Bjorg Thorsteinsdottir1,2,3,4, Nataly R Espinoza Suarez5, Susan Curtis6, Annika T Beck6, Ian Hargraves5, Kevin Shaw5, Susan P Y Wong7, LaTonya J Hickson8,9, Kasey R Boehmer5, Brigid Amberg9, Erin Dahlen9, Cristina Wirtz9, Robert C Albright9, Ashok Kumbamu8, Jon C Tilburt6,10, Erica J Sutton6. 1. Division of Community Internal Medicine, Mayo Clinic, 200 First St SW, Rochester, MN, USA. Thorsteinsdottir.bjorg@mayo.edu. 2. Biomedical Ethics Program, Mayo Clinic, Rochester, MN, USA. Thorsteinsdottir.bjorg@mayo.edu. 3. Knowledge Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA. Thorsteinsdottir.bjorg@mayo.edu. 4. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA. Thorsteinsdottir.bjorg@mayo.edu. 5. Knowledge Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA. 6. Biomedical Ethics Program, Mayo Clinic, Rochester, MN, USA. 7. University of Washington and VA Puget Sound Health Care System, Seattle, WA, USA. 8. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA. 9. Division of Nephrology and Hypertension, Mayo Clinic, Rochester, MN, USA. 10. Divisions of General Internal Medicine All at Mayo Clinic, Rochester, MN, USA.
Abstract
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.
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.
Authors: Ryan T Anderson; Hailey Cleek; Atieh S Pajouhi; M Fernanda Bellolio; Ananya Mayukha; Allyson Hart; LaTonya J Hickson; Molly A Feely; Michael E Wilson; Ryan M Giddings Connolly; Patricia J Erwin; Abdul M Majzoub; Navdeep Tangri; Bjorg Thorsteinsdottir Journal: Clin J Am Soc Nephrol Date: 2019-07-30 Impact factor: 8.237
Authors: Amy W Williams; Amy C Dwyer; Allison A Eddy; Jeffrey C Fink; Bertrand L Jaber; Stuart L Linas; Beckie Michael; Ann M O'Hare; Heidi M Schaefer; Rachel N Shaffer; Howard Trachtman; Daniel E Weiner; And Ronald J Falk Journal: Clin J Am Soc Nephrol Date: 2012-09-13 Impact factor: 8.237
Authors: Susan P Y Wong; Paul L Hebert; Ryan J Laundry; Kenric W Hammond; Chuan-Fen Liu; Nilka R Burrows; Ann M O'Hare Journal: Clin J Am Soc Nephrol Date: 2016-09-22 Impact factor: 8.237
Authors: Melissa W Wachterman; Edward R Marcantonio; Roger B Davis; Robert A Cohen; Sushrut S Waikar; Russell S Phillips; Ellen P McCarthy Journal: JAMA Intern Med Date: 2013-07-08 Impact factor: 21.873