This is a critical question for the parents of any child with cerebral palsy or any other early neurologic injury. Why? “It is a research intervention, not covered by your policy” is a standard excuse used by many insurance companies to deny any new treatment. It is not just the insurance companies. Physicians and therapists are often also slow to integrate new findings into their clinical practice. There have been many studies that demonstrate that it may take 10 to 15 years from the time a treatment is accepted as valid, until it is standard of care in the clinic.
What can you do?
Thanks to an innovative group of researchers and clinicians in Australia, some help is now available. It is generally accepted that a positive randomized controlled trial (RCT) is the “Gold Standard“. Multiple RCTs are even better and inevitably lead to systemic reviews of work in a subject area. Our friends in Australia have provided the ultimate answer to some insurance denials by doing a systematic review of systematic reviews.
Iona Novak, Sarah McIntyre, Catherine Morgan, Lanie Campbell, Leigha Dark, Natalie Morton, Elise Stumbles, Salli-Ann Wilson, Shona Goldsmith. A systematic review of interventions for children with cerebral palsy: state of the evidence. Developmental Medicine & Child Neurology 2013, 55: 885–910
This review of reviews was published in a major cerebral palsy journal in 2013. Members of the public can access a free copy of this important paper at the link above. On the left-hand side of the page, search for volume 55 and select the title. There is no cost to download the paper.
In all, they reviewed 166 articles that were either systematic reviews or the next best available. Of the 64 discrete cerebral palsy interventions that they looked at, 24% were found to be effective… a.k.a. “Gold Standard”. They used defined grading systems to judge the quality of the research and there is an extensive table listing each paper that was reviewed, with the grade of evidence for each intervention and the reasoning of their expert panel for the grade given.
In all, 15 interventions were given an unequivocal Green Light of approval. This is the list of “Gold Standard” interventions from page 899 of the paper with my comments added.
(1) Botulinum toxin (BoNT), diazepam, and selective dorsal rhizotomy for reducing muscle spasticity
These first interventions are three common treatments for the reduction of significant muscle spasticity that are interfering with function or causing distortions in body growth. Botulinum toxin and diazepam are routinely prescribed by physicians, but in my experience, very few parents of children and/or teenagers with spastic Diplegia are offered information and/or an assessment for definitive treatment with a selective dorsal rhizotomy (SDR). Read this blog for more information and discuss it with your therapy team to see if it might be an option for your child.
(2) Casting for improving and maintaining ankle range of motion and (3) Hip surveillance for maintaining hip joint integrity
Interventions 2 and 3 are pretty self-explanatory.
But before you skip onto the next group of interventions, read my introduction to the book, The Checklist Manifesto, by Atul Gwande.
All children with increased muscle tone are at risk of bony distortions and joint dislocations. It is important to measure the joint range of motion every 3 to 6 months and with every reported growth spurt. Yet in over 35 years of working in the field, I have rarely seen it done. Not only should the range of motion be measured but it must be noted in the child’s chart and compared to previous measurements. Problems creep up until they are a major issue. Earlier diagnosis means, in most cases, less invasive, more effective treatment. Parents can change clinical practice by developing their own simple checklist of things that have to be done and then making sure that they are done.
(4) Constraint-induced movement therapy, bimanual training, context-focused therapy, goal-directed/functional training, occupational therapy following BoNT, and home programs for improving motor activity performance and/or self-care
These are the important ones. All but the last one are relatively new approaches that have been shown to improve the child’s ability. There is an argument to be made that these are no longer “research” interventions. I had the great good fortune to hear Iona Novak speak at a NINDS conference on cerebral palsy where she said that there were 22 positive RCTs on constraint induced movement therapy (CIMT). More research is unnecessary! These interventions should be part of clinical practice. Talk to your therapist and physicians to see if your child could be a candidate for any of these newer therapies. I doubt any insurance company could deny a claim, if you attach the Novak et al paper to your application. They will have to find another excuse to deny! The research has been done and these interventions work.
(5) Fitness training for improving fitness
Fitness is very difficult for a child who is functioning at Level V cerebral palsy, but many of them and all of the children, teens and adults that would score a Level I through IV, deserve a properly constructed fitness program. Nobody can attain fitness with once or twice a week therapy sessions. These have to be home and community-based, with supervision from your therapist. The downloadable water program on this site is a good place to start for many children.
Water may not be a good year round method, so be sure to ask your therapist for a home program and if necessary, ask to be referred to a therapist who has trained in adaptive exercise. You can also check out organizations like Blaze Sports and websites like Reaching for the Stars; A foundation of hope for Cerebral Palsy, for information and stories about exercise related activities and their benefit for children and teens.
Talk to your therapy team about how your child can start on the road to lifelong fitness.
(6) Bisphosphonates for improving bone density and (7) Pressure care for reducing the risk of pressure ulcers
Interventions 6 and 7 apply to a small subset of children with cerebral palsy who may have decreased bone density or pressure sores that occur secondary to limited independent movement.
(8) Anticonvulsants for managing seizures
In most cases, seizures can be well managed with anticonvulsants. Other interventions were not part of this systematic review, but if seizures are refractory to medication, there are several surgical options that could be considered. In recent years, most seizure management centers have started to advocate earlier treatment.
A very senior surgeon in the field has told me that less than 20% of children who could benefit from epilepsy surgery are ever offered an assessment. Surgery is not a magic cure-all for everyone, but for appropriately chosen candidates, it can be life changing.
Next week, I will start to work through the “Yellow Light – Measure” interventions that have shown promise with some positive results, but still lack the higher quality research papers or studies in a CP population. These interventions may be worth a try, but the outcomes need to be carefully measured for effectiveness in the individual child.
As ever, your questions and comments are welcome.
PLEASE…If your child was treated in a NICU and has a CP diagnosis, please take 5-10 minutes to complete this survey. Your input, positive or negative, will help improve the information given to new parents, now with a child in a NICU.