Some dialysis provider websites limit information about modality options for patients


Disclosures: Allen and Saeed report no relevant financial information.


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A review of the patient-oriented websites of the two largest dialysis companies in the United States promote dialysis as the modality of choice with little mention of other options, including previous treatment.

“Studies in multiple settings have shown that well-designed equipment can help patients make better decisions about kidney replacement therapy; However, little is known about how best to help patients unravel potentially misinterpreted health beliefs stemming from dialysis organization educational websites which may also have a marketing component,” Rebecca Jane Allen, Ph.D., of the Center for IT Engagement (cITe) in Cincinnati, and colleague Fahad SaidMD, wrote.



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Saeed works in the Department of Medicine and the Department of Public Health in the Division of Nephrology and Division of Palliative Care at the School of Medicine and Dentistry at the University of Rochester, Rochester.

For the study, researchers used corpus linguistics, or computer-aided linguistic analysis, to find keywords about modality options on websites. The analysis included the review of 226,968 words and took place from November 12, 2020 to March 30, 2021. Words were then counted and linked to key concepts.

Choice of modality

The researchers found that both websites promoted dialysis as the primary modality choice for patients with end-stage kidney disease.

“We found that one website did not feature conservative management—treatment without dialysis—even as a potential option,” Allen and Saeed wrote. “Both sites mention transplantation, although at a rate at least several times lower than dialysis.

“It is important for patients to understand all of their treatment options,” they wrote.

Allen and Saeed also said the websites “provide little information about the importance of discussing life expectancy on dialysis when making decisions about kidney replacement therapy, information deemed essential 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 made with a supportive clinician with psychosocial and spiritual care…we are not suggesting that a decision aid should provide life expectancy prognoses,” Allen and Saeed wrote. . “However, understanding how long one can live is an important part of ethical and informed decision-making; Encouraging patients to raise the issue with their clinician of how much or even if dialysis can prolong their lives can be key to avoiding regret over the dialysis decision.

Quality of life

Both websites also described quality of life (QoL) on dialysis positively.

“Our analysis revealed that the websites appeared to portray quality of life on dialysis in a positive light; The quality of life words – ‘work’, ‘sex’ and ‘travel’ – occurred far more than the side effects on both websites,” they wrote. “Even a potentially well-intentioned emphasis on positive quality of life during dialysis can cause patients to build misunderstandings. Quality of life is often a top concern for patients when making treatment decisions.

In an accompanying editorial, Catherine R. Butler, MD, MA, and Suzanne Watnick, MD, with Division of Nephrology, Department of Medicine, University of Washington, Seattle, suggest that palliative care options may be minimized by providers due to the cost of this 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, providing palliative care can be resource intensive. While some value-based CMS metrics aim to capture the patient experience, there remains relatively little financial incentive for dialysis organizations to invest in palliative care,” they continued.

“…Additionally, Medicare benefits support either dialysis or hospice, but not both simultaneously (unless patients have a second, clear, life-limiting diagnosis),” they wrote. writing.

Allen and Saeed suggested that more research 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.