Objective: To capture input from children/adolescents with DCP and their caregivers on the content validity of the Movement Disorders–Childhood Rating Scale (MD-CRS).

Background: DCP is a neurological disorder that occurs in early childhood and often manifests with choreiform movements and dystonia. The MD-CRS is a clinician-reported outcome used to assess the intensity and effects on daily life of movement disorders in pediatric patients. Content validity is key to ensuring that the patient perspective is captured accurately in any trial using a clinical outcome assessment. Evidence is needed to demonstrate content validity of the MD-CRS as a potential tool for clinical trials in children/adolescents with DCP.

Method: This qualitative, non-interventional, cross-sectional study included 60-minute interviews with children and adolescents (aged 6-18 years) with DCP and caregivers of children with DCP. Participants were asked to describe the body regions and daily functions affected by DCP (MD-CRS Part II). Caregivers also reviewed Part I of the MD-CRS to evaluate the relevance of each item and usefulness of the corresponding response options. Descriptions of DCP were coded and mapped to the MD-CRS items and response options. Caregiver feedback on the MD-CRS Part I was analyzed using inductive content analysis.

Results: Eight patients with DCP and 12 caregivers were interviewed. All participants confirmed the body regions and activities listed in the MD-CRS were affected by DCP. Patients reported that involuntary movements affected the face (n=4), eyes (n=4), mouth (n=6), trunk (n=6), upper limbs (n=8), lower limbs (n=8), and neck (n=3), and caused challenges with all motor, oral/verbal, self-care, and video protocol activities. Caregivers in particular felt that observing attention/alertness level was relevant to assessing DCP. Most caregivers endorsed the response options for 12 of 15 items in the MD-CRS Part I and provided feedback on the others for clarification.

Conclusion: Participants confirmed that the body regions and activities listed in the MD-CRS were relevant to their experience with DCP, demonstrating the content validity of the existing tool as a clinically meaningful assessment for use in clinical trials in children/adolescents with DCP.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/qualitative-interviews-with-children-adolescents-with-dyskinetic-cerebral-palsy-dcp-and-their-caregivers/