Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): Development & Validation of a New Disease-specific Measure of Health Related Quality of Life in Children with Severe Disabilities Due to CP
Grant Recipient: Unni Narayanan, MD
- Institution:
- Hospital For Sick Children, Toronto, ON
- Presentations & Publications:
- Presentations: 1. Unni G. Narayanan, Darcy Fehlings, Shannon Weir, Ken Campbell, Sonia Kiran: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): The Initial Development and Validation of a Disease-Specific Measure of Health Status and well being of Children with Severe Disabilities due to Cerebral Palsy. American Academy of Cerebral Palsy & Developmental Medicine Annual Meeting 2004, Los Angeles, California, Sep 30, 2004. 2. Unni G. Narayanan: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): Development & Validation of a new Health Related Quality of Life Instrument for Children with Severe Cerebral Palsy. Royal Children's Hospital, Melbourne, Australia; November 3, 2004, Melbourne, Victoria, Australia., Nov 3, 2004 - Nov 5, 2004. 3. Unni G. Narayanan, Darcy Fehlings, Shannon Weir, Ken Campbell, Sonia Kiran: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): The Initial Development and Validation of a Disease-Specific Measure of Health Status and well being of Children with Severe Disabilities due to Cerebral Palsy. European Paediatric Orthopaedic Society Annual Meeting 2005, Palma de Mallorca, Spain, Apr 9, 2005. 4. Unni G. Narayanan, Darcy Fehlings, Shannon Weir, Ken Campbell, Sonia Kiran: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): The Initial Development and Validation of a Disease-Specific Measure of Health Status and well being of Children with Severe Disabilities due to Cerebral Palsy. Canadian Orthopaedic Association Annual Meeting 2005, Montreal, Quebec, Jun 5, 2005. 5. Unni G. Narayanan, Shannon Knights, Shannon Weir, Darcy Fehlings: Caregivers' Rating of Importance of Items in a New Measure of Health Related Quality of Life in Children with Severe Cerebral Palsy. American Academy of Cerebral Palsy & Developmental Medicine 2005 Annual Meeting, Orlando, Florida, Sep 16, 2005. 6. Unni G. Narayanan, Michael Livingston, Shannon Weir: Further validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) Questionnaire. European Paediatric Orthopaedic Society 2006 Annual Meeting, Dresden, Germany, Apr 8, 2006. 7. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy Fehlings: Further validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) Questionnaire: a disease specif measure of health related quality of life in children with severe cerebral palsy. American Academy of Cerebral Palsy & Developmental Medicine, Boston, Massachusetts, Sep 16, 2006. 8. 34th Annual Townsend Day Pediatric Orthopaedic Seminars, Alberta Children’s Hospital, Calgary, Oct 12-13, 2006. Invited Lecture: “Development of outcome and health related quality of life measures for children with cerebral palsy.” Posters: 1. Unni G. Narayanan, Darcy Fehlings, Shannon Weir, Kent Campbell, Sonia Kiran: The Initial Development and Validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD), a Disease-Specific Measure of Health Status and well being of Children with Severe Disabilities due to Cerebral Palsy. (Scientific Poster) Pediatric Orthopaedic Society of North America Annual Meeting, 2005: Ottawa, Ontario May 15, 2005 - May 18, 2005. 2. Unni G. Narayanan, Shannon Weir, Darcy Fehlings, Michael Livingston, Shannon Knights, Sonia Kiran, Kent Campbell: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): A Disease-Specific Measure of Health Related Quality of Life in Children with Severe Cerebral Palsy. (Poster) American Academy of Cerebral Palsy & Developmental Medicine 2005 Annual Meeting, Orlando, Florida, Sep 15, 2005 - Sep 17, 2005. 3. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy Fehlings: The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) measures health related quality of life of children with severe cerebral palsy. (Scientific e-poster) Pediatric Orthopaedic Society of North America, 2006 Annual POSNA meeting, San Diego, California, Mar 5, 2006 - Jun 5, 2006. 4. Livingston M, Weir S, Narayanan UG. The CPCHILD Database: The first step in a multi-centre validation study of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Poster: Samuel Lunenfeld Summer Research Student Program Symposium, Toronto, Ontario. July 28, 2004. Publications: 1. Unni G. Narayanan, Darcy Fehlings, Shannon Weir, Shannon Knights, Sonia Kiran, Kent Campbell: Caregiver Priorities & Child Health Index of Life with Disabilities: Initial development and validation of an outcome measure of health status and well-being in children with severe cerebral palsy. Developmental Medicine and Child Neurology 2006, 48: 804-812. 2. Unni G. Narayanan, Shannon Knights, Shannon Weir, Michael Livingston, Darcy Fehlings: Does the Caregiver Priorities & Child Health Index Measure Health Related Quality of Life in Children with Severe Cerebral Palsy? (In Review by Developmental Medicine and Child Neurology.) 3. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy Fehlings: Further validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) Questionnaire (In Preparation) Abstracts: 1. Unni G. Narayanan, Darcy L. Fehlings, Kent Campbell, Shannon Weir, Sonia Kiran: Caregiver Priorities and Child Health Index of Life with Disabilities: Development & Initial Validation of a Disease-Specific Measure of Health Status & Well Being in Children with Severe Disabilities due to Cerebral Palsy. Developmental Medicine and Child Neurology 2004: 46 Suplmt: pp 6. 2. Unni G. Narayanan, Darcy L. Fehlings, Kent Campbell, Shannon Weir, Sonia Kiran: Development & Validation of a New Outcome Measure of Health Status & Well Being in Children with Severe Cerebral Palsy. Pediatric Orthopaedic Society of North America 2005 Annual Meeting 2005: 2005: pp 132. 3. Unni G. Narayanan, Shannon Knights, Shannon Weir, Darcy L. Fehlings: Caregivers' Rating of the Importance of Items in a New Measure of Health Related Quality of Life in Children with Severe Cerebral Palsy. Developmental Medicine and Child Neurology 2005: 47 Suplmt: pp 25. 4. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy Fehlings: The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) measures health related quality of life of children with severe cerebral palsy. Pediatric Orthopaedic Society of North America, 2006 Annual POSNA meeting, San Diego, California, May 2006. pp 182. 5. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy Fehlings: Further validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) Questionnaire: a disease specific measure of health related quality of life in children with severe cerebral palsy. Developmental Medicine and Child Neurology 2006: 48 Suplmt: pp 47.
- Further Funding:
- 1. I received the 2004 -05 Mac Keith Press Young Investigator Award from the American Academy of Cerebral Palsy & Developmental Medicine for this work. 2. The most recent presentation at the 2006 AACPDM meting has been nominated for the Gayle Arnold award for the best paper (winner TBA at the 2007 AACPDM meeting). 3. Ontario Federation of Cerebral Palsy Research 2006 Research Grant ($36,000): “Needs, concerns and expectations of parents of children with severe cerebral palsy”. This project is a qualitative study involving participant observation of caregivers and their children with severe cerebral palsy in their homes, and focus groups of these caregivers to identify the priorities of parents and caregivers of these children, and to ensure that the CPCHILD does indeed represent the caregivers’ priorities. 4. My research team is currently putting together an operating grant to the Canadian Institutes of Health Research (CIHR) for an international multi-centre study to: test the generalizability of the CPCHILD in other geographic/demographic jurisdictions, and assess longitudinally the responsiveness (sensitivity to change) of the CPCHILD to interventions such as spinal fusion, hip reconstructive surgery, intrathecal baclofen pumps, g-/gj-tube insertion/fundoplication surgery, etc for these children
- Additional Information:
- To this end we have developed an electronic database (to facilitate data entry, automatic scoring algorithms, etc), which will be used at each site and be accessible on-line. A number of sites in the United States, Canada and Australia have confirmed their interest in participating in this project.
