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GoalKeeper: Intelligent Information Sharing for Children With Medical Complexity

Stanford University logo

Stanford University

Status

Completed

Conditions

Chronic Lung Disease
Congenital Metabolic Disorder
Cerebral Palsy
Gastrostomy
Congenital Heart Disease
Childhood Cancer

Treatments

Other: GoalKeeper
Other: Standard Care

Study type

Interventional

Funder types

Other
NIH

Identifiers

NCT03620071
1R01CA204585-01 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

This proposal addresses the major challenge of improving health outcomes for children with cancer and other complex conditions, for whom the effectiveness of outpatient care depends on care coordination across a diverse group of caregivers that includes parents, community support organizations and pediatric care providers. The investigators have developed GoalKeeper, a prototype system for supporting care coordination across multiple care providers. The primary aim of the clinical trial is to assess the potential for this new system, GoalKeeper, to improve meaningful use of goal-centered care plans in the care of children with cancer and other complex chronic conditions.

Full description

The overarching aim of the research is to improve care coordination and goal setting for children with medical complexity (CMC). Specific aims of the pilot clinical trail are as follows: (1) To assess the efficacy of GoalKeeper on goal-setting in the health care encounter. (2) To examine the roles of parent health literacy and parent activation in moderating the effect of the intervention.

Study Population: Stanford's Primary and Subspecialty Care Clinics at Stanford Children's Health will serve as the setting for study recruitment.

The pilot randomized controlled trial will enroll 60 parents of children with medical complexity and their health-care providers. Eligibility criteria for participants will be age 18 years or older, English-speaking, and (for parents) child<12 years old. Exclusion criteria are parent with known mental illness or neurocognitive impairment. A stepped wedge approach by provider will introduce families to GoalKeeper at different time points in the study. A pre-intervention period will occur at least 1 month before the trial start where clinical observations and baseline survey information will be obtained of each providers' practice.

Each family will be given training and 4-month access to the GoalKeeper application and participate in an exit interview at the end of study.

Enrollment

67 patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion criteria

  • Parent-child dyads and their medical provider
  • Parent and provider age 18 years or older
  • Parent English- or Spanish-speaking
  • Child > age 12 months and <12 years old

Exclusion criteria

  • Parent with known mental illness or neurocognitive impairment.

Trial design

Primary purpose

Supportive Care

Allocation

Randomized

Interventional model

Parallel Assignment

Masking

None (Open label)

67 participants in 2 patient groups

Intervention
Experimental group
Description:
Receipt of a novel mobile-health tool, GoalKeeper Plus Standard Care
Treatment:
Other: GoalKeeper
Other: Standard Care
Control
Experimental group
Description:
Standard Care
Treatment:
Other: Standard Care

Trial contacts and locations

1

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Data sourced from clinicaltrials.gov

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