A stroke survivor in the US is helping co-ordinate a study that could change how post-stroke care is delivered in the years ahead.
Barry Jackson is Patient Co-Principle Investigator on the C3FIT study, which aims to determine whether home-based care could be as effective, or more effective, than outpatient care.
Stroke is the fifth leading cause of death and the leading cause of disability in the US.
Inpatient and outpatient treatment can improve recovery and reduce the risk of recurrent stroke.
“I had a stroke 10 years ago and it affected everything on the right side.
“I spent a lot of time working at being able to walk and talk again.
“There are still some residual effects. My speech is affected, my hand doesn’t have the fine motor skills it had before.
“During my recovery, I noticed that the people at inpatient therapy, didn’t come back to outpatient therapy.
“Maybe they didn’t have anybody to drive them if they lived far away, whatever it could be.
“That bothered me because if they didn’t have the kind of help that I did, they would struggle to get back at least some functionality. So I kept that in the back of my mind.”
Jackson met C3Fit study lead Dr Kenneth Gaines while volunteering on a committee for the American Stroke Association.
After meeting up for lunch during a trip to Memphis shortly afterwards, Jackson was invited to help out.
“My role is to help with engagement. We have a patient steering committee which meets regularly and talks about ways that we can improve it from a patient perspective.
“Dr Gaines and I have been working on it for several years now.”
A total of 18 hospitals offering comprehensive stroke care have been assigned to two groups.
Stroke care in the first group includes a clinic visit one month post-discharge as well as follow-up visits at the patient’s request.
Patients in the second group receive Integrated Stroke Practice Unit (ISPU) care.
This includes 12 monthly visits to patients in their home, rehabilitation or skilled nursing facility.
During these visits, staff can check how patients are recovering, ensure patients are taking their medicine correctly and guide them on making positive lifestyle changes that could help prevent another stroke.
“We’ve had a couple of hurdles with a pandemic going on. We’ve had to adjust,” Jackson said.
“There’s been some difficulty enrolling people and getting people into homes because of labour shortages. But also, people were kind of reticent with COVID. So we had to adapt.
“We had iPads and other things that we set up so that they could do it virtually.
“But now things are starting to recede, I think we’re going to get back to normal with home based visits.”
Patients will be asked to fill out quality of life surveys at three, six, 12 and 24 months after discharge.
Meanwhile, the research team with check health indications such as blood pressure, smoking status and cholesterol.
They will also ask about patients’ mental health and the impact of care on caregivers.
The team also wants to find out how often patients have another stroke, return to hospital or die.
The research is funded research institute PCORI, which aims to help patients decide on the best course of treatment for vasious conditions.
“It was set up under the Affordable Care Act (Obamacare) and it flew under the radar.
“The more that I’ve learned more about it, the more I’m amazed that nobody’s really talking about it.
“But I guess when it was being set up, everybody was focused on the insurance part, and whether states were going to get Medicaid.”
Jackson is proud to be involved in the study.
“It’s awesome. I knew at the back of my mind that care was a problem.
“I got great care in the outpatient facility. But I could walk to the facility or my wife could drive me.
“And I had insurance and a lot of support from my job. But many people didn’t have that and I wondered what else they could do.
“It was fortuitous that I met Dr Gaines, because I my interests were exactly aligned with his. So yes, I am really proud of the work that we’ve done so far.”
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