Unni G.. Narayanan, The Hospital for Sick Children, Toronto, ON, Canada; Laurie Glader, Nationwide Children's Hospital, Columbus, OH, United States; Darcy Fehlings, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada; Keeirah H. Raguram, University of Waterloo School of Optometry and Vision Science, Markham, ON, Canada; Paul H. Gross, Cerebral Palsy Research Network, Greenville, SC, United States; Veronica Grad, The University of Western Ontario - Schulich School of Medicine & Dentistry, Toronto, ON, Canada
Associate Chief, Division of Complex Care Nationwide Children's Hospital Columbus, Ohio, United States
Background: Children with severe neurologic impairments such as non-ambulatory CP experience multiple comorbidities experience multiple comorbidities, which negatively impact their health-related quality of life (HRQL). These comorbidities impose a significant burden on their parents/caregivers and consume the attention of health care providers from multiple disciplines. This study describes the development and evaluation of the sensibility (face and content validity) of the CPCHECKList, a parent-reported list of the presence and severity of comorbidities for this population. Objective: To develop and evaluate the sensibility (face and content validity) of the CPCHECKList, a parent-reported list of the presence and severity of comorbidities for this population. Design/Methods: 22 comorbidities derived from an international prospective cohort study of children (n=740) with CP (GMFCS IV-V) were compiled into a checklist, with iterative input from a multidisciplinary group of healthcare professionals. For each listed comorbidity, parents are asked to report the presence & perceived severity of the comorbidity, and whether they are seeking to have it addressed. An international multidisciplinary group of 104 healthcare professionals (HCPs) completed a REDCap survey to evaluate the CPCHECKList for its structure, and content for relevance, completeness, redundancy, clinical and research utility. The revised CPCHECKList was completed and evaluated by parents of 93 children (1-19 yrs; mean:11.1yrs; GMFCS IV-V). Results: HCPs confirmed the sensibility of the CPCHECKList, with 79% “accepting (it) as is”. Based on HCP input, 16 items/response options were modified, and 3 items added. The revised CPCHECKList includes 25 comorbidities related to seizures, sleep, behaviour, vision, hearing, dental, pulmonary, gastro-intestinal, nutritional, bladder/bowel, abnormal movements (dystonia), musculoskeletal issues and pain; and use of 13 different health-technologies. >85% of parents agreed that the content was relevant, important, comprehensive, identified goals/concerns, and would facilitate decision-making.
Conclusion(s): The CPCHECKList is a comprehensive checklist of comorbidities and health-technologies relevant to children with non-ambulatory CP, and an efficient way for parents to communicate health concerns. The CPCHECKList is clinically useful and also provides a standardized way to capture comorbidities as important covariates for research.
