Phenylketonuria, PKU
Conditions
Interventions
Mobile Health Intervention Group:Mobile health intervention
Conventional Health Education Group:Regular health education
Sponsors
Inner Mongolia Maternal and Child Health Hospital
Eligibility
Sex/Gender
All
Age
No minimum to 11 Years
Inclusion criteria
Inclusion criteria: 1. Age: 0<=Age<12 years, any gender; 2. The child meets the relevant diagnostic criteria for PKU in the "Guideline for the Diagnosis and Treatment of Rare Diseases (2019 Edition)" and has been genetically confirmed as a child with PKU; 3. The child's parents or primary caregivers must be able to use WeChat and have normal language expression abilities; 4. Understand and agree to accept the intervention, willing to fully cooperate with the intervention measures and follow-up examinations, and sign an informed consent form.
Exclusion criteria
Exclusion criteria: 1. The child's parents or primary caregivers have no fixed contact information and cannot conveniently use WeChat daily; 2. The child and the primary caregivers have other systemic serious diseases and severe physical dysfunction; 3. The child and the primary caregivers exhibit mental symptoms such as unclear consciousness and speech, and lack of cooperation; 4. The child and the primary caregivers are taking any psychotropic medications; 5. Have participated in other clinical trials; 6. Other reasons make them unsuitable to participate in the trial.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Fasting peripheral serum phenylalanine;Fasting peripheral serum tyrosine; | — |
Secondary
| Measure | Time frame |
|---|---|
| Nutritional indicators;Intellectual Development Scale;Primary caregiver adherence;Anxiety and depression in primary caregivers;General self-efficacy of primary caregivers;Parenting stress for primary caregivers;Parenting guilt;Family Health;Family communication; | — |
Countries
China
Contacts
Public ContactXiaohua Wang
Inner Mongolia Maternal and Child Health Hospital
Outcome results
None listed