Electronic Patient-reported Outcomes (e-PROs) in Early Intervention
Condition: Developmental Disability; Development Delay
MeSH terms: Developmental Disabilities
Study type: Interventional

Summary: 
      A major goal of early intervention (EI) is to employ a family-centered approach to helping
      children to optimally function at home and in the community. However, the effects of EI are
      poorly understood. The aims of this project are: 1) to test the feasibility, acceptability,
      and value of introducing novel electronic patient-reported outcome (e-PRO) measures in EI, to
      strengthen family-centered EI care; and 2) to obtain and pair these outcomes data with EI
      program data, to further determine the value of e-PRO data collection for examining links
      between EI service use and functional outcomes among families who are enrolled in a large,
      urban EI program.
    

Detailed description: 
      Approximately 5,800 infants and toddlers with developmental disabilities (e.g., cerebral
      palsy, Down syndrome, complex chronic conditions) and delays access Early Intervention
      Colorado (EI-CO) annually. A primary goal of EI-CO is to employ a family-centered care
      approach to help children optimally function at home and in the community. Hence, early
      intervention is a common source of rehabilitation (i.e., physical, occupational, speech and
      language therapy) for EI-CO eligible families.

      However, the effects of EI-CO are poorly understood. Numerous challenges exist with obtaining
      EI-CO outcomes data, including a paucity of validated and feasible functional outcome
      measures for use in EI outcomes reporting. These challenges have resulted in inadequate
      knowledge about EI service use and outcomes to guide service delivery. Despite these
      challenges, recent policy changes have resulted in EI-CO service providers being pressed to
      ensure high quality care with limited resources and evidence to guide their clinical
      decision-making about effective and efficient interventions. This proposal addresses the need
      to fill critical knowledge gaps about the adequacy of EI services with an eye toward
      improving care quality.

      This study involves families who have/are receiving EI-CO services through Rocky Mountain
      Human Services (RMHS), the largest EI program in Denver Metro. The purpose of this study is
      to test the feasibility, acceptability, and value of collecting electronic patient-reported
      outcomes (e-PRO) data to engage families when their child is due for an annual evaluation of
      progress. To further demonstrate the value of e-PRO data collection, these data will be
      paired with program data to estimate the association between EI-CO service use and functional
      outcomes.
    

Intervention name(s): Young Children's Participation and Environment Measure (YC-PEM) electronic patient-reported outcome (e-PRO)
Intervention type(s): Behavioral
Intervention description(s): Participants were primary caregivers (n=149) recruited from a large, urban early intervention program. All caregivers were approached by early intervention staff the month prior to the child's annual evaluation of progress.
Each caregiver confirmed his or her eligibility online by verifying that they were at least 18 years old; could read, write, and speak English or Spanish; had internet access; and had a child between 0-3 years old who had received early intervention for at least 3 months.
Participants enrolled online and provided consent, signed a HIPAA authorization for service record release, and then proceeded to completing a demographic questionnaire and YC-PEM e-PRO to receive an online report of their responses to share with their child's EI team.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: patient-reported outcome; electronic; participation; early intervention