Results Summary
What was the research about?
In kidney disease, the kidneys don’t work well to remove waste from the blood. Some people with kidney disease have end-stage kidney disease, or kidney failure. These patients have lost all or nearly all of their kidney function. Many patients with kidney failure receive dialysis, a treatment with a machine that cleans the blood. Most often, patients receive dialysis at a dialysis center three times each week.
A dialysis care team usually has kidney disease specialists and staff but no primary care providers. Adding primary care providers to the dialysis team might improve care. The research team wanted to learn whether adding a primary care doctor, a nurse coordinator, a pharmacist, and a community health worker to the dialysis team would improve the quality of life of patients with kidney failure. The team called this approach a patient-centered medical home for kidney disease, or PCMH-KD. The team looked at how patients’ quality of life changed with care from a PCMH-KD after 18 months.
What were the results?
Patients reported having better quality of life after receiving care from the PCMH-KD. After 18 months, patients had better mental health. They also felt that kidney disease affected their daily activities less. Patients’ physical health and symptoms improved in the first six months and then remained the same without further improvement.
Compared with before the study, more patients said they had a doctor they considered their personal doctor after receiving care from a PCMH-KD.
Who was in the study?
The study included 175 patients with kidney failure who received dialysis treatments at one of two dialysis centers in the Chicago area. The average age of the patients was 54. Of the patients in the study, 97 percent were African American or Hispanic. Patients also had other health problems: 82 percent had high blood pressure and 53 percent had diabetes.
What did the research team do?
The research team used a survey to ask patients about their quality of life when the study started. The team surveyed patients again after 6, 12, and 18 months of receiving care from a PCMH-KD. The survey asked about the patients’ symptoms and their physical and mental health. It asked patients how well they were able to perform daily activities with their disease. The survey also asked patients whether they had a personal doctor. The team looked at changes in patients’ responses to the survey over time.
What were the limits of the study?
The study didn’t assign patients by chance to receive either care from the PCMH-KD or regular care. Instead, the team looked at the same patients before and after receiving care from the PCMH-KD. Results from the study could be due to reasons other than receiving care from the PCMH-KD. The PCMH-KD was costly to deliver. As a result, the study took place at only two dialysis centers. Results may be different for other centers or in other places.
Future research could compare care received from the PCMH-KD with regular care at multiple dialysis centers. Future studies could explore ways to deliver care similar to the PCMH-KD at a lower cost.
How can people use the results?
Dialysis centers may want to consider adding primary care providers to the care team, like the PCMH-KD, to improve care for patients with kidney failure.
Professional Abstract
Objective
To design, implement, and evaluate the effectiveness of a patient-centered medical home (PCMH) care model for patients receiving chronic hemodialysis for end-stage renal disease
Study Design
Design Elements | Description |
---|---|
Design | Quasi-experimental study |
Population | 175 patients, ages 20–89, receiving hemodialysis at 2 sites |
Interventions/ Comparators |
Receiving dialysis care coordinated via a PCMH model |
Outcomes |
Primary: patient-reported quality of life, including physical health, mental health, burden of kidney disease, effects of kidney disease on daily life, and symptoms and problems of kidney disease Secondary: patient-reported primary care assessment, including identification of a primary care doctor, which is a measure of coordination of patient care |
Timeframe | 18-month follow-up for primary outcome |
This quasi-experimental trial without a control evaluated the effect of a PCMH care model on patient-reported outcomes in a cohort of patients receiving chronic hemodialysis for end-stage renal disease. Researchers developed the PCMH care model for kidney disease (PCMH-KD) and refined it using input received during discussion groups with patients, caregivers, and clinicians experienced in dialysis care. The study’s standard hemodialysis team included a nephrologist, a nurse, a social worker, and a dietitian. The PCMH-KD model added a primary care physician, a pharmacist, a nurse coordinator, and a health promoter to the team with the intent of providing more comprehensive and coordinated patient care.
The study included 175 patients at a university-affiliated or freestanding outpatient dialysis center. Of these patients, 60% reported at least two comorbidities including hypertension (82%) and diabetes (53%). The average patient age was 54, and 97% of patients were African American or Hispanic.
The research team collected patient-reported and clinical outcomes using structured interviews at baseline and at 6-month intervals for up to 18 months. Researchers made comparisons within patients over time, with baseline assessments serving as the control. In analyses, researchers adjusted for age, race, native language, hemodialysis site, education, marital status, and several medically related covariates, such as self-reported diabetes at baseline.
Results
Quality of life. After receiving care through the PCMH-KD model, patients reported improved quality of life in the domains of mental health and effects of kidney disease.
- Mental health status. Average patient scores for the mental-component summary subscale improved significantly from baseline to 12 months (p=0.01), and from baseline to 18 months (p=0.01).
- Effects of kidney disease on daily life. Patient scores for the effects of kidney disease on daily life subscales improved significantly from baseline to 6 (p=0.004), 12 (p<0.001), and 18 months (p=0.02).
- Physical health status and symptoms. Patient scores improved significantly after 6 months on the physical-component summary (p=0.002) and on the symptoms subscales (p=0.02). However, there was no further significant improvement in scores at 12 and 18 months.
- Disease burden. Patient scores for the disease burden subscale, which assesses interference of kidney disease in patients’ lives, did not improve from baseline to 18 months.
Identification of a primary care physician. After receiving care through the PCMH-KD model, the percentage of patients who reported that they had a physician they considered their personal doctor increased from 60% to 81%.
Limitations
Because the study took place at only two centers, the results may not be generalizable to all centers. The cost of setting up a PCMH-KD clinical team for kidney disease was prohibitive and limited the study to two dialysis centers, which makes the feasibility of implementing it more broadly questionable. Because the research team did not randomize participants to the intervention, the results observed in the study may not have been directly related to the PCMH model.
Conclusions and Relevance
This study demonstrated some benefits of coordinating care for chronic hemodialysis patients. Healthcare reorganization efforts designed to improve health care and outcomes for patients with complex chronic diseases may need to weigh these benefits against the costs of an expanded clinical team.
Future Research Needs
Future research could evaluate strategies to reduce the costs associated with the PCMH-KD, and could compare the PCMH-KD intervention with usual care at multiple diverse sites. Future research could also evaluate the PCMH-KD intervention as a means to improve care for patients with complex chronic diseases.
Final Research Report
View this project's final research report.
Journal Citations
Results of This Project
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.
In response to peer review, Hynes made changes including
- Providing additional detail about Patient and Stakeholder Engagement, and about Methods, especially related to the study design and missing data analyses
- Describing how the investigators measured treatment fidelity and reporting on results
- Revising statements in the Results and Conclusions to accurately reflect the strength of evidence produced by this study
- Adding more discussion of the potential for dissemination and implementation of study procedures and results
- Reducing the use of acronyms and other topic-specific, specialist terminology to make the report more readable to general scientists