Empowering People with COPD to Better Manage Their Symptoms
As I talked with an elderly patient struggling with chronic obstructive pulmonary disease (COPD), she recounted having been startled awake a few days earlier. Her daughter was bending over her bed close to her face, making sure she hadn’t stopped breathing. This wasn’t the first time it had happened. The adult daughter, fretting over her mother’s long-term COPD, was living in constant fear about what to do if her mother was to suddenly stop breathing.
Stories like this are why I am leading a PCORI-funded project studying how we can improve care for patients with COPD.
Six percent of American adults have COPD, which is marked by episodes of breathlessness, frequent coughing, wheezing, and tightness in the chest. And the disease isn’t just prevalent, it’s unrelenting. Around one-fifth of patients discharged from the hospital for COPD are readmitted within 30 days, creating an ongoing burden for patients, their families, and the healthcare system.
A Patient-Centered Approach to Care
Most hospitals use a 30-day transition plan that focuses on helping patients address issues that commonly arise after they leave the hospital. But these plans don’t provide guidance to help patients manage their long-term health, leaving them and caregivers like my patient’s daughter anxious and unsure of how to manage the condition back at home. The project I lead is investigating whether a longer-term, patient-centered program would slow the revolving door of hospital readmissions, improve patients’ quality of life, and reduce stress for caregivers.
Our study enrolled 240 people hospitalized with COPD. Half were randomly assigned to receive, with their caregivers when available, a three-month treatment plan that we developed in consultation with COPD patients, caregivers, clinicians, and social workers. The program focuses on outcomes that patients told us matter most, such as shortness of breath, being able to climb stairs, and being able to complete other day-to-day activities. The other half of the patients received hospitals’ usual 30-day discharge support.
Arming People with Tools and Knowledge to Manage Care
Patients with COPD have periods when they feel they can’t breathe. It’s a very scary experience that often leads them to call 911 and visit the emergency room. But there’s quite a bit of evidence that helping COPD patients self-manage symptoms can make a difference in their lives.
When a person comes to the hospital because of COPD, we connect them right away with a nurse who helps with things such as teaching them how to use their inhalers or checking whether they need oxygen at home. If patients do need oxygen, the nurse makes sure they know how to use the device and confirms that they can transport themselves to the doctor. Patients can’t cook near an open flame while receiving oxygen, so the nurse might work with them to make changes to their daily lives to accommodate these restrictions. Once the patient leaves the hospital, the nurse makes home visits or phone calls and continues to work with them for three months.
We work with patients and caregivers on identifying early signs that something is wrong and knowing what to do about it. The more you know, the less anxious you get. This knowledge is important in reducing readmission rates and improving quality of life.
Our program is highly flexible and guided by a patient’s immediate needs and concerns. This can be especially important because our study’s participants tend to be from underprivileged areas. Say I’m a person who has no transportation, and I’m on oxygen. If I try to take a bus to get to the doctor, I’d run out of oxygen before I got to the appointment. We let patients know about services that they might qualify for, such as subsidized transportation. Because it takes time to identify and overcome these obstacles, we chose a 90-day treatment period instead of the typical 30-day intervention, which is the control arm of our study.
In short, we work with patients and caregivers on identifying early signs that something is wrong and knowing what to do about it. The more you know, the less anxious you get. This knowledge is important in reducing readmission rates and improving quality of life.
Positive Early Results
We’re finding that people who received our program have less need to come back to the hospital because of COPD, and we’re seeing meaningful improvements in patients’ quality of life. We are also finding that caregivers who completed our program feel more prepared. They know what to do—and just as importantly, what not to do—in providing care.
And Johns Hopkins Bayview Medical Center, where we conducted the study, was so excited about the program that it has continued offering it to patients, even though we finished our research activities more than a year ago. Other organizations have expressed interest in implementing our program. We hope it can become a blueprint for health systems nationally to improve the lives of patients with COPD.
There is a big gap in how our healthcare system currently manages people who have chronic conditions. This is not specific to COPD patients. Focusing on patient-centered care that empowers patients and their caregivers to manage their conditions—just like we did in this study—is key to reducing adverse effects and hospital visits in the future.
A Patient Partner's Perspective
Edna Shattuck, RN, a retired nurse with COPD, served as a patient partner on Hanan Aboumatar’s study and spoke with PCORI about the important role patients play in seeing that research provides useful information for people with COPD and their families. Sadly, she died shortly after we completed this blog post. We appreciate her contributions to this project and commitment to improving care for people with COPD. We are privileged to be able to share her story and send our sincere condolences to her family.
When I was diagnosed with COPD, I already knew I had it. After all, I’d been a nurse and a respiratory therapist caring for COPD patients for many years.
My symptoms came on slowly and then progressed to a point where I could no longer do the things I took for granted: sweeping leaves off my porch, carrying groceries up the stairs, and taking my dog for a walk. By then, I was getting worse by the day.
When my diagnosis was confirmed a decade ago, I left my job and focused on getting my life back. I joined the COPD Foundation as a patient advocate in 2008, finding an opportunity to make a difference for others with this disease.
A few years ago, the foundation asked me to speak with Hanan Aboumatar, MD, MPH, of Johns Hopkins University. Before I knew it, I became her patient partner and co-investigator on a PCORI-funded COPD study.
I was involved in the study’s development and execution. I helped create the patient and caregiver materials used in the study, start our patient- and family-partners group, and edit our quarterly newsletter.
With my professional background and work with the COPD Foundation, I thought I knew everything. But I learned so much from the other patients and caregivers. Showering used to be a real struggle for me, because I’d get short of breath from the steam. One of our partners told me they keep their shower and bathroom doors open. It’s a very simple thing that I do every day now.
There were so many little epiphanies like this during the study. And if I learned this much from the study, imagine how much someone without knowledge of COPD could learn.
The nurses in our study used a show-and-tell method with hospitalized patients. Patients could ask, “How does this device work? What can I do if I feel a symptom start to creep up?” That’s so much more effective than sending patients home with a stack of papers that they might not even read, let alone understand.
The study has been a wonderful experience for me. I’ve learned so much about research. I am now on the Board of Directors for the COPD Foundation. I’m also on the Board of Governors for the COPD Patient-Powered Research Network (PPRN), which is fostering critically needed research by forming a registry of individuals at risk or diagnosed with COPD who have agreed to share their health information and symptoms. The PPRN is part of PCORnet, the National Patient-Centered Clinical Research Network.
In all my work, we are constantly looking for more patients to get involved. There are so many people out there with COPD who have sharp minds and could help out very easily if they’d just take the chance.
The views expressed here are those of the author and not necessarily those of PCORI.