TY - JOUR
T1 - Older Patients with Advanced Chronic Kidney Disease and Their Perspectives on Prognostic Information
T2 - a Qualitative Study
AU - Thorsteinsdottir, Bjorg
AU - Espinoza Suarez, Nataly R.
AU - Curtis, Susan
AU - Beck, Annika T.
AU - Hargraves, Ian
AU - Shaw, Kevin
AU - Wong, Susan P.Y.
AU - Hickson, La Tonya J.
AU - Boehmer, Kasey R.
AU - Amberg, Brigid
AU - Dahlen, Erin
AU - Wirtz, Cristina
AU - Albright, Robert C.
AU - Kumbamu, Ashok
AU - Tilburt, Jon C.
AU - Sutton, Erica J.
N1 - Funding Information:
This publication [or project] was supported by Grant Number UL1 TR002377 from the National Center for Advancing Translational Sciences (NCATS), Dr. Thorsteinsdottir received funding from NIA K23AG051679 as well as Satellite Healthcare Norman S. Coplon award for this work. Dr. Hickson is funded by NIDDK K23 DK109134, Dr. Boehmer is funded by AHRQ T32HS026379. Dr. Wong receives funding from the National Institutes of Health, National Palliative Care Research Center and the VA National Center for Ethics in Health Care. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH, AHRQ, NCATS, NPRC or the VA. The results presented in this paper have not been published previously in whole or part, except in abstract format at ASN kidney week 2018.
Publisher Copyright:
© 2021, Society of General Internal Medicine.
PY - 2022/4
Y1 - 2022/4
N2 - Background: Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). Objective: To understand the prognostic information preferences expressed by older patients with CKD. Design and Participants: Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. Approach: Semi-structured telephone or in-person interviews to explore patients’ preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. Key Results: We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. Conclusion: Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.
AB - Background: Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). Objective: To understand the prognostic information preferences expressed by older patients with CKD. Design and Participants: Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. Approach: Semi-structured telephone or in-person interviews to explore patients’ preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. Key Results: We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. Conclusion: Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.
KW - communication
KW - dialysis risk
KW - palliative care
KW - prognosis
KW - shared decision-making
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U2 - 10.1007/s11606-021-07176-8
DO - 10.1007/s11606-021-07176-8
M3 - Article
C2 - 35083651
AN - SCOPUS:85123715271
SN - 0884-8734
VL - 37
SP - 1031
EP - 1037
JO - Journal of General Internal Medicine
JF - Journal of General Internal Medicine
IS - 5
ER -