CLAN in Vietnam

CLAN in Vietnam

We have been working in Vietnam for the past 10 years, and earlier this year Dr Kate Armstrong and Irene Mitchelhill traveled to Vietnam for a whirlwind visit for the Asia Pacific Paediatric Endocrine Society and National Hospital of Paediatrics Annual Clinical Medical Education Update and CLAN CAH meeting for adolescents and young women.

Hanoi: 21-23 May, 2016

Whilst being in Ha Noi to participate in the APPES CME meeting, Saturday and Sunday 21st & 22nd May, 2016, we took the opportunity to run a Congenital Adrenal Hyperplasia (CAH) Club meeting supported by CLAN (Caring & Living As Neighbours).

This CAH Club meeting was able to utilise the expertise of two invited speakers for the Asia Pacific Pediatric Endocrinology (APPES) Continuing Medical Education (CME) meeting, specifically for the adolescent girls and young women with CAH, and focus the presentations around adolescent pubertal and gynaecological issues which can present for this population of young women.  It was hoped that this could be an intimate group meeting with adolescents and young women, but the word spread about the planned CAH Club meeting, and 130 patients and their extended families attended the afternoon.  There were over 250 parents, patients and siblings in attendance.

Following questionnaire completion at registration and introductions by hospital representatives and Dr Kate Armstrong from CLAN, the program covered general Adolescent & Adult issues in a video presentation by Professor Kate Steinbeck,  a Consultant endocrinologist to the Sydney Children’s Hospital Network. Next was a presentation on sick day management issues by Irene Mitchelhill, Clinical Nurse Consultant ( CNC) and nurse expert in the care of patients with CAH.  The families were then divided into two separate discussion groups: one for families with boys and another for families with girls, to allow group leaders to focus on the needs of each of the gender specific group.   

Dr Rebecca Deans, Adolescent gynaecologist and Ms Jennifer Morrisey, Specialist nurse from the Royal Hospital for Women in Sydney, Australia were able to share their expertise with patients and families of young women with CAH.  In addition, a personal message, written by a young Australian woman living with CAH, was read to the adolescent girls and young women, sharing a successful experience with corrective gynaecological surgery and post operative management.  A visit to the National Hospital of Paediatrics was also included in the planning, where consultations were held with patients who were interested in utilising the expertise of these two visiting consultants.

Specific topics for the girls’ groups included issues on the management of excess virilisation of girls at birth, their gynaecological needs at puberty and also their needs for successful sexual relationships in future.  In general topics focussed on the importance of compliance with medication in both boys and girls to prevent the onset of early puberty and to promote a positive long term outcome generally but also for fertility in adult years.   Concerns were raised by families about adequate access to medication, and most specifically regarding affordable access to Florinef.

I would like to thank Dr Thao Bui for his efforts in being the medical translator for most of the oral presentations and Dr Ngoc Bich for organising the CAH Club meeting and providing presentations for the families.

It is hoped that our recent visit to Ha Noi, will encourage the ongoing planning for future ongoing CAH Club meetings on a regular basis, as the local club had not met since our last visit 3 years ago.

  Hue: 27th May

Whilst in Vietnam, Irene Mitchelhill  (CNC) travelled further south to visit the city of Hue.  Whilst there she  took the opportunity visit the Central Hospital of Vietnam and present a sessions a Clinical Medical Education update for the staff and students.  The sessions covered Normal Growth and its Variants and the Principles of Dynamic Testing.  A session planned on Adolescence Hormone Replacement: Facing the Challenge was held over, owing to constraints of time.  

In the afternoon, with thanks again to CLAN for financial support, the Hue CAH Club ran a meeting arranged by Dr Nguyen Thi Diem Chi and her team, with 35 children and their extended families attending. There were many new families with quite young children - all looking extremely worried and concerned about their child having CAH - as well as some longer term patients attending.  We hope that the information they received and the chance to meet with other families was beneficial to them all, and that they can feel more confident in managing their child’s care moving forward.   Presentations included surgical options by Dr Tien (MD, PhD) and current advances in pregnancy and genetics of CAH by Dr Nguyen Thi Diem Chi. A practical session was then held with a talk on Sick Day Management and what to do, followed by an injection practise of Hydrocortisone administration, run by Irene with the assistance of the local nurses and Dr Chi to translate.

Thanks to generous support from Pfizer Australia, CLAN was pleased to be able to provide each family with an injection kit and translated instruction leaflets for their use when their child is unwell. Families are able to access Hydrocortisone for injection from their local health professionals.

I would like to thank Prof Bui Duc Phu, and Dr Nguyen Thi Diem Chi and their staff, for the invitation to visit and for Dr Chi’s expertise in the extensive translation if the CME presentations.  I was very grateful for their hospitality during my stay in the beautiful city of Hue.

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