2017
DOI: 10.1016/j.pedhc.2017.02.004
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Abstract: Congenital adrenal hyperplasia (CAH) is an endocrine condition that requires parents to administer steroids up to three times daily, supplementing maintenance doses with oral or injectable doses during times of illness. The purpose of this integrative review was to explore the management, care and associated health issues for children with CAH as well as the family response to the condition. Four literature indexes were searched with 39 articles included. Four themes emerged: 1) health and development related … Show more

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Cited by 15 publications
(9 citation statements)
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“…However, no better self‐reported adherence rate was found in our sub‐study, but this could be explained by a lack of power. Different self‐reported assessments of endocrine knowledge may be helpful for healthcare providers before practical CAH training for parents and patients in order to tailor information and to promote a positive outcome for patients with CAH 34 …”
Section: Discussionmentioning
confidence: 99%
“…However, no better self‐reported adherence rate was found in our sub‐study, but this could be explained by a lack of power. Different self‐reported assessments of endocrine knowledge may be helpful for healthcare providers before practical CAH training for parents and patients in order to tailor information and to promote a positive outcome for patients with CAH 34 …”
Section: Discussionmentioning
confidence: 99%
“…The data provide insight into the difficulties that families face prior to or during the diagnosis period and differences in experiences across countries were observed. Such differences have not been documented previously, as research focusing on parents’ experiences of managing the childhood condition has tended to recruit participants from a single country (Fleming et al 2017a ). Awareness of specific rare diseases amongst healthcare professionals is inevitably low, but as with many rare diseases, parents’ experiences suggest that there is probably variation across services in terms of awareness of CAH and the ability to make a timely diagnosis.…”
Section: Discussionmentioning
confidence: 99%
“…A recent review identified that current research in CAH still has a strong emphasis on potential health complications, emergency management and consequences of excess androgen exposure, whilst the management of CAH from the perspective of the family has been neglected (Fleming et al 2017a ).…”
Section: Introductionmentioning
confidence: 99%
“…) is a rare but serious condition proven to be fatal in the absence of appropriate hormonal replacement therapy (36). In most cases, both glucoand mineralocorticoid biosynthesis pathways are defective, leading to a salt-wasting syndrome, particularly difficult to manage in children (16). Herein, we report accurate measurements and a drastic accumulation of circulating 21-deoxysteroids (i.e., 17OHP, 21DF, and 21DB) in a pediatric cohort of 29 CAH patients with 21OHD, most notably in uncontrolled patients, that could impact mineralocorticoid signaling pathway.…”
Section: -Hydroxylase Deficiency (21ohdmentioning
confidence: 99%