Berrak BİLGİNER GÜRBÜZ, Arda KARABONCUK, Serap SİVRİ

Fenilketonüri Kampının Fenilketonürili Adölesanların Bilgi ve Davranışları Üzerindeki Etkileri

Amaç: Bu çalışmada fenilketonüri kampının fenilketonürili (PKU) adölesanlar üzerindeki etkisinin değerlendirilmesi amaçlanmıştır. Gereç ve Yöntemler: Bu kohort tipi çalışma, yaşları 12-16 yaş arasında değişen toplam 67 katılımcı ile gerçekleştirildi. Katılımcılar, fenilketonürili hastalar için düzenlenen, hastaların sosyalleşmesini, hastalıkla ilgili bilgi düzeylerini arttırmayı ve çeşitli sosyal aktivitelerle keyifli vakit geçirmeyi amaçlayan PKU kampına katılan PKU hastalarından seçildi. Kampa hastaların yanı sıra, çocuk metabolizma uzmanları, psikolog ve diyetisyenler katıldı. Araştırma anketi kampın ilk ve son günlerinde yüz yüze görüşme ile uygulandı ve 10 adet bilgi soruları sorularak, her katılımcı için doğru cevap sayısına göre bilgi puanı hesaplandı. Bulgular: Katılımcıların 34’ü (% 50.7) kız, 33’ü (%49.3) erkekti. Yirmi bir (%31.3) hastada fenilketonüri hastası başka bir aile üyesi vardı. Ortalama bilgi puanları PKU kampının başlangıcında da yüksek (ortanca 8, en az 4, en fazla 10 puan) olup, hastaların PKU bilgisi karşılaştırıldığında, kamp öncesi (7.40±1.62) ve sonrasında (7.72±1.80) arasında anlamlı bir fark bulunamadı (p= 0.097). Ancak katılımcıların PKU hastası olmanın zorluğuna ilişkin görüşlerinde kamp sonrası anlamlı bir iyileşme olduğu görüldü (p= 0.039). Sonuç: Ergenler için düzenlenen PKU kampları, PKU hastalarının algılarını iyileştirmede etkilidir. Ancak, daha iyi sonuçlar elde etmek için PKU kamplarının süresini ve sıklığının arttırması faydalı olacaktır.

Anahtar Kelimeler:

Fenilketonüri, sosyalleşme, hastaların eğitimi, Fenilketonüri kampı, adölesanlar

Effects of A Phenylketonuria Camp on Knowledge and Attitudes of Adolescents with Phenylketonuria

Objective: This study aimed to determine the effect of a phenylketonuria camp on adolescents with phenylketonuria (PKU). Material and Methods: A small cohort-type study was carried out with 67 participants between the ages of 12-16. Participants were selected from PKU patients who were attended a PKU camp, organized for patients with phenylketonuria, aiming socialization, disease-related information transfer, and providing pleasant time with various social activities. Besides the patients, specialists of pediatric metabolism, psychologist and dieticians attended the camp. The study questionnaire was applied by a face-to-face interview on the first and last days of the camp. The primary outcome Questions were asked about PKU perception, and knowledge scores were calculated for each participant by adding the number of correct answers in the 10-item test. Results: Of the participants, 34 (50.7%) were females, while 33 (49.3%) were males. Twenty-one (31.3%) patients had another family member with phenylketonuria. The mean knowledge scores were already high at the beginning of the PKU camp (median 8, min. 4, max. 10). When the patients’ knowledge of PKU was compared, there was no significant difference between before (7.40±1.62) and after (7.72±1.80) the camp (p=0.097). However, it was found that the opinions of the participants about the difficulty of being a PKU patient improved significantly (p= 0.039). Conclusion: A PKU camp for adolescents is effective in improving the perceptions of the participants. However, it would be beneficial to increase the duration and frequency of PKU camps to achieve better outcomes.

Keywords:

Phenylketonuria, Socializing, Education of Patients, Phenylketonuria Camp, Adolescents,

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