EXECUTIVE SUMMARY

A care coordination notebook provides a useful tool for patients, their caregivers, and providers.

  • Care coordinators and providers place information in the notebooks about how patients can improve self-care and learn more about the disease and symptoms.
  • The notebook uses the Siebens Domain Management Model’s four domains for improving patient care.
  • The notebook is presented in plain language, with a simple organizing structure.

A care management program gives patients a notebook with simple sections and easily accessible information about the patient’s health. It is an efficient way to help patients improve their care management.

The Care Coordination for Health Promotion and Activities in Parkinson’s Disease (CHAPS) intervention uses the Siebens Domain Management Model’s four domains for improving patient care, including medical/surgical issues, mental status/emotions/coping, physical function, and living environment.

The notebook incorporates those domains and framework, but it uses simple language — not technical language, says Hilary Siebens, MD, principal with Siebens Patient Care Communication in Seal Beach, CA.

Health literacy experts helped craft the notebook’s language. It is a three-ring binder in which patients and healthcare professionals can insert and remove information.

“The notebook has been researched in other projects, including for women with breast cancer, and this is the first project for which it is issued in Parkinson’s disease,” Siebens says. “The notebook has the same four buckets in plain English with a simple organizing structure. The feedback we got from nurses was this framework was user-friendly, patient-centered, and organized. That’s what care managers need.”

For example, the notebook’s sections include:

  • Section 1 (The Body): Health issues;
  • Section 2 (The Mind): Taking care of your mind and feelings;
  • Section 3 (Activities): What you do;
  • Section 4 (Surroundings): Where you live and work.1

Each section is divided into subcategories within that domain. For example, these are the subcategories under Surroundings:

  • Home;
  • Family and friends;
  • Caregivers;
  • Money concerns;
  • Community resources.1

Additional sections in the notebook are for important information, including phone numbers, business cards, lists of visits, and a section for the doctor.

Researchers studying CHAPS found participants said the notebook was helpful, informative, and useful as a tool for organizing information. They also reported liking the education sheets, medication list, section organization, and the doctor visit sheet the most. Of the one out of five participants who deferred review of the notebook, their primary reason was they did not have time for it.1

The notebook includes a plastic business card holder for patients to collect the cards they receive from their healthcare providers. “It’s so helpful,” Siebens says. “I used the notebook when I took care of my mother, who had dementia. It was valuable to me to have all the essential information in one place.”

Care managers can help patients personalize the notebook by including educational sheets based on what the patient wants to address. The program created educational sheets for each of 31 potential problems that are common to people with Parkinson’s disease.

The CHAPS program, with the notebook tool, provides a standardized approach to patient care. It could be applicable to patients with different diseases and conditions. “Self-care tools like the notebook really help care managers educate and help patients and their families,” Siebens says.

The notebook of the patient’s medical and other issues also is helpful to healthcare providers, especially in the emergency department (ED).

“A lot of people are using electronic systems, having health information on their phone and portals to electronic health records, which is all great,” Siebens says. “Some people like having a notebook to grab off the shelf and to take with them, quickly, to the ED.”

REFERENCE

  1. Connor KI, Siebens HC, Mittman BS, et al. Stakeholder perceptions of components of a Parkinson disease care management intervention, care coordination for health promotion and activities in Parkinson’s disease (CHAPS). BMC Neurol 2020;20:437.