CPCHECKlist^©

Comorbidities are common among children with severe cerebral palsy (CP) and have a negative impact on their health-related quality of life. Children with severe CP often require the services of healthcare professionals (HCPs) from multiple disciplines to address these comorbidities.  The Caregiver Priorities – Comorbidities & Health Evaluation Checklist (CPCHECKlist^©) is a comprehensive parent/caregiver-reported checklist that captures the presence and severity of different comorbidities, and identifies which of these health issues are of particular concern. The CPCHECKlist^© captures the parent/s’ perception of their child’s status with each health issue, and which of these they wish to have addressed.  

The CPCHECKlist^© has two parts. The first part captures the presence and severity of 25 different comorbidities; and the second part captures the use of/challenges with 13 different health technologies.  

The CPCHECKlist^© is to be completed by the patient or their primary caregiver if they are unable to complete it themselves and asks about a broad range of comorbid conditions common in those with cerebral palsy. The purpose of the CPCHECKlist^© is to provide patients and their caregivers with an opportunity to identify the areas of care that are most important to them. In turn, this will assist in medical decision-making, help clinicians focus their care, and help them understand a patient’s response to medical interventions. We wish to establish that the CPCHECKlist^© is sensible, reliable (reproducible), valid, and responsive (sensitive to change).

The CPCHECKlist^© is intended for parents/caregivers of children or young adults with severe cerebral palsy (CP) and CP-like conditions. It is completed by the parent or caregiver, typically prior to a clinical encounter.  

In summary: The CPCHECKlist^© may be used: 

1. By parents: to generate a list of health- and health technology-related priorities
2. By clinicians: to guide decision making directed towards the health concerns identified. 
3. By researchers: to quantify (and adjust for) the health status of a child with severe CP in a standardized, comprehensive way for comparative research. 

More details on the uses of the CPCHECKlist^© can be found here.

The content (items) of the CPCHECKlist^© was derived from a list of comorbidities captured in a prospective international cohort study of children with severe (non-ambulatory) CP and CP-like conditions, in which these were shown to be negatively correlated with HRQL, as measured by the CPCHILD questionnaire. The items were vetted by a multi-disciplinary group of clinicians who made modifications or additions to create the initial CPCHECKlist^©. This version was evaluated for its sensibility (face and content validity, feasibility and utility) through an international survey of health care professionals across multiple disciplines involved in the care of children and adults with severe CP. Additional modifications were made based on the recommendations made by survey respondents.  

The CPCHECKlist^© is currently undergoing sensibility evaluation by parents & caregivers of children with severe CP and CP-like conditions, the results of which might lead to additional alterations. 

The current version of the CPCHECKlist^© can be found here. Please note, this is not the final version of the CPCHECKlist^©. We will update this webpage when the final version becomes available.  

Please email cp.checklist@sickkids.ca or contact us for any further inquiries regarding the CPCHECKlist^©.  

Acknowledgements

This work has been supported by research funding from: