tephanie has been a patient of SickKids ever since she was one-hour-old—she was born with a rare condition known as

omphalocele, an abdominal defect that caused some of her internal organs to grow on the outside of her body. She also developed other conditions that interfere with food digestion and has relied on machines for nutrient absorption.

At fourteen-years-old, Stephanie has already undergone 15 major surgeries and more than 1,000 invasive procedures. Her parents and sisters have watched her fight bravely through

S

2016

PAIN CENTREIMPACT REPORT

MEET STEPHANIE WITH YOUR SUPPORT, THE PAIN CENTRE WILL END THE SUFFERING OF CHILDREN EXPERIENCING PAIN.

IMPACT REPORT | PAIN CENTRE

the severe pain that she experiences every day. The Chronic Pain Clinic at SickKids helps Stephanie and her family cope, providing therapeutic support and prescribing medications to lessen the pain. For Stephanie’s mom Denise, watching her daughter struggle has been heartbreaking, but seeing her tenacity has also been incredibly inspiring. “It is our hope to move forward and give Stephanie the opportunity to go to school, resume downhill skiing, play soccer again and live like a regular girl her age,” says Denise. “We are so grateful to everyone at SickKids for all they do to help children like my daughter. She is my hero.”

For children like Stephanie, chronic pain is an incredibly negative experience and dramatically impacts quality of life. She has often had to cope with unbearable pain so severe that she struggles to perform even the simplest of tasks, like getting dressed or brushing her teeth. Until recently, children suffering from the most debilitating chronic pain were left with few treatment options, and the most severely affected children were referred to the United States for care. As a result, in the fall of 2015 Stephanie, incapacitated by pain,

travelled to the US for a six-week chronic pain program at Boston’s Children’s Hospital.

The Pain Centre at SickKids is committed to ending the suffering for children with pain, and as such, want to ensure that children are able to access the care they need close to home. Members from the Centre joined the Ontario Ministry of Health Pediatric Chronic Pain Advisory Task Force. On March 6, 2016, through this committee, the Ministry of Health and Long-Term Care (MOHLTC) announced funding for the expansion of pain treatment services at SickKids, which includes a partnership between SickKids and Holland-Bloorview Kids

Rehabilitation Hospital. This partnership called “Get Up and Go” is the first of its kind in Canada, and gives SickKids patients better access to treatment for chronic pain, and will enable Holland-Bloorview to offer an intensive rehabilitation clinic for patients. As a result, the SickKids Chronic Pain Program—which provides comprehensive assessment and treatment for chronic pain but does not have the infrastructure for specialized rehabilitative programs—can offer this specialized rehabilitated care at Holland-Bloorview.

The SickKids and Holland-Bloorview partnership has cut the waiting times at the SickKids Chronic Pain Clinic from seven to less than one month, and ensures that children like Stephanie who suffer from chronic pain no longer have to leave the country to get the care that they need.

“Children suffering from chronic pain will now be able to get the right care, in the right place, at the right time,” says Dr. Fiona Campbell, Staff Anesthesiologist at SickKids and Co-Chair of the Paediatric Chronic Pain Advisory Network for the MOHLTC. “It will alleviate suffering and allow kids to get back to living normal lives.”

Stephanie holding a box of her Bravery Beads. Each bead represents a medical procedure that she has endured.

“We are so grateful to everyone at SickKids for all they do to help children like my daughter. She is my hero.”

THE SICKKIDS AND HOLLAND-

BLOORVIEW PARTNERSHIP

WILL HELP APPROXIMATELY

1,325 PATIENTS PER

YEAR WITH A HOLISTIC

COMPREHENSIVE FOUR-WEEK PROGRAM.

THE RISK OF SUICIDE IS

2XOF AS HIGH FOR PEOPLE LIVING

Did you know that veterinarians receive five times as much training about pain as doctors? This means that while nearly every SickKids patient experiences pain during their stay, whether it’s from a needle poke, surgery or a chronic disease, many of these kids will not receive any pain management.

Children should not have to experience unnecessary pain, and this is where Pain in Child Health (PICH) comes in. PICH is a community of researchers from around the world who are focused on cultivating talent to strengthen paediatric pain training and are building a new generation of pain researchers. Led by Dr. Bonnie Stevens Co-Director of the Pain Centre, PICH uses novel training activities, making sure that doctors, nurses and other health care providers are equipped to treat their patients’ pain. Importantly, PICH builds pain research capacity that will lead to more transformational discoveries so that fewer children will experience unnecessary pain. In November, PICH is launching PICH2GO, co-lead by Drs. Jennifer Stinson and Rebecca Pillai Riddell of the Pain Centre, that will engage trainees with children and families, health care providers, and others through a series of educational and networking events. To learn more about PICH visit: http://paininchildhealth.dal.ca/pichplus/

FUNDING VITAL PAIN RESEARCH

ONLY

3%OF CHILDREN

WITH CHRONIC PAIN GET

ACCESS TO THE TREATMENT THEY

NEED

77%OF CHILDREN EXPERIENCE PAIN DURING

DIAGNOSIS AND TREATMENT

25% OF ALL

CHILDREN EXPERIENCE

CHRONIC PAIN

BENCH TO BEDSIDE

As part of a collaborative national initiative, Pain Centre members, including co-lead investigators Drs. Bonnie Stevens and Jennifer Stinson, as well as Drs. Michael Salter and Steven Prescott of the Research Institute, were awarded a CIHR Chronic Disease Strategic Patient Orientation Research (SPOR) grant for their work on the Chronic Pain Network. The project was one of five successful projects for $25 million over five years that focuses on chronic pain and engages world-leading research-ers from across Canada. This remarkable award is a testament to the importance of advancing chronic pain research, and finding new ways to translate findings more quickly from the bench to the bedside.

The Chronic Pain Network is committed to reducing pain and improving function, participation and quality of life for all individuals who suffer with chronic pain while reducing the economic burden of pain over the lifespan. The Chronic Pain Network is striving to:

� Enhance research collaboration through the creation of a network of 11 academic pain centres and more than 30 pain scientists across the country

� Improve the training of highly qualified professionals, which will increase our capacity for chronic pain treatment and research

� Create a structure that will allow us to bring this information to policy makers to help in the development of systematic solutions

As a part of the Chronic Pain Network, Dr. Stinson's team is focused on patient engagement, through the evaluation of the iCanCope with Pain application and website. iCanCope helps youth and young adults better self-manage their pain, by providing pain education and self-management content that is tailored for 15-25 year olds. To date, the team has gathered further evidence that digital health technologies can promote the self-management of pain and other symptoms in youth with chronic health conditions.

Looking forward, the team will be examining the Program’s feasibility for implementation and effectiveness for adolescents and young adults with chronic pain using a randomized controlled trial method. They will then strive to make the iCanCope intervention freely available across Canada. To reach its target population—adolescents and young adults with persistent pain waiting for care and those already receiving care—the app will be available through online app stores and the website will be hosted through the SickKids AboutKidsHealth site.

ADVANCING PAIN EDUCATION

PAIN IN CHILD HEALTH

THE RISK OF SUICIDE IS TWICE AS HIGH FOR PEOPLE LIVING WITH CHRONIC PAIN

COMPARED TO THOSE LIVING WTHOUT

2\3 of children with chronic pain

continue to experience pain as adults, costing the health care

system billions of dollars.

THANK YOU.

SickKids Foundation is accredited under the Imagine Canada Standards Program, demonstrating excellence in Board governance, financial accountability and transparency, fundraising practices, staff management, and volunteer involvement.

SickKids Foundation525 University Avenue, 14th FloorToronto, Ontario M5G 2L3 sickkidsfoundation.com

PHONE 416.813.6166FAX 416.813.5024

Every day, SickKids is improving the lives of children and our success depends on the generosity of donors like you. The Pain Centre continues to push the boundaries so that more children can live a life free from pain. Your commitment to helping find new ways to reduce and eliminate pain in children ensures that we can continue to offer the best possible health outcomes for children so that they can lead happier and healthier lives. Thank you for your remarkable generosity.