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NINDS CDE Notice of Copyright
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
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Please visit this website for more information about the instrument: CPCHILD©
 
The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©)The Hospital for Sick Children and Holland Bloorview Kids Rehabilitation Hospital
 
Questionnaire and all its versions are protected by copyright with all rights reserved to the CPCHILD© team. Users of the CPCHILD© shall not modify, abridge, or alter in any way shape or form the CPCHILD©, including but not limited to minor or major changes in content or format without the prior written agreement of the CPCHILD© team. Researchers interested in using the CPCHILD© shall not translate the questionnaire without the prior written agreement of the CPCHILD© team. Users shall not reproduce the CPCHILD© except for use in registered research investigations and shall in no event distribute copies of the questionnaire or the Manual to third parties by sale, rental, lease, lending, or any other means.
 
In order to keep track of how and where the CPCHILD© is being used, please send us a request by mail or e-mail if you would like to use the CPCHILD©.
 
Unni G. Narayanan
Child Health Evaluative Sciences Program The Hospital for Sick Children
555 University Avenue, S-107 Toronto, ONTARIO. Canada. M5G 1X8 unni.narayanan@sickkids.ca
OR
Shannon Weir
Child Health Evaluative Sciences Program
The Hospital for Sick Children
123 Edward Street, Suite 401, Rm.443
Toronto, ONTARIO. Canada. M5G 1E2
shannon.weir@sickkids.ca
Classification
Supplemental – Highly Recommended: Cerebral Palsy (CP)
Short Description of Instrument
The CPCHILD© measures caregivers’ perspectives on the health status, comfort, well being, functional abilities and ease of caregiving of children with severe developmental disabilities.
The CPCHILD© currently consists of 37 items distributed among six sections representing the following domains:
 
1.  Activities of daily living/personal care (nine items)
2.  Positioning, transferring and mobility (eight items)
3.  Comfort and emotions (nine items)
4.  Communication and social interaction (seven items)
5.  Health (three items)
6.  Overall quality of life (one item)
 
In Section 7, caregivers rate the importance of each of these items’ contribution to their child’s quality of life.
Comments/Special Instructions
For children with CP, GMFCS levels 4 and 5. Initially developed for caregivers of children with cerebral palsy and traumatic brain injury.
Scoring
Basic Scoring Procedure
Scores for each domain and for the total survey are standardized and range from 0 (worse) to 100 (best). They are outlined in the following table.
Stage Description
1 Raw Score for Item - Sum of base rating and modifier rating
2 Standardized Score for Item- Raw score for item divided by total possible score for item, times 100
3 Standardized Score for Domain- Average of standardized scores for all items in the domain
4 Standardized Score for Total Survey- Average of standardized scores for all items in the survey
Important Notes
1. The highest possible score for Comfort & Emotions items is 7, not 8 as it appears. It is assumed that if a caregiver selects 5 (none of the time), there can be no associated level of intensity, and they should select 3 in the modifier column. For the purposes of the scoring algorithm, however, a rating of 3 for intensity carries a value of 2. The 3 is provided solely to prevent confusion for respondents selecting 5 (none of the time).
2. Item 34 is scored from 0 to 5
Rationale/Justification
Disease specific. The CPCHILD is designed to be used with children who are more involved (GMFCS IV & V) and looks at the family/child dyad.
References
Sick Kids. CPCHILD™ Questionnaire Toronto, Ontario Canada: Sick Kids; 2016 [cited 2016 28 June]. Available from: http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html.
Narayanan UG, Fehlings D, Weir S, Knights S, Kiran S, Campbell K. Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Dev Med Child Neurol. 2006;48(10):804–812.
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