Adeline E. Dorough
BOSTON — Although many dialysis care plans focus on biochemical markers and clinical indicators as measures of outcome, patients tend to prioritize well-being and lifestyle, according to a study presented at National Kidney Foundation Spring Clinical Meetings. In addition, the study found implementation of individualized care planning could improve the dialysis experience and better align provider and patient priorities.
Lead study author, Adeline E. Dorough, MPH, of the UNC Kidney Center spoke with Nephrology News & Issues about the study and its implications for clinical practice.
“What matters to patients? It’s a hard question. We learned they want to be treated like people, not just a number with a disease. We also learned that providers want to acknowledge humanity. They didn’t enter this field to check boxes or dismiss people. This isn’t novel information, but what do we do with it?” Dorough said. “In this qualitative study, patients and providers shared their perspective on those ideas. They described why and how it can feel challenging to align dialysis care with patient priorities; they provided examples of opportunities to improve. In response, we propose that care plans present a unique opportunity to individualize care. A modified, care planning approach could enhance both patient and provider experiences if used as a tool to learn about the patient as a whole person and elicit information that labs simply cannot provide. The goal is to engage in a conversation that results in shared decision-making and ultimately, person-centered care.”
Dorough and her colleagues enrolled 13 patients on hemodialysis and nine providers from two North Carolina dialysis clinics. From August to September 2018, an interviewer spoke with participants and assessed the conversations to identify themes and subthemes of patients vs. provider priorities.
Researchers identified the following five themes and subthemes:
- System: “I think that [labs are] blanket goals that become the patient goals because that’s how we are scored and reviewed. So of course, we are wanting to make those their goals because that’s how it reflects on us as caretakers,” a nurse said to the interviewer.
- Dual lives: “It’s not so much dialysis gets in the way, it’s the effects of dialysis. Because you never know, sometimes you may plan something, but then the next day you’re just not feeling well, so you may have to cancel your plans or re-arrange things in your schedule,” a patient said to the interviewer.
- Identity: “They have lost who they are in the grand scheme of things because [dialysis] is so time consuming,” a nurse said to the interviewer.
- Whole person: “If you think about it wholly, it is a depressing situation; but if you have people around you who care for you and they care about the situation, then it’s not a bad one,” a patient said to the interviewer.
- Individualized care: “The more [the care team] knows, the more the care plans are individually catered to each patient, because everybody’s different. Although the goals may be the same, [it] may be different how you attain those goals,” a patient said to the interviewer.
According to the study, this led researchers to determine a proposed person-center care planning approach to hemodialysis. This plan features preparation to educate patients and perform a team huddle, a group meeting to develop a care plan based on patient needs to align care priorities using shared decision-making, and a follow-up to communicate with patients and adjust the care plan as needed.
“Many [patients and providers felt] like they were checking task-oriented boxes or experiencing the weight of the system itself or experiencing some influence historical encounters,” Dorough said. “Of course, this wasn't with everyone, but we found it to be somewhat common within the folks we talked with. We wanted to figure out how we could work within this system to individualize care, which would align patients’ priorities with what they need from dialysis.”
Researchers concluded that carful care planning that also took into consideration the patient’s priorities, as well as participation in group discussions, could provide an improved dialysis experience for patients.
“[While] folks may feel boxed in by the system, there are ways to work within it to make patients feel more engaged in their care and individualize their care to meet their needs and priorities,” Dorough said. “Oftentimes it may feel unattainable or out of scope, but there are ways that you can embrace the conversation or elicit responses from patients to be able to match care to their needs, and the way that we're doing that is with care planning.” – by Scott Buzby and Kristine Houck, MA, ELS
Dorough A, et al. Poster 240. Presented at: National Kidney Foundation Spring Clinical Meetings; May 8-12, 2019; Boston.
Disclosures: This project was funded by the American Institutes for Research, with support from the Robert Wood Johnson Foundation, for a Patient-Centered Measurement Pilot. The authors report no relevant financial disclosures.