Validity Data for the Developmental Profile-4 in Individuals With Profound Intellectual and Multiple Disabilities and...

Area of Science:

• Neurodevelopmental assessment
• Pediatric neurology
• Disability studies

Background:

• Accurate neurodevelopmental assessments are crucial for individuals with profound intellectual and multiple disabilities (PIMD) and developmental and epileptic encephalopathy (DEE) in clinical care and research.
• Existing tools often lack the sensitivity to measure meaningful changes in this population.

Purpose of the Study:

• To evaluate the psychometric properties of the Developmental Profile, Fourth Edition (DP-4) in individuals with DEE and/or PIMD.
• To determine if the DP-4 is a valid measure for this population.

Main Methods:

• Caregivers of 219 individuals with DEE and/or PIMD completed the DP-4 as part of an online survey.
• Psychometric properties were analyzed using Rasch analysis, known-groups comparisons, and convergent validity assessments.
• Qualitative data were gathered through caregiver focus groups and interviews.

Main Results:

• The DP-4 demonstrated initial evidence of construct and convergent validity in this sample.
• Over 50% of participants scored at the floor of the DP-4, indicating very low neurodevelopmental functioning (age equivalencies 6-10 months).
• Caregivers found some DP-4 components relevant but also identified potential threats to content validity.

Conclusions:

• The DP-4 may serve as a valid neurodevelopmental assessment tool for individuals with PIMD and/or DEE in clinical settings and trials.
• Additional research is required to fully establish its validity and evaluate its responsiveness to change over time.