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Beyond geographical boundaries - the Ehlers-Danlos Syndromes pathway

Dr Sue Jackson is the Senior Clinical Editor for HealthPathways Western Australia, and Regional Clinical Advisor for Western Australia, Northern Territory, and South Australia. In this story, she shares her experiences of the “interesting journey” to developing the Ehlers-Danlos Syndromes pathway.


I was asked some time ago by Graham McGeoch if I would be interested in working on the Ehlers-Danlos Syndromes pathway. Always looking for a challenge I readily accepted.

Team Approach

This pathway was a collaborative team approach, with specialist input from the New Zealand Organisation for Rare Disorders (NZORD) which works with families and patients with rare disorders. The team included a New Zealand radiologist, rheumatologists, geneticists, and a physiotherapist who all worked together on the initial drafts. Our local geneticist here in Western Australia, Dr Nick Patcher, then reviewed the final draft for us.

The work proved to be an interesting journey both in terms of the pathway development, and my personal development as a clinical editor.

I believe that as we all move forward in this role we have pivotal pathways, those which challenge our writing skills and bring together all the training and words of wisdom which have been imparted over the years by Graham and the team. This pathway was one of them.


Challenges

One of the problems with this pathway was the enormous amount of information on this topic. There have been thirteen types of Ehlers-Danlos syndrome identified, three of which are more common and one, the vascular form of Ehlers-Danlos syndrome, that can be fatal from rupture of an arterial aneurysm.

My initial draft from NZORD was extensive, covering all the information on this subject. Although it was fantastic to have such a detailed draft to start with, I then faced the problem of how to reduce this whilst still retaining the essential information general practitioners need.

Although this is not a Base pathway, the principles pertaining to Base became very important in its writing:

  • What information do general practitioners actually need to know about EDS to understand the condition in its many different forms?
  • How can general practitioners easily assess patients for this complex set of conditions?
  • Where are the risks to the patient?
  • What do general practitioners need to know about the implications of EDS long term?

EDS is a chronic long-term condition where the patient suffers from repeated joint dislocations and subluxations, which are often not easy to manage and may result in long‑term problems with pain and joint stability.

What many of us will not know is that these patients react differently to local anaesthetics (slower onset and lesser effect) making surgery difficult, coupled with slower healing times.

On a more personal level, how could I do justice to this condition whilst producing a pathway that was both useful and easy to read for general practitioners?


Journey

As clinical editors, we face many challenges on a daily basis – my well-respected SMEs felt that all of their two pages of references were relevant – as well they were, but not to a time-poor general practitioner in the middle of a consult. This required multiple discussions between Matthew in New Zealand and myself in Western Australia, and was one of those situations we often face where geography prevents us from sitting down together and thrashing it out with coffee and doughnuts.

I needed to reduce the information to a simple, easily understood format and my SMEs supported me to maintain the clinical accuracy – to their credit they coped well with my copious information culls.

The other challenge with this type of pathway is whether we should even be writing pathways about rare disorders. The answer is probably to be selective, considering the likelihood of a significant general practitioner knowledge gap, with the risk of missing the diagnosis and providing poor treatment.


Sharing Significant Pathways

How can we let regions know when we’ve published a new pathway that may be of interest for them to localise? Many of you will have heard of the Lead Region Pathway Register and the Register of Contributing Organisations (see links below). These resources list when there has been this type of collaboration in pathway development.

Both the Lead Region Pathway Register and the Register of Contributing Organisations can be accessed via Online Help (see links below).

As a community, you can be the judge of the success of this pathway.

SueJacksonSatchmo

Dr Sue Jackson,  Senior Clinical Editor for HealthPathways Western Australia, and Regional Clinical Advisor for Western Australia, Northern Territory, and South Australia.


Acknowledgements

The EDS pathway was developed with thanks to:

  • Matthew Preston (Radiologist)
  • Dr Frazer Burling (Rheumatologist)
  • Rachel Callear (Paediatric Rheumatologist Physiotherapist)
  • Dr Priscilla Campbell-Stokes (Paediatric Rheumatologist)
  • Lisa Crawford (Relationship Manager NZORD)
  • Professor Stephen Robertson (Paediatric Genetics)
  • Dr Will Taylor (Rheumatologist)
  • Dr Ben Kamien and Dr Jennie Slee (both Consultant Clinical Geneticists)
  • Dr Nick Patcher (our local Geneticist)

Learn more in Online Help: