Written by Dr. Katie Birnie

I was thrilled to host CanFASD’s webinar on Pain as Experienced by People with FASD in November 2020 in my role as Assistant Scientific Director of Solutions for Kids in Pain (SKIP). SKIP is a knowledge mobilization network based at Dalhousie University, co-directed by Children’s Healthcare Canada, and funded by the Networks of Centres of Excellence (NCE). We are on a mission to improve children’s pain management by mobilizing Canada’s evidence-based solutions through coordination and collaboration.

Pain during childhood is incredibly common. Most children undergo at least 20-30 painful procedures, such as immunizations, before reaching adulthood (WHO, 2018), three-quarters of hospitalized children experience at least one painful procedure each day (Stevens et al., 2012), and 1 in 5 children will deal with chronic pain (King et al., 2011). The speakers and attendees at the CanFASD webinar really highlighted that pain, among other health issues, is a largely under-addressed challenge for people with FASD. Indeed, a recent international study of 197 caregivers reported that 37.6% of children and youth with FASD have joint pain, amongst many other prevalent acute and chronic health concerns (Reid et al., 2020).

Canada is a world leader in children’s pain research, but new knowledge and eff­ective treatments for pain aren’t consistently put into practice in hospitals, clinics, and communities. It is estimated to take up to 17 years for new research to make it into the hands of people who can use it every day. As a result, children living in Canada su­ffer from undertreated and preventable pain that leads to negative immediate and long-term consequences.

SKIP is addressing identified challenges faced by children, caregivers, health professionals, administrators, and policy-makers.

SKIP’s four Regional Hubs play a vital role in mobilizing research and evidence-based clinical practices, facilitating institutional change, increasing awareness, and fostering a sense of urgency about children’s pain. Our Hubs are based in Halifax (IWK Health Centre, Eastern Canada), Toronto (SickKids, Central Canada), Edmonton (Stollery Children’s Hospital, Western Canada), and Ottawa (Children’s Healthcare Canada). At each Hub, Hub Leads and Knowledge Brokers work together to advance children’s pain management in their own institutions and support other children’s healthcare institutions in their regions and across the country.

SKIP’s innovative hub-and-spoke model has quickly created an ever-expanding community of champions. SKIP has more than 100 partner organizations across the country and around the world. Through our four regional hubs, partners are being equipped with resources to improve pediatric pain management and leveraging their own collaborations to further raise awareness and mobilize knowledge.

SKIP also works with researchers to make sure that new knowledge is rapidly and effectively shared. Through our Jump in with SKIP program, we help researchers develop knowledge mobilization plans for their research, as well as offer practical guidance for engaging patients and families as partners on their research teams. We know there are many unanswered questions about pain in children with FASD. We have already partnered with several researchers in our network in their ongoing research to improve how pain is assessed and treated in children and youth with FASD.

As a Patients Included organization, SKIP is committed to meaningfully engage with children and youth who live with pain, parents, and other caregivers across all of our activities. We draw from a diverse network of 90 patient partners and SKIP’s Patient Caregiver Advisory Committee to inform SKIP’s decisions, communications, and priorities.

We’re building on our momentum and we’re not stopping now! Anyone can be a champion for kids in pain.

Written by Katie Birnie, PhD RPsych
Assistant Scientific Director, Solutions for Kids in Pain (SKIP)
Assistant Professor, University of Calgary