The right to self-determination can often get lost among patients with kidney disease.  The initial shock of having a chronic condition makes it an easy decision to place the clinical effort in the hands of the professionals. They, after all, should be making decisions about treatment regimens, drug dosing, nutrition, and watching for fluid overload.

But the managers of the End-Stage Renal Disease Program, namely, the Centers for Medicare & Medicaid Services, and other government agencies, are encouraging patients to take control their own health destiny. Take charge. Make decisions.

It started in 2008, when CMS pushed through a new set of requirements for the Conditions for Coverage, which dialysis clinics must follow to qualify for Medicare funding. The document had not been updated in over 30 years, but its new architects mandated that patients sit at the table when the dialysis team discussed their care plans.

More recent examples:

  • Patient satisfaction surveys. Dialysis providers need to verify to CMS that they issue the CAHPS In-Center Hemodialysis Survey and collect the data as part of the Quality Incentive Program. Beginning in 2016, CMS wants to move the surveying from a reporting measure to a clinical measure. That means the responses from patients will carry more weight.
  • The best of… . Starting in October, the agency is planning on adopting a rating system for dialysis care similar to one used to rank the quality of nursing homes and hospitals. While the methodology remains controversial among providers on how clinics are ranked, patients could use the system, based on data from the Dialysis Facility Compare website, to determine which clinics have the best outcomes.  To address consumers’ interest in health care quality, other rating systems are planned for long-term care hospitals, rehabilitation facilities, hospices, ambulatory surgical centers, certain cancer hospitals, and inpatient psychiatric facilities. During a CMS Medical Learning Network national provider call on July 10 detailing the initiative for ESRD, CMS official Elena Balovlenkov said, “Patients tell us they want to be able to identify good clinics” with a simple rating system without reviewing all the DFC data points.
  • Internet tools. Major providers have patient-friendly websites with information about recipes and staying in good health, but other Internet tools are available to help patients make decisions about their therapy. Medical Education Institute recently updated its “My Life, My Dialysis Choice” decision aid. It is a lifestyle guide designed to help people with chronic kidney disease see which type(s) of dialysis will best fit their lifestyle and health values (see more information in the Afterthoughts section on page 36).

Patients influence research, too

Patients are not only being handed more opportunities to control their health status, but they are having a greater say over clinical study design and implementation when they choose to share their health information. New Patient-Powered Research Networks (PPRNs) have the potential to more systematically address questions of genuine importance to patients, according to papers published by senior staff at the Patient-Centered Outcomes Research Institute (PCORI). The Institute has funded the development of 18 PPRNs as part of PCORnet, the National Patient-Centered Clinical Research Network. PCORnet seeks to collect the power of large amounts of health data, including from electronic health records and information reported by patients themselves, to enable researchers to draw from real-world clinical settings and conduct studies more quickly and cost-effectively. Patients will help set the rules under which such studies will be conducted. “For patients, their families, and caregivers, the era of big data provides new opportunities to generate and contribute data about themselves and to actively collaborate with researchers in prioritizing and answering clinical research questions,” noted Rachael Fleurence, PhD, director of PCORI’s CER Methods and Infrastructure Program.

Patients and the modality they choose

ESRD Program regulations make it mandatory that every individual who starts dialysis is given an unbiased education on modality options. A study funded by PCORI in December 2012 looks at what factors matter most when patients consider different forms of dialysis.  Once those factors are identified, the goal of the Empower Patients to Choose the Right Treatment for Advanced Kidney Diseasestudy is to develop a Web-based tool that helps other patients decide which modality option is right for them.

“All too often, patients choose a dialysis type without fully understanding how it will impact their lives,” says nephrologist Francesca Tentori, MD, MSCI, of the Arbor Research Collaborative for Health in Ann Arbor, Mich., which received the award to conduct the research. “If they make a choice that is not a good fit for their life and they don’t comply with the selected treatment, their health will suffer.

“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,” she said.

Tentori and colleagues 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 said. “When the 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.’”

The researchers have interviewed about 180 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.

The Web-based teaching tool will have several versions for patients of different ages, genders, and races, based on what emerges as important to each group, Tentori said.

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