Nobody truly knows what having kidney disease is like until you have had to deal with it yourself. We asked our patient co-investigators to tell us tips they learned along the way to help them deal with this disease.
This post is submitted by one of our patient co-investigators, Suzanne Ruff. Suzanne is one of the only people in her family without kidney disease, though she is a proud living kidney donor!
It was over 15 years ago now that I heard my mother’s laugh for the last time. It was a deep belly laugh; it was the last time I heard her voice, too. Death is like that . . Mom died of kidney disease a couple of days later. When people expressed their sympathy to us, almost everyone said the same thing: “Your mother was so much fun!”
She was fun despite heartache, illness, and kidney disease, saying “Life is like a show . . . it must go on! No one wants to hear my woes! You have to roll with the punches!” One of her nephrologists came to Mom’s Memorial service and said, “I don’t go to every patient’s memorial service, but your mother was special. She was in quite a bit of pain at the end of her life, but she was the toughest woman I ever met. I learned a lot from her. She always told me she tried to ‘roll with the punches’ and she always made me laugh.”
Mom was a teenager when her mother died of kidney disease, a genetic disease called polycystic kidney disease (PKD). Her two brothers and two sisters died of PKD. Today, both of my sisters battle PKD and one of them is having a very difficult time right now... it’s hard to even think to laugh. But, somehow today, I’m going to find a way to have a deep belly laugh.
Dale Singer is the Executive Director at the Renal Physicians Association (RPA) and a Stakeholder in the PREPARE NOW kidney study. She talks about her experiences working on the project and why it is so important.
It is one of our favorite days of the year! A day aimed at raising awareness of the importance of our kidneys.
What's the point?
This day helps to spread knowledge of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.
What are you doing to celebrate?
Visit the World Kidney Day website to read more information and view kidney related events worldwide!
"I think PREPARE NOW is a really exciting opportunity to change our health system for kidney disease care," says Teri Browne, a Co-Investigator on the PREPARE NOW study.
Teri has worked as a dialysis social worker for over 13 years and understands how overwhelming the kidney disease process can be for patients as they try to figure out what treatment would work best for them.
"PREPARE NOW offers us an innovative way to think about how we work with patients facing kidney disease and their families, and offering some options for them so that they can make the best informed decision about what care they would like."
It’s important to diagnose Chronic Kidney Disease (CKD) early, before too much tissue damage has occurred. Unfortunately, there are few warning signs of kidney disease within the early stages of CKD.
Once CKD has progressed, more symptoms may become apparent. These include:
This blog post was submitted by: Brian Bankes, PREPARE NOW Co-Investigator.
On October 30, 2017, I and several other PREPARE NOW team members were in attendance for the PCORI Third Annual Meeting in Crystal Gateway Marriott, Arlington, Virginia with over 1,000 members of the healthcare community that convened for two and a half days of updates on how scientists, patients, caregivers, clinicians, payers, and others are working together to make health research more useful and relevant.
The theme this year, "Delivering Results, Informing Choices," and it set the tone for what was an exciting conference. I heard about the results from PCORI’s earliest-funded comparative clinical effectiveness (CER) studies and efforts to promote the use of those important findings in practice.
Being a PCORI Ambassador I was able to meet with other Ambassadors to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. I made some good friends from all over the USA, Iowa, California, Pennsylvania, Maryland, and Utah.
The gentleman sitting next to me (Bruce) is from Iowa and we became close friends. We had meet in Baltimore for the ICCH & HARC Convention and we were glade to get back together at the PCORI Conference. We were like two peas in a pod. If you thought I could talk you need to meet Bruce. We had a blast together.
The Opening Plenary Session. address by current Joe V. Selby, MD, MPH PCORI Executive Director. The topic was “Access to Results That Matter” Summary of the topic. This session explored from the patient’s point of view and how we can produce a more-relevant evidence for patients and other healthcare stakeholders, and get it to them in more user-friendly formats.
The second session, we were introduced to a wonderful Keynote speaker.
Freddie White-Johnson, MPPA. I was inspired and touched by the words of Freddie White-Johnson, Founder and President Fannie Lou Hamer Cancer Foundation.
Wednesday’s morning Opening Session was the best. We were greeted by Alan Alda for the Breakfast Plenary, “Improving How We Talk to the Public about Science and Health." He spoke with passion and with great humor about the need to improve communication among patients,
The last day Opening Plenary Session was Trent Haywood, Chief Medical Officer of the Blue Cross Blue Shield Association, and he closed out our last Plenary by humorously and elegantly reminding us that there are decisions and choices to be made in health care by patients, their clinicians, and their health plans. That we can only make them wisely if we are communicating and understanding each other clearly.
Other key note speakers were former US Representative Phil Gingrey of Georgia, an obstetrician-gynecologist who founded and led the GOP Doctors Caucus.
Harlan Krumholz, a PCORI Board of Governors member and Yale cardiologist and outcomes researcher, who urged us to remember that the core of PCORI work is challenging and the assumptions about what is accepted as the best course of treatment. He also emphasized the importance of having access to data, especially one’s own healthcare data—for personal decision making and, if desired, for research.
To close, this was my second Annual PCORI Meeting and it was the best. I was inspired by the key note speakers and was able to meet some wonderful people and make some new friends.
I look forward to attending the next PCORI Annual Meeting.
The American Society of Nephrology (ASN) hosted the Annual Kidney Week Meeting from Tuesday, October 31 - Sunday, November 5, at the Ernest N. Morial Convention Center in New Orleans. Drawing more than 13,000 kidney professionals from across the globe, this premier meeting provides a unique opportunity for kidney disease researchers and clinicians to exchange knowledge (via oral and poster presentations), and to nurture professional relationships. This year’s Kidney Week meeting also featured some new events!
On Friday afternoon, Principal Investigator, Dr. Boulware moderated a session on “Patient and Stakeholder Engagement in Advancing Renal Research and Improving Renal Outcomes” and PREPARE NOW team member Dr. Diamantidis moderated another session on “Context is King: Neighborhood and Social Networks as a Risk Factor for Chronic Disease.” The program committee selected Boulware and Diamantidis to moderate these sessions because of their reputation as thought leaders on these topics. During the Neighborhood and Chronic Disease session, Diamantidis highlighted an on-going investigation by our group on the role of psychosocial factors and chronic kidney disease outcomes within the Jackson Heart Study (JHS). She noted that the ASN community was very intrigued by the topic of social networks and chronic disease.
One of the exciting new events at this year’s Kidney Week was the Communities Lounge, which ASN introduced to foster engagement, collaboration and connection among ASN members and Kidney Week participants. We are looking forward to attending next year’s Kidney Week meeting, which will be held in San Diego around the same time!
We are thrilled that our study was recently featured in a PCORI blog in observance for National Kidney Month. Read the post below or see on the PCORI site here.
Chronic kidney disease is part of daily life for more than 20 million adults in the United States, according to the Centers for Disease Control and Prevention. Over time, this condition can develop into kidney failure, leaving patients to face a difficult choice among treatment options.
About 680,000 Americans receive treatment—one of two types of dialysis or kidney transplant—for kidney failure, according to the US Renal Data System. Patients often get diagnosed in an emergency department, and they must choose a treatment approach under highly stressful circumstances. One thing they don’t typically receive is support to make an informed decision.
In a PCORI-funded study, researchers at Duke University in North Carolina and Geisinger Health System in Pennsylvania are working to change that. They are testing a program that adds a kidney transition specialist to the healthcare team.
The specialist helps patients with decision making, coordinates care among various clinicians, and teaches patients about kidney disease and self-care. New tools help the specialists recognize patients at risk of kidney failure earlier, so they can help patients make informed treatment decisions before they find themselves in the emergency room. The research team will compare how patients do when they receive this patient-centered kidney transition care versus usual care without the specialist.
In observance of National Kidney Month, we spoke with nephrologist and co-principal investigator Jamie Green, MD, MS, of Geisinger Health System, and former clinical engineer Brian L. Bankes, a patient co-investigator who has kidney disease and works as a patient advocate for organizations including the National Kidney Foundation.
PCORI’s Kidney Disease FocusPCORI has funded 12 research projects, totaling $32.7 million, related to kidney disease. These include a project comparing the safety and effectiveness of drugs for extended treatment of blood clots in patients with kidney disease and one testing home-based versus clinic care for a Native American tribe with high rates of kidney disease. (See related story, Home-Based Care for Chronic Kidney Disease.)
For more information, see our fact sheet and a list of kidney disease projects.
PCORI and the National Kidney Foundation will take questions from the public during a Facebook Live event about the need for patient-centered research on kidney disease on March 22.
Why is a study about kidney care transitions so important?Jamie Green: When patients are diagnosed with kidney failure, it’s alarming. We’ve done focus groups with patients and their caregivers, and they all say they felt blindsided by the diagnosis, and the fact that dialysis could be in their future. Without a form of kidney replacement therapy—dialysis or a transplant—kidney failure causes death.
There’s a knowledge gap here: no one knows how best to support patients when they transition from kidney disease to kidney failure. We don’t do a good job of preparing patients because it’s hard to predict which patients will progress to kidney failure. We wait way too long to have the conversation.
Our goal is to provide the right support to patients so that they can be educated early and be ready for that transition, and make informed decisions about their treatment that are consistent with their values.
Brian Bankes: Back when I was diagnosed with kidney failure, 30 years ago, I went into the hospital with the assumption that I had a chest cold. I had so much congestion that I couldn’t breathe when I tried to lie down at night. Within hours, I was put on dialysis. The doctors said if I had fallen asleep, I would have drowned from having so much fluid in my lungs, all because my kidneys weren’t working.
It was a shock. And then, figuring out what kind of dialysis I would take—it was a lot to process. I didn’t have information on hand to help me make my decisions.
"There's a knowledge gap here: no one knows how best to support patients when they transition from kidney disease to kidney failure."
But can you predict which patients with kidney disease will experience kidney failure?
Jamie Green: In the study, we’re using a web-based tool that helps us predict a patient’s two-year risk of progressing to kidney failure based on several risk factors. This information allows us to target high-risk patients, so that we can test providing the highest-risk patients with support and giving doctors an opportunity to have early conversations with patients about treatment options.
Why is it better for patients to make treatment decisions early?
Jamie Green: It’s not only good from patients’ psychological perspective, but it also allows them to better prepare medically. For example, if you want to do hemodialysis, the type of dialysis that cleans the blood using a filter that acts as an artificial kidney, doctors would put in a fistula early. A fistula is a connection between an artery and a vein that lets the filter connect to the blood supply. If you start dialysis in an emergency situation, you would receive a catheter instead, which would increase your risk of infection and even death.
If we can identify patients who want a transplant instead of dialysis, then we can get them on the organ transplant list earlier. The earlier you get on the list, the better your chances of finding a matching donor. It can really save lives.
How have patients influenced the study?
Jamie Green: Our patients have been involved in all aspects of the project. For example, they helped us design our study brochure’s language and images. Recently, we were discussing how we want to refer to a patient’s loved one. We went to the patients and asked them. The patients all felt that caregiver is how they define their partner or spouse. So, we are using that term.
Brian Bankes: Kidney disease doesn’t affect just a single person. It affects the whole family. My wife takes care of me during home hemodialysis, which I do five times a week. She needs information and support, just like I do.
Jamie Green: Patients also felt that having contact with patients who are already on dialysis would be extremely helpful. So we are partnering with the National Kidney Foundation to provide peer mentors to the participants in our study.
Brian Bankes: I’ve learned a lot in the past 30 years about kidney disease and types of dialysis. That’s why when I found out I could help other patients, I jumped at the offer. I’ve had two transplants—one in 1987 that lasted 15 years, and one in 2005 that lasted for 4 1/2 years—and I’ve been on all three types of dialysis.
I enjoy attending the study work groups because as a patient, I get to voice my opinion. That’s a big reason for the study: to get patients more involved in their health care.
The PREPARE NOW study team, located throughout North America, have been hard at work developing a new patient-centered kidney care intervention for over a year. Because of the varied locations, most work is done over one-hour conference calls for many of the workgroups. Today though, many of the members convened in Durham, North Carolina - most of them meeting in person for the first time. This session was a way for the members to come together to see the progress that has been done so far, as well as discuss the roadmap for the future of the study.
In the long term, the findings in this study will provide important information on how to improve the health and well being of patients as they transition from chronic kidney disease to kidney failure. The intervention is scheduled to launch this June.