Acıbadem Üniversitesi Sağlık Bilimleri Dergisi 2019 , Vol 10, Issue 4
Challenges of Patients With Phenylketonuria In Social Life: a Qualitative Research
İsmail Mücahit Alptekin1,Funda Pınar Çakıroğlu1
1Ankara Üniversitesi, Beslenme ve Diyetetik, Ankara, Türkiye DOI : 10.31067/0.2019.227 Objectives: Protein-restricted diet is a key factor in the treatment of PKU. However, dietary rules such as limited food/ special product consumption for a lifelong can adversely affect the life of PKU patients. In this study, it was aimed to investigate the challenges that PKU, an inherited autosomal recessive disease, causes in social life of PKU patients.

Study Design: This qualitative study used a semi-structured interview technique that included PKU patients (n=63) who were reached by the PKU Family Association. Firstly, demographic information such as age and gender, then questions about the disease and diet, lastly how living with PKU felt were asked.

Results: 65,1% of patients are girls and 34,9% are men/boys and the mean age of the patients was 15,7±6,4 years. The majority of the patients (63,5%) think that they are fed adequately and equally. Most of the participants stated that the reason for lack of adequate-balanced nutrition is the consumption of limited foods due to diet. Patients gave the answer as no with 61,9% in case of dietary lapse. Many of PKUs who stated that they had a dietary lapse have indicated that they had a desire to other foods(or craved for other food). It was concluded that younger patients with PKU have more difficulties in social life.

Conclusion: This study is an important and unique study in our country that has a very high prevalence of PKU. There is a need for more studies about the difficulties that PKU patients and their families face in social life. Keywords : Phenylketonuria, quality of life, diet