When she was just 13, Zahraa Saab faced an unwelcome decision. To treat her chronic kidney disease after a transplant failed, she and her family had to decide between two less-than-ideal options.
To remove excess fluid, minerals, and waste from her bloodstream, Saab could either receive hemodialysis in a treatment center for five- to six-hour periods, three or more times weekly, or she could do peritoneal dialysis herself at home, with the help of her family.
Her doctor said that she would probably fare equally well on either treatment, so the choice was personal rather than medical. Saab chose peritoneal dialysis.
“I didn’t really have to think about it,” she recalls. “I didn’t want to be at the hospital. I wanted to be able to go to school. Home felt safe, and my parents were very, very supportive.”
Seven years later, as a 20-year-old college student, she remains on peritoneal dialysis, which she runs overnight, every night.
Addressing a Common Concern
Chronic kidney disease affects 17 percent of adults in the United States; more than 100,000 are diagnosed with kidney failure each year. Except for the fortunate minority who receive a kidney transplant that succeeds long term, treatment is usually one of two types of dialysis. In hemodialysis, a machine pumps blood out of the body, cleanses it, and then returns it to the body.
For the vast majority of patients, hemodialysis is performed in a dialysis center three times a week. In peritoneal dialysis, a patient introduces a cleansing fluid into his or her belly through an implanted soft plastic tube, the belly lining filters the wastes, and then the fluid is removed. Peritoneal dialysis must be performed either several times during the day or overnight.
Saab knew immediately that she wanted a home-based treatment, but many people find the decision more challenging.
Although peritoneal dialysis allows more freedom, it demands a rigorous commitment to self-care. Hemodialysis offers closer supervision and the security of a medical setting but depends on an unyielding schedule of appointments.
Francesca Tentori, MD, MS, discusses her project to develop a decision-aid tool for patients with kidney disease deciding which treatment type to choose.
“All too often, patients choose a dialysis type without fully understanding how it will impact their lives,” says nephrologist Francesca Tentori, MD, MS, of Arbor Research Collaborative for Health in Ann Arbor, Michigan. “If they make a choice that is not a good fit for their life and don’t comply with the selected treatment, their health will suffer.”
Even well-intentioned health professionals and educators can’t help much with the decision because there is a “knowledge gap” about patient-centered outcomes, Tentori says. “We really don’t know what factors are most important to which patients, and we don’t know how the different dialysis modalities may impact these factors.”
Tentori and colleagues have initiated a PCORI-funded study to fill in those blanks. They are conducting in-depth interviews with individuals on, or about to start, dialysis, who were recruited at clinics and through patient-advocacy organizations such as the National Kidney Foundation (NKF) and the American Association of Kidney Patients (AAKP).
“The enthusiasm of people wanting to participate was overwhelming,” Tentori says. “When NKF sent emails out to its members, we had more than 100 responses in 24 hours. What makes me most excited is that patients say how important the scope of our study is. But it’s sobering to hear them tell us, ‘No one has ever asked me about these things before.’”
We really don’t know what factors are most important to which patients, and we don’t know how the different dialysis modalities may impact these factors.
Francesca Tentori, MD, MS
The researchers have interviewed about 170 patients. After analyzing the responses, the team will develop a questionnaire to give to approximately 7,000 patients on hemodialysis or peritoneal dialysis to learn first-hand how treatment affects such diverse areas of life as work, travel, and relationships, and how it influences feelings such as isolation, dependence, and control.
Making Patients Partners from the Start
Patients have played a key role from the study’s first days. “When we were writing the proposal, we assembled a nine-member advisory panel made up of patients and family members,” Tentori says. The researchers strove for age, sex, occupational, and racial diversity in the panel.
Through meetings, conference calls, and lots of emails, the panel gave the researchers an inside view of which issues deserve attention, advised them on how to word questions, and helped train interviewers.
As the panel’s youngest member, Saab says she emphasizes the importance of family support for those considering home dialysis. “It’s a huge physical and mental thing, and there are no doctors or nurses to help. Having others at home willing to take care of you gives peace of mind,” she says.
She adds that serving on the advisory panel “has been a great experience, working with people who are going through the same thing… We have all these different perspectives, and everyone is so supportive.”
I’ve known a lot about chronic kidney disease since I was nine years old, but doing this has given me another whole side—how doctors view it.
Zahraa Saab
The flow of knowledge goes both ways. “I’ve known a lot about chronic kidney disease since I was nine years old, but doing this has given me another whole side—how doctors view it,” Saab says. The researchers expect many more people to learn from the project. Using the questionnaire information, they plan to create an interactive, web-based tool to help patients choose between options.
“We’ll have tailored versions of the tool for patients of different ages, genders, and races, based on what emerges as important to each group. Factors relevant to an 85-year-old will likely, on average, be different from those relevant to a 19-year-old,” Tentori says.
The researchers will compare the experiences of patients randomly assigned to either use or not use the tool. “The hope is that the patient decision aid will make the process less intense, more comfortable, and more effective,” Tentori says.
The tool will go public on the study website and through organizations like NKF to support, not replace, patient-professional collaboration, Tentori emphasizes. “In the end, it’s patients, their families, and their doctors who must make this decision together."
Posted: April 11, 2014
