Take the Challenge

Newton, Kimberly P.; Lamarche, Kimberley

doi:10.1097/nhh.0b013e318252c3d5

Cited by 11 publications

(2 citation statements)

References 23 publications

(43 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…For more background information and strategies to improve support for parents of chronically ill children, see e.g. Newton and Lemarche [71]. Quality of life assessment and the evaluation of disease burden in family members of AADCD patients are an essential part of the ongoing iNTD registry study [9].…”

Section: Part V: Social Issues and Transitionmentioning

confidence: 99%

Consensus guideline for the diagnosis and treatment of aromatic l-amino acid decarboxylase (AADC) deficiency

Wassenberg

Molero-Luís

Jeltsch

et al. 2017

Orphanet J Rare Dis

176

320

View full text Add to dashboard Cite

Aromatic L-amino acid decarboxylase deficiency (AADCD) is a rare, autosomal recessive neurometabolic disorder that leads to a severe combined deficiency of serotonin, dopamine, norepinephrine and epinephrine. Onset is early in life, and key clinical symptoms are hypotonia, movement disorders (oculogyric crisis, dystonia, and hypokinesia), developmental delay, and autonomic symptoms.In this consensus guideline, representatives of the International Working Group on Neurotransmitter Related Disorders (iNTD) and patient representatives evaluated all available evidence for diagnosis and treatment of AADCD and made recommendations using SIGN and GRADE methodology. In the face of limited definitive evidence, we constructed practical recommendations on clinical diagnosis, laboratory diagnosis, imaging and electroencephalograpy, medical treatments and non-medical treatments. Furthermore, we identified topics for further research. We believe this guideline will improve the care for AADCD patients around the world whilst promoting general awareness of this rare disease.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-016-0522-z) contains supplementary material, which is available to authorized users.

show abstract

Section: Part V: Social Issues and Transitionmentioning

confidence: 99%

Consensus guideline for the diagnosis and treatment of aromatic l-amino acid decarboxylase (AADC) deficiency

Wassenberg

Molero-Luís

Jeltsch

et al. 2017

Orphanet J Rare Dis

176

320

View full text Add to dashboard Cite

show abstract

“…Hence, parenting a child with a longstanding illness is reported to be challenging because of illness-specific demands [29][30][31]. Investigating the role played by the parents of chronically ill children in their children's development and trying to define the aim of training programs for parents of chronically ill children (research question 2), we revealed that:…”

Section: Literature Review Resultsmentioning

confidence: 99%

Hospital School: Investigating the Practical Aspects of Teacher and Parent Training

et al. 2021

View full text Add to dashboard Cite

The purpose of this paper is to investigate the practical aspects of training for parents and teachers of chronically ill children who are under long-term treatment in medical institutions. The paper identifies knowledge, attitudes and practices associated with both formal and non-formal education programs for teachers and parents of children undergoing long-term in-patient treatment. Innovative practices used in Moscow City Pedagogical University are presented, including educational techniques, methods and formats for training teachers and parents of children undergoing long-term treatment together with the results of parent surveys and interviews. The paper describes the benefits of a specially designed program of parent professional retraining to provide tutor support for children with long-term illnesses. Integrating the best informal training practices and formal training modules, this program allows for successful tutoring for children with long-term illnesses.

show abstract

A Holistic Approach to Meeting Physical, Social and Psychological Needs

Hodges¹,

Tod²

2020

Nursing Care of Children and Young People With Long‐Term Conditions

View full text Add to dashboard Cite

Take the Challenge

Cited by 11 publications

References 23 publications

Consensus guideline for the diagnosis and treatment of aromatic l-amino acid decarboxylase (AADC) deficiency

Consensus guideline for the diagnosis and treatment of aromatic l-amino acid decarboxylase (AADC) deficiency

Hospital School: Investigating the Practical Aspects of Teacher and Parent Training

A Holistic Approach to Meeting Physical, Social and Psychological Needs

Contact Info

Product

Resources

About