NCT06280261

The Struggle That Is Phenylketonuria : What Do The Patients and Caregivers Suffer From

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 156 (actual)
• Sponsor: Hacettepe University · Academic / Other
• Sex: All
• Age: 6 Months – 35 Years
• Healthy volunteers: —

Summary

Objective: To assess the stress levels and life hardships of phenylketonuria patients and their parents.

Detailed description

Study Design: Between January 2020 - June 2020, a total of 156 phenylketonuria patients and their parents who arrived for their regular examinations were included. Parents were asked to fill the parenting stress index, Zarit burden scale and the strengths and difficulties questionnaire and children over the age of eleven were asked to fill the Rosenberg self-esteem scale, the stait-trait anxiety inventory and strengths and difficulties questionnaire.

Conditions

• Psychological Well-Being
• Caregiver Burden
• Life Stress

Interventions

Type	Name	Description
OTHER	parenting stress index, Zarit burden scale, Rosenberg self esteem scale, stait trait anxiety inventory, struggles and difficulties questionnaire	Scales and questionnaires

Timeline

• Start date: 2020-05-27
• Primary completion: 2020-09-01
• Completion: 2020-09-01
• First posted: 2024-02-28
• Last updated: 2024-02-28

Locations

1 site across 1 country: Turkey (Türkiye)