Phenylketonuria from the perspectives of patients in Türkiye.
Merve EsgiHakan ErgünNazmi Yalcin KayaDeniz Yilmaz AtakayEge ErucarFatma CelikPublished in: Orphanet journal of rare diseases (2024)
Access to the services should be easier to improve the patients' follow-up and treatment. There is need for low-cost, easily applicable, and accessible nutrition products and effective novel pharmacological agents. Focusing on these issues in health policies by providing pedagogic/psychological support, establishing support programs also comprising the families, and increasing the awareness activities were the key outcomes.
Keyphrases
- end stage renal disease
- public health
- healthcare
- ejection fraction
- newly diagnosed
- chronic kidney disease
- prognostic factors
- mental health
- peritoneal dialysis
- primary care
- adipose tissue
- physical activity
- type diabetes
- metabolic syndrome
- patient reported outcomes
- depressive symptoms
- health information
- insulin resistance
- health insurance
- replacement therapy
- glycemic control
- health promotion