Intervention to Increase Parent-provider Communication During Referrals
Condition: Parent-Provider Communication
Study type: Interventional

Summary: 
      The overall goal of this three-year study is to adapt and test a brief, feasible intervention
      using a communication tool and brief parent coaching to increase the capability of parents of
      children and youth with special health care needs to exchange and use medical information in
      partnership with their child's physicians when their children require sub-specialty referral.
      We hypothesize that the use of tools to coordinate referrals between physicians and parents
      will facilitate increased communication between primary care physicians(PCPs) and
      specialists, and that parents trained in information exchange and care planning will
      experience increased self-efficacy in interacting with their child's physicians.

      There are two primary aims of the study. The first aim is to adapt a joint parent-provider
      referral communication and care planning intervention (i.e., the 'referral care plan') for
      use with ethnically diverse populations in an electronic communication environment, and
      optimize its usability in the practice setting. The second aim is to test the referral care
      plan in nine pediatric primary care and subspecialty practices in two states, using a stepped
      wedge cluster randomized trial, to evaluate its effect on communication, parent
      self-efficacy, and patient outcomes.
    

Detailed description: 
      One highly-promoted, evidence-based model for chronic illness service delivery for children
      is the Care Model for Child Health in the Medical Home. The Medical Home (MH) model has been
      promoted as way to improve quality while making care more efficient. Communication among
      members of the health care team is an essential part of the model, with sharing of care
      between providers preferred by families, PCPs and specialists. However, communication between
      referring and consulting physicians is frequently missing. Failure of communication can
      produce uncoordinated care, which may contribute to unmet family needs, duplication or
      omission of needed medical services, and medical errors.

      Data on effectiveness of specific MH interventions, especially in children, are scarce. A
      large intervention in the MH setting was tested using written care plans and use of forms as
      tools to promote communication with specialists. Results indicated decreases of 40 to 70% in
      parent reports of lost work/school time, ER visits, and hospital admissions. Additional
      studies produced decreased hospitalizations and emergency room use in children.

      Family-centered care (FCC), a Medical Home core component, has been conceptualized for
      measurement purposes as having four components: communication with health care providers,
      shared decision making, providing families with needed information, and self-care management
      and support. Interventions to improve FCC through parent-to-parent support groups and
      community-based support have produced increased parent confidence and problem-solving
      ability. Studies of asthma have shown that teaching primary care providers to take a
      family-centered approach to medication prescribing as part of an overall education protocol
      improves symptoms and decreases follow-up visits, and using a family coordinator to help
      physicians and parents interact more effectively is integral to improving asthma outcomes.

      Shared decision-making (SDM), an element of FCC and an approach favored by family advocacy
      groups to help parents achieve the greatest benefits for their children with special needs,
      is addressed by our proposed intervention. Merely providing information to patients and
      families is not sufficient; families must be able to express preferences, participate in
      dialogue, and make informed decisions as partners with physicians.

      The proposed project addresses the health care quality gaps outlined above by improving
      primary care-specialty-parent communication, family-centered care, and shared decision-making
      within the MH model. It also addresses knowledge gaps by examining the effectiveness of an
      important recommended component of the MH and investigating the relationship between the
      intervention and both process and outcome measures, in a "real-world" practice setting. If
      the aims of the project are achieved, we will have discovered a practical way to improve care
      that can be promoted to payers and policymakers.
    

Intervention name(s): Care plan and coaching
Intervention type(s): Behavioral
Intervention description(s): In the intervention group, primary care providers and parents complete their sections of the referral care plan. Parents and referred specialists receive a copy of the form. Parents receive a 5-10 minute brief intervention by phone consisting of education and coaching. The care plan is reviewed with parents to help them practice exchanging information with the specialist and encourage parents to contact their child's primary care provider with any further questions. At the specialist visit, specialists review and complete the care plan with the parent and return the plan to the referring primary care provider. Outcome data are collected from parents before and after the specialist visit.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: Parents; Primary Care Providers; Specialists; Children with Special Healthcare Needs; Referral; Health Outcomes; Self-Efficacy; Communication