Neurocutanous Diseases

Nörokütanöz Hastalıklarda Yaşam Kalitesi
Quality of Life in Neurocutaneous Disorders
Meltem DİNLEYİCİa
aEskişehir Osmangazi Üniversitesi Tıp Fakültesi, Sosyal Pediatri BD, Eskişehir, TÜRKİYE
Dinleyici M. Nörokütanöz hastalıklarda yaşam kalitesi. Çarman KB, editör. Nörokütanöz Hastalıklar. 1. Baskı. Ankara: Türkiye Klinikleri; 2021. p.76-83.
Article Language: TR
ÖZET
Nörokütanöz hastalıklar, hastalık türüne göre şiddeti, seyri ve komplikasyonları değişen kronik bir hastalık grubudur. Nörokütanöz hastalıklarda sağlık ilişkili yaşam kalitesi değerlendirmeleri son yıllarda hastaların klinik takibinde önem kazanmıştır. Sağlık ilişkili yaşam kalitesi çalışmalarının büyük bölümü nörofibromatosis (NF) hastalarında yoğunlaşmıştır. NF hastalarında doğumdan itibaren başlayabilen ve tüm yaşam boyu hastanın yaşam kalitesini etkileyen bulgular ve komplikasyonlar görülebilmektedir. NF hastalarında sağlık ilişkili yaşam kalitesinin belirgin etkilendiği gösterilmiştir. Sağlık ilişkili yaşam kalitesi skorlarının sadece hastalarda değil, aile bireylerinde de düşük olduğu gösterilmiştir. NF1 olan çocuklarda düşük yaşam kalitesi skorları ile hastalık şiddeti, pleksiform nörofibromların bulunması, hastalığa ait komplikasyonların gelişmiş olması, ciddi ağrıların olması ve sosyal/duygusal problemlerin olması arasında ilişki olduğu gösterilmiştir. Sağlıklı çocukların ebeveynleriyle karşılaştırıldığında, NF hastalarının ebeveynlerinin, çocuklarının yaşam kalitesi ile ilişkili olarak fazla endişe duydukları gösterilmiştir. Hem hastalarda hem de ailelerde skorların benzer olarak düşük olması, NF hastası çocuklarda tüm aileyi içine alan yaklaşımların gerekliliğini göstermektedir. Erişkin NF hastalarında yaşam kalitesinin, tüm ana yaşam kalitesi değerlendirme alanlarında (genel sağlık, sosyal işlevsellik, ağrı ve zihinsel sağlık) belirgin şekilde düştüğü ve hastalık hakkında endişelerin ciddi etkilenmeye neden olduğu gösterilmiştir. Erişkinlerde yaşam kalitesini en çok etkileyen faktörler kozmetik kaygılar, ağrı, öğrenme güçlüğü, hastalığı çocuklarına geçirme endişesi, çalışma olanaklarının kısıtlı olması ve hastalığın seyri konusundaki belirsizlikler olarak belirlenmiştir. Sağlık ilişkili yaşam kalitesi, özellikle mutlak tedavi şansı olmayan ve ömür boyu devam eden hastalıklarda daha önem kazanmaktadır. NF dışındaki nörokütanöz hastalıklar da yaşam kalitesi değerlendirme çalışmaları kısıtlıdır. Bu nedenle NF başta olmak üzere nörokütanöz hastalıkları olan çocuk, ergen ve erişkinlerde yaşam kalitesinin belirlenmesi ve bu kalitenin arttırılmasına yönelik girişimler gereklidir. Bu alanda yapılacak tüm ilaç, girişim ve psikiyatrik yaklaşımların, eğitimlerin yaşam kalitesi üzerine spesifik etkilerinin de değerlendirilmesi yararlı olacaktır. Çalışmaların yapıldığı ülkeler arasında sosyokültürel ve sağlık hizmetleri açısında farklılıklar olabileceğinden, farklı toplumlarda bu hastaların ve ailelerinin dahil edildiği çalışmalar, hastaların takip ve tedavisinde katkı sağlayabilecektir.

Anahtar Kelimeler: Nörokütanöz hastalık; nörofibromatosis; yaşam kalitesi; sağlık ilişkili yaşam kalitesi
ABSTRACT
Neurocutaneous diseases are a group of chronic diseases that vary in severity, course and complications depending on the type of disease. Evaluation of health-related quality of life in patients with neurocutaneous diseases have gained importance in the clinical follow-up of patients in recent years. The majority of health-related quality of life studies have focused on patients with neurofibromatosis (NF). In patients with NF; symptoms and complications that can start from birth and affect the patient's quality of life throughout the life. Health-related quality of life has been shown to be significantly affected in patients with NF. It has been shown that health-related quality of life scores are low not only in NF patients but also in family members. In children with NF, it has been shown that there is a relationship between low quality of life scores and disease severity, presence of plexiform neurofibromas, development of disease complications, severe pain, and social/emotional problems. Compared to parents of healthy children, it has been shown that parents of NF patients are more concerned about their children's quality of life. The similarly low scores in both patients and families indicate the necessity of approaches that include the whole family in children with NF. Quality of life in adult NF patients has been shown to be significantly reduced in all major quality-of-life assessment domains (general health, social functioning, pain, and mental health) and concerns about the disease are severely affected. The factors that most affect the quality of life in adults are cosmetic concerns, pain, learning difficulties, anxiety of passing the disease to their children, limited employment opportunities and uncertainty about the course of the disease. Healthrelated quality of life becomes more important, especially in diseases that do not have an absolute chance to cure and that continue throughout life. Quality of life assessment studies are limited in neurocutaneous diseases other than NF. Therefore, it is necessary to determine the quality of life in children, adolescents and adults with neurocutaneous diseases, especially NF to increase this quality. It will be useful to evaluate the specific effects of all medication, intervention and psychiatric approaches and trainings on quality of life. Studies involving these patients and their families in different societies may contribute to the follow-up and treatment of patients, as there may be differences in terms of socio-cultural and health services among the countries where the studies are conducted.

Keywords: Neurocutaneous disorders; neurofibromatosis; quality of life; health-relates quality of life

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