EXECUTIVE SUMMARY

The Care Coordination for Health Promotion and Activities in Parkinson’s Disease (CHAPS) intervention provides patients with self-care tools and care coordination from nurse care managers.

  • The program’s management model uses the four domains of medical, mental, physical function, and living environment.
  • Results of a randomized clinical trial showed better adherence to many indicators of care management.
  • CHAPS creates consistency in assessments and provides an individualized approach to patient care.

A care management intervention that focuses on coordinating care for people with Parkinson’s disease helped patients self-manage medication, follow up with specialists, and identify problems and topics important to patients.

The program included nurse care managers and self-care tools. It started with a task force of nurses, physicians, educators, and members of the Parkinson’s disease community, says Karen Connor, RN, PhD, MBA, health services researcher at the UCLA department of neurology.

The goal was to present stakeholders’ perceptions and study what affects patients. “They came to a consensus on 38 quality goals to reach,” Connor says.

The program included nurse care managers who attended orientation on the Care Coordination for Health Promotion and Activities in Parkinson’s Disease (CHAPS) intervention. Some care managers had experience caring for patients with Parkinson’s disease, and others had extensive care management experience.1

“Some nurses were brand new to these sites and ideas, and took more time to feel confident,” Connor notes.

CHAPS started with an organizing framework for topics to be addressed and managed, says Hilary Siebens, MD, principal with Siebens Patient Care Communication in Seal Beach, CA.

“There were gaps in communication and gaps in whole patient care,” Siebens explains. “This contributed to the fragmentation of care and care not being focused on the real issues that the patient and care partners were facing.”

Different Perspectives

CHAPS helps clinicians and care managers look at patients from different perspectives, making it more likely they will see the whole picture. “It covers all the areas that might be affecting the patient’s health,” Siebens says.

CHAPS drew its organizing framework from the Siebens Domain Management Model. Siebens developed it after years of working in internal medicine with a focus on geriatrics.

This model uses a framework of four domains in improving patient care:

  • Medical/surgical issues;
  • Mental status/emotions/coping;
  • Physical function;
  • Living environment.

“We looked at all the different problems, through these domains, that can occur with people with Parkinson’s disease,” Connor says.

Patient problems were divided into the four categories to simplify tasks for nurse care managers. “Nurses are overwhelmed with doing so many things, so if you have buckets to concentrate on, it helps,” she explains.

For example, if care managers learn a patient struggles to buy enough food or pay the electric bill, these issues would be put into the living environment bucket. Fall risk is placed in the physical function bucket, and difficulty with swallowing or gastrointestinal issues would be in the medical/surgical domain. Patients with depressive symptoms and challenges in coping with their disease symptoms would fall into the mental status bucket.

Notebooks Engage Patients

Patients keep a notebook about their needs. Nurse care managers place information sheets in the notebooks and review these with patients. The notebooks build the patients’ confidence in their self-care, and patients feel more engaged. The notebooks are an effective communication tool that patients also can share with other providers.

“One patient said, ‘I had to go to the ED, and in my notebook, there was a medications and assessment summary,’” Connor says. “The nurse in the ED said, ‘Oh my gosh, I’m so glad you have this.’”

The notebook helps patients adhere to goals and improve secondary outcomes. Some patients will decline it, but care managers can ask caregivers or family members would like it. “You never want to toss anything out the window,” Connor says. “Maybe their daughter or son might be interested in using it.”

Notebooks are a simple, concrete way to give patients some confidence in their self-care. They also give healthcare providers a quick look at priority health issues. (See story on the notebook self-care tool in this issue.)

“In our randomized clinical trial of the nurse-led intervention, we had better adherence to many of the 18 indicators that had to do with care management,” Connor says. “There was no increase in depressive symptoms in the intervention group, but there was an increase in depressive symptoms in the usual care group.”

Nurse care managers receive support through regular meeting with a Parkinson’s disease specialist. They also maintain evidence-based and empirical protocols for each of the patient’s problems identified in the assessment.

The assessment contains algorithms and a tracking tool. “Nurses found the CHAPS assessment was helpful,” Connor says. “They put in the patient’s answers and get a list of problems, activated by these algorithms.”

It creates consistency in assessments and provides an individualized approach to patient care. “Nurses say to patients, ‘Because of the way you answered these questions, here are the problems that came up, so let’s talk about them,’” Connor explains. “They ask, ‘Which one is more important to you? Is there one that’s important to you that’s not on that list?’”

Care managers and patients decide which issues to work on first. “Their function is getting worse, so let’s work on that problem,” Connor says. “We decide what to work on, and that individualizes the care.”

The goal is to develop a holistic picture of the patient and deliver care suggested by that picture. “It’s not prescriptive,” she says. “When you do care management, you’re not telling the person what to do.”

Care managers keep in mind the patient is in control. Their role is to engage patients in designing their own care, guided by the nurse’s expertise. The care managers follow the physician’s treatment plan.

Huddles Are Crucial

“One more component of CHAPS, which is critical, is the routine clinical huddles at least monthly between the nurse care managers and the neurologist or Parkinson’s specialist,” Siebens says. “Problem-solving between them can occur on specific issues that arise.” Therefore, care managers might want to bring this project to the attention of Parkinson’s disease specialists/neurologists with whom they work.

This care management approach has worked for other populations, such as people with dementia, but it is particularly useful in managing people with neurological degenerative disease like Parkinson’s disease, Connor notes. For example, CHAPS includes a problem/topic intervention protocol that lists the nurse care manager’s steps in one column, and examples of questions and actions in another column.2

Here are sample items under mediations:

• Assess further:

- What is your routine for taking medications?

- How do you remember to take your medications? (alarm, watch, clock)

- NOTE: Compare to electronic medical record.

• Provide information:

- Teach the importance of a medication routine (e.g., put dose next to toothbrush). “Same time every time.”

- Recommend taking medications when “on.”

- Use notebook to provide information.

For a clinical trial, there has to be an endpoint to the intervention, but in the real world, the care management may continue indefinitely.

Follow-up is important in the beginning of the intervention, Connor says. After meeting with patients, giving them a notebook, and showing them how to use it, the care manager and patients can decide together when they would next meet. Follow-ups could be set at six months, with a reassessment performed annually. The reassessment is an abbreviated version of the initial assessment.

“You don’t have to ask every single thing,” Connor says. “You summarize and go over it, looking at the person holistically.”

Care managers expect it might take several phone calls to reach patients for a follow-up. The calls should be kept as brief as the patient needs.

“Let patients work with you to decide how this works best,” she says. “Some people may need two or three phone calls for 15 minutes every week or month. Some people will have a good understanding of their disease.”

With long-term degenerative diseases, the patient’s medical condition does not change rapidly. This is why a holistic approach is helpful.

“Care management is proactive, long-term, and it has the self-management tool, so it could be you’re only contacting the person once or twice a year,” Connor adds.

REFERENCES

  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.
  2. Connor KI, Siebens HC, Mittman BS, et al. Quality and extent of implementation of a nurse-led care management intervention: Care coordination for health promotion and activities in Parkinson’s disease (CHAPS). BMC Health Serv Res 2020;20:732.