Background

Incident hemodialysis patients have a high mortality risk within the first months after dialysis initiation. Pre-end-stage renal disease (ESRD) factors like anemia management may impact early post-ESRD outcomes. Therefore, we evaluated the impact of pre-ESRD hemoglobin (Hgb) and pre-ESRD Hgb slope on post-ESRD mortality and hospitalization outcomes.

Methods

The study included 31,472 veterans transitioning to ESRD. Using Cox and negative binomial regression models, we evaluated the association of pre-ESRD Hgb and Hgb slope with 12-month post-ESRD all-cause and cardiovascular mortality and hospitalization rates using 4 levels of hierarchical multivariable adjustment, including erythropoietin use and kidney decline in slope models.

Results

The cohort was 2% female, 30% African-American, and on average 68 ± 11 years old. Compared to Hgb 10-< 11 g/dL, both low (< 10 g/dL) and high (≥12 g/dL) levels were associated with higher all-cause mortality after full adjustment (HR 1.25 [95% CI 1.15-1.35] and 1.09 [95% CI 1.02-1.18], respectively). Similarly, Hgb exhibited a U-shaped association with CV mortality, while only lower Hgb was associated with a higher hospitalization rate. Neither an annual pre-ESRD decline in Hgb nor increase was associated with higher post-ESRD mortality risk after adjustment for kidney decline. However, we observed a modest J-shaped association between pre-ESRD Hgb slope and post-ESRD hospitalization rate.

Conclusions

Lower and higher pre-ESRD Hgb levels are associated with a higher risk of early post-ESRD mortality, while there was no association between the pre-ESRD slope and mortality. An increase in pre-ESRD Hgb slope was associated with higher risk of post-ESRD hospitalization. Additional studies aimed at anemia management prior to ESRD transition are warranted.

Context

Early tailored transplant education could help patients make informed transplant choices.

Objective

We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken.

Design

A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations.

Results

Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families' lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant.

Conclusion

Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.

BACKGROUND:It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. OBJECTIVE:This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. METHODS:This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. RESULTS:This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. CONCLUSIONS:With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.