A five year old girl named Lauren, who suffers with cerebral palsy (CP), has been participating with her parents in an ongoing study that measures the functional effects of baclofen pump (an implant that helps loosen and tone muscles) for children with CP. Thanks to this pump, daily activities, which were once a challenge, have now become significantly easier for Lauren and her family to manage. The ongoing study is conducted by occupational therapy professor Ruth Benedict.
Lauren’s mother, Sandy Tierney, said:
“She can crawl upstairs now, allowing my 71-year-old mother…to be able to safely get Lauren upstairs and to bed. She sleeps better, naps less and is happier now that her body is more predictable and responds to her.”
The pump’s delivers a small amount of baclofen – a medication obtained from a mammalian neurotransmitter acid – into the spinal fluid giving Lauren the consistent muscle tone she needs, in order to go about her daily activities more comfortably and quickly, whereas injections and pills wore off or caused fatigue.
Lauren explains, as relayed by her mother:
“I don’t have to take the pill any more, and then I can have breakfast quicker. It helps me get up the stairs more easily, and I’m not so tight.”
Benedict is currently researching how the baclofen pump and subsequent treatments affect, health, well being, care, functioning and participation in home and community life for individuals suffering with cerebral palsy and their caregivers.
Cerebral palsy is one of the most prevalent congenital disorders of childhood.
According to Benedict, a lot of resources are being put into supporting children who receive these interventions by health care providers to know that the baclofen pump is effective is vital.
“Certainly there’s enough evidence out there right now to show that it is effective enough in terms of reducing (muscle) tone in these children, but there’s not enough evidence out there sowing what the implications are for care giving, and for the child’s function.
That’s what we’re hoping to show – that not only is there a physiological change in the child, but that the physiological change has implications for the child’s function and for the caregivers ability to care for the child.”
Benedict, and her team have so far gathered pre-intervention data on 20 client-caregiver pairs, 6 month data after surgery on over half of the pairs, as well as 2-year data on five pairs.
Each participant receives an initial questionnaire to fill in regarding their spasticity management, health, activities and other effects CP has on their daily life.
The researchers then meet with the participants one time before the surgical procedure and three times after. During these meetings, the researchers question participants about their concerns and goals regarding the treatment and record them as the participant perform normal activities while wearing equipment that monitors their energy exertion and movements.
“Thus far, the general perception is that there does seem to be a change, at least in some areas of care giving, but we’ll have to wait until we see and analyze all the data to know for sure.”
According to a report by the CDC in 2003, the disorder can cost over $900,000 during one person’s lifetime.
Benedict hopes to demonstrate that the side effects and cost of the pump are outweighed by the functional benefits, including caregiver energy and time.
In addition, Benedict’s hopes that the pump will allow Lauren and other children with CP to get a significantly better return from life-long treatment with occupational therapists and other health care professionals.
“I strongly believe that if we want access to these knowledgeable and highly skilled professionals, we need to help in the information learning and training process. Participating in research is for our benefit as well as others.”
Written by Grace Rattue