty between 01.01.2000 and 31.12.2015 were included in the study. The mean follow-up time was 93 ± 48,8 months and 60% of the patients were male. The mean age at the time of diagnosis was 8,2 ± 5.0 years and the most common diagnosis was lymphomas with a rate of 49%. All patients had systemic chemotherapy and 41,9% of them received radiotherapy. During the study period, 50,3% of the patients were older than 18 years and 3,8% of them were married and 2,53% had children 61,4% of children who had to go to school during the diagnosis-treatment period took a coercibly break for median time of 12 months. The total number of patients who did not attend school or completed school after treatment was found to be 115 27,8% of this group had a regular income. No significant difference in education levels was found between girls and boys and those who received radiotherapy and those who did not. When patients were divided into two groups as patients with lymphoma and solid tumor, there was no significant difference between education levels (pre-university and university). At the time of study, 40% of the patients were attending high school or equivalent school, and 20% were graduates or graduated from university. These data is above the average of our country. 71,5% of the patients who underwent intrathecal treatment and / or received cranial / craniospinal radiotherapy had high school or higher education and this rate was 92,6% in the other patients (p = 0,03). 84% of the patients did not receive psychological support at any time during or after treatment. Those receiving treatment were more likely to receive psychological support in the period following the end of the treatment than during the treatment. There was no statistically significant relationship between receiving psychological support and gender and age.Psychological support rates were significantly higher than those who did not receive radiotherapy(p=0,043) When patients' habits were compared before and after treatment, alcohol and cigarette usage increased significantly after treatment. 12 % of the patients started smoking and 5,8% of them started drinking alcohol after treatment although they did not used before. No significant relationship was found between these habits and gender and treatment approach.Those who had a new sibling during the treatment had lower rates of bad habit. The majority of patients, including children between the ages of seven and ten, thought that they would see themselves in a better place in the future. The ratio of non-educated mothers and fathers were 6,5%; the percentage of mother with a university degree was 3,2%; the rate of father was 11,6% of mother and father (parents of different children) who have never attended school have learned to read and write during the treatment process, 5,1% of mothers and 2,5% of fathers raised their education level in this process 85% of mothers were housewives, and 9,6% of fathers did not have a regular job .about 7,6% of these mothers and 3,1% of fathers who did not have a job, started working after the treatment. In conclusion, our study provides useful information for the survivors of childhood cancers and families to understand the difficulties that they face in integrating into society as their age increases. In addition, the present findings suggest that these patients have significant deficiencies in education and social needs, even if they survive cancer in their childhood and continue their lives. The findings of this study show that in addition to aim survival through treatment, it is necessary to provide early supportive therapies and to maintain this support in the long term in order to improve the academic and social success of these patients and also enhance self-esteem and provide psychosocial support.
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Keywords
Çocukluk çaği kanser, Sağ kalım, Geç etkiler, Childhood cancer, Survival, Late effects
Citation
Yiğit, G. (2018). Tedavisi tamamlanmış çocuk onkoloji hastalarının eğitim, çalışma, alışkanlıklar ve yaşam değişikliklerinin değerlendirilmesi. Yayınlanmamış uzmanlık tezi. Bursa Uludağ Üniversitesi Tıp Fakültesi.