Ottawa Pediatric Rehabilitation Research Alliance (OPRRA) /

1. Ottawa Pediatric Rehabilitation Research Alliance (OPRRA) / Alliance de recherche en réadaptation pédiatrique d’Ottawa (ARRPO) Vision: Partners in Research Mission: To create and maintain a supportive pediatric rehabilitation research culture in Eastern Ontario, through advocacy, information sharing and collaborative research activity Spring/Summer 2015 – Volume 10, Number 3 OPPRA Researcher Profile Dr. Toupin April joined the CHEO Research Institute as an Associate Scientist in the Evidence to Practice research program. She holds a B.Sc. in occupational therapy, an M.Sc. in rehabilitation, a Ph.D. in public health from the Université de Montréal, and undertook a post-doctoral fellowship at the University of Ottawa. She has research expertise in chronic disease management, complementary and alternative medicine, and knowledge translation. Her work has included research in pediatric and adult musculoskeletal health, with experience in developing measurement tools and decision aids involving benefits and risks of conventional and unconventional treatments, as well as self-management tools. Dr. Toupin April’s research focus is in developing valid and reliable tools that contribute to understanding patients’ and families’ health decisions and behaviour, as well as help them choose the best treatments. She is currently involved in a research project seeking to develop and validate a questionnaire assessing the use of complementary and alternative medicine in pediatrics. She is also involved in a project to assess the decisional needs of children followed at CHEO. Finally, she is currently working on the development of a decision aid, as well as the development and validation of a self-management tool for patients with osteoarthritis. Dr. Toupin April kindly agreed to participate in an interview about her research with OPPRA: Question: What got you interested in research? Dr. Toupin April: My interest in research began when I was a student in occupational therapy (OT) at the Université de Montréal. I was often asking questions about the evidence behind OT interventions and often wondered how we could improve practice.

2. How to Contact Us: OPRRA is a partnership that currently includes the following organizations: Ottawa Children’s Treatment Centre (OCTC); Children’s Hospital of Eastern Ontario (CHEO); CHEO Research Institute (CHEO RI); and the University of Ottawa Faculty of Health Sciences. (UO). Current committee members are: From OCTC: Liz Vilé (chair) lvile@octc.ca Joseé Sequin jseguin@octc.ca From CHEO: Robin Gaines gaines@cheo.on.ca Chantal Lessard clessard@cheo.on.ca Gary Bourque gbourque@cheo.on.ca From CHEO RI: Viviane Grandpierre vgrandpierre@cheo.on.ca From UO: Amineh Koravand amineh.koravand@uOttawa.ca (continued from previous page) When I was in the third year of my BSc in OT, my asthma flared up and I had so much trouble breathing and wondered how I could have better managed my health condition. This is when I decided that I wanted to go into research to develop interventions to help patients with chronic diseases to better understand their disease and manage their health. Shortly after, I met Dr. Debbie Feldman, a very enthusiastic professor and researcher in the department of physiotherapy who suggested a very interesting research project. The objective of this project was to compare perceptions of children with juvenile arthritis (one of the most important pediatric chronic diseases) and their parents about their quality of life and adherence to treatment. It really hit home, as I often did not agree with my parents on these aspects. I did a masters degree with this project. We showed that children’s and parents’ perceptions differ, which means that health care providers need to consider both children’s and parents’ perceptions in order to develop treatment plans that address these needs. I loved my experience. I was hooked! Question: What was the best advice you have received about pursuing a career in research? Dr. Toupin April: I have learned from individuals who are passionate about research, work hard and stay positive even in the face of adversity. I think the most important advice I received was to find great mentors (people who are passionate and who want to help, and do not do it for their own benefit), work hard (while still keeping a balanced life) and stay positive even when you receive harsh feedback (as it will happen, and it constitutes a great way to learn and grow). Another crucial piece of advice is also to stay focused on the specific research areas of interest. It is easy to say ‘yes’ to every project that comes up, but unless we are superwomen and supermen, we will not be able to do everything. Question: What have you and your colleagues been able to accomplish in the past five years? Dr. Toupin April: First of all, I had two children in the past five years, which definitely took a lot of time and energy! I also worked on a few research projects. Along with collaborators at the Montreal Children’s Hospital (MCH), the Children’s Hospital of Eastern Ontario (CHEO), the University of Ottawa and the Hospital for Sick Children, I developed and conducted a preliminary validation of instruments to evaluate the use and perceptions of a variety of

3. (continued from previous page) treatments among children withJuvenile arthritis and their parents. These instruments will help health care providers to understand why patients are using certain treatments and how to help them follow the optimal treatment regimen for their own needs. These instruments are the “Which Health Approaches and Treatments are you using?” (WHAT) questionnaire, which assesses complementary and alternative medicine use, and the “Child Adherence Report questionnaire” (CARQ), which assesses children’s adherence to prescribed treatments (i.e., medication, exercise, splints). I also collaborated in the development and assessment of clinical practice guidelines in adult and pediatric rheumatology. I was in charge of gathering scientific evidence to develop the American College of Rheumatology 2012 recommendations for the use of non-pharmacologic and pharmacologic therapies in osteoarthritis of the hand, hip, and knee. I also developed user-friendly visual summaries of the evidence (pictograms showing the percentage of patients who benefit or are harmed by the treatments) to include in a decision aid (found at http://ow.ly/JmjGD). The decision aid provides information about 13 treatment options for osteoarthritis that are organized in steps according to their benefits. It also helps patients to clarify their personal values and helps them to make decisions that coincide with these values. Question: How might clinical practice be influenced by your research findings? Dr. Toupin April: The use of the various instruments and interventions will help health care providers to understand patients’ use and perceptions of treatments. It will also provide reliable evidence-based information on a variety of treatment options, and support to make informed decisions that align with their values and preferences. By having more information and support to make health decisions, youth may become more engaged in their care, be more adherent to treatment, and better manage their disease, ultimately leading to better health outcomes. This is a very exciting research area that has not been studied in depth in pediatrics. There is a need to involve youth in their care and in decision making, but this is not done in an optimal fashion in current clinical practice.

4. Announcements Recent publications Fitzpatrick, E. M., & Olds, J. (2015). Practitioners' perspectives on the functioning of school-age children with cochlear implants. Cochlear implants international, 16(1), 9-23. Fitzpatrick, E. M., Thibert, J., Grandpierre, V., & Johnston, J. C. (2014). How HANDy are baby signs? A systematic review of the impact of gestural communication on typically developing, hearing infants under the age of 36 months. First Language, 34(6), 486-509. Gaines, R.,  Lefebvre, P., Staniforth, L-., A. & Chiasson, V.  (2014). Literacy Skills of Children with Childhood Apraxia of Speech.  Canchild, In Brief. http://www.canchild.ca/en/canchildresources/resources/InBrief-literacyskills_Dec12014.pdf Gaines, R. & Theoret-Douglas, C.  (2014). Program Evaluation of a Parent Education Session:  A Quality Improvement Initiative. Communiqué. http://blog.sac-oac.ca/program-evaluation-of-a-parent-education-session-a-quality-improvement-initiative/ Toupin-April, K., Barton, J., Fraenkel, L., Li, L., Grandpierre, V., Guillemin, F., ... & Tugwell, P. S. (2015). Development of a Draft Core Set of Domains for Measuring Shared Decision Making in Osteoarthritis: An OMERACT Working Group on Shared Decision Making. The Journal of rheumatology, jrheum-141205. Volunteer shout out!! Speech-language pathology would like to give a shout out to Ms. Mona Ebrahimipour who is volunteering with Robin Gaines on a few projects.  Ms Ebrahimipour is a speech language pathologist who recently moved to Canada from Tehran and is awaiting certification to practice in Ontario.

5. CHEO Rehab PSU Research Education & Poster Session presented on Program Evaluation research and highlighted the need to engage patients and families in all aspects of a project. This was followed by a  panel of five CHEO clinicians (Sarah Bigford, Jessica Wilson, Carrie Owen, Nicole Moore and Robin Gaines) who shared their experiences and lessons learned conducting program evaluation. As members of the Ottawa Pediatric Rehabilitation Research Alliance (OPRRA), the Rehabilitation Program and Chronic Pain Service at CHEO hosted a research symposium on April 15th.  Staff and students from CHEO, OCTC, CHEORI and the U of Ottawa displayed posters at 11-12 and 1-2.  At noon, Katherine Moreau Research News: Conferences attended from 2014-2015 On April 15, 2015, Robin Gaines, Speech/Language Pathologist presented a Speech/Language Pathology and Audiology of Canada (SAC) webinar entitled: “First Steps for the SLP: The Infant-Toddler Showing At-Risk Signs for ASD”. The webinar was a huge success.  126 individuals and groups of SLPs across Canada were logged on and participated. Approximately 10 groups had 15-20 SLPs watching together.  Many other groups had 4-7 SLPs.  Others were individuals online. Those interested in the content are encouraged to google a public website called “Autism Navigator” created by Dr. Amy Wetherby and her Florida State University team. When you get to the site you can login to “About Autism in Toddlers”, see videos and receive important information about the early signs of autism. Anique Gagan, a speech-language pathologist recently attended the 72nd Annual Meeting of the American Cleft Palate-Craniofacial Association in Palm Springs, California from April 20-25, 2015.

6. CHEO’s new Chronic Pain Program: Driven by Passion In these times of fiscal restraint, governmental funding to create new health care programs is something to be celebrated. In March 2015, the Ontario Ministry of Health officially announced $881,517 in yearly funding for CHEO’s Chronic Pain program. The road to going from a small team of dedicated professionals devoted to treating children and youth who were suffering with chronic pain, to a broader designated interprofessional team was not an easy one. Dr. Christine Lamontagne is the physician who first spearheaded the program at CHEO. The group started off with a few passionate providers who ran the clinic once a month. This included a physiotherapist, then a pharmacist, and soon thereafter a nurse was assigned to the group. Dr. Lamontagne also collaborated with national benchmarking study with IWK: Services for Pediatric Chronic Pain in Canada: Results of a National Survey (K. Bailey, K.Rancourt, S.Allen, C.Lamontagne, J.Chorney). The results of their study provided the evidence needed to put forward the proposal to the Ontario Ministry of Health. The Agreement with Ministry involved funding staff for Chronic Pain clinics across Ontario (London, Sick Kids, Holland-Bloorview, Hamilton, CHEO, and possibly Thunder Bay) with the creation of Pediatric Chronic Pain Network so that the centres can work together.   The main objective of the program is to adopt an evidence-based, family centered and interprofessional approach that focuses on the three pillars of chronic pain management: pharmacological, psychological and physical. CHEO’s team members now include: Pain physician 1.0 Nurse Case Manager 1.2 Nurse Practitioner (shared with Acute Pain) 0.4 Pharmacist 2.2 Physiotherapy (includes Coordinator) 0.6 Occupational therapy 1.4 Psychology 1.0 Social Work 1.0 Admin/Data Analyst

7. (Continued from previous page) A year ago, CHEO’s outpatient chronic pain program had an eight to nine month waiting time for assessments and an additional wait time for psychology and physiotherapy services. The wait time has now been reduced to 2 or 3 months! They currently have an active patient caseload of over 170 children and teens. With the help of Lindsay Cuncins, a student who is currently doing a graduate certificate in program evaluation, the CHEO team is collecting data for a program evaluation study. They will also work together with the other centers in the Pediatric Chronic Pain Network to evaluate their program’s effectiveness. CHEO and their partner agencies in the network are working to lead the charge in developing treatment protocols and best practices for pediatric patients with chronic pain in Canada. Welcome to the OPRRA Community! Introducing Dr. Amineh Koravand master’s degree from the Université de Montréal, she completed a doctorate in biomedical sciences with a specialization in audiology at the CHU Ste-Justine Research Centre in 2012 as an award recipient of the Fonds de recherche en santé du Québec (FRSQ). Dr. Koravand's research deals with the relationship between the peripheral and central auditory systems in children. Her goal is to develop neurophysiological measures (neurobiological markers) to assess the central auditory functions of children during early childhood, to prevent disorders while brain plasticity is still significant. She was involved in the Université de Montréal audiology program as a course instructor, practicum supervisor and master’s research co-supervisor. Amineh Koravand is an assistant professor in the Audiology and Speech-Language Pathology program of the School of Rehabilitation Sciences, Faculty of Health Sciences. As well, she has been an audiologist and member of the Ordre des orthophonistes et audiologistes du Québec since 2007. Having earned a bachelor’s degree in audiology in Tehran and a