Objective: Congenital adrenal hyperplasia (CAH) has the potential to place an enormous burden on families in resource-poor countries, and the aim of this survey was to provide more specific insights into the difficulties faced by families living with CAH in Vietnam. It is hoped that this information will be used to ensure that future efforts to reduce the burden of CAH are as effective, sustainable and appropriate as possible. Design and Methods: A questionnaire-based needs assessment survey was offered to parents of children with CAH who were attending the Annual CAH Support Group Meeting held at the National Hospital of Pediatrics (NHP) in Hanoi, Vietnam, on 10 th June 2005. Results: Fifty-three families responded to the questionnaire. Information pertaining to the purchase and use of medication to treat CAH, access to medical care, surgical treatment for girls, and a wide range of parental concerns was collected. Conclusions: This survey highlights the heavy burden that CAH places on families in Vietnam, and provides significant insights into various initiatives that could well help ease this suffering. In particular, efforts must be made to ensure essential medication is affordably available, communication of important messages to parents is enhanced, local support groups encouraged, and early diagnosis and medical treatment of CAH optimized so as to reduce morbidity and mortality.
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.
The evidence underpinning the developmental origins of health and disease (DOHaD) is overwhelming. As the emphasis shifts more towards interventions and the translational strategies for disease prevention, it is important to capitalize on collaboration and knowledge sharing to maximize opportunities for discovery and replication. DOHaD meetings are facilitating this interaction. However, strategies to perpetuate focussed discussions and collaborations around and between conferences are more likely to facilitate the development of DOHaD research. For this reason, the DOHaD Society of Australia and New Zealand (DOHaD ANZ) has initiated themed Working Groups, which convened at the 2014-2015 conferences. This report introduces the DOHaD ANZ Working Groups and summarizes their plans and activities. One of the first Working Groups to form was the ActEarly birth cohort group, which is moving towards more translational goals. Reflecting growing emphasis on the impact of early life biodiversity - even before birth - we also have a Working Group titled Infection, inflammation and the microbiome. We have several Working Groups exploring other major non-cancerous disease outcomes over the lifespan, including Brain, behaviour and development and Obesity, cardiovascular and metabolic health. The Epigenetics and Animal Models Working Groups cut across all these areas and seeks to ensure interaction between researchers. Finally, we have a group focussed on 'Translation, policy and communication' which focusses on how we can best take the evidence we produce into the community to effect change. By coordinating and perpetuating DOHaD discussions in this way we aim to enhance DOHaD research in our region.
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