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Published on: August 21, 2015
[Psychological adjustment of children with phenylketonuria]
Roma Jusiene1, Loreta Cimbalistiene, Rasa Bieliauskaite
1Vilniaus universiteto Klinikines ir socialines psichologijos katedra, Didlaukio 47, 2057 Vilnius. romajusiene@hotmail.com
Insights
Older children with phenylketonuria (PKU) experience more psychological issues than peers. Parental adjustment to chronic illness correlates with PKU children's behavioral problems.
Area of Science:
- Medical Genetics
- Developmental Psychology
- Pediatric Psychiatry
Background:
- Phenylketonuria (PKU) is an inherited metabolic disorder requiring early dietary management to prevent severe intellectual disability.
- While early treatment mitigates cognitive deficits, PKU patients often exhibit emotional and behavioral challenges.
- Emerging research suggests psychological factors, not solely phenylalanine levels, contribute to these issues.
Purpose of the Study:
- To assess the psychological adjustment of children with phenylketonuria in Lithuania.
- To identify potential contributing factors to psychological difficulties in pediatric PKU patients.
Main Methods:
- Utilized the Lithuanian version of the Child Behavior Checklist (CBCL) for 45 PKU children and 45 controls (ages 2-14).
- Administered a questionnaire to parents regarding their reactions to their child's chronic illness.
- Correlated behavioral data with mean phenylalanine (Phe) levels and IQ scores where available.
Main Results:
- Older PKU children (compared to controls) demonstrated significantly more psychological problems.
- No significant psychological differences were observed between younger PKU children and their healthy peers.
- Parental maladjustment to the chronic nature of PKU was linked to increased internalizing and other behavioral issues in affected children.
Conclusions:
- Age is a critical factor in the manifestation of psychological problems in phenylketonuria.
- Parental coping strategies and adjustment play a significant role in the emotional well-being of children with PKU.
- Further research into psychological interventions is warranted for older PKU patients.
Introduction:
Phenylketonuria is an inherited disorder, which prevents the normal use of protein food and causes changes in body chemistry, which, if left uncontrolled can lead to severe learning disabilities. By following a strict low protein diet early from birth phenylketonuria children can avoid mental retardation, other somatic as well as psychiatric disorders. However, early treated children with phenylketonuria are found to have more emotional and behavioral problems. Because of the lack of correlation between elevated phenylalanine (Phe) levels and psychological adjustment recent studies strongly indicate a psychological perspective for the development of emotional and behavioral problems in phenylketonuria patients. THE AIM OF PRESENT STUDY: To evaluate psychological adjustment of Lithuanian phenylketonuria children and to find out possible reasons for psychological problems of phenylketonuria children.
Methods:
Parents of 45 phenylketonuria children and 45 normal controls aged 2 to 14 years old were asked to fill in Lithuanian version of Child Behavior Checklist (CBCL, Achenbach, 1991) and a questionnaire on reactions to child's disease. The mean Phe level and IQ of some phenylketonuria children were considered as well.
Results And Conclusions:
Older phenylketonuria children have significantly more psychological problems than healthy peers. There were no such considerable differences found in younger groups. Parental maladjustment to child's chronic illness is related to higher levels of internalizing and other problems of phenylketonuria children.
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