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Tackling a “silent problem” in kids with cerebral palsy: Q&A with Stacey Miller

December 08, 2017
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Among health care workers who care for children with cerebral palsy (CP), hip displacement is known as a “silent problem.” Often by the time kids start to experience pain and other symptoms, the damage to their hip joints is so advanced that their only options for treatment are invasive surgeries with poor outcomes.

An award-winning e-learning module created at BC Children’s Hospital, an agency of the Provincial Health Services Authority is helping caregivers around the province diagnose this problem at an earlier, more treatable stage. An initiative of The Child Health BC Hip Surveillance Program for Children with Cerebral Palsy at BC Children’s Hospital, the module received the 2017 Fred P. Sage Award from the American Academy of Cerebral Palsy and Developmental Medicine for the best multimedia submission presenting clinical, research or educational material.  

Stacey Miller, Coordinator of the Child Health BC Hip Surveillance Program, talks about how she and her colleagues work to give kids with CP the best chance possible to reach adulthood with mobile, pain-free hips.

Why was the Child Health BC Hip Surveillance Program created?

I’m a physiotherapist by background and before I coordinated the Hip Surveillance Program, I worked in the Orthopedics department at BC Children’s Hospital with Dr. Kishore Mulpuri who is a Pediatric Orthopedic Surgeon and Investigator at BC Children’s Hospital Research Institute.

Dr. Mulpuri was performing a lot of complex surgeries on kids with CP who had hip problems. Research has shown that timely screening with X-rays and clinical exams allow health care providers to offer children more and better treatment options. But, by the time we were seeing these children in the clinic, their hip problems had reached an advanced stage, and their only options were salvage surgeries that didn’t completely relieve pain or restore mobility.

We really wanted to provide better options for children with CP across the province, so we worked with Child Health BC to launch the Hip Surveillance Program for Children with Cerebral Palsy in late 2015. The goal of the program is to ensure kids receive screening to catch hip displacement before it permanently affects their quality of life. It’s the first program of its kind in Canada.

What is hip displacement? Why are kids with CP at particular risk?

The hip is a ball and socket joint. Hip displacement occurs when the top of the leg bone – the femoral head – moves out from under the socket, which is called the acetabulm. If not treated early, the joint can become completely dislocated and develop degenerative arthritis, causing chronic pain that has a serious effect on mobility and quality of life. Children may not be able to sit up in their wheelchairs or sleep through the night due to hip pain. 

Once the hip is dislocated, the only option is often surgery to remove the femoral head. This is a complex procedure that can offer some pain relief, but can’t restore the joint to its original function.

Cerebral palsy is an umbrella term for disabilities affecting body movement, muscle tone and coordination caused by brain injury before, during or shortly after birth.

We don’t know for certain why approximately one third of children with CP will experience hip displacement, but there are a few possible reasons. As babies begin to stand and walk, changes occur within their hips. For children with CP who walk late or don’t learn to walk, these changes may be disrupted or not happen at all. Children with CP also often have high muscle tone, which may contribute to hip displacement.

Kids with less motor function are at a much higher risk for hip displacement, and up to 90% of children with CP who use wheelchairs will experience hip displacement.

How does the Hip Surveillance Program work?

The hip displacement program consists of me and Dr. Mulpuri working with care providers across the province. The key to hip surveillance is ensuring children with CP receive regular screening to catch hip displacement before it becomes advanced enough to cause pain.

Anyone – including parents – can refer a child to our program, but mainly we collaborate with physiotherapists to identify children with CP and enroll them in hip surveillance.

Using information from local therapists, we provide guidelines for how often each child should receive clinical exams and hip X-rays, and set up alerts that let us inform local caregivers when screening is due.

After X-rays are performed, we evaluate them to determine if the child needs to see a pediatric orthopedic surgeon, if they need to continue in hip surveillance, or if they’ve reached a point where they can leave the program.

We do all this in collaboration with local health care providers, so children can receive care in their home communities as much as possible.

Tell us about the award-winning e-learning module.

The e-learning module was developed by me, Dr. Kishore Mulpuri and Dr. Maureen O’Donnell, the Executive Director of Child Health BC and a Developmental Pediatrician at Sunny Hill Health Centre. It’s an accessible way to educate physiotherapists and other health professionals about hip displacement and the hip surveillance program.

We rely on physiotherapists in local communities to make the program a success. With the e-learning module, these professionals can easily get information about the program anywhere in the province at any time. 

We were thrilled to receive the Fred P. Sage Award from the American Academy of Cerebral Palsy and Developmental Medicine for the e-learning module. We’ve also conducted research showing that physiotherapists’ basic knowledge of hip displacement has increased and this is largely attributed to the use of the e-learning module. 

The greatest success of the program is the impact it’s having on families across BC. We can’t prevent hip displacement completely, but through hip surveillance, we can give kids with CP the best possible chance to grow up free from preventable pain.