Video: The Role of GPs in the care of people with developmental disabilities such as Fragile X

October 15th, 2015

At the HealthEd GP Education Day held in Melbourne in October 2015, Dr Jane Tracy from the Centre for Developmental Disability Health Victoria gave an excellent presentation titled “GPs, Healthcare and Patients with Intellectual Disability and/or Autism”.

In this 27-minute video Dr Tracy had 5 key messages for GPs:

1. People with intellectual and associated disabilities have poorer health outcomes than people without a disability

2. Often other disabilities co-exist, but are often missed or not treated appropriately

3. Understanding the aetiology, or cause of a person’s disability, guides medical care

4. A change in a person’s behaviour is a form of communication, and GPs need to consider all physical and mental health factors that may contribute to the change

5. There are tools and resources available to help GPs mange the health care of people with intellectual disabilities

Accurate Diagnosis is Essential for Effective Healthcare Management

The message she emphasised most strongly was that understanding the aetiology, or cause of the person’s disability, informs the way a GP delivers medical care. She used Fragile X syndrome as an example to illustrate how the diagnosis is so important in helping GPs understand some of the behaviours that a person might show, in guiding the GP to offer genetic counselling for the family, and in making sure the GP regularly monitors for some of the health issues that are often associated with Fragile X syndrome such as hearing and vision problems, under-nutrition and mood disorders.

Dr Tracy also noted that more and more developmental disabilities are being identified as having a genetic basis. But for those people with intellectual disability for which there is no known cause, she recommends GPs conduct a genetic review every five years. At the end of the day, Dr Tracy explained, effective healthcare management depends on accurate diagnosis.

Many thanks to Healthed for supporting this and presentations at the GP conferences in 2015, which provided Fragile X Association of Australia with an unparalleled opportunity to profile Fragile X syndrome to the medical community.


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Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation (no matter how big or small) will help us maintain and deliver support and connections to the Fragile X community: 1. Counselling support 2. FXAA Helpline - available 5 days per week 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing study that we’re undertaking collaboratively with the Centre for Disability Studies is the first Australian study on the support needs, health & wellbeing of adults with Fragile X Syndrome as they age. All support is sincerely appreciated and helps us make a difference.

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