Volume 2015 Supplement 1

Abstracts from the 8th APPES Biennial Scientific Meeting

Open Access

Evaluation of parental knowledge after establishing CAH clubs in Vietnam & Indonesia

  • Irene Mitchelhill1,
  • Kate Armstrong2,
  • Maria Craig3,
  • Vu Chi Dung4,
  • Bui Phuong Thao4,
  • Nguyen Ngoc Khanh4,
  • Thi Bich Ngoc4,
  • Thuy Thi Diem Hoang5, 6,
  • Huynh Quynh5,
  • Dong Trieu Phuong Tran5,
  • Pham Ngoc Trach6,
  • Huynh Thoai Loan6,
  • Nguyen Phuong Khanh7,
  • Tran Thi Bich Huyen7,
  • Aman Pulungan8 and
  • Frida Soesanti8
International Journal of Pediatric Endocrinology20152015(Suppl 1):P53

DOI: 10.1186/1687-9856-2015-S1-P53

Published: 28 April 2015

The incidence of Congenital Adrenal Hyperplasia (CAH) in some Asian countries is far higher than in Australia, (eg 1:6000 as per the Filipino Newborn Screening Program). For many families in low and middle-income countries in Asia resources are limited, affordable and reliable access to essential medicines is problematic, and families living remotely are required to travel long distances for medical care [1]. CAH is associated with significant physical & psychosocial consequences for affected children & their families where treatment is suboptimal, so there are important equity implications for the global CAH and paediatric endocrinology communities to consider.

Health education is an integral component of health care in any setting. “CAHPepTalk” is an educational resource that was developed initially for CAH families in Australia. This validated educational resource has been produced in DVD format and can be facilitated by one health professional. The program includes a translated validated CAH Knowledge Assessment Questionnaire (CAHKAQ) [2], to enable staff to assess patient knowledge in order to evaluate educational needs.

In collaboration with CLAN (Caring & Living As Neighbours), an Australian NGO committed to optimal quality of life for all children living with chronic health conditions), translation of “CAHPepTalk” into Vietnamese & Indonesian was undertaken, & distributed to CAH Communities in the Asia-Pacific region, was supported by CLAN.

Knowledge of parents of children with CAH in Vietnam and Indonesia was assessed prior to families attending education programs run at CAH Club meetings supported by CLAN, in 3 settings: Hanoi, Ho Chi Minh City & Jakarta. 260 questionnaires have been completed by parents. The results to be presented will include knowledge, management & demographics.

Using the CAHKAQ is the first step in the education process in order to improve health outcomes for families in any setting, within Australia, Vietnam or Indonesia.

Authors’ Affiliations

(1)
Department of Endocrinology, Sydney Children’s Hospital (SCHN)
(2)
CLAN: Caring Living with Neighbours
(3)
Department of Endocrinology, Children’s Hospital (SCHN) Westmead
(4)
Department of Endocrinology, National Hospital of Pediatrics
(5)
Department of Nephrology-Endocrinology, Children's Hospital 2
(6)
Department of Pediatrics, Faculty of Medicine, University of Medicine
(7)
Department of Nephrology-Endocrinology, Children’s Hospital 1
(8)
Department of Child Health, Faculty of Medicine, University of Indonesia

References

  1. Armstrong K, Henderson C, Hoan N, Warne G: Living with Congenital Adrenal Hyperplasia in Vietnam: A survey of Parents. Journal of Pediatric Endocrinology & Metabolism. 2006, 19: 1207-1223.View ArticleGoogle Scholar
  2. King J, Mitchelhill I, Fisher M: Development of a Congenital Adrenal Hyperplasia Knowledge Assessment Questionnaire (CAHKAQ). Journal of Clinical Nursing. 2008, 17 (13): 1689-1696. 10.1111/j.1365-2702.2006.01851.x.View ArticlePubMedGoogle Scholar

Copyright

© Mitchelhill et al; licensee BioMed Central Ltd. 2015

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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