Study: Some dialysis provider websites limit information on modality options for patients
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A review of patient-oriented websites from the two largest dialysis companies in the United States promote dialysis as the modality of choice with little mention of other options — including foregoing treatment.
“Studies across multiple contexts have shown well-designed material can help patients make higher quality kidney replacement therapy treatment decisions; however, little is known on the best way to aid patients in untangling potentially misconstrued health beliefs arising from educational websites of dialysis organizations which may also have a marketing component,” Rebecca Jane Allen, PhD, of the Center for IT Engagement (cITe) in Cincinnati, and colleague Fahad Saeed, MD, wrote.
Saeed is with the department of medicine and department of public health in the division of nephrology and the division of palliative care at the University of Rochester School of Medicine and Dentistry, Rochester.
For the study, the researchers used corpus linguistics, or computer-assisted language analysis, to find key words on modality options on the websites. The analysis included review of 226,968 words and took place from Nov. 12, 2020, to March 30, 2021. The words were then counted and linked to key concepts.
Modality choice
The researchers found both websites promoted dialysis as the main modality choice for patients with end-stage kidney disease.
“We found that one website did not present conservative management — treatment without dialysis — as even a potential option,” Allen and Saeed wrote. “Both sites mention transplantation, albeit at a rate at least several times lower than dialysis.
“It is important that patients understand all their treatment options,” they wrote.
Allen and Saeed also said the websites “provided little information on the importance of discussing life expectancy on dialysis while making kidney replacement therapy decisions, information that has been deemed critical to informed decision making. Notably, one of the websites did not appear to use any words related to life expectancy on dialysis.
“Discussion of prognosis should be done with a supportive clinician with psychosocial and spiritual care ... we do not suggest that a decision aid should provide life expectancy prognoses,” Allen and Saeed wrote. “However, understanding how long one may live is an important part of ethical, informed decision making; encouraging patients to raise the issue with their clinician of how much or even whether dialysis may prolong their lives may be essential to prevent dialysis decisional regret.”
Quality of life
Both websites also portrayed quality of life (QoL) on dialysis in a positive way.
“Our analysis found that the websites seemed to portray QoL on dialysis positively; QoL words — ‘work,’ ‘sex,’ and ‘travel’ — occurred many multiples more than side effects throughout both websites,” they wrote. “Even a potentially well-intended emphasis on positive QoL on dialysis may cause patients to construct misunderstandings. QoL is frequently a key concern of patients when making treatment decisions.”
In an accompanying editorial, Catherine R. Butler, MD, MA, and Suzanne Watnick, MD, with the division of nephrology, department of medicine, University of Washington, Seattle, suggest that palliative care options may be downplayed by providers because of the cost offering that option.
“End-of-life planning and palliative treatments are indispensable components of care for people with kidney failure, especially for the growing population of older adults with complex comorbid conditions who may have particularly limited prognoses,” they wrote. “However, provision of palliative care can be resource intensive. While some CMS value-based measures are intended to capture patient experience, there remains relatively little financial incentive for dialysis organizations to invest in palliative services,” they continued.
“... Further, Medicare benefits support either dialysis or hospice but not both concurrently (unless patients have a clear second life-limiting diagnosis),” they wrote.
Allen and Saeed suggested more research should be done to determine how dialysis provider materials influence patient decision making, as well as an ethical framework for how organizations should educate patients.
References:
Allen R, et al. Kidney Med. 2022;doi:10.1016/j.xkme.2022.100462.
Butler CR, et al. Kidney Med. 2022;doi:10.1016/j.xkme.2022.100480.
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