Patients with Parkinson’s Disease Often Lost to Follow-Up Care
March 1, 2023 5 minutes read
By Melinda Young
Telehealth visits can improve continuity of care, quality of life, and overall health for patients with Parkinson’s disease, recent research shows.1
Although Parkinson’s affects 1.2 million people in the United States, there is little research on people in later stages of the disease, says Jori E. Fleisher, MD, MSCE, FAAN, lead study author, associate professor, and the Leslie Nan Burridge Endowed faculty scholar in the Parkinson’s disease research division of movement disorders at Rush University Medical Center.
“These patients are lost to follow-up, which means the person earlier in disease will see a doctor every three months or six months, but then there might be visits when they don’t show up, or visits that are cancelled,” Fleisher says. “They’re lost to regularly scheduled follow-ups.”
Patients with advanced symptoms and disease also are less likely to enroll in research studies. “There’s a misconception that either those individuals have died or they’re receiving care, but they’re underrepresented in research or clinical care,” Fleisher notes. “We wanted to test a proof of concept to see if it was possible to look through medical records of people being seen for Parkinson’s and identify those individuals who had later stage disease and were homebound, based on Medicare criteria.”
The cases studied included patients with advanced Parkinson’s disease who had missed appointments or who had been lost to follow-up care.
Patients whose disease has progressed to the point that it affects their mobility find it difficult to visit their neurologist appointments or enroll in research studies. “Research trials tend to focus on earlier, more mobile patients, particularly when they are studying agents that can slow down progression of the disease,” Fleisher says. “We need to see them in a clinic to enroll them in research.”
Despite the intuitive reason why later-stage Parkinson’s disease patients are rarely enrolled in studies, some people interpret their lack of representation as a choice. Fleisher and colleagues built a model of home visits and brought research to patients. “We wanted to know if they would let us into their homes and stick with the study,” she says.
Home Visit Procedures
For the study home visits, a nurse and social worker would meet patients in person at the first visit, and then see them via telemedicine for the remaining visits. A fellowship-trained neurologist visited with patients via telemedicine as well.
“The nurse had a specific protocol to follow,” Fleisher explains. “First, the nurse did a home safety assessment, following a detailed protocol for walking around and looking at the bathroom, kitchen, hallways, and entry points to the home and bedrooms to check for fall risk and safety hazards.”
Nurses checked for fire hazards (e.g., a burner left on in the kitchen) and fall hazards (e.g., throw rugs). They also check for dents in walls, which suggest repeated falls.
“They looked for low-hanging fruit where we could make very concrete recommendations to improve safety,” Fleisher says.
After the home safety inspection, nurses performed medication reconciliation. They asked patients to show them all their medications and pills and show them how they were using them.
“They would look for errors in dosing and errors in medication frequency,” Fleisher notes. “They looked for medication that was supposed to have been stopped, but the patient was still taking them.”
The nurse gathered this information before speaking with the physician. They also asked the patient and care partner about symptoms, falls, cognitive symptoms, choking, and other information. “While the nurse is gathering all of this information, our social worker is interacting with the caregiver,” Fleisher says. “We’d have these activities going on in parallel.”
The social worker asked patients about services they received and services they may need. They asked if they felt safe at home, and they conducted a psychosocial needs assessment of the caregiver as well. After completing assessments, the nurse and social worker called Fleisher to report what they found and what was bothering the patient the most.
“Then, the nurse, social worker, and I would come up with a preliminary plan, and I would call in for a visit,” Fleisher says. “We brought with us a Wi-Fi-enabled hotspot, bringing internet to the patient. We brought an iPad because many patients are older adults who may not have reliable internet access or who don’t know what password to share with us.”
Patients also could receive home physical therapy, home occupational and speech therapy, and an immobile swallow study by companies that assess patients for choking or aspiration risk.
Often, patients would receive detailed recommendations from their physician on how to time their medication and nutrition. But if their pantry was empty, they could not follow the instructions. “The most impactful intervention for that patient is getting Meals on Wheels,” Fleisher says.
Sometimes, these visits might result in a hospice referral or a connection with a dentist who could visit the patient’s home. “We connected counselors with patients or caregivers — or both — for mental health issues,” she adds. “We may refer them to the local Area Agency on Aging for durable medical equipment.”
Investigators worked with the Parkinson’s Foundation for the study.
“They have an ongoing registry of [more than 10,000] people receiving Parkinson’s care at Centers of Excellence,” Fleisher says. “People complete a short battery of tests once a year, and they’re followed longitudinally. What we intended to do is compare our 65 late-stage, homebound people with individuals from the Parkinson’s Outcomes Project.”
Fleisher and colleagues hoped to find 65 people in later-stage disease who could act as a comparison group for the patients enrolled in their study. The comparison group would consist of patients who were similar in disease stage, gender, and age.
“What we found was we could find someone similar to them,” Fleisher notes. “That underscores this point of these patients being lost to follow-up, even with the best possible care.”
Early-stage patients were followed for years, but people in stages three through five were visited far less, Fleisher says.
Since there were not enough patients to compare the intervention group and control group head to head, Fleisher and colleagues compared 319 patients who were stages three or higher with at least one visit in the time frame to their group of 65 patients. They found the intervention group’s quality of life was unchanged, but the comparison group’s quality of life had worsened over the course of a year. The group receiving telemedicine and home visits improved significantly in the component of bodily discomfort.
The home visit population included members of an underrepresented minority population, so the positive results suggested better care access and research participation for this group as well.
“We found they wanted to be part of research,” Fleisher says. “There’s very little representation of minority participants, particularly African Americans, Latinx.”
REFERENCE
- Fleisher JE, Hess SP, Klostermann EC, et al. IN-HOME PD: The effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson’s disease. Parkinsonism Relat Disord 2022;102:68-76.
Telehealth visits can improve continuity of care, quality of life, and overall health for patients with Parkinson’s disease, recent research shows. Although Parkinson’s affects 1.2 million people in the United States, there is little research on people in later stages of the disease.
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