Post-doc's work in abilities-oriented approach to CP diagnosis and treatment draws international interest

August 5, 2016

Newly-minted NeuroDevNet post-doc Dr. Veronica Schiariti is traveling the globe from Stockholm to Xian, where researchers and clinicians are keen to consult her expertise in applying a functional, ability-oriented lens to assessment and treatment of children and youth with cerebral palsy (CP).

A pediatrician before she pursued further training in developmental neurosciences and child health at the University of British Columbia, Schiariti has developed clinical tools based on the World Health Organization’s Pediatric International Classification of Functioning, Disability and Health (ICF).

“Functional ability is the information we are missing when kids are diagnosed with a chronic condition,” says Schiariti. “Usually, we focus on limitations during assessment. We don’t have an indication about what they can do, and do do, every day, and what they enjoy. What we’re trying to do with the tool is change the approach and the vocabulary we use, to place abilities first.”

The ICF is essentially a list of categories that describe the most relevant or important areas of functioning for a specific population. The categories include activities and participation, as well as the social and environmental factors that engage and impact individuals.

With the help of a virtual community of collaborators, including clinicians and therapists at Sunny Hill, Schiariti refined five ICF “core sets” for children with CP. “Basically, these sets of ICF categories that apply to CP identify what should be measured and reported about an individual’s functioning and abilities,” Schiariti says. Each of the sets includes a set of categories a related to a segment of, or the full range of developmental stages from birth to age 18.

The work was honoured in 2015 with a Fred P. Sage Award conferred by the American Academy for Cerebral Palsy and Developmental Medicine.

“When I learned about ICF, I wanted to be part of that approach,” says Schiariti. “Speaking as a physician, I was frustrated before – my main focus was on diagnosis, highlighting impairments at the level of body structures and functions.” Working at Sunny Hill Health Centre during her PhD, she witnessed physical and occupational therapists taking a more functional approach with children with disabilities. “I was thinking, ‘why can’t I have a different perspective, and talk about different activities and options in the community’. I realized the importance of teamwork, but that is not the reality for many physicians.”

Her PhD with Dr. Louise Mâsse and her post-doc with Dr. Tim Oberlander as a Child and Family Research Institute-NeuroDevNet funded post-doctoral fellow focused on developing ICF-based projects, including an educational e-tool that helps teaching professionals, students and trainees learn how to apply the ICF core sets in day-to-day practice.

“Going forward, countries will be using this to change how they organize services for children with CP,” says Schiariti. “It’s a more comprehensive approach, focusing on factors that have previously been left out of consideration.” In a sense, she adds, ICF Core Sets are an advocacy tool. Children and youth with CP need better services, and access to more assistive technologies and adapted recreation, and the core sets help identify these needs.

Receptivity to the approach is truly global. In June, Schiariti was the only trainee to chair a mini-symposium at the International Conference on Cerebral Palsy and other Childhood-onset Disabilities at the Karolinska Institute in Sweden. Joining her on the podium were researchers from India, Pakistan and Poland who have championed validation and application of the CP core sets in their respective health care systems.

“Since June there’s been such a great response – almost every month I get an email how to implement this. Other groups want to validate the core sets in their countries,” says Schariti. “One of them is Moldova – they share the same interest as Russia, Nigeria, Argentina and Thailand.”

In the immediate offing is a trip to China, where Schiariti will work on validation with the Hong Kong Association for Rehabilitation, and the Chinese Association for Rehabilitation at centres in Shenyang and Xian.

Having finished her post doc and entered the job market, Schiariti continues work on making the CP core sets universally accessible. Translated into six languages for professional audiences, she is developing an animated version to help teach families about the ideas behind the core sets with the same team that produced the online tool accessible on the British Columbia Provincial Health Services Authority’s website. “Hopefully have everybody talking the same language,” she says.

Image: Dr. Veronica Schiariti receives a gift from children at the Step by Step Association for Help of Disabled Children in Zamosc, Poland