Leave. And Don’t Come Back.

Study indicates follow up care and support after stroke can help keep patients from going back to the hospital


Susan Rhoades was home recovering from spinal surgery when she suddenly realized she could not speak. Alarmed, she texted her son with the news and was rushed to the hospital where tests showed she’d had a stroke.

Survivor Susan Rhoades with her husband Terry and their granddaughter Claire Elizabeth.

Survivor Susan Rhoades with her husband Terry and their grandaughter Claire Elizabeth

The medical team investigating the cause of her stroke discovered another problem: She had a hole in her heart. “I thought, what on earth else could possibly go wrong?’” Rhoades recalled.

Instead, as it turns out, something went right in the days that followed. After she was home, she got a call from the hospital. It was an outpatient stroke care coordinator at the hospital, Sarah Day, a registered nurse, calling to help coordinate her recovery at home.

“Susan required a lot of follow-up,” Day said. “She needed speech therapy, a cardiology follow-up, plus neurology services for the stroke. She was put on several new medications, including a blood-thinning agent. She needed help coordinating all that as well as she and her husband caregiver needed support.”

Such support is at the core of an ongoing study trying to answer a difficult question for stroke patients: What can be done to manage their health for optimal independence and recovery and to prevent them from being readmitted to the hospital because of other conditions, complications, medications or other reasons?

Forty hospitals across NC are participating in the Comprehensive Post-Acute Stroke Services (COMPASS) Study funded by the Patient-Centered Outcomes Research Institute (PCORI). The study is comparing two groups of patients: those who experience the typical discharge process that does not include extensive follow-up and those who receive transitional care including rehab at home and proactive follow-up from a care team that includes help connecting the patient and caregiver with community health and human services support. Hospitals in the study create individualized care plans based on patients’ abilities and needs. Staff members call survivors within two days after they leave the hospital and again after 30 and 60 days. A nurse also collaborates with community organizations and services to help survivors and their caregivers get support.

For Rhoades, the approach helped her understand her condition and keep track of the many aspects of her ongoing care. “Sarah gave me information about strokes, encouraged me to exercise regularly and checked my blood pressure,” Rhoades said. “I think she even stopped by during my follow-up neurology office visit. She asked some questions to see if I was taking my blood pressure medicine. She was very kind and took her time talking with me and answered my questions.”

Bill Jarrett was the physician’s assistant in charge of the neurology clinic. He saw Rhoades within a week of her discharge and got her medications sorted out and made an appointment with a cardiologist. The stroke care team also helped schedule a heart test she was having challenges arranging.

Her first cardiologist said she would be on blood-thinning medication the rest of her life and that repairing the hole in her heart would require open-heart surgery. Rhoades was disturbed by that response. A friend recommended she see another cardiologist, and Day quickly set up that appointment.

“He reviewed the report and told me there was good news and bad news,” Rhoades said. “In addition to the hole, I also had an aneurysm near the hole. The other doctor never mentioned that.” The good news was that a less invasive procedure was available to correct both problems. “That sounded like a much better plan,” she said.

members of the Hugh Chatham Memorial Hospital Community Resource Network
Bill Jarrett (second row, far left), Sarah Day (second row, next to Bill) and Emily Parks (second row, center) are key members of the Hugh Chatham Memorial Hospital Community Resource Network in Elkin, NC.

The procedure was a success, and Rhoades was only in the hospital one night. At her six-month check-up, everything was fine, and she was thrilled that she wouldn’t need to be on medication for the rest of her life. “Without Sarah’s help, I probably would never have gotten the test scheduled and never would have gotten the hole and aneurysm fixed.”

Feeling confident in and supported by the health care team can mean greater peace of mind for survivors and caregivers as they navigate recovery.

“I have learned that, as a nurse, much of your job is advocating for your patient,” Sarah said. “When you are able to do that successfully and follow your patients and see their outcomes, knowing that you made a difference in their lives, it’s certainly a rewarding and fulfilling job.”

Rhoades’ husband, Terry, who took care of Susan when she got home, appreciated having reliable and helpful information only a phone call away. “The biggest thing about being a caregiver is knowing what they can and can’t do … and be ready to step in and take over if needed, just keeping an eye on them,” Terry said.

Lessons learned from the study

Compass director, Sylvia Coleman

Sylvia Coleman is the Director of Implementation for the study in North Carolina. She has led implementation of the program in 40 hospitals, and the study team is currently analyzing data to evaluate patient outcomes. Some hospitals have reported a decreased stroke readmission rate — and the only thing they’ve done differently is use the COMPASS Study transitional care model, Coleman says, “Lowering the readmission rate is a worthy outcome all by itself.” Other findings so far include:

  • Patients like to come back to the hospital they’re familiar with. “It’s important because patients get out and they’re easily overwhelmed,” she said. “If they’ve had a stroke, they’re best served by coming back to a neurology-based clinic.”
  • Working with a patient’s primary care provider is critical. “The transitional period is short term, but the primary care provider’s in there for the long haul. So, working with them and any other medical providers, whether it be home health that comes in initially, outpatient rehab, specialty pharmacy … everybody needs to be working together on behalf of the patient.”
  • Health care providers need to listen to what’s important to the patient. “Let’s face it, we ask patients to do a lot of hard things after a stroke – to change their diet, to exercise more, we’re putting them on expensive medications that may have side effects,” Coleman said. Helping patients resolve insecurities and feelings of uncertainty to find the internal motivation needed to change their behavior is key”, Coleman said.
  • Create a sharable care plan. The patient, caregivers, the primary care physician and anyone requiring a medical referral should have the plan, Coleman said. A shared care plan means the entire care team understands the priorities and avoids confusion.
  • Insurance matters. The care team needs to be strategic about what is affordable based on insurance coverage, Coleman said. This may mean working together to find a community-based exercise program, a pharmacy that helps with medication assistance programs or other support.
  • Have a community resource network. Meals on Wheels and other programs may have waiting lists or other barriers, but survivors may need them immediately. “In those cases, we work within our community resource network and figure out how we can break down barriers and get patients to where they need to be as quickly as possible,” Coleman said.

There’s a website that lets people search for their need — nutrition, transportation, exercise, senior centers — and see options in their county.

A hospital’s perspective on COMPASS

Stroke coordinator, Emily Parks

Hugh Chatham Hospital in Elkin, North Carolina, is among the hospitals in the study. Before joining in 2016, the discharge process was not getting the best results, according to stroke coordinator, Emily Parks, and others.

There was a readmission rate of 14%. Not ideal. “When I took this job in 2012, we focused on the acute phase of care, so we would follow them in the hospital,” Parks said. But once discharged, she said, they would wish them well and hope that the patient wouldn’t need to be readmitted.

Now, since the hospital is using the COMPASS principles for its stroke and TIA outpatient program, those readmission rates are down to just 2.5%, Parks said. “And that is huge for a small rural hospital,” she said. The COMPASS team is currently working to determine if these readmission rates have declined across other health systems.

Parks encourages survivors and family caregivers to participate in these types of studies if they have an opportunity — even if the word “study” feels a little scary.

“It makes a difference for them and the people coming behind them,” she said. “If they don’t help us out, we can’t figure out what works, and we can’t make changes. We can do everything that we can to try to make stroke care better, but we also have to have patients who are willing to work with us. We need their help. It’s a partnership.”

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.

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