When I joined PPMD in 2012, care for Duchenne was all over the map.
Sadly, there were over 150 clinics spread across the US, but there was no oversight of these clinics – the community did not know who was providing care, the level of care being provided or whether anyone at the clinic actually knew anything about Duchenne.
Parents were tired of guessing at who was at the clinics, and then struggling when they discovered that subpar care was being provided to their child. Everyone knew the two clinics in Ohio were amazing, but not everyone could come to Ohio.
Working at Cincinnati Children’s Hospital Medical Center (CCHMC), I watched families agonize with these burdensome decisions:
- Can we afford to travel across the country every 6 months?
- What if our insurance doesn’t pay for the visit?
- What do we do about emergencies at home?
- What do we do when our child becomes older and can’t travel as easily?
And when it became clear that some families could not, in fact, make these visits, I watched families deal with the devastation of feeling that they were not doing the best that they could for their child.
PPMD knew there had to be a better way.
And in 2012, we began to develop that better way.
What are the elements of ‘comprehensive care’?
Parents and medical providers gathered at the first Transforming Duchenne Care meeting to discuss care. We identified the five domains of comprehensive Duchenne care and developed core groups of experts in these domains to list important elements of care for each of those domains:
- Coordination / Communication
- Neuromuscular Care
- Pulmonary Care
- Cardiac Care
- Endocrine / Bone Health
How do we evaluate provided care?
We put together survey to see who was on the neuromuscular teams and what care they were providing. We used the Care Considerations as a benchmark for evaluating care. We decided to include site visits, with interviews and chart reviews, to substantiate the care that was reported in the surveys. We developed the Clinical Experiences Survey so that patients and families could let us know how they felt about the care they were receiving.
Then we set out – to identify and certify clinics across the country that could provide our required level of care and services and become Certified Duchenne Care Centers.
And PPMD’s Certified Duchenne Care Center Program was born!
How do we make the best care available to more families?
In two years, I have visited more than 20 clinics across the country. We have identified 12 clinics that met the requirements to be Certified Duchenne Care Centers; we have developed plans for 8 clinics who could not yet meet the requirements, but who wanted to work to meet those requirements, so that they could provide the best care for their Duchenne families.
These centers are all to be commended – they have put in the time and the effort to meet our robust requirements. These are the centers and providers who went “the extra mile.” I am truly humbled by their expertise, and their dedication to our community – I feel honored to work with them every day.
PPMD’s Certified Duchenne Care Center program has made comprehensive Duchenne care more accessible and available for families:
- We have standardized care in agreement with the Care Considerations at Certified Duchenne Care Centers, many of which are major clinical trial sites, eliminating variability in care and strengthening outcome measures at those sites.
- We have created a network of subspecialties across centers that collaborate on issues and projects.
- By raising the bar for Duchenne care at these centers, we have raised the bar for all neuromuscular conditions treated by those centers.
- We have identified gaps in care and research and have convened meetings to address those gaps (bone health, pulmonary outcomes, acute cardiac issues).
- We have received funding to provide Research Liaison Grants to each of the centers that will allow someone in each of the centers to see each Duchenne family at each visit and talk with them about research happening at both their center and other centers that may be appropriate for them/their child.
We have taken a system that was in place and made it infinitely better for families living with Duchenne.
PPMD has made a difference.
But we aren’t finished yet!
PPMD continues to work with centers that apply for certification and with those centers still working to meet requirements. In the first half of 2017, we expect to certify at least three more clinics, with others just around the corner. Visit our site for a complete list of current clinics.
Every year, we share the results of the Clinical Experiences Surveys with the Certified Duchenne Care Centers and address suggestions made during our site visit, in an effort to continuously improve care.
We have recently added a charter to our Standards for Certification document for global certification, so that this level of standardized comprehensive care can be possible for families around the world.
I had no idea, when I left CCHMC, that this was where life would take me. What an adventure it has been – and continues to be! I could not be more proud of PPMD’s efforts.
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