The psychological Adjustment of Children with Phenylketonuria

Jusienė, Roma; Bieliauskaitė, Rasa; Kučinskas, Vaidutis

doi:10.1037/e629872012-004

Cited by 3 publications

(3 citation statements)

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“…However, most previous studies focused on school‐aged children. A research in PKU children aged two to 14 years old suggested older PKU children had more psychological problems than healthy peers, but no differences were found in the younger groups 18 . In our study, we found that even PKU children within two to three years of age had a higher level of activity, had a more negative mood, were more intense in reactions, were more distractable and had more behavioural problems, including depression, aggression and destructibility.…”

Section: Discussioncontrasting

confidence: 58%

Mental and motor development and psychosocial adjustment of Chinese children with phenylketonuria

Sheng

Shao

et al. 2011

J Paediatrics Child Health

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Section: Discussioncontrasting

confidence: 58%

Mental and motor development and psychosocial adjustment of Chinese children with phenylketonuria

Sheng

Shao

et al. 2011

J Paediatrics Child Health

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“…В университете г. Вильнюса в 2002 г. проводили опрос 45 детей с ФКУ в возрасте от 2 до 14 лет и их родителей, результаты которого показали, что в подростковом возрасте дети с ФКУ имели значительно больше психологических проблем, чем в младшем возрасте. Различия в психоэмоциональном статусе были выявлены также при сравнении ответов подростков с ФКУ и их здоровых сверстников [14].…”

Section: Discussionunclassified

Assessment of the Life Quality in Children with Phenylketonuria

Бушуева

Vinyarskaya

Chernikov

et al. 2014

ARAMS

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Background: Phenylketonuria (PKU)-the most common inherited disorder of amino acid metabolism, identified in Russia by neonatal screening. The results of dietary treatment demonstrate a positive effect. However, the quality of PKU patients life remains unknown. Objective: The aim of the study was to assess the quality of PKU children life in comparison with their healthy peers, also depending on the treatment onset and the patient's age. Methods: The study involved 64 pairs-PKU child and one of his parents. It was used the common questionnaire survey Pediatric Quality of Life Inventory (PedsQLtm4.0, Varni et al., USA, 2001) and the program SPSS v. 14.0 (US) for statistical processing of the results. Results: The statistically significant (p <0.001) differences between PKU patients and healthy children in the physical, emotional, social and role functioning were found. The most pronounced differences were observed in the social (70 points vs 90 respectively) and role (57.5 vs 80 respectively) functioning. Maximum significant correlation (p <0.001) was installed between the social functioning of PKU patients and timing of the dietary treatment. Also the statistically significant interaction (p <0.05) was found between the role functioning, patient's age and treatment onset. The assessment points of social and role functioning were higher (p <0.05) in the PKU patients subgroup with early treatment initiation. Conclusion: These results confirmed the need of early diagnostics of PKU and initiation of dietary treatment, as well as the organization of timely psychological support for parents of sick children.

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“…Jusiene and Kucinskas compared children with phenylketonuria with healthy controls and showed that patients with phenylketonuria had more emotional and behavioral problems. [ 31 ] In a study by Palermo et al, it was shown that difficulty in maintaining a diet causes emotional problems. [ 32 ] The serum phenylalanine level at the time of diagnosis indicates the level of the patient’s disease, and the higher it is, the more difficult it will be to control the disease and the more dietary phenylalanine restriction will be required.…”

Section: Discussionmentioning

confidence: 99%

The struggle that is phenylketonuria: What do the patients and caregivers suffer from

Demirel,

Sivri

2024

Medicine

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To assess stress levels and life hardships of patients with phenylketonuria and their parents. Between January 2020 and June 2020, 156 patients with PKU and their parents who arrived for regular examinations were included. Parents were asked to complete the parenting stress index, Zarit Burden Scale, and the Strengths and Difficulties Questionnaire (SDQ), and children over the age of 11 were asked to fill the Rosenberg Self-Esteem Scale, the State-Trait Anxiety Inventory, and the SDQ. We found a significant negative correlation between the Rosenberg Self-Esteem Scale and age at diagnosis (r = −0.27, P = .035), mother’s age (r = −0.33, P = .009), and father’s age (r = −0.38, P = .004). There was a significant positive correlation between the State-Trait Anxiety Inventory and patient’s age (r = 0.36, P = .006), mother’s age (r = 0.29, P = .031) and father’s age (r = 0.38, P = .024). In the child form of the SDQ, emotional problems were significantly positively correlated with serum phenylalanine (Phe) levels at diagnosis (r = 0.35, P = .036), total points were significantly positively correlated with serum Phe levels at clinical examination (r = −0.34, P = .004), and social problems were significantly negatively correlated with the father’s age (r = −0.34, P = .047). We found a significant positive correlation between the Zarit Burden Scale and number of siblings (r = 0.195, P = .023). In the parent form of the SDQ, emotional problems were significantly positively correlated with patient age (r = 0.217, P = .032), peer problems were significantly positively correlated with age at diagnosis (r = 0.211, P = .037), behavioral problems (r = 0.203, P = .045), and attention deficit and hyperactivity (r = 0.203, P = .045) were significantly positively correlated with serum Phe levels at diagnosis. Phenylketonuria is difficult to cope with both for the patients and their parents because of diet obligation, high expenditures for the formulas required for the diet, requirement of regular clinical examinations, and possible development of mental disability and psychiatric disorders. Patients and their families should be psychologically evaluated and support should be provided if needed.

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The psychological Adjustment of Children with Phenylketonuria

Cited by 3 publications

References 0 publications

Mental and motor development and psychosocial adjustment of Chinese children with phenylketonuria

Mental and motor development and psychosocial adjustment of Chinese children with phenylketonuria

Assessment of the Life Quality in Children with Phenylketonuria

The struggle that is phenylketonuria: What do the patients and caregivers suffer from

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