rehabilitation symposium, february 4 2019 noémi …...2019/02/14 · rehabilitation in amc •...
TRANSCRIPT
Arthrogryposis, rehabilitation and patient-oriented research
Rehabilitation Symposium, February 4 2019Noémi Dahan-Oliel, PhD OT
Outline
• What is AMC?• What do we know about rehab in AMC?• What is patient-oriented research (POR)?• Patient-oriented research in AMC• Lessons learned & the future
What is AMC?
Arthrogryposis multiplex congenita (AMC): 1 in 3000 live births Joint contractures ≥2 body areas Impairments in other systems
What is AMC?
Rehabilitation in AMC
• Lower levels in self-care domain using the PEDI during preschool and school-age (Joubert & Franzsen, 2016)
• Lower scores in all 6 domains using the PODCI (Amor et al, 2011)
Joubert & Franzsen. Self-care of children with arthrogryposis in Gauteng, South Africa. BJOT. 2016
Amor et al. Use of the Pediatric Outcomes Data Collection Instrument to evaluate functional outcome in arthrogryposis. J Pediatr Orthop. 2011.
Rehabilitation in AMC
Binkiewicz-Glinska A, Sobierajska-Rek A, Bakula S, et al. Arthrogryposis in infancy, multidisciplinary approach: case report. BMC Pediatr. 2013;13:184.
• Early, comprehensive and multidisciplinary(Binkiewicz-Glinska, 2013)
• Achieve and maintain maximal range of motion and strength– Promote self-care, mobility and participation
Rehabilitation in AMC
• Manipulation, casting, taping, orthosis– Improve ROM and maintain gains
• Promote floor mobility and weight bearing• Exoskeleton
– Use of upper body for fine motor skills (Babik et al, 2016)
Babik et al. Feasibility and effectiveness of a novel exoskeleton for an infant with arm movement impairments. Pediatr Phys Ther. 2016;28(3):338-46.
Rehabilitation in AMC
What we know:• Complex cases• Research is single-site and fragmented• Collaborative research is beneficial
What we don’t know:• Evidence-basedinterventions
« interactive, bi-directional exchange betweenstakeholders and researchers » in order to develop research that is most important to patients and to improve the quality and relevance of research. (Curtis et al., 2012)
http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf
Patient-oriented research
Support Mutual Respect
Co-Build
http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf
Patient-oriented research
Patient-oriented research in AMCSetting research priorities
Planning meeting, May 22nd 2016
Patient-oriented research in AMCSetting research priorities
Knowledge Exchange Day, Dec. 4, 2016
Patient-oriented research in AMCSetting research priorities
– Genetics inheritance: early diagnosis & screening– Identification of outcome measures to evaluate
interventions– Effectiveness of treatment– Physiotherapy/exercise program– Longitudinal studies to document adult outcomes
Patient engagement framework
Patient-oriented research in AMC1. Registry
Priorities:
1. Daily activities2. Pain management3. Mobility4. Muscle and joint function5. Participation in the community
Patient-oriented research in AMC2. Rehabilitation Guidelines
Elfassy et al. Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders. (2019) In press, Disability & Rehabilitation
Patient-oriented research in AMC2. Rehabilitation Guidelines
“AMC and ME” content developmentTranslation to French and Spanish
Patient-oriented research in AMC3. Animated video
• Telerehabilitation to develop a home exercise program for youth
• PhotoVoice to empower youth and guide clinical practice
• Development of an AMC-specific outcome measure for the upper extremity
Patient-oriented research in AMCOther Studies
Lessons learned & the future
• POR is worth exploring• Not all projects readily amenable to POR• Funding for research partners• Link with clinical departments and support
groups
Funding Support
THANK YOUCollaborations:Dr. Reggie HamdyDr. Frank RauchDr. Harold van BosseLisa WagnerDr. Judith Hall Dr. Bonnie SawatzkyTanya BédardDr. Laurie SniderDr. Cynthia Gagnon
Administrative support:Carla Evangeliste
Youth and families
Research staff:Sarah CachechoJessica CollinsVasiliki DarsaklisKathleen Montpetit
Students:Caroline ElfassyMarianne GagnonAlexa CirilloKevin CaporuscioSabrina ShemieDelphine JaumardKoorosh Semzar-KazerooniQi Yue He