Results Summary
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Background
Adult patients and parents of children with a type of kidney disease called nephrotic syndrome (NS) have to make many decisions with their doctors about how to treat this long-term illness and how to manage its day-to-day symptoms. Little research evidence is available about how adult patients or parents of children with NS learn about their condition so they can participate in treatment decisions and self-care.
Project Purpose
The research team studied how adult patients and parents of children with NS and the doctors who treat them make decisions about managing NS. Researchers used what they learned to create a website to help people with NS and their doctors communicate and make decisions about treating and managing the symptoms of the condition.
Methods
Researchers held focus groups and individual interviews with 22 people with NS, 25 parents of children with NS, and 35 doctors and nurses who treat NS. The researchers asked what information would help patients and parents make decisions about managing NS. The researchers included doctors and patients from many parts of North America. This geographic diversity helped ensure that the researchers’ website would be useful to people in different places. The researchers used the results of these discussions to come up with a list of things that patients with NS need to know to make decisions about their health.
The researchers used the information they learned in the focus groups and interviews to make a website that could help patients and family caregivers make decisions with their doctors. The researchers then asked NS experts to make sure that the information on the website was correct. The researchers tested the website by sitting with patients, parents of patients, doctors, and nurses as they used the site, to see whether they could use it to help make decisions.
Findings
Patients and parents of patients said they wanted to find information that was relevant to their personal needs. They also said that learning about NS is an ongoing process. The information patients and parents most wanted was what it means to have NS, how to treat NS, and how to manage having NS throughout life.
Patients and parents wanted to receive information in small amounts from sources that they trusted. The researchers also found that people with NS and those who care for them felt distressed when that information was difficult to get.
The researchers found that doctors and nurses who treat NS believe that patients need to understand the condition and its treatments so that they can make good decisions.
The researchers also found that doctors faced several difficulties that made it hard to teach patients about NS, including: (1) doctors did not have much time during appointments; (2) NS is complicated to explain; (3) patients feel a lot of emotions when they learn they have NS, which can distract them from learning; and (4) patients and parents may have untrue beliefs about NS.
Limitations
The researchers interviewed patients, parents, doctors, and nurses who were available and interested in the study. The results of this study might not reflect the views of everyone who lives with or treats NS. In addition, researchers interviewed only people who spoke English. The findings may not be the same for people who do not speak English. Finally, during the interviews, the participants may not have correctly remembered their experiences with NS.
Conclusions
Knowing the challenges that people with NS, parents of children with NS, and clinicians who treat people with NS face helped the researchers create a website that may meet the needs of all three groups. The website may make it easier for doctors and patients to share information and make decisions about treating and managing NS.
Sharing the Results
The researchers gave presentations about the website at meetings about kidney research. The researchers have written several articles to send to journals.
Professional Abstract
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Project Purpose
Patient-centered care is challenging in patients with chronic diseases where complex decision needs unfold over time. People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills, and integrate their illness into daily life. However, little is known about the learning needs of adult patients and parents of children with NS. In addition, providers managing these complex patients must attempt to apply disease-specific evidence while considering the individual patient’s unique clinical and personal situation.
This project had two objectives: First, to develop a tool to facilitate shared learning decision making between patients living with NS and providers; and second, to understand decision-making processes surrounding NS management from patients, parents, and providers.
Study Design
This study was conducted in two phases using a sequential mixed-methods design. In the first phase, researchers conducted focus groups and individual interviews with patients, caregivers, and providers to ascertain decision-making needs. In the second phase, researchers created an online shared learning decision-making tool which the researchers tested with patients prior to site launch.
Participants, Interventions, Settings, and Outcomes
For patients (n=22) and parents (n=25), the study included those with a diagnosis of idiopathic/primary NS, focal segmental glomerulosclerosis (FSGS), minimal change disease (MCD), and membranous nephropathy (MN) in self or a minor dependent in the previous 6 months to <4 years. Enrolled providers (n=35) included internal medicine or pediatric nephrologists and advance practice nurses or physician assistants with primary responsibility for the medical management or education of children or adults with NS.
Interviews were conducted at healthcare campuses, nephrology practices, and a Nephrotic Syndrome Study Network investigator meeting in Baltimore, Maryland, that included clinicians from many nephrology practices. Pediatric and internal medicine practices and patients in divergent regions of North America were included to maximize the generalizability of the findings.
The outcome measures were the patient, parent, and provider assessments of the process of learning about, self-management in, and treatment decision making for NS.
Data Analysis
In the first phase of the study, transcripts from focus groups and individual interviews were uploaded into NVivo (v.10) for analysis. The coding framework was generated by the multisite leadership team, which included patients, caregivers, physicians, social workers, and health communication experts as well as researchers. The representative from the multisite leadership team also participated in analyzing and interpreting the results. In the second phase of the study, the research team developed a website based on the results from the first phase of the study. Researchers conducted user testing with patients, parent caregivers, and nephrologists. The content was validated by nephrologists, clinicians, nurses, and dietitians.
Pediatric and internal medicine practices and patients in divergent regions of North America was implemented were included to maximize the generalizability of the findings.
Findings
In the patient/parent focus groups, participants described an ongoing process of learning about a condition that was often poorly understood by the general public. This entailed “understanding the diagnosis and approach to treatment” as well as “learning to manage NS,” both of which required “getting the right information.” Hence, many participants highlighted the importance of individualized approaches where they received information specific to their unique clinical care and learning needs. Further, participants identified a need for short segments of accurate information from a reputable source. Patients and parents also described challenges with self-management and expressed distress over the disease when accurate, relevant information was not easily accessible.
Results of provider focus groups suggested that, when making treatment recommendations, providers considered the characteristics of various treatments, such as efficacy, side effects, and evaluation of risk versus benefit and took into account how these treatment options fit with an individual patient, parent, and/or child. An overarching theme in providers’ comments was the importance of patients’ and parents’ understanding of NS and its treatment to support the decision-making process. Factors that might interfere with understanding were, therefore, considered barriers or challenges to the decision-making process. From the providers’ perspective, time constraints and the complexity of trying to explain NS were common challenges that they experienced in supporting parents/patients in developing an understanding of NS. Providers described the emotional response to the diagnosis, preconceived ideas about NS and treatment, and patient/parent literacy/health literacy as potential barriers to patient/parent understanding about NS and participation in decision making.
The shared learning decision-support tool was developed using an iterative process that incorporated the findings from the formative focus groups as well as feedback from developmental testing. The tool was designed to provide education and support to people with NS and their families and open communication channels between the patient and their healthcare providers. The content is tailored based on information entered by the patient in their initial patient survey.
Limitations
A convenience sample of participants was recruited; therefore, their views may not reflect all perspectives and may not be generalizable to the larger population. Participants were English speakers, thus the learning needs of non-English speakers may not be captured. Although the research team recruited patients with a relatively new diagnosis of disease (within 4 years), recall bias may still be a concern.
Conclusions
Patients, parents, and providers recognize the challenges inherent in the journey from diagnosis to self-management of a chronic illness such as NS. Web-based tools developed with stakeholder involvement may improve the exchange of information and accelerate self-management capability.