Health-Related Quality of Life in Children and Adolescents with Nonclassic Congenital Adrenal Hyperplasia

Brener, Avivit; Segev-Becker, Anat; Weintrob, Naomi; Stein, Ronnie; Interator, Hagar; Schachter-Davidov, Anita; Israeli, Galit; Elkon-Tamir, Erella; Lebenthal, Yael; Eyal, Ori; Oren, Asaf

doi:10.4158/ep-2018-0617

Cited by 8 publications

(11 citation statements)

References 16 publications

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“…Parents' report score results of children aged 5-7 years were lower on emotional and school functioning, however, without statistical significance. This is in line with previous reports of Brener et al, who examined NC-CAH patients and compared them to their healthy siblings and showed no difference between the total scores and the scale and sub-scale scores for HRQoL [ 11 ]. A Dutch study involving children with CAH, including NC-CAH, and their parents also showed no reduction in HRQoL of these patients [ 20 ].…”

Section: Discussionsupporting

confidence: 92%

“…The non-classical form (NC-CAH) is characterised by a less severe deficiency and manifests as increasing virilisation before puberty without genital ambiguity [ 2 , 10 ]. NC-CAH is more prevalent than the classic form, estimated to affect 0.1-0.2% of the population [ 11 ]. It is also more frequently observed in females, as males with NC-CAH have less recognized signs of androgen excess [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

“…Awareness of a medical condition, symptoms of hyperandrogenism and consequent virilisation, the burden of daily medication administration, the fear of an adrenal crisis, and fluctuating adrenal androgen levels may negatively impact the quality of life (QoL) of CAH patients [ 10 , 11 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

“…Health-Related QoL (HRQoL) has been increasingly used as a supplement to clinical treatments, ensuring that the patients' perspective on the disease, the need for care, and their preferences for treatment modalities are considered. HRQoL in patients with CAH (including NC-CAH) has been widely studied; however, to our knowledge, investigation on HRQoL of NC-CAH patients exclusively is scarce [ 11 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

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Quality of Life in Children Diagnosed With Non-classic Congenital Adrenal Hyperplasia

Ferreira¹,

Moita²,

Borges‐Canha³

et al. 2021

Cureus

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BackgroundNon-classical congenital adrenal hyperplasia (NC-CAH) is a chronic disease characterised by excessive androgen production that may negatively affect the quality of life (QoL) of affected patients. Pediatric Quality of Life Inventory 4.0 (PedsQL™) is a validated tool to assess health-related QoL (HRQoL). MethodsA cross-sectional study including 19 patients with NC-CAH was carried out in the pediatric endocrinology department. NC-CAH patients who agreed to participate were included. Anthropometric data was collected. PedsQL™ was applied to the patients and their parents. Patients were divided into four groups according to age: 2-4, 5-7, 8-12, and 13-18 years old. The control group consisted of healthy individuals from the instrument's validation studies for the Portuguese population and the standard control population used in the PedsQL™ validation study. ResultsThe only difference found concerns the parents' score results for children aged 8-12, which showed physical health and emotional dimension scores significantly higher (86.16±9.86 vs. 68.90±23.02 p=0.004, 69.17±14.14 vs. 65.82±19.24 p=0.004), while psychosocial health's score and total scale score were significantly lower than the control group (59.99±9.90 vs. 69.34±14.07 p=0.047, 73.11±4.65 vs. 78.86±16.61 p=0.017). ConclusionHRQoL scores are not negatively affected by NC-CAH in most group ages, with the exception of the parents' reports on HRQoL for children aged 8-12. Further studies with a greater number of patients are needed to determine the impact of this chronic disease on the HRQoL of children.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Quality of Life in Children Diagnosed With Non-classic Congenital Adrenal Hyperplasia

Ferreira¹,

Moita²,

Borges‐Canha³

et al. 2021

Cureus

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“…Reduced activity or absence of 21-hydroxlase impairs cortisol and aldosterone production, and diverts hormone biosynthesis precursors to excess androgen production. Whilst CAH is unquestionably a complex health condition to manage, internationally recognized clinical guidelines now provide evidence-based recommendations regarding the appropriate management of CAH to support affected individuals so they might enjoy the highest quality of life possible [1][2][3].…”

Section: Introductionmentioning

confidence: 99%

We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings

Armstrong

Yap²,

Chan-Cua

et al. 2020

IJNS

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CLAN (Caring and Living as Neighbours) is an Australian-based non-governmental organisation (NGO) committed to equity for children living with chronic health conditions in resource-poor settings. Since 2004, CLAN has collaborated with a broad range of partners across the Asia Pacific region to improve quality of life for children living with congenital adrenal hyperplasia (CAH). This exploratory case study uses the Knowledge to Action (KTA) framework to analyse CLAN’s activities for children living with CAH in the Asia Pacific. The seven stages of the KTA action cycle inform a systematic examination of comprehensive, collaborative, sustained actions to address a complex health challenge. The KTA framework demonstrates the “how” of CLAN’s approach to knowledge creation and exchange, and the centrality of community development to multisectoral collaborative action across a range of conditions, cultures and countries to redressing child health inequities. This includes a commitment to: affordable access to essential medicines and equipment; education, research and advocacy; optimisation of medical management; encouragement of family support groups; efforts to reduce financial burdens; and ethical, transparent program management as critical components of success. Improvements in quality of life and health outcomes are achievable for children living with CAH and other chronic health conditions in resource-poor settings. CLAN’s strategic framework for action offers a model for those committed to #LeaveNoChildBehind.

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The way toward adulthood for females with nonclassic congenital adrenal hyperplasia

et al. 2021

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Health-Related Quality of Life in Children and Adolescents with Nonclassic Congenital Adrenal Hyperplasia

Cited by 8 publications

References 16 publications

Quality of Life in Children Diagnosed With Non-classic Congenital Adrenal Hyperplasia

Quality of Life in Children Diagnosed With Non-classic Congenital Adrenal Hyperplasia

We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings

The way toward adulthood for females with nonclassic congenital adrenal hyperplasia

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