Bloorview 2008/09 Annual Report
BLOORVIEW K ID S REHA B 08 – 09 H OSPITAL & RESEARCH REPORT
small wonder
A world of possibility For helping us make our vision a reality, we thank Bloorview Kids Foundation, Bloorview Children’s Hospital Foundation, the Ontario Ministry of Health and LongTerm Care, the Toronto Central Local Health Integration Network, our academic partner – the University of Toronto – and the many community agencies who work with us. We couldn’t do it without you!
Bloorview 2008/09 Annual Report
Dear friends
Wonder.
technologies that improve the lives of children with disabilities.
It’s a spirit that permeates Bloorview Kids Rehab.
Wonder motivates us to question, study and change a world in which environments and attitudes too often exclude children with disabilities.
It starts with a deep reverence and respect for every child, a fascination with growth and development, and the belief that all children deserve to participate fully in life. It’s the curiosity and imagination that bring Bloorview clinicians and scientists together to develop breakthrough treatments and
It opens our eyes to multiple ways of seeing, and explains the unique integration of care, research and education at Bloorview.
We’re pleased to bring you the first joint report of Bloorview Kids Rehab and the Bloorview Research Institute. We call it small wonder because our focus is children and youth. And while our size is modest, our work has an international impact in the field of childhood disability that’s astonishing. On many levels, Bloorview is truly a small wonder.
Wondrous are the deeds of our volunteers and donors.
Sheila Jarvis President and CEO
Peter Fullerton Chair, Board of Trustees
Colin Macarthur Director, Bloorview Research Institute
Bloorview big picture Vision: A world of possibility for kids with disability
BLOORVIEW RESEARCH 2008-09
STRATEGIC PRIORITIES
•
Establish centres of leadership in child development and participation
• • Innovate in teaching and learning • Create a knowledge hub for Enhance the impact of research
childhood disability
• Lead system change and integration and improve access to services
Scientists:
19
Trainees:
92
Total external funding:
$4.8 million
Peer-reviewed funded projects:
56
Peer-reviewed publications:
37
Ratio of external to internal funding:
2:1
Peer-reviewed publications per full-time scientist:
3.4
Peer-reviewed grants per full-time scientist:
5.9
Graduate students per full-time scientist:
5
RESEARCH FUNDING BY SOURCE 2008-09 13% International
BLOORVIEW KIDS REHAB 2008-09 Outpatient visits:
53,600
Inpatient visits:
644
Average length of stay:
32 days
Total clients:
7,000
Employees:
875
Student doctors, nurses, therapists, teachers, engineers, psychologists and social workers:
300
Volunteer hours:
44,000
13% Other national funding agencies 4% Other
7% Industry
10% Provincial funding agencies
9% Federal/Provincial government
5% Royalties
7% Donations 26% CIHR/NSERC/SSHRC
6% Research endowments
Bloorview 2008/09 Annual Report
In this lab, science is a calling
In February, a study that could unlock the world of choice to children who can’t speak or move through optical brain imaging – a kind of ‘mindreading’ – was published in the Journal of Neural Engineering and reported around the world. It’s no surprise that the study emanated from Tom Chau’s rehab engineering lab at Bloorview. The biomedical engineer has a fundamental belief that guides the training program he’s built for top graduate students with scholarships from around the world. “Each child is irreplaceable, unique and precious,” he says. Given this premise, Tom and his students are developing body-machine interfaces to give children who can’t speak or move a way to communicate
their intentions through brain waves, breathing patterns and heart rate. The goal is to translate a child’s physiological signals into control of a voice-output device or computer.
‘Each child is irreplaceable, unique and precious.’ “My students approach their work as a vocation, not just a degree or job,” Tom says. “Vocation comes from the Latin word ‘vocare’ – to call. Applying scientific skills to create possibilities for children with disabilities is a personal calling to each. Many volunteer in other areas of the hospital. They want to be a living part of the journey that families take.”
Shining a light, unlocking a mind
In February’s Journal of Neural Engineering, University of Toronto PhD student Sheena Luu decodes a person’s preference for one of two objects with 80 per cent accuracy by measuring the intensity of near-infrared light absorbed in brain tissue. Wearing a headband fitted with fibreoptics that emit light into the pre-frontal cortex of the brain, adults were shown two drinks on a computer monitor, one after the other, and asked to make a decision about which they liked more. “When your brain is active, the oxygen in your blood increases and depending on the concentration, it absorbs more or less light,” Sheena says. She was able to teach a computer to recognize the unique pattern of brain activity associated with preference for each subject.
A child’s best friend
A brain tumour the size of an apple turned Kim Burke’s active, exuberant toddler Samantha into a child she didn’t recognize. “First she got lethargic, then she stopped walking and standing up and when she crawled, she fell on her face,” Kim recalls. “By the time we got the diagnosis, she was barely eating and limp as a rag doll, lifeless.” Samantha had surgery to remove the tumour – which was benign – and spent two-and-a-half months at SickKids. When she came to Bloorview for inpatient rehab “all she could do
was lift her shoulders off the pillow,” Kim says. She was receiving nutrition through a nasal feeding tube and the trauma of her illness and hospitalization had left her anxious and withdrawn.
For the next couple of months Samantha participated in intensive physical, occupational and speech therapy and never missed a weekly pet session.
It wasn’t until Samantha participated in a pet visiting program at Bloorview that Kim says she saw the daughter she knew return.
The pet visiting program is run by therapeutic recreation and volunteer resources staff and made possible by 27 volunteers and their dogs and cats.
“As soon as she saw the dogs, I saw the sparkle in her eye and the excitement and the smiles and she started to say ‘doggie’ again, which she’d lost at SickKids. When I put her on the ground, she started bouncing around like crazy and touching the dogs.
Samantha’s now eating on her own, walking with support, cruising on furniture, “and laughing and chatting like there’s no tomorrow,” Kim says. “When we first came to Bloorview, I never could have imagined her doing so well.”
“I can’t even explain in words how important it was,” Kim says. “It gave me a sense of hope, of seeing a light at the end of the tunnel: my daughter was coming back.”
Wondrous works
Over 1,000 Bloorview volunteers contributed 44,000 hours in 2008-09. When surveyed, 100 per cent said they would recommend the experience to friends and family.
Bloorview 2008/09 Annual Report
A machinist and his magic wand
He also suggested ball joints in the attachable feet to mimic the rotation you get in your ankle.
In January, Sarah Doherty climbed Africa’s highest peak on high-tech crutches she developed with Bloorview prototypist Bill Johnson. The 49-year-old lost her right leg at age 13 when she was hit by a drunk driver. But she never lost her love of the outdoors and adventure. Bill machined the crutches with shock absorbers to make her dream possible. “They slowly uncoil, like your joints do, giving a nice cushion in each step, instead of jarring your joints,” Sarah says.
Bill had used a similar joint in a hockey stick he designed for a girl with an arm amputation who wanted to play Canada’s game. It gave her the multidirectional movement of a wrist.
‘When they bring their child to Bloorview, they’re going to get hope and compassion.’ With Bill’s machine-shop wizardry, kids and adults with disabilities are scaling their own mountains. Children with arm prostheses play baseball, climb rocks and paddle canoes. One of Bill’s clients, Adrian Anantawan, is a classical violin soloist. He was born without a right hand. Bill designed a metal piece that attaches to
his bow and slides onto a small paddle he wears on a cuff on his right forearm. The metal piece acts as a “hand,” allowing Adrian to hold the bow and position it on the paddle. Bill’s work was inspired by another Bloorview client, his sister Anne. “When my sister was born, the specialists told my parents ‘she’ll never amount to anything. Put her in an institution.’” With the help of braces, a guide dog and seizure medication, Anne graduated from university. “That’s why I want parents to know that when they bring their child to Bloorview, they’re going to get hope and compassion. What I usually say when I first talk to a client is: “If I had a magic wand, and could make anything, what would you like to be able to do?”
The power of one
Who: Vito Bigioni, father to Emily, 13,
who has disabilities, uses a wheelchair and doesn’t speak. Emily is an artist who loves to paint and work with clay. What: Vito’s dream to save Bloorview’s
March Break Creative Arts Respite Camp for children with complex needs. The program provides a creative, social and safe environment for Emily while giving her parents a break from roundthe-clock care. In 2007 Vito learned the camp was being cancelled due to a change in government funding allocations. Vito, who owns a construction company, set out to raise money to ensure its survival. Why: “I’ve seen changes to other programs, but I couldn’t swallow this one. I can’t get that arts programming in a respite service anywhere. Raising money gives us a sense of giving back for what we’ve received from Bloorview. It’s a way of thanking the staff for
running a great program. For Emily’s brother Max, it’s an important life lesson. He sees that we’re helping and that we don’t have to just sit on the sidelines and take whatever is given to us. We can be out in the community and make a difference.” How: Vito met with Bloorview Kids
Foundation and developed a plan to raise enough money to keep the program running for five years – $250,000. Then he went to family and business associates to ask them to support him. Within three months he’d reached his five-year goal and set a new target of raising $1 million for the Emily Bigioni Endowment Fund, to keep the program going forever. The foundation provided a personal fundraising page on its web site; support when Vito presented to potential donors; and organized special events, including a gala reception. Vito has raised over $750,000 to date.
To find out more, visit www.bigioni.giftsofpossibility.ca
Bloorview 2008/09 Annual Report
Bloorview 2008/09 Annual Report
Bridging research and clinical care ‘There h as to be a con stan t back an d for th – a mar riag e ’ What are the advantages of being a clinician scientist?
Dr. Evdokia Anagnostou is a child neurologist and scientist recruited to Bloorview from the Mount Sinai School of Medicine in New York to develop a clinical research program in autism. Evdokia’s clinician scientist position is a new one that reflects the hospital’s goal to better bridge the worlds of research and care.
Dr. Anagnostou: The risk, if you’re just a
What brought you to Bloorview?
One part of your research focuses on testing alternative compounds like fish oil. Why is this important?
Dr. Anagnostou: There were a number
Dr. Anagnostou: There are limited
of pluses to building a clinical research lab here: access to children with autism; our link with SickKids, which allows me to collaborate with geneticists and basic scientists; and a well-organized research institute with huge potential to grow. I like the philosophy that disability is where you start and not where you end. It doesn’t become who you are, but is just one aspect of you. That attitude is very promising for children with autism.
medications available to children with autism. As a result, parents and physicians have started using alternative compounds without any evidence that they are safe or effective. We need to test the compounds scientifically. And because we’ll be treating many people with autism over their lifetime, if there are natural substances that have better safety profiles than the current drugs we’re using, we need to know that.
researcher, is that you get caught up in asking questions you think you can answer, instead of what’s relevant and will have impact for families living with autism. Seeing children keeps me grounded in what needs to be asked. Research keeps us up to date on the newest treatments. There has to be a constant back and forth – a marriage – between the clinical and the research in order to provide excellent care. How do you bring a sense of wonder to your work? Dr. Anagnostou: My patients bring me a
sense of wonder. What’s special about children with autism is that their brain is wired differently, so they have an alternative view of the world that challenges our perceptions. They have the ability to see things from a completely different view.
Artists visit inpatients at bedside
When children are hospitalized, they’re cut off from regular activities, friends and the outside world, and lose a sense of control.
The program is called ARTery because the art trolley run through the core of the hospital, restoring children’s metaphorical hearts.
Not ideal conditions for healing.
“It can be transformative,” says Sarah Dobbs, director of Bloorview’s Centre for the Arts. “It’s an opportunity for the children to create and contribute again, and that leads to a sense of wellbeing and self-esteem.”
So Bloorview brings art and gardening to the bedside to help inpatients reconnect with their creativity and the natural world. Artists and gardeners visit children one-on-one with trolleys packed with paints, brushes and clay, baskets of soil and seeds for planting, cut-flowers, water and watering cans.
“I love it,” says Crystal Brown, 16, who’s spent half a year in hospital recovering from surgery to remove a brain tumour. “On my first day at Bloorview I got to
make a wonderful bamboo flute in ARTery.” Crystal has spent three months in inpatient rehab receiving physical, speech and occupational therapies, going to school, and choosing a new hot pink wheelchair. “ARTery is relaxing and it takes away stress,” she says – key ingredients in a hospitalized child’s recovery.
Bloorview training draws pediatricians worldwide University of Toronto’s training program in developmental pediatrics is based at Bloorview and prepares pediatricians to assess and treat children with developmental disabilities as part of a multi-disciplinary rehab team. The program draws clinical fellows from around the world. We asked a few why they chose Bloorview.
“Bloorview is a big hospital with a denselypopulated catchment area, so my chances of seeing a large volume of patients, which is very important during a limited, two-year fellowship, were better. The academic and research parts of the program are excellent.” Dr. Michal Begin Jerusalem, Israel
“As a pediatrician, I’m trained to know concrete pathology. But kids with disabilities are so intricate. No two are the same. You can’t learn about them in a textbook or in medical school. You need hands-on interaction in a rehab hospital like Bloorview.” Dr. Sharon Smile Kingston, Jamaica
“Canada has an excellent reputation internationally for training doctors in many specialties. The developmental pediatrics program at Bloorview is one of the few programs that offer training in neurodevelopment anywhere in the world. I was unable to find such a training program in Ireland or Britain, where I had previously trained.” Dr. Siobhan Gallagher Limerick, Ireland
“Bloorview’s developmental pediatrics program has many renowned experts in developmental and behavioural fields, especially in autism and cerebral palsy at Bloorview, and neurology at SickKids. The program gave me rich experiences in clinical, research and academic activities. I learned a lot in the area of autism and how to assess children with unique tools. That’s been very useful when I returned to my country.” Dr. Kay Lekagul Bangkok, Thailand
Building the case for Botox, step by step
Like any five-year-old, Chantel Azevedo likes to be on the move. But until recently, getting around was difficult. That’s because cerebral palsy made her right leg muscles stiff, pulling her heel off the floor. “You can imagine how hard it would be to walk everywhere on tip-toe,” her mom Vicky says. “It knocked her balance off and made her fall.” That changed dramatically when Chantel had Botox injections to treat the stiffness – known as spasticity – at Bloorview. “She was able to put her foot flat on the ground, which meant she could walk and run better, play jumprope better, alternate her legs climbing stairs, and do all the things five-yearolds like to do.” Bloorview was one of the first hospitals in North America to use Botox to treat spasticity in children, conducted one of
the first randomized trials to show its efficacy, and uses the treatment in over 400 children each year. The drug temporarily blocks abnormal brain signals that cause muscles to contract. Dr. Darcy Fehlings, physician director of Bloorview’s child development program and head of the University of Toronto Division of Developmental Pediatrics, has just embarked on the first study to look at the long-term impact of Botox on motor function and participation. “We want to see if the short-term gains we see in function translate into a richer, everyday quality of life over the long-term,” says Darcy. “Are kids able to take more steps, participate in more recreation activities, and move around in the community more easily?” About 180 children, aged two to five, will be followed over three years.
Dr. Darcy Fehlings is part of an international group of specialists who developed a consensus statement on the medical uses of botulinum toxin based on an extensive review of the scientific literature. Findings of the review on treating upper-limb spasticity in children – which Darcy led – will be published in the European Journal of Neurology.
Access study looks to kids as experts
school, but if it's located at the back of the building and everyone else goes in at the front, it implies second-class treatment. Little is known about how children with disabilities navigate and evaluate their built environments. The solution: A three-year study led by The challenge: Participating in everyday
activities helps children develop skills, interests and friendships that promote physical health and emotional wellbeing. But children who use wheelchairs or walkers face barriers. That’s because most houses, communities and schools aren’t built with their needs in mind. Stairs, narrow doorways and standard furniture separate these kids from their peers. Sometimes buildings are technically accessible, but convey the message that children with disabilities don’t belong. For example, a ramp may be added to a
Bloorview scientist Patricia McKeever asks children to rate the accessibility and inclusiveness of their homes, communities and schools. How it works: In the first phase –
underway now – 12 children aged 10-14 from urban, suburban, rural and northern Ontario communities are interviewed about each environment. Kids draw maps on a tablet PC, take photos and talk about how they get around and how included they feel in each setting. Outside, they carry a blackberry that generates a real-time map of their whereabouts. Later, using
Google Earth, they discuss the places they went, barriers faced and what could be improved. Researchers assess five locations chosen by the child, including a nearby park, movie theatre, restaurant, doctor’s office and store. Based on case study findings, a survey of about 1,000 Ontario children aged six to 14 will be conducted in the fall. The impact: The goal is to develop
scientific evidence that will influence building codes and place-based interventions so that kids with disabilities have the same opportunities as their peers to participate in childhood activities.
Making the system work
Making it easier for children and families to obtain services by partnering with other players in the health system is a strategic priority for Bloorview. 2008 was a banner year for partnerships and collaboration that improved the speed at which children and youth received inpatient rehabilitation care and services for children diagnosed with autism.
Speeding transition to inpatient rehab Problem: Children with brain injuries
who were ready to be transferred to Bloorview for inpatient rehab spent on average nine days more than needed in SickKids’ trauma unit in 2006. A cumbersome Bloorview referral form was identified as the challenge, causing 273 medically-unnecessary days.
people three days to complete can now be filled out by one person in an hour. An up-to-date clinical overview is sent 48 hours before transfer. Staff agreed on common definitions of “medicallystable and rehab-ready.” Visual icons that describe steps in the referral process were developed and are posted beside the child’s name on an information board at SickKids. This helps staff identify what stage the child is at and minimizes duplication of tasks.
Partnership: Managers and frontline
staff at Bloorview and SickKids worked together to simplify and improve the referral process, as part of the Ontario Health Ministry’s Flo Collaborative. Solution: A new, concise two-page
referral form. What originally took four
Impact: Unnecessary days were cut
from nine to three, and incomplete referral forms from 50 per cent to less than five per cent. Bloorview is using the process-improvement knowledge it gained to improve referral practices on other units.
Linking families to autism services Problem: Over 100 children are
diagnosed with autism at Bloorview each year. For ongoing treatment, we refer families to agencies like the Geneva Centre for Autism. In 2006-07, only 63 per cent of the families diagnosed successfully made the transition. Community services for autism are complicated and can be difficult for families to access. Partnership: Bloorview and the
Geneva Centre partnered to ensure families make the transition from one organization to the other and get the services their children need.
Solution: A new social work position
was created to ensure families are successfully bridged from Bloorview to the Geneva Centre. The social worker meets with parents to discuss their goals, initiates the referral, explains services available at Geneva and elsewhere in the community, and provides emotional support. Impact: In 2007-08, 86 per cent of
children diagnosed with autism at Bloorview were bridged to the Geneva Centre. In 2008-09 it was 87 per cent. The Impact on Family Scale – which measures the impact of a child’s disability on the family – shows an overall decrease in family stress following transfer to the Geneva Centre.
The wonder year
BLOORVIEW BUILDS RESEARCH TALENT
BLOORVIEW SHEDS LIGHT ON HOUSING
FUNDING TARGETS SOCIAL INCLUSION u
Bloorview recruited five top clinical and social scientists to build our leadership in participation and child development programs. Two positions combine clinical and research work and reflect our plan to more closely integrate research, clinical and teaching efforts.
Bloorview submitted a report to the City of Toronto – which is developing a 10-year affordable housing plan – outlining the challenges families of children with disabilities face in finding accessible and affordable housing. We were delighted that the City subsequently identified families with children with disabilities as a priority group for new affordable housing.
Almost $4 million in funding for childhood disability research was announced by the federal government at Bloorview. Five teams of Canadian scientists will conduct research to improve the social inclusion and participation of children with severe disabilities. The funding is a partnership between the Canadian Institutes of Health Research and Bloorview Children’s Hospital Foundation.
t EARLY RESEARCHER AWARDS
SHEILA JARVIS LEADS MISSION TO CHINA
Ontario Research and Innovation Minister John Wilkinson announced funding of 22 Toronto research projects worth over $3 million through the Early Researcher Awards program at Bloorview. Tom Chau, who leads a team of scientists developing assistive technologies at Bloorview, was one of the recipients. “We don’t have to look any further than Bloorview to find extraordinary examples of inspirational and pioneering innovators,” Minister Wilkinson said.
Bloorview President and CEO Sheila Jarvis represented the Council of Academic Hospitals of Ontario on a visit to China to pursue health research partnerships between China and Ontario. Universities in Hong Kong, Shanghai and Beijing are keen to explore joint grant applications, research projects and publications, and exchange of post-doctoral students. Bloorview will host two students this summer. Next steps include a scientific symposium in Ontario.
NEW TAX-FREE SAVINGS PLAN
CANADA’S CHEFS SHARE SECRETS
Canada’s new Registered Disability Savings Plan was launched by Minister of Finance Jim Flaherty and Minister of Human Resources and Skills Development Diane Finley at Bloorview. The plan is a tax-free option to help parents save for the long-term needs of children with severe disabilities.
A gala dinner to launch the third annual Recipes for Possibility Calendar drew over 200 business and community leaders and raised more than $425,000 for Bloorview. The calendar features recipes from 13 of Canada’s top chefs, and was sponsored by BMO Financial Group.
No wonder we’re the best! W hy do y ou work at Bl oor v ie w?
“I have a sister with special needs who has greatly inspired me to work in the field of disability. I did my masters placement at Bloorview and after meeting the fabulous staff and social work colleagues, I was hooked. It was my dream to work here and here I am!” Stephanie Willison Social Worker Complex Continuing Care, Family Support Services
“Because of the children and families. We have to find ways to understand the causes of autism and we have to find better ways to provide integrated and comprehensive care that relieves the burden and stressors for caregivers and kids. It's listening to what parents are struggling with everyday that keeps us going in trying to make changes.” Dr. Wendy Roberts Developmental Pediatrician Child Development Program
“I love working at the Bloorview School because every day is a great adventure.” Paul Alcamo Teacher Integrated Kindergarten Program
“I like my job. I have fun meeting different people from all cultures. I like to be friendly with everyone.” Maggie Rodrigues Dietary Aid, Cafeteria
“I want to make a difference in children’s lives. The children at Bloorview inspire me in all realms of my life. Bloorview has a friendly atmosphere that always makes me feel welcome.” Jorge Santos Registered Nurse Complex Continuing Care
“It’s nice to have a workplace that is so aligned with my personal values. I feel great about the work I do everyday, even though I’m not on the front lines.” Kathy Foisey Executive Assistant Human Resources
In case you wondered
Peer-Reviewed Publications Alves N, Chau T. Testing the Stationarity of Mechanomyographic Signals from Extrinsic Hand Muscles During Isometric Contractions. Journal of Electromyography and Kinesiology 2008;18(3):509-515. Alves N, Chau T. Vision-based Segmentation of Continuous Mechanomyographic Grasping Sequences for Training Multifunction Prostheses. IEEE Transactions on Biomedical Engineering 2008;55(2):765-773. Andrysek J, Redekop S, Matsui N, Kooy J, Hubbard S. A method to measure the accuracy of loads in knee-ankle-foot orthoses using conventional gait analysis, applied to persons with poliomyelitis. Arch Phys Med Rehabil 2008;89(7):1372-79. Biddiss E, Chau T. Dielectric elastomers as actuators for upper limb prosthetics: challenges and opportunities. Medical Engineering & Physics 2008;30(4):403-418.
Biddiss E, Chau T. Multivariate modeling for prediction of prosthesis use or rejection. Disability and Rehabilitation. Assistive Technology 2008;3(4):181-192. Blain S, Chau T, Mihailidis A. Body language: the untapped potential of the autonomic nervous system. Open Rehabilitation 2008;1:27-37. Blain S, Mihailidis A, Chau T. Assessing the potential of electrodermal activity as an alternative access pathway. Medical Engineering & Physics 2008;30(4):509-515. Brian JA, Bryson SE, Garon N, Roberts W, Smith I, Szatmari P, Zwaigenbaum L. Clinical assessment of autism in high-risk 18 month olds. Autism 2008;12(5):433-456. Brooks D, Gibson BE, Dematteo D. Perspectives of Personal Support Workers and VentilatorUsers on Training Needs. Patient Education and Counseling 2008;71:244-250.
Carnevale FA, Macdonald ME, Bluebond-Langner M, McKeever P. Using Participant Observation in Pediatric Health Care Settings: Ethical Challenges and Solutions. Journal of Child Health Care 2008;12(1):18-32. DeMatteo CA, Cousins MA, Lin CY, Law MC, Colantonio AC, Macarthur C. Post- injury living environments for children and youth with acquired brain injury. Arch Phys Med Rehabil 2008;89:1803-10. Di Rezze B, Wright FV, Curran CJ, Campbell K, Macarthur C. Individualized outcome measures for evaluating life skill groups for children with disabilities. Can J Occup Ther 2008;5:282-287. Epstein I, Stevens S, McKeever P, Baruchel S. Using a puppet to elicit talk with children. Nursing Inquiry 2008;15(1):49-56. Fernandes D, Chau T. Fractal dimension of pacing and grip force in handwriting stroke production. Journal of Biomechanics 2008;41:40-46.
Gibbins S, Stevens S, McGrath P, Yamada J, Beyene J, Breau L, Camfield C, Finley A, Franck L, Johnston C, Howlett A, McKeever P, O’Brien K, Ohlsson A. Comparison of pain responses in infants of different gestational ages. Neonatology 2008;93:10-18. Guerriere D, Wong A, Croxford R, Leong V, McKeever P, Coyte P. Costs and determinants of privately-financed home-based health care in Ontario, Canada. Health and Social Care in the Community 2008;16(2):126-136. Guiqing C, Edelmann L, Goldsmith JE, Cohen N, Nakamine A, Reichert JG, Hoffman EJ, Zurawiechi DAM, Silverman JM, Hollander E, Soorya L, Anagnostou E, Betancur C, Buxbaum JD. Multiplex ligation-dependent probe amplification for genetic screening in autism spectrum disorders: efficient identification of known microduplications and identification of a novel microduplication in ASMT. Medical Genomics 2008;16:1-50.
King G, Bartlett D, Currie M, Gilpin M, Baxter D, Willoughby C, Tucker MA, Strachan D. Measuring the expertise of pediatric rehabilitation therapists. International Journal of Disability, Development and Education 2008;55(1):5-26. King G, Batorowicz B, Shepherd TA. Expertise in researchinformed clinical decision making: Working effectively with families of children with little or no functional speech. EvidenceBased Communication Assessment and Intervention 2008;2(2):106-116. King G, Currie M, Smith L, Servais M, McDougall J. A framework of operating models for interdisciplinary research programs in clinical service organizations. Evaluation and Program Planning 2008;31:160-173. Kolski HK, Hawkins C, Zatz M, de Flavia P, Biggar WD, Alman B, Vajsar J. Diagnosis of limb-girdle muscular dystrophy 2A by immunohistochemical techniques. Neuropathology
2008;28(3):264-268. Lee J, Steele C, Chau T. Time and Time-Frequency Characterization of Dual-Axis Swallowing Accelerometry Signals. Physiological Measurement 2008;29(9):1105-1120. Missiuna C, Moll S, King G, Stewart D, Macdonald K. Life experiences of young adults who have coordination difficulties. Canadian Journal of Occupational Therapy 2008;75(3):157-166. Murphy A, Milo-Manson G, Best A, Campbell K, Fehlings D. The impact of modafinil on spasticity reduction and quality of life in children with cerebral palsy. Developmental Medicine and Child Neurology 2008;50:510-514. Narayanan U. Multiple Collaborators from American Academy of Pediatrics Orthopaedic Section and Pediatric Orthopaedic Society of North America: Management of Pediatric Trauma. Pediatrics 2008;121(4):849-54.
Redekop S, Andrysek J, Wright V. Single-Session Reliability of Discrete Gait Parameters in Ambulatory Children with Cerebral Palsy based on GMFCS level. Gait Posture 2008;28(4):627-33. Silva J, Torres J, Chau T, Mihailidis A. A novel asynchronous access method with binary interfaces. Journal of Neuroengineering and Rehabilitation 2008;5:24. Stevens B, McGrath P, Dupuis A, Gibbins S, Beyene J, Breau L, Camfield C, Finley A, Franck L, Howlett A, Johnston C, McKeever P, O’Brien K, Ohlsson A, Yamada J. Indicators of pain in neonates at risk for neurological impairment. Journal of Advanced Nursing 2008;65(2):285-296. Tai K, Blain S, Chau T. A review of emerging access technologies for individuals with severe motor impairments. Assistive Technology 2008;20:204-219. Tam C, Teachman G, Wright V. Pediatric Application of Individualized Client-Centered Outcome Measures: A Literature
Review. British Journal of Occupational Therapy 2008;71(7):286-296. Thompson P, Beath T, Bell J, Jacobson G, Phair T, Salbach NM, Wright FV. Test-retest reliability of the 10-metre fast walk test and 6-minute walk test in ambulatory school-aged children with cerebral palsy. Dev Med Child Neurol 2008;50:370-376. Wiles R, Cott C, Gibson BE. Understanding hope and illness: A narrative literature review of qualitative research on hope, expectations and recovery, Journal of Advanced Nursing 2008;64(6):564-573. Wright JG, Smith PL, Owen JL, Fehlings DL. Assessing functional outcomes of children with muscular dystrophy and scoliosis: the muscular dystrophy spine questionnaire. Journal of Pediatric Orthopaedics 2008;28(8):840-845. Wright JG, Smith PL, Owen JL, Fehlings DL. Simple Bone Cyst Trial Group: A randomized clinical
trial comparing intralesional bone marrow and steroid injections for simple bone cysts. The Journal of Bone & Joint Surgery (A) 2008;90(4):722-30. Wright V, Rosenbaum P, Goldsmith C, Fehlings D, Law M. How do changes in body functions/structures, activity and participation relate to each other in children with cerebral palsy. Dev Med Child Neurol 2008;50:283-289.
Peer-Reviewed Funding fMRI for the study of response inhibition, and face and linguistic processing in autism, Seaver Foundation, (2 Years), $28,687, Anagnostou, E (PI) fMRI study of the effect of intravenous oxytocin vs placebo on response inhibition and face processing in autism, Seaver Foundation, (3 Years), $10,625, Anagnostou, E (PI)
Clinical trial network; infrastructure grant to do multisite pilot studies in autism, Autism Speaks, (3 Years), $114,483, Anagnostou, E (PI) Refinement of prototype for self-energizing prosthetic knee damper, Ontario Centers of Excellence CCIT Market Readiness, (1 Year), $50,000, Andrysek, J (PI)
Young S, Pratt J, Chau T. Choosing the fastest movement: perceiving speedaccuracy tradeoffs. Experimental Brain Research 2008;185(4):681-688.
A double blind placebo controlled trial of memantine targeting motor skills in autism, Autism Speaks, (2 Years), $54,493, Anagnostou, E (Co-PI)
Further development of a stance-phase controlled kneeankle-foot-orthotic, Proof of Principle Fund of the Ontario Research Commercialization Program (ORCP - POP), (1 Year), $50,000, Andrysek, J (PI)
Zabjek KF, Leroux MA, Coillard C, Prince F, Rivard CH. Postural characteristics of adolescents with idiopathic scoliosis. J Pediatric Orthop 2008;28(2):218-24.
Brain glutamate concentrations in autistic adolescents by magnetic resonance spectroscopy, NARSAD - Young Investigator Award, (2 Years), $30,000, Anagnostou, E (PI)
Swing-phase controller for a lowcost prosthetic knee joint, Proof of Principle Fund of the Ontario Research Commercialization Program (ORCP - POP), (1 Year), $49,000, Andrysek, J (PI)
Brain glutamate concentrations in autistic children by magnetic resonance spectroscopy, Autism Speaks, (2 Years), $54,791, Anagnostou, E (PI)
Effect of the Wii Fit video game as a therapeutic intervention in promoting dynamic balancecontrol among paediatric amputees, Bloorview Research
Institute Seed Grant Competition, (1 Year), $24,525, Andrysek, J (Co-PI) Design of a Novel, User-centred Prosthetic Sleeve, Medicork Ltd., (1 Year), $21,000, Biddiss, E (PI) Longitudinal study of the relationship between impairment, activity limitation, participation and quality of life in persons with Duchenne muscular dystrophy- a five-year study, CINRG, (5 Years), $8,395, Biggar, D (PI) Enhancing Inter-subjectivity in Infants at High-Risk for Autism, Autism Speaks Canada, (3 Years), $212,668, Brian, J (Co-PI) Canada Research Chair in Intelligent Systems in Multidisciplinary Paediatric Rehabilitation, Canada Research Chairs, (5 Years), $143,500, Chau, T (PI) Intelligent systems in paediatric rehabilitation, Natural Sciences and Engineering Research Council, Discovery GrantsIndividual, (5 Years), $31,768, Chau, T (PI)
Combining musical training through VMI and Smart Kids Learning Software, Ministry of Research and Innovation, Ontario Research Commercialization Program, (1 Year), $50,000, Chau, T (PI) Advanced body-machine interfaces for voiceless communications, Principal Investigator (with E. Bouffet and Panacis Medical) Ontario Centres of Excellence, Biomedical Collaborative Research Program, (3 Years), $80,000, Chau, T (PI)
Small Company Research Program, (1 Year), $276,770, Chau, T (Co-PI) Access innovations for individuals without a voice, REMAD Foundation (Hong Kong), Operating Grants for Scientists of Chinese Descent, (3 Years), $50,000, Chau, T (PI) An Evaluation of the Long-term Effectiveness of Botulinum Toxin in Children with Spastic Cerebral Palsy, CIHR, (4 Years), $106,489, Fehlings, D (PI)
“Body talk”: access technologies for voiceless communication and interaction, Ministry of Research and Innovation, Early Researcher Award, (5 Years), $38,000, Chau, T (PI)
Cerebral Palsy Outcomes Project (CPOP), American Academy for Cerebral Palsy and Developmental Medicine, (1 Year), $25,000, Fehlings, D (PI)
Development of a proof-ofconcept medical device: the aspirometer, Ministry of Research and Innovation, Ontario Research Commercialization Program, (1 Year), $50,000, Chau, T (PI)
There’s no place like home: What constitutes an “adequate” home environment for younger disabled adults? CIHR Catalyst Grant: Ethics, (2 Years), $46,072, Gibson, B (Co-PI)
Development of a commercial prototype of a device to assist aspiration detection, Precarn,
Assessment of Children’s Capacity to Consent for Research: A Descriptive Qualitative Pilot Study
of Researchers’ Practices and REBs’ Expectations, Bloorview Research Institute Seed Grant, (1 Year), $24,926, Gibson, B (PI) WALK: Why Ambulation Learning for Kids? Social Science and Humanities Research Council (SSHRC) Research Development Initiatives, (1 Year), $35,351, Gibson, B (PI) School role participation: Perspectives of the child, the parents, and the teachers, Social Sciences and Humanities Research Council of Canada, (3 Years), $36,666, King, G (Co-PI) Facilitating the development of professional expertise in children’s mental health, rehabilitation, and education services, Social Sciences and Humanities Research Council of Canada, (1 Year), $18,210, King, G (PI) Inclusion in the environments and activities of childhood: A focus on optimal environments and the experience of meaningful participation, Canadian Institutes of Health Research, (1 Year),
$9,937, King, G (PI) An evaluation of an occupational therapy mentorship program: Effects on therapists’ skills and family-centred behaviour, Bloorview Research Institute Seed Grant Competition, (1 Year), $24,783, King, G (PI) Facilitating optimal life experiences and environments for children with disabilities and their families, Ontario Mental Health Foundation, (3 Years), $29,840, King, G (PI) Communication competencies in children who use augmentative and alternative communication (AAC): A multi-site and crosscultural investigation, Ontario Federation for Cerebral Palsy, (1 Year), $39,648, King, G (Co-PI) From Knowledge Generation to Knowledge Translation: A Systems Approach to Reducing the Burden of Injury in Canada, Canadian Institutes of Health Research, (5 Years), $188,472, Macarthur, C (PI)
A longitudinal evaluation of The LIFEspan Model of linked healthcare, Ontario Neurotrauma Foundation, (4 Years), $76,750, Macarthur, C (Co-PI) Outcomes Research in Paediatrics, Hospital for Sick Children Foundation, (5 Years), $150,000, Macarthur, C (Co-PI) The Lived Experiences of Mothers of Children with Autism, Social Sciences and Humanities Research Council of Canada, (3 Years), $18,000, McKeever, P (Co-PI) School, Home and Neighbourhood Accessibility: Physically Disabled Children’s Assessments (The ScHaN Project), Canadian Institutes of Health Research, (3 Years), $120,256, McKeever, P (PI) The Lived Experiences of Mothers of Children with Autism, The Hospital for Sick Children Foundation, (2 Years), $64,910, McKeever, P (Co-PI)
Identity, Embodiment and Heart Transplantation: A Phenomenologically-Informed Exploration, Advanced Heart Failure Fund, University Health Network, (1 Year), $75,000, McKeever, P (Co-PI) From fixing to function: exploring opportunities for the development of a functional optimization model for intervention for children with disabilities, Social Sciences and Humanities Research Council of Canada (SSHRC), (1 Year), $10,000, Narayanan, U (Co-PI) Functional Outcomes Following Orthopaedic Surgery Based On Gait Laboratory Versus Observational Gait Analysis In Ambulatory Children With Cerebral Palsy: A Randomized Controlled Trial, Zimmer of Canada, (2 Years), $4,250, Narayanan, U (PI) Functional Outcomes Following Orthopaedic Surgery Based On Gait Laboratory Versus Observational Gait Analysis In Ambulatory Children With
Cerebral Palsy: A Randomized Controlled Trial, Pediatric Orthopaedic Society of North America (POSNA), (2 Years), $15,500, Narayanan, U (PI) Safety and efficacy of botox injection in alleviating postoperative pain & improving quality of life in lower extremity limb lengthening, Clinical Outcomes Studies Advisory Board (COSAB) of Shriners Children’s Hospitals, (3 Years), $73,333, Narayanan, U (PI) Development of a Computer Adaptive Test - Patient Reported Outcome Measure for Children with Physical Disabilities, AACPDM Planning Grant, (1 Year), $22,325, Narayanan, U (Co-PI) Collaborative Community-Based Complex Care Coordination, Norman Saunders Complex Care Grant, Sick Kids Foundation, (2 Years), $23,725, Narayanan, U (Co-PI) Globus Pallidus Deep Brain Stimulation in Children with Dystonia, New Investigator Grant,
Sick Kids Foundation (2 Years), $59,308, Narayanan, U (Co-PI) Concerns, needs and expectations of parents and caregivers of children with severe cerebral palsy, Ontario Federation for Cerebral Palsy, (2 Years), $16,017, Narayanan, U (PI) Implementation of Low Risk Ankle Rules, PSI Foundation, (2 Years), $80,500, Narayanan, U (Co-PI) The Establishment of a Patient Registry for the Autism Treatment Network, Autism Treatment Network (ATN), (3 Years), $150,000, Roberts, W (PI) Development of an Indicator of the Impact of Assistive Devices on Children with Disabilities and Their Families, Canadian Institutes of Health Research, (3 Years), $70,833, Ryan, S (PI) 1Q4All.com – One Q for All, HTX-OCE-IRAP Business Partnership Program, (1 Year), $243,875, Shein, F (PI)
Focus on the Outcomes of Communication Under Six (the FOCUS): Evaluating validity and responsiveness to change, Canadian Institutes of Health Research, (3 Years), $74,563, Thomas-Stonell, N (PI) Evaluating the validity and responsiveness of the FOCUS: Focus on the Outcomes of Communication Under Six, Canadian Institutes of Health Research, (3 Years), $58,333, Thomas-Stonell, N (PI) A comparison of the WeeFIM and PEDI questionnaires for measuring change in functional status of young children with cerebral palsy or developmental delay, Canadian Institutes of Health Research, (3 Years), $58,333, Wright, V (PI) Functional Status Outcome Indicators for Young Children with Cerebral Palsy: Evaluation of the Comparative Abilities of Two Internationally-recognized Measures to Detect Change, and Determination of Benchmarks for Clinically Important Change,
Canadian Institutes of Health Research, (2 Years), $87,282, Wright, V (PI) Evaluation of quality of movement in ambulatory children with cerebral palsy: Validity and Sensitivity to change of the Quality FM, Physicians Services Inc. (PSI), (2 Years), $62,500, Wright, V (Co-PI)
Awards and Honours Tom Chau Early Researcher Award, Ontario Ministry of Research & Innovation Sandi Cox Canadian Nursing Association Centennial Award – honouring exceptional registered nurses. Unni Narayanan Robert Salter/Orthopaedic Resident Teaching Award Distinction, University of Toronto
rehabilitation research and development for children with cerebral palsy). Fraser Shein WordQ, SpeakQ, ThoughtQ were voted as one of the Brightest Ideas of 2008 in the National Center for Technology Innovation Tech Expo, Washington. Virginia Wright Exceptional Achievement Award in Research. Department of Physical Therapy. University of Toronto
Patty Rigby Circle of Honour Award in Education from Bloorview Kids Rehab Patty Rigby Research Supervision Award from the Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of Toronto Steve Ryan Whittaker Memorial Award from the Ontario Association of Children's Rehabilitation Services (for outstanding achievement in
Bloorview also received the Canadian Nurses Association 2008 Employer Recognition Award.
How we measure up
Fair ★
Good ★★
Excellent ★★★
Bloorview is always looking for better ways to track our performance and communicate how we are doing. Here is an at-a-glance report on our performance. To determine our ratings, Bloorview invited representatives from the Provincial Council for Maternal, Newborn, Child and Youth Health Care, Grandview Children’s Centre, Toronto Central Local Health Integration Network, Child Health Network, Ontario Association of Children's Rehabilitation Services and Bloorview's Board of Trustees and Family and Youth Advisory Committees.
G OA L
M EA SU RE
BENCHMARK
ACTUAL
SCORE
Improve inpatient rehab outcomes
Rate of improvement in children’s functional abilities from admission to discharge using WeeFIM
10% improvement
16% average improvement *
★★★
Improve participation for kids with disabilities
Rate of improvement in performance after intervention using the Canadian Occupational Performance Measure
2 point improvement
3 point average improvement *
★★★
Achieve outpatient rehab therapy goals
Achievement of goals set by the client and/or therapist using Goal Attainment Scaling
A score between 44-55
Average score is 55.4 *
★★
Provide client and family centered care (CFCC)
Number of CFCC domains that achieve or exceed average scores found in literature**:
★★
CA RE
Enabling and partnership
5.46 / 7
3 out of 5 domains achieve or exceed average scores 5.70/ 7
Providing general information
4.28 / 7
4.91/ 7
Providing specific information
5.54/ 7
5.78/ 7
Coordinated and comprehensive care
5.49/ 7
5.27/ 7
Respect and supportive care
5.72/ 7
5.35/ 7
Improve the client experience
Percentage of clients and families who rate Bloorview excellent or good
95%
94%
★★★
Ensure timely access to inpatient care
Percentage of clients admitted within 4 days of being ready
80%
77%
★★
Ensure timely access to effective diagnosis from a developmental pediatrician
Average wait from date of referral to date seen
180 days
272 days
★
Improve access to communications and writing aids services
Rate of change in wait times from 2007-08 to 2008-09
50% wait time reduction from 696 to 348 days
47% reduction to 368 days
★★
Reduce the rate of hospital acquired infections
Overall infection rate compared to Bloorview’s average rate for the previous 36 months
4.9 per 1000 inpatient days
3.3
★★★
G OA L
M EA SU RE
BENCHMARK
ACTUAL
SCORE
Number of peer reviewed grants per full time employee (FTE) compared to other clinical research institutes
2
5.9
★★★
Number of peer reviewed publications per FTE compared to other clinical research institutes
2
3.4
★★★
Number of IPE placements compared to Bloorview’s performance last year
2
3
★★★
Number of professional groups involved in IPE compared to Bloorview’s performance last year
9
11
★★★
Staff turnover rate compared to 2007-08 Ontario Hospital Association (OHA) data
11.6%
9.5%
★★
Staff average sick time compared to 2007-08 OHA data
10.3 days
6.2 days
★★★
Current ratio of short-term assets and liabilities based on the Toronto Central Local Health Integration Network (TC LHIN) standards
0.8 – 2.0
1.3
★★★
Year end financial position based on TC LHIN standards
TC LHIN target $227,521
(595,000)***
★★
RESEA RCH Enhance the output and impact of research
TEA CH IN G Lead interprofesional education (IPE) in childhood disability
H U M A N RESOU RCES Offer staff a satisfying, healthy and safe workplace
F IN A N CE
Ensure a sound financial position
*Bloorview also looks at the percentage of clients who meet targets to better understand the full scope of Bloorview’s performance. **Measure of Process of Care, CanChild Centre for Childhood Disability Research. ***Without the realization of investment losses due to a change in investment managers we would have shown an operating surplus of $804,671.
wonder: verb, to be filled with admiration or awe wonder: verb, to feel curiosity, to query in the mind
A teaching hospital fully affiliated with
150 Kilgour Road, Toronto, ON M4G 1R8 T 416-425-6220 | E info@bloorview.ca
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