Dialysis Choices for ESRD Patients and the Caregivers

Dialysis modality preferences of patients with chronic kidney disease and their family caregivers are important and need to be quantified. Do patients prefer less time on dialysis or more time on dialysis? Do they prefer home modalities versus in-center modalities? What do the family caregivers prefer? These questions have not been asked or answered. A recent study by Morton et al published in the American Journal of Kidney Diseases takes on this very task. Corresponding author Dr. Rachael L. Morton (RM) from the Sydney School of Public Health, The University of Sydney, Australia, discusses this study with Dr. Tejas Desai (eAJKD), eAJKD blog advisory board member.

eAJKD: What did you know going into your study? How did that knowledge shape your study hypothesis and design?

RM: Our preliminary qualitative research, involving focus groups and interviews with pre-dialysis patients and caregivers, showed us there was strong support for home-based dialysis. We prioritized the factors important to patients and caregivers in making a dialysis choice, and the top 7 factors were included in the discrete choice survey. We also knew that some patients in the pre-dialysis period did not plan to pursue dialysis, instead choosing conservative non-dialytic care. This knowledge was important in the design of the choice survey, particularly the inclusion of an “opt-out,” or nondialysis alternative, amongst the treatment alternatives.

eAJKD: What surprised you in your findings? Did you anticipate a result that the study did not, or could not, confirm? If so, can you identify any reasons why the study could not validate your anticipations?

RM: We were surprised by the strength of preference for dialysis treatment that allowed patients and caregivers to travel for holiday or work/social obligations. We were surprised by the amount of survival time both patients and caregivers were willing to give up in order to have fewer restrictions on their travel, which highlighted to us the importance of “portable” dialysis options.

A preference for longer rather than shorter dialysis hours was not completely unexpected; however, this finding again reminded us that pre-dialysis patients without any prior experience of dialysis are willing to start out with a treatment that provides them with the greatest benefit. This may be a different situation for patients who are already established on dialysis, where increasing treatment hours can meet with resistance.

Some of the treatment characteristics did not achieve statistical significance (eg. treatment flexibility), which may have been a result of a small sample size or preference heterogeneity. Whereby some preferred a “fixed” dialysis schedule, others chose a more flexible schedule.

eAJKD: What should clinicians learn from this study? Do you think our practice patterns will change based on your findings/conclusions?

RM: There are three main points:

1. Prior to starting dialysis in a facility, pre-dialysis patients and pre-dialysis caregivers show a preference for managing dialysis at home if at all possible. Therefore, more support (i.e., home training and after hours backup) needs to be provided to enable patients and their families to put this preference into practice, and initiate and manage dialysis at home.

2. Travel for holidays or work/social obligations are highly valued by the pre-dialysis population. Initiatives that make travel while on dialysis easier or less expensive for patients may increase the dialysis patients’ quality of life, and satisfaction with the therapy.

3. Caregivers are unlikely to prefer conservative non-dialytic care over dialysis for their family members. Patients who wish not to dialyze may need the support of their medical team in open discussions with family members about non-dialytic treatment options.

In summary, we hope practice patterns will change based on our study.

eAJKD: What new questions emanating from your investigation require further investigations?

RM: We are currently replicating the discrete choice studies in other centers internationally, where the prevalence of home therapies is not as high. We see the need for further research to elicit preferences for different types of caregiver support in home dialysis, such as respite programs or dialysis holiday programs.  There is also a need to elicit treatment preferences for older patients (eg, >75 years of age) with advanced kidney disease.  In addition, our team would like to explore the reasons that nocturnal dialysis, either at home or in center, may be less preferred by patients and caregivers than daytime dialysis.

From a discrete choice methodological standpoint, there are many areas that deserve further investigation. First, there is little guidance on how qualitative research methods can identify and inform discrete choice survey characteristics. The selection of characteristics and their influence in primary discrete choice studies is often poorly documented, but critical to the face validity of the research. A separate paper that demonstrates how the nominal group technique, for example, can be used to prioritize discrete choice characteristics would be a helpful contribution to the literature. Second, methodological work that explores the use of an error components model and its ability to forecast market shares (such as the future shares of dialysis modality) would provide a novel contribution to the choice literature. Finally, we would like to pursue the development of a multi-criteria decision aid, which may be helpful for clinicians and patients making treatment decisions under uncertainty.

To view the article abstract or full-text (subscription required), please visit AJKD.org

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