With cerebral palsy (CP) affecting over 17 million people worldwide and 1 in 500 births, it is hard to believe that a definitive global source of information is yet to be developed; one that provides guidelines for the diagnosis and treatment of CP.
Although there have been guidelines written specifically for certain interventions, there has never been an international effort to say, “Globally, we believe these are the most effective forms of intervention for people with cerebral palsy”.
In an extraordinary coalition – championed by a respected global alliance and led by Cerebral Palsy Alliance’s Head of Research, Dr Iona Novak – the International Guidelines Project is tasked to develop international clinical practice guidelines for cerebral palsy.
“There is currently no definitive source of information for families and clinicians,” says Dr Novak. “Instead it’s pieced together from different sources. And because CP is so diverse, most of the information available has important caveats around it, which makes it difficult for families to know if the information is relevant to them or not.
“With the increasing pace of change in treatments and understanding of CP, existing sources of information become quickly out of date or are buried under a groundswell of information – some relevant, some not.
“What’s needed is a clear source of reference – parents say: ‘Tell me what’s the best thing for my child and I’ll do it!’”
Filling the gap
Dr Novak has been championing this cause for some while, previously leading a research group from Cerebral Palsy Alliance in Australia, which systematically reviewed CP interventions that worked and didn’t work. The results were published in the leading CP journal Developmental Medicine and Child Neurology. One of the key findings was that the most effective treatments for CP have been developed in the last 10 years. This means if a practitioner’s original training was conducted more than 10 years ago, their knowledge would most likely be out of date – unless they had taken steps to keep up-to-date.
“We know that clinical practice worldwide lags as much as 10–20 years behind research, which is a staggering number,” suggests Iona. “If you think about this in terms of a child, it’s their entire childhood. We see this as an ethical imperative to close the research-practice gap and ensure people get up-to-date services.”
The need for clear guidelines
Clinical practice guidelines are a known effective tool for closing the research-practice gap.
“Well written, clinical practice guidelines lay out a very clear set of recommendations. The authors of the guidelines go back to the literature and look at all the different studies that have been done in relation to treatment effectiveness and make recommendations based upon the best studies about what is most proven to work for most people.
“Clinical practice guidelines that are clear, concise, tell you what to do, who to do it with and how much to do, have a proven 67 per cent uptake. They can completely change practice,” says Iona. “If they are vague and ambiguous, usage drops to 36 per cent.”
“Clinicians looking for strategies to provide the most up-to-date services know that they can go to a clinical practice guideline for a definitive list of what to do. That’s what we’ve identified as the globally required to close the research-practice gap.”
In 2014, agreement was reached between the European Academy of Childhood Disabilities (EACD), the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) to collaborate and develop international guidelines for cerebral palsy with Dr Iona Novak invited to lead this initiative.
One size doesn’t fit all
“Cerebral palsy is a diverse condition. It can range from a mild disability to a very marked physical disability where you need care with every aspect of your life,” explains Iona. “For this reason, there can’t be just one set of guidelines. People respond to different treatments, and the choice of treatments can vary depending on their local context and available resources.”
“One of the principles we’ve embraced is to provide a global continuum of options. This allows for differences in support and treatment available in different countries and provides recommendations for different life-stages for those with CP.”
“In effect, the continuum will say, ‘Here’s what the evidence says is the best thing to do in this situation, but if you can’t do that, then here’s the next best thing to do’,” says Iona.
In this way, the clinical guidelines for CP will accommodate different local settings and support the best available care.
Case study in action
Adult stroke is another diagnosis where clinical guidelines have been used well and provide a proven best practice roadmap for Iona’s team. “The guidelines have really changed what kind of services people receive,” suggests Iona. “Practitioners have stopped recommending treatments that are out of date, their knowledge has changed as a result of reading the guidelines and they’ve been able to identify personal skill gaps.”
Clinical guidelines also provide an authoritative framework for negotiating government policy, and practitioners can lobby on behalf of families for additional support as recommended by the guidelines. “That’s the important feature of guidelines,” says Iona. “Because they’re global and have an authoritative source, they work for individuals but can be used to inform policy for an entire country.”
Best practice for best results
Developing credible, globally accepted policy guidelines is a well-researched process with a comprehensive methodology. The international clinical practice guidelines for CP are being developed using the respected and proven GRADE methodology, which considers the quality of the evidence along with the strength of the recommendation.
“The framework is set against what we consider the ‘gold standard’ of methodology for writing guidelines,” suggests Iona. “One of the key features is that you have a team of experts which includes people with CP, family members, advisors on local contexts, and medical experts.”
This process has been adopted by over 70 agencies worldwide including the World Health Organisation (WHO). “We figured we were in good company by using a process the WHO has endorsed,” laughs Iona.
Having an inclusive and collaborative approach and a global perspective has always been an imperative for Iona and the project steering committee.
“Our philosophy is if it’s good for people with CP in Australia, it’s good for people everywhere,” says Iona. “We have a goal of trying to reach the greatest number of people, yet be wise with funding and not duplicate effort. We’re stronger as a whole.”
“I have a belief that the best thing for people with CP is that they receive services that work best for everyone and are the best use of resources. A collaborative approach is also a way for high-income countries to give back to low- to middle-income countries.”
The first step in the process was to ask people with CP and practitioners what they thought the most important topics on which to focus. ‘Early detection’ and ‘early intervention’ were identified as the highest priorities and will be the first two guidelines published.
Other priorities include: pain management; feeding, hearing and vision issues; and goal-directed functional training. These guidelines are expected to be completed by 2017.
Many of the interventions recommended in the guidelines are inexpensive, do not require specialist equipment, and yet are highly effective. In fact many involve practising activities that a person really wants to do in a way that’s goal-directed, high intensity, repetitious, and motivating for that person.
“We’ve learnt a lot about brain neuroplasticity, and interestingly we know a lot of the interventions are hinged around these philosophies,” says Iona.
“We also know that the interventions that will have the most impact are around policies, inclusion and rehabilitation interventions that match what an individual with CP will value in their life, regardless of country context.
“What’s exciting is that many of these high-impact interventions can be done in low-income countries.”
The future is bright
The clinical guidelines for CP will consist of a scientific journal article with clear, bold statements and a summary of the research evidence about how the recommendations were reached.
Knowledge-translation tools are also a critical deliverable for the guidelines. These may consist of an infographic, one-page checklist or video. “By making the information accessible to individuals with CP or the families, they can then ask their health-care providers for this treatment or support,” explains Iona. “‘Self management’ – by putting the information back in the hands of the users and those who have the most to gain – leads to better health outcomes.”
“If we can get these guidelines right, and get to them to the right people at the right time and the training to people in low- to middle-income countries, the trajectory for people with disabilities could be quite different,” suggests Iona. “The future is bright.”
“This field has a momentum behind it that hasn’t been seen before. For me personally, it’s the most exciting time in CP research and intervention,” Iona says.
“It is one of those points in time where we’ll be able to say, ‘The field changed because of this’. It’s a collective achievement for the greater good.”