Internal Medicine Dialysis Provider Perspective Joe Ghata Disclaimers 1
Learning Objectives Transition vs Transfer Healthcare Utilization Among AYA with ESRD Home hemodialysis Modalities Undocumented AYA Individuals Ferris et al 2015. Self Management and Transition Among Adolescents/Young Adults with Chronic or ESKD. Transition vs Transfer 2
Transition vs Transfer Adolescents/young adults (AYA) constitute approximately 3% of the end stage renal disease (ESRD) population. Transition is an active process that addresses the medical, psychosocial, and educational/vocational needs of adolescents as they prepare to move from child centered health care to adultcentered health care Whereas transfer refers to changes in health care providers, clinic locations, or both. Transition/Transfer is a normative event that establishes autonomy in the patient and from the caregiver. 3
John Wiley and Sons, Inc. 2010. Pediatric Transplantation Type (Of Illiness) Rx Adherence Nutrition Self Management Skills Informed Reproductive Health Trade/School Insurance Ongoing Support New Health Care Providers 4
Watson et al 2000. Non compliance and transfer from Pediatric To Adult Transplant Unit. Watson et al 2000. Non compliance and transfer from Pediatric To Adult Transplant Unit. CORR identified ESRD patients <22 yoa between 2001 2010, who received care in an adult care facility after 15 yoa. The cohort was linked to the national hospitalizations database to identify avoidable hospitalizations relevant for young patients with ESRD. Patients were followed up until death, loss to follow up, or study end. Two groups were studied: (1) patients transferred from pediatric to adult care; (2) patients receiving ESRD care exclusively in adult centers Samuel et al. Pediatrics 2014. Avoidable Hospitalizations in Youth With Kidney Failure After Transfer to or With Only Adult Care. 5
Among the 257 (73.6%) patients who received ESRD care exclusively in adult centers, avoidable hospitalization rates increased with age. Samuel et al. Pediatrics 2014. Avoidable Hospitalizations in Youth With Kidney Failure After Transfer to or With Only Adult Care. 6
Among the 92 (26.4%) patients transferred to adult care during the study period, avoidable hospitalization rates were highest during the period 3 to 4 years after transfer (rate ratio: 3.19 [95% confidence interval: 1.42 7.18]) compared with the last year in pediatric care. Samuel et al. Pediatrics 2014. Avoidable Hospitalizations in Youth With Kidney Failure After Transfer to or With Only Adult Care. Healthcare Utilization Among AYA with ESRD Health Literacy Persons with limited health literacy skills have: Higher utilization of treatment services Hospitalization Emergency services Lower utilization of preventive services Only 12 percent of adults have proficient health literacy. In other words, nearly 9 out of 10 young adults may lack the skills needed to manage their health and prevent disease. 7
Healthcare Costs Predicted inpatient spending for persons with inadequate health literacy (measured by the REALM) was $993 higher than that of persons with adequate health literacy. NAAL found that the additional healthcare resources attributable to inadequate health literacy were $29 billion (assuming that inadequate literacy was equivalent to inadequate health literacy): This number would have grown to $69 billion if even one half of marginally literate adults were also considered not health literate. Agency for Healthcare Related Quality Report Literacy and Health Outcomes (2014) 260 maintenance hemodialysis patients enrolled in a randomized clinical trial of symptom management strategies from January 2009 through April 2011. Significant correlative differences were already seen in Race, Education, Income, Dialysis Access, and CCI scores. Green et al. AJKD 2013. Associations of Health Literacy with Dialysis Adherence and Resource Utilization in Patients Receiving Maintenance Hemodialysis. 8
There were 1,152 missed treatments, 5,127 abbreviated treatments, 552 emergency department visits, and 463 ESRD related hospitalizations. Green et al. AJKD 2013. Associations of Health Literacy with Dialysis Adherence and Resource Utilization in Patients Receiving Maintenance Hemodialysis. Patients (even when adjusted) receiving maintenance hemodialysis who have limited health literacy are more likely to miss dialysis treatments, use emergency care, and be hospitalized related to their kidney disease. Cavanaugh et al. JASN 2010. Low health literacy associates with increased mortality in ESRD. 480 incident chronic hemodialysis patients from 77 dialysis clinics between 2005 and 2007 and followed them until April 2008. Measured using the Rapid Estimate of Adult Literacy in Medicine, 32% of patients had limited (<9th grade reading level) and 68% had adequate health literacy ( 9th grade reading level). Cavanaugh et al. JASN 2010. Low health literacy associates with increased mortality in ESRD. 9
Cavanaugh et al. JASN 2010. Low health literacy associates with increased mortality in ESRD. Limited health literacy was more likely in patients who were male and non white and who had fewer years of education. Compared with adequate literacy, limited health literacy associated with a higher risk for death (HR 1.54) even after adjustment for age, sex, race, and diabetes. Cavanaugh et al. JASN 2010. Low health literacy associates with increased mortality in ESRD. Although there was a difference in baseline serum albumin by health literacy, there was no significant difference by health literacy level in the laboratory measures of Kt/V, hemoglobin, transferrin saturation, phosphorus, calcium, calcium phosphorus product, or intactparathyroid hormone at 3, 6, or 12 months after dialysis initiation. Cavanaugh et al. JASN 2010. Low health literacy associates with increased mortality in ESRD. 10
Home Hemodialysis Modalities End Stage Renal Disease in the US According to the latest U.S. Renal Data System Annual Data Report, more than 660,000 Americans are being treated for ESRD. Of these, 468,000 are dialysis patients and more than 193,000 have a functioning kidney transplant. There are approximately 6,479 dialysis facilities in the U.S. Of these dialysis facilities, approximately 617 are hospital based. When pediatric patients transfer, they often lose their original hospital based centers. 11
Home Hemodialysis Of the more than 450,000 prevalent patients receiving dialysis in the United States, roughly 7% 8% of patients utilize home based peritoneal dialysis, and <1% perform home hemodialysis. In contrast, adoption of home dialysis in other countries some well resourced and others less so is far greater. In Australia, for example, 28% of patients are on home dialysis, including 9% on home hemodialysis. 12
Published Barriers Complexity of Existing Technology Fear of Self Cannulation Ready Availability of Numerous Free Standing Hemodialysis Facilities Nephrologist Preferences Passive, Inactivated Patient Population All participants were receiving incenter hemodialysis, and had volunteered to be contacted for market research purposes. Electronic mail invitations were sent to 587 patients, of whom 250 (43%) responded. 13
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Undocumented Individuals 15
Compassionate Dialysis: A Terrible Misnomer In 40 of 50 US states, scheduled dialysis is withheld from undocumented immigrants with ESRD instead, they receive intermittent emergency only dialysis. Individuals receive enough dialysis such that they are no longer on the precipice of death, as mandated under the 1986 Emergency Medical Treatment and Labor Act, and are instructed to return to the ED when symptoms indicating the need for dialysis again arise. In 2014, the estimated number of undocumented immigrants was 11.4 million, or 3.5% of the total US population. States with the highest shares were California (20.9%), Texas (14.7%), Florida (7.5%), New York (6.9%), New Jersey (4.4%), and Illinois (4.0%). Compassionate Dialysis: A Terrible Misnomer Although undocumented immigrants were specifically excluded from subsidized ACA plans, the elimination of preexisting conditions exclusions has enabled coverage under unsubsidized commercial plans. Since 2014, more than 200 undocumented dialysis dependent patients in Texas and Illinois have purchased off exchange plans that cover thrice weekly dialysis in outpatient clinics. Opponents believe that offering dialysis or transplantation could incentivize and increase illegal immigration. The overall unadjusted mortality rate was 3% in the scheduled dialysis group (n = 3) compared with 17% in the emergency only dialysis group (n = 13; P =.001), corresponding to an estimated absolute risk reduction of 14% and number needed to treat of 7 at 12 months. The adjusted hazard ratio for death for emergency only vs scheduled dialysis was 4.6 (95% CI, 1.2 18.2; P =.03) by log rank test. Nguyen et al. JAMA 2018. Association of Scheduled vs Emergency Only Dialysis with Health Outcomes and Costs in Undocumented Immigrants with End Stage Renal Disease. 16
Nguyen et al. JAMA 2018. Association of Scheduled vs Emergency Only Dialysis with Health Outcomes and Costs in Undocumented Immigrants with End Stage Renal Disease. OU Peds Mentors Dr. Martin Turman Dr. Pascale Lane Dr. David Arthur Myers Dr. Anjali B Niyak Dr. Nisha Matthews Dr. Abhijeet Pal 17
OU Med/Peds Shout Out Dr. Saraubh Dasgupta 2014 (Adult Nephrology Cleveland Clinic) Myself 2014 (Adult Nephrology OU) Dr. Anas Farooq 2016 (Adult Nephrology Henry Ford) Dr. Duy Vu 2019 (Med/Peds Nephrology UNC) Dr. Gargi Sharma 2019 (Adult Nephrology UNC) 5 out of the last 15 Med/Peds graduates Nephrology 18