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Guided Care

Q: Please explain the concept of Guided Care. How does it differ from traditional care and why is it important?

A: Guided Care is a model of proactive, comprehensive health care provided by physician-nurse teams for patients with several chronic conditions. It was designed to improve the quality of life and quality of care for complex patients, as well as the efficiency of their treatment. In Guided Care, a registered nurse, who is based in a primary care office, works closely with 3-4 physicians and health information technology to provide state-of-the-art care for 50-60 chronically ill patients.

Guided Care was developed by an interdisciplinary team of health care professionals at Johns Hopkins University in 2002. In creating the Guided Care model, the group infused the most current evidence-based guidelines for managing chronic conditions and the most effective principles from case management, disease management, self-management, transitional care, geriatric evaluation, and caregiver support models into primary care. Guided Care integrates these successful innovations with primary care to make evidence-based, state-of-the-art chronic care available continuously from professionals the patient trusts.

Q: What is the role of the Guided Care nurse?

A: The Guided Care nurse uses an electronic health record and works closely with the patient, their family, and the primary care physician. The nurse is responsible for the following clinical processes:

  • Conduct a comprehensive, in-home assessment of each patient.
  • Create an evidence-based comprehensive “Care Guide” (a tool for providers that summarizes the patient’s health, care providers, and family members) and “Action Plan” (a patient-friendly version of the Care Guide).
  • Monitor the patient’s conditions monthly.
  • Promote chronic disease self-management by patients.
  • Coordinate the efforts of all the patient’s health care providers.
  • Smooth the patient’s transitions between sites and providers of care.
  • Assess, educate, and support the patient’s family caregiver.
  • Facilitate access to community resources.

The Guided Care nurse is available to the patient and family by cell phone for unscheduled emerging issues and questions.

Q: In what types of settings has the intervention been implemented so far?

A: We recently concluded a multi-site, randomized controlled trial of Guided Care involving 49 physicians, 904 older patients and 308 family members in eight primary care practices in the Baltimore-Washington, DC area. The three-year study was funded by a public-private partnership of the Agency for Healthcare Research and Quality, the National Institute on Aging, the John A. Hartford Foundation, and the Jacob and Valeria Langeloth Foundation. Two of the managed care organizations that participated in the trial continue to provide Guided Care, and both are considering a further expansion. Other insurers and primary care practices have also begun to express an interest in adopting Guided Care.

Q: How does Guided Care contribute to “caregiver quality of life” and “improved quality of care”?

A: The Guided Care Program for Families and Friends (GCPFF) is one component of Guided Care. In the trial, the Guided Care nurse managed the following for families of their patients:

  • An initial one-on-one caregiver “assessment”; a meeting between the nurse and patient’s family caregiver.
  • Education and referral of the caregiver to community resources.
  • Ongoing caregiver “coaching” and support.
  • Six 90-minute group caregiver workshop sessions.
  • Ongoing monthly support groups.

The GCPFF includes an array of supportive processes that the Guided Care nurse makes available to caregivers. Because family caregivers are so different in their experiences and needs, they use different sets of services. Therefore, it is difficult to know what processes were most helpful. Anecdotal comments from families and nurses suggest that families’ ready and direct access to nurses so that they can pose emerging questions and troubleshoot concerns is a tremendous comfort to them. The fact that the nurses’ job explicitly includes both patients and their involved families, and that nurses roles’ include care coordination may simplify some of the challenges of chronic care for patients’ family members. In fact, after 18 months in the trial, families of Guided Care patients judged patients’ quality of chronic illness care to be significantly better than did family members of patients in the control group. Among employed caregivers, we also observed a trend at 18 months toward greater work productivity (e.g., less distraction while at work) by Guided Care caregivers.

Q: What were the challenges you faced so far implementing the intervention?

A: Probably the biggest challenge for us in implementing the Guided Care Program for Families and Friends in the trial was the great diversity of patients and their family caregivers. The GCPFF was designed to include the broad range of patients and families who are treated in primary care practices all over the country. While some patients had conditions that precipitate heavy family involvement (e.g., Alzheimer’s disease; stroke), the specific (and multiple) conditions being managed by patients and their families varied widely, as did their needs and issues, and consequently the advice, information, and services provided by the Guided Care nurse. Recognizing the varied circumstances of patients and families, we focused on designing a flexible set of uniformly available services that could be accessed as needed by patients’ families. Rather than relying on a single, uniform set of services, the Guided Care model allows Guided Care nurses to apportion their time and effort wisely to meet the multiple needs of their panels of patients and caregivers.

Q: How does Guided Care enhance professionals’ work with family caregivers?

A: Primary care physicians say that they have developed closer relationships with patients and their family caregivers through the Guided Care nurse. Physicians say the nurse is their “eyes and ears outside their office” and “their hand in the patient’s home.”

Q: In a short statement, what is the “bottom line” message this intervention offers to health care professionals’

A: Our research to date indicates that Guided Care improves the quality of chronic illness care for a particularly challenging patient population. We have found that it also improves physicians’ satisfaction with chronic care, and preliminary evidence suggests that it reduces overall health care costs. Guided Care is a well-defined model of care that primary care practices can fully implement in six-to-nine months. Implementation involves hiring a registered nurse who has completed an online course in Guided Care Nursing and integrating the nurse into the practice. Tools are available to help with adoption of the model.

Q: How can health care professionals access protocols and tools used in the program? Is technical assistance available and how can it be accessed?

A: Several forms of technical assistance are available to practices that wish to adopt Guided Care, including a detailed implementation manual (this contains many tools and lessons learned from the trial), an online course in Guided Care Nursing, an accredited online course for physicians and other practice leaders, and guidance in selecting health information technology. For details about this assistance, please visit https://www.ijhn-education.org/content/guided-care-nursing. For more information about Guided Care, please visit www.GuidedCare.org.