Web-Based Care Planning for Developmental Disabilities

(PROSPECT+ Trial)

Overseen By Mary A Khetani

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of Illinois at Chicago

Disqualifiers: Non-English speakers, No internet access, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

223 Participants Needed

Trial Summary

What is the purpose of this trial?

Infants and toddlers with developmental disabilities or delays use early intervention (EI) for rehabilitation services. Yet, poor quality of EI services is pervasive, particularly for racially and ethnically diverse and socially disadvantaged families. A key lever to improve EI quality is family-centered care, an evidence-based approach that is grounded in family engagement for shared decision-making. This project is motivated by the need to give families a smart and connected option for engaging in the design of the EI service plan for their child. This project upgrades and tests an evidence-based and innovative electronic solution that helps families to organize and share their priorities for change and ideas for goal attainment with professionals, so as to ensure fit of the service plan with their needs.

Do I need to stop my current medications to join the trial?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment PEM+ for developmental disabilities?

The research highlights the effectiveness of web-based systems and electronic consultations in improving healthcare for individuals with developmental disabilities. These systems enhance communication between healthcare providers and patients, leading to better care coordination and increased satisfaction with healthcare services. ^{1 2 3 4 5}

How does the PEM+ treatment differ from other treatments for developmental disabilities?

The PEM+ treatment is unique because it involves a web-based care planning system that enhances communication between parents and professionals, which is particularly beneficial for managing complex care needs in developmental disabilities. This approach is different from traditional treatments as it focuses on improving the coordination and accessibility of care through technology, rather than solely relying on medication or in-person consultations. ^{1 2 4 6 7}

Eligibility Criteria

This trial is for parents or legal guardians of children enrolled in early intervention (EI) services for over 3 months. Participants must be able to read, write, and speak English and have access to the internet and a telephone.

Inclusion Criteria

Have internet and telephone access

Identify as a parent/legal guardian of a child enrolled in EI for 3+ months

Exclusion Criteria

I cannot read, write, or speak English.

Do not have internet and phone access

Do not identify as a parent/legal guardian of a child enrolled in EI for 3+ months

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants use the PEM+ electronic solution to engage in the design of the EI service plan for their child

3 months

Ongoing virtual engagement

Follow-up

Participants are monitored for changes in caregiver perceptions of family-centered service quality and parent engagement

4 weeks

Treatment Details

Interventions

• PEM+

Trial Overview The trial is testing PEM+, an innovative web-based guide designed to help families engage in creating EI service plans that match their needs by sharing priorities and ideas with professionals.

Participant Groups

Group I: PEM+ Experimental Treatment 1 Intervention

Group II: Usual Care Active Control 1 Intervention

Who Is Running the Clinical Trial?

University of Illinois at Chicago

Lead Sponsor

Trials

653

Recruited

1,574,000+

Rocky Mountain Human Services

Collaborator

Trials

4

Recruited

750+

References

1. United States pubmed.ncbi.nlm.nih.gov

Multispecialty telephone and e-mail consultation for patients with developmental disabilities in rural California. [2015]

2. England pubmed.ncbi.nlm.nih.gov

A web-based communication system for integrated care in cerebral palsy: experienced contribution to parent-professional communication. [2023]

3. United States pubmed.ncbi.nlm.nih.gov

A Community-Health System Intervention to Improve the Primary Healthcare of Adults With Down Syndrome Through Electronic Consultations. [2021]

4. England pubmed.ncbi.nlm.nih.gov

A web-based communication system for integrated care in cerebral palsy: design features, technical feasibility and usability. [2015]

5. United States pubmed.ncbi.nlm.nih.gov

Consumer evaluation of a disability care coordination organization. [2019]

6. England pubmed.ncbi.nlm.nih.gov

Determinants of use and non-use of a web-based communication system in cerebral palsy care: evaluating the association between professionals' system use and their a priori expectancies and background. [2021]

7. Canada pubmed.ncbi.nlm.nih.gov

An After-Hours Virtual Care Service for Children With Medical Complexity and New Medical Technology: Mixed Methods Feasibility Study. [2023]