Educational resources addressing factors that patients and families deem most important to their decisions regarding RRT could facilitate a RRT selection well-aligned with their personal values. In this study, patients with CKD and their families most frequently viewed information on how RRTs affect patients’ morbidity or mortality, autonomy, experiences with treatment delivery, symptoms, personal relationships, psychological well-being, and finances as important factors to address in educational resources informing RRT selection decisions. Family members additionally identified information on how RRTs affect patients’ psychological well-being and finances. Most findings were similar between African American and non-African American patients and families. However, African American patients and families more frequently identified the influence of RRTs on personal relationships and finances as important factors to address compared to non-African Americans.
To our knowledge, this is the first US study to explore ethnic/race differences in the types of information patients and their families feel should be included in educational resources to support RRT decisions. While prior studies have informed the development of educational resources for patients related to CKD care  and the transition to traditional dialysis therapies (i.e., hemodialysis and peritoneal dialysis) , they have not specifically focused on identifying key information that would help patients and families understand critical differences between a range of RRT modalities, including home hemodialysis or transplantation [3, 25]. They have not also sought to identify factors that might enhance the cultural relevance of materials for African Americans or other minority groups.
Our findings suggest that family members may broaden the range of considerations influencing RRT decisions beyond considerations commonly expressed by patients. Family members may provide both psychological and cognitive support during the decision-making process and are also likely to play significant caregiver roles (e.g., providing transportation to dialysis and medical appointments). Efforts to include information about factors deemed important to family members could not only help families better understand the health risks and benefits of various RRTs but may also help them set reasonable expectations regarding the logistical and psychological burden certain RRT choices may place on patients’ families.
Our findings also highlight the potential importance of tailoring educational resources to meet the needs of patients and their families based on their prior experiences with ESRD treatments. For instance, we found that patients with no experience on ESRD treatments expressed interest in a broader range of topics when compared to their counterparts who had prior experience with therapies. Patients with no prior experience with ESRD treatments may need extensive education on how ESRD and its treatments could impact multiple aspects of their lives, while patients with treatment experience may need more focused information about how treatment alternatives might change their treatment experiences. Notably, our participants’ group discussions may have influenced their final rankings of factors they felt should be important to include in educational materials. For instance, more participants rated “living longer” as important to discuss in educational materials during the first round of ranking compared to the second round of ranking. It is possible discussion of the importance of various factors pertaining to treatment experience may have encouraged our participants to consider more patient-centered aspects of treatment (e.g., such as the influence of treatments on patients’ relationships) that could influence others’ treatment choices.
Limitations of our study deserve mention. First, the experiences of patients recruited in Baltimore, Maryland may not generalize to the experiences of other patients with ESRD and their families, or individuals from different geographic areas. Because we recruited patients receiving RRT for more than a year, it is probable that patients’ recall concerning decision making about RRT initiation could have changed over time. It is also likely patients’ recollections regarding initiation of a single RRT could have been altered since there were some participants who had experience with more than one treatment modality. Second, some of our patient and family groups were small and may not have elicited the full range of factors considered important to more representative groups of patients and families. Many contextual factors could influence patients’ and their family members’ perceived information needs, including their education levels, financial resources, available family support, and independence. Family members’ perceived information needs might also vary according to the closeness of their relationships with patients. Moreover, the total number of participants in our groups was small, limiting our ability to make inferences regarding whether participants’ information needs might vary according to these factors. Our findings of potential differences between African American and non-African American groups could be influenced by differences in the education or financial status of participants and should therefore be interpreted with caution. Finally, we asked patients to identify one family member to participate in our study. The perspectives of the family members chosen to participate may have differed from the viewpoints of non-participants. Notwithstanding these limitations, we are unaware of other studies designed to simultaneously identify patients’ and families’ needs regarding education to support RRT selection decisions. Furthermore, we are not aware of studies exploring potential race differences in these needs.