Preferences for and Experiences of Shared and Informed Decision Making Among Patients Choosing Kidney Replacement Therapies in Nephrology Care
Tyler M. Barrett, Jamie A. Green, Raquel C. Greer, Patti L. Ephraim, Sarah B. Peskoe, Jane Pendergast, Chelsie L. Hauer, Tara S. Strigo, Evan Norfolk, Ion D. Bucaloiu, Clarissa J. Diamantidis, Felicia Hill‐Briggs, Teri Browne, George L. Jackson, L. Ebony Boulware, L. Ebony Boulware, Clarissa J. Diamantidis, Clare Il’Giovine, George L. Jackson, Jane Pendergast, Sarah B. Peskoe, Tara S. Strigo, Jon Billet, Jason Browne, Ion D. Bucaloiu, Charlotte Collins, Daniel E. Davis, Sherri Fulmer, Jamie Green, Chelsie Hauer, Evan Norfolk, Michelle Richner, Cory Siegrist, Wendy Smeal, Rebecca Stametz, Mary Solomon, Christina Yule, Patti L. Ephraim, Raquel C. Greer, Felicia Hill‐Briggs, Teri Browne, Navdeep Tangri, Brian Bankes, Shakur Bolden, Patricia Danielson, Katina Lang‐Lindsey, Suzanne Ruff, Lana Schmidt, Amy Swoboda, Peter Woods, Diana Clynes, Stephanie Stewart, Dori Schatell, Kristi Klicko, Brandi Vinson, Jennifer St. Clair Russell, Kelli K. Collins, Jennifer A. Martin, Dale Singer, Diane Littlewood
Abstract
Rationale & ObjectiveChronic kidney disease (CKD) can progress rapidly, and patients are often unprepared to make kidney failure treatment decisions. We aimed to better understand patients’ preferences for and experiences of shared and informed decision making (SDM) regarding kidney replacement therapy before kidney failure.Study DesignCross-sectional study.Setting & ParticipantsAdults receiving nephrology care at CKD clinics in rural Pennsylvania.PredictorsEstimated glomerular filtration rate, 2-year risk for kidney failure, duration and frequency of nephrology care, and preference for SDM.OutcomesOccurrence and extent of kidney replacement therapy discussions and participants’ satisfaction with those discussions.Analytic ApproachMultivariable logistic regression to quantify associations between participants’ characteristics and whether they had discussions.ResultsThe 447 study participants had a median age of 72 (IQR, 64-80) years and mean estimated glomerular filtration rate of 33 (SD, 12) mL/min/1.73 m2. Most (96%) were White, high school educated (67%), and retired (65%). Most (72%) participants preferred a shared approach to kidney treatment decision making, and only 35% discussed dialysis or transplantation with their kidney teams. Participants who had discussions (n = 158) were often completely satisfied (63%) but infrequently discussed potential treatment-related impacts on their lives. In multivariable analyses, those with a high risk for kidney failure within 2 years (OR, 3.24 [95% CI, 1.72-6.11]; P < 0.01), longer-term nephrology care (OR, 1.12 [95% CI, 1.05-1.20] per 1 additional year; P < 0.01), and more nephrology visits in the prior 2 years (OR, 1.34 [95% CI, 1.20-1.51] per 1 additional visit; P < 0.01) had higher odds of having discussed dialysis or transplantation.LimitationsSingle health system study.ConclusionsMost patients preferred sharing CKD treatment decisions with their providers, but treatment discussions were infrequent and often did not address key treatment impacts. Longitudinal nephrology care and frequent visits may help ensure that patients have optimal SDM experiences. Chronic kidney disease (CKD) can progress rapidly, and patients are often unprepared to make kidney failure treatment decisions. We aimed to better understand patients’ preferences for and experiences of shared and informed decision making (SDM) regarding kidney replacement therapy before kidney failure. Cross-sectional study. Adults receiving nephrology care at CKD clinics in rural Pennsylvania. Estimated glomerular filtration rate, 2-year risk for kidney failure, duration and frequency of nephrology care, and preference for SDM. Occurrence and extent of kidney replacement therapy discussions and participants’ satisfaction with those discussions. Multivariable logistic regression to quantify associations between participants’ characteristics and whether they had discussions. The 447 study participants had a median age of 72 (IQR, 64-80) years and mean estimated glomerular filtration rate of 33 (SD, 12) mL/min/1.73 m2. Most (96%) were White, high school educated (67%), and retired (65%). Most (72%) participants preferred a shared approach to kidney treatment decision making, and only 35% discussed dialysis or transplantation with their kidney teams. Participants who had discussions (n = 158) were often completely satisfied (63%) but infrequently discussed potential treatment-related impacts on their lives. In multivariable analyses, those with a high risk for kidney failure within 2 years (OR, 3.24 [95% CI, 1.72-6.11]; P < 0.01), longer-term nephrology care (OR, 1.12 [95% CI, 1.05-1.20] per 1 additional year; P < 0.01), and more nephrology visits in the prior 2 years (OR, 1.34 [95% CI, 1.20-1.51] per 1 additional visit; P < 0.01) had higher odds of having discussed dialysis or transplantation. Single health system study. Most patients preferred sharing CKD treatment decisions with their providers, but treatment discussions were infrequent and often did not address key treatment impacts. Longitudinal nephrology care and frequent visits may help ensure that patients have optimal SDM experiences.