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CPCHILD™ Questionnaire
CPCHILD™ Questionnaire

Publications/presentations

The following work regarding the development and validation of the CPCHILD™ has been presented at local, national and international scientific rounds, retreats and conferences:

Publications:

Narayanan UG, Fehlings DL, Weir S, Knights S, Kiran S, Campbell K: 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.

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Narayanan UG: Measuring health related quality of life in children with cerebral palsy. Controversies in Cerebral Palsy (Sanpera, Ignacio, eds). European Pediatric Orthopaedic Society, Palma, Mallorca 2006.

Other Pertinent Publications:

Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning.
Schiariti V, Fayed N, Cieza A, Klassen A, O'donnell M.
Disabil Rehabil. 2011;33(15-16):1330-9. Epub 2010 Nov 10.
PMID:21067341[PubMed - in process]

A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy.
Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R.
BMC Pediatr. 2010 Nov 9;10:81. Review.
PMID:21059270 [PubMed - indexed for MEDLINE]

Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument.
Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S.
Dev Med Child Neurol. 2009 Aug;51(8):660-9. Review.
PMID:19627340[PubMed - indexed for MEDLINE]

Abstracts:

1. Unni G. Narayanan, Darcy L. Fehlings, Kent Campbell, Shannon Weir, Sonia Kiran: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©): development & initial validation of a disease-specific measure of health status & well being in children with severe disabilities due to cerebral palsy. American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Los Angeles, California. Developmental Medicine and Child Neurology 2004: 46 Suplmnt: 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 annual meeting, Ottawa, Canada, 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 fife in children with severe cerebral palsy. American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Orlando, Florida. Developmental Medicine and Child Neurology 2005: 47 Suplmnt: pp 25.

4. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy L. 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 annual meeting, San Diego, California, May 2006: pp 182. 

5. Unni G. Narayanan, Michael Livingston, Shannon Weir, Darcy L. 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. American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Boston, Massachusetts. Developmental Medicine and Child Neurology 2006: 48 Suplmnt: pp 47. 

6. Unni G. Narayanan, Shannon Weir, Darcy L. Fehlings: Does the health status of caregivers influence their perception of the health related quality of life (HRQL) of children with severe non-ambulatory cerebral palsy? American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Vancouver, British Columbia. Developmental Medicine and Child Neurology 2007: 49 Suplmnt: pp 31. 

7. Unni G. Narayanan, Shannon Weir, Jennifer Smith, Darcy L. Fehlings: The impact of musculo-skeletal co-morbidities to health related quality of life of children with severe non-ambulatory cerebral palsy. Pediatric Orthopaedic Society of North America annual meeting, Albuquerque, New Mexico, 2008: pp 132. 

8. Unni G. Narayanan, Shannon Weir, Julie Hughes, Darcy L. Fehlings: Assessing the wellbeing of children with cerebral palsy: A comparison of the CPCHILD© questionnaire and other quality of life measures. American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Atlanta, Georgia. Developmental Medicine and Child Neurology 2008: 49: pp 13.

9. Narayanan UG, Suhail A, Weir S: Does the CPCHILD© questionnaire measure quality of life of children with severe cerebral palsy? American Academy for Cerebral Palsy and Developmental Medicine annual meeting, Washington, DC. Developmental Medicine and Child Neurology 2010: 52, S5.

10. Narayanan UG, Sponseller P, Weir S, Marks M, Newton P: Sensitivity of the CPCHILD© questionnaire to change following surgery for scoliosis in children with severe cerebral palsy. American Academy for Cerebral Palsy & Developmental Medicine annual meeting, Washington, DC. Developmental Medicine and Child Neurology 2010: 52, S5.

Presentations:

1. American Academy for Cerebral Palsy and Developmental Medicine 2004 Annual Meeting, Los Angeles, California, Sep 30, 2004. 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

2. The Annual Salter Visiting Professor Day, Division of Orthopaedic Surgery, The Hospital for Sick Children, Toronto, Ontario, Oct 15, 2004. Measuring health related quality of life in children with severe cerebral palsy

3. Royal Children's Hospital, Melbourne, Australia, Nov 3, 2004. 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

4. European Pediatric Orthopaedic Society 2005 Annual Meeting, Palma de Mallorca, Spain, Apr 9, 2005. Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©): the development and validation of a disease-specific measure of health status and well being of children with severe disabilities due to cerebral palsy

5. Canadian Orthopaedic Association 2005 Annual Meeting, Montreal, Quebec, Jun 5, 2005. Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©): the development and validation of a disease-specific measure of health status and well being of children with severe disabilities due to cerebral palsy

6. American Academy for Cerebral Palsy and Developmental Medicine 2005 Annual Meeting, Orlando, Florida, Sep 16, 2005. Caregivers' rating of importance of items in a new measure of health related quality of life in children with severe cerebral palsy

7. European Pediatric Orthopaedic Society 2006 Annual Meeting, Dresden, Germany, Apr 8, 2006. Further validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©)

8. American Academy for Cerebral Palsy and Developmental Medicine 2006 Annual Meeting, Boston, Massachusetts, Sep 16, 2006. 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

9. 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

10. American Academy for Cerebral Palsy and Developmental Medicine 2007 Annual Meeting, Vancouver, British Columbia, Oct 11, 2007. Instructional course lecture on measuring the quality of life of children with cerebral palsy

11. American Academy for Cerebral Palsy & Developmental Medicine 2007 Annual Meeting, Vancouver, British Columbia, Oct 11, 2007. Does the health status of caregivers influence their perception of the health related quality of life (HRQL) of children with severe non-ambulatory cerebral palsy? 

12. Pediatric Orthopaedic Society of North America 2008 Annual Meeting, Albuquerque, New Mexico, Apr 30 2008. The impact of musculo-skeletal co-morbidities to the health related quality of life of children with severe non-ambulatory cerebral palsy

13. American Academy for Cerebral Palsy & Developmental Medicine 2008 Annual Meeting, Atlanta, Georgia, Sep 18, 2008. Assessing the wellbeing of children with cerebral palsy: A comparison of the CPCHILD© questionnaire and other quality of life measures

14. International Interdisciplinary Conference on Qualitative Health Research, Banff, Alberta, Oct 4, 2008. Concerns, needs and expectations of parents and caregivers of children with severe cerebral palsy: What do health care providers need to know? 

15. International Cerebral Palsy Conference, Sydney, Australia, Feb 18-21, 2009. Whose life is it anyway? Measuring meaningful outcomes for children with severe disabilities

16. International Cerebral Palsy Conference, Sydney, Australia, Feb 18-21, 2009. Assessing the wellbeing of children with severe cerebral palsy: A comparison of the CPCHILD with other quality of life measures

17. International Cerebral Palsy Conference, Sydney, Australia, Feb 18-21, 2009. Concerns, needs and expectations of parents and caregiver of children with severe cerebral palsy

18. International Cerebral Palsy Conference, Sydney, Australia, Feb 18-21, 2009. Impact of musculoskeletal co-morbidities on the health related quality of life of children with severe non-ambulatory cerebral palsy.

19. European Pediatric Orthopaedic Society 2009 Annual Meeting, Lisbon, Portugal, Apr 2, 2009. Impact of musculoskeletal co-morbidities on the health related quality of life of children with severe non-ambulatory cerebral palsy.

20. Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, Aug 18-19, 2009. Whose life is it anyway? Measuring what's meaningful for children with severe disabilities.

21. American Academy for Cerebral Palsy & Developmental Medicine Annual Meeting, Scottsdale, Arizona, Sep 24, 2009. Impact of musculoskeletal co-morbidities on the health related quality of life of children with severe non-ambulatory cerebral palsy.  

22. American Academy for Cerebral Palsy & Developmental Medicine Annual Meeting, Washington, D.C., Sep 22-25, 2010. Does the CPCHILD© questionnaire measure quality of life of children with severe cerebral palsy?  

23. American Academy for Cerebral Palsy & Developmental Medicine Annual Meeting, Washington, D.C., Sep 22-25, 2010. Sensitivity of the CPCHILD© questionnaire to change following surgery for scoliosis in children with severe cerebral palsy.

Posters:

1. Livingston M, Weir S, Narayanan UG. The CPCHILD© database: the first step in a multi-centre validation study of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©). 2004 SickKids Summer Student Research Day. 

2. Knights S, Weir S, Narayanan UG. Rating the importance of items in the CPCHILD© Questionnaire: the caregivers’ perspective. 2004 SickKids Summer Student Research Day. 

3. Narayanan UG, Fehlings DL, Campbell K, Weir S, Kiran S. Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©): development and initial validation of a disease-specific measure of health status and well being in children with severe disabilities due to cerebral palsy. 2004 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting. 

4. Narayanan UG, Fehlings DL, Campbell K, Weir S, Kiran S. 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. 2005 Pediatric Orthopaedic Society of North America (POSNA) annual meeting. 

5. Livingston M, Weir S, Narayanan UG. Validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©) Questionnaire. 2005 SickKids Summer Student Research Day. 

6. Knights S, Weir S, Narayanan UG. Does the CPCHILD© questionnaire measure health-related quality of life? 2005 SickKids Summer Student Research Day. 

7. Narayanan UG, Weir S, Fehlings DL, Livingston M, Knights S, Kiran S, Campbell K. 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. 2005 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting. 

8. Narayanan UG, Livingston M, Weir S, Fehlings DL. The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©) measures health related quality of life of children with severe cerebral palsy. 2006 Pediatric Orthopaedic Society of North America (POSNA) annual meeting. 

9. Smith J, Weir S, Narayanan UG. Contributions to health related quality of life as measured by the CPCHILD©. 2006 SickKids Summer Student Research Day. 

10. Wong A, Weir S, Narayanan UG. Does the health status of caregivers influence their perception of the health related quality of life (HRQL) of children with severe non-ambulatory CP? 2007 SickKids Summer Student Research Day. 

11. Hughes J, Weir S, Narayanan UG. Assessing the wellbeing of children with severe cerebral palsy: a comparison of the CPCHILD© questionnaire and other quality of life measures. 2007 SickKids Summer Student Research Day. 

12. Narayanan UG, Weir S, Smith J, Fehlings DL. Impact of co-morbidities on the health related quality of life of children with severe non-ambulatory cerebral palsy. 2007 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting. 

13. Narayanan UG, Weir S, Fehlings DL. The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD©) questionnaire: A manual & interpretation guide. 2007 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting. 

14. Narayanan UG, Weir S, Smith J, Fehlings DL: Impact of co-morbidities on the health related quality of life of children with severe non-ambulatory cerebral palsy. 2007 2nd Annual Bloorview Kids Rehab Research Institute Symposium. 

15. Hughes J, Weir S, Narayanan UG: Assessing the well-being of children with severe acquired brain injuries: A pilot study of the utility of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©). 2008 SickKids Summer Student Research Day. 

16. Hughes J, Weir S, Narayanan UG: Assessing the well-being of children with severe acquired brain injuries: A pilot study of the utility of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©). 2008 Bloorview Kids Rehab Summer Student Research Day. 

17. Narayanan UG, Weir S, Hughes J: Assessing the wellbeing of children with severe cerebral palsy: A comparison of the CPCHILD© questionnaire and other quality of life measures. 2008 3rd Annual Bloorview Kids Rehab Research Institute Symposium. 

18. Narayanan UG, DeOliveira L, Nicholas D, Weir S: Phenomenology of parental priorities in childhood disability: Concerns, needs and expectations of parents of children with severe non-ambulatory cerebral palsy. 2009 Quality of Life Conference.

19. Tucker CA, Gorton GE, Bevans K, Bagley AM, Bjornson K, Stout J, Narayanan UG: Preliminary confirmatory factor analysis & item level analysis of the CPCHILD© questionnaire. 2009 American Academy for Cerebral Palsy & Developmental Medicine (AACPDM) annual meeting.

20. Suhail A, Weir S, Narayanan UG: Does the CPCHILD© questionnaire measure quality of life of children with severe cerebral palsy? 2009 Bloorview Kids Rehab Summer Student Research Day.

21. Suhail A, Weir S, Narayanan UG: Does the CPCHILD© questionnaire measure quality of life of children with severe cerebral palsy? 2009 SickKids Summer Student Research Day.