Thalia Porteny1, Kristina M Gonzales2, Kate E Aufort2, Sarah Levine3, John B Wong4, Tamara Isakova5, Dena E Rifkin6,7, Elisa J Gordon8,9, Ana Rossi10, Gary Di Perna11, Susan Koch-Weser12, Daniel E Weiner3, Keren Ladin2. 1. Lab for Research on Ethics, Aging and Community Health, Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts thalia.porteny@tufts.edu. 2. Lab for Research on Ethics, Aging and Community Health, Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts. 3. William B. Schwartz MD Division of Nephrology, Tufts Medical Center, Boston, Massachusetts. 4. Division of Clinical Medicine, Department of Medicine, Tufts Medical Center, Boston, Massachusetts. 5. Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois. 6. Division of Nephrology, Veterans' Affairs Healthcare System, San Diego, California. 7. Department of Medicine, Division of Nephrology and Hypertension, University of California, San Diego, San Diego, California. 8. Department of Surgery, Division of Transplantation, Northwestern University Feinberg School of Medicine, Chicago, Illinois. 9. Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois. 10. Piedmont Transplant Institute, Atlanta, Georgia. 11. Maine Nephrology Associates, Maine. 12. Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston, Massachusetts.
Abstract
BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) disrupted medical care across health care settings for older patients with advanced CKD. Understanding how shared decision making for kidney treatment decisions was influenced by the uncertainty of an evolving pandemic can provide insights for supporting shared decision making through the current and future public health crises. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We performed thematic and narrative analyses of semistructured interviews with patients (CKD stages 4 and 5, age 70+), care partners, and clinicians from Boston, Portland (Maine), San Diego, and Chicago from August to December 2020. RESULTS: We interviewed 76 participants (39 patients, 17 care partners, and 20 clinicians). Among patient participants, 13 (33%) patients identified as Black, and seven (18%) had initiated dialysis. Four themes with corresponding subthemes emerged related to treatment decision making and the COVID-19 pandemic: (1) adapting to changed educational and patient engagement practices (patient barriers to care and new opportunities for telemedicine); (2) reconceptualizing vulnerability (clinician awareness of illness severity increased and limited discussions of patient COVID-19 vulnerability); (3) embracing home-based dialysis but not conservative management (openness to home-based modalities and limited discussion of conservative management and advanced care planning); and (4) satisfaction and safety with treatment decisions despite conditions of uncertainty. CONCLUSIONS: Although clinicians perceived greater vulnerability among older patients CKD and more readily encouraged home-based modalities during the COVID-19 pandemic, their discussions of vulnerability, advance care planning, and conservative management remained limited, suggesting areas for improvement. Clinicians reported burnout caused by the pandemic, increased time demands, and workforce limitations, whereas patients remained satisfied with their treatment choices despite uncertainty. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Decision Aid for Renal Therapy (DART), NCT03522740.
BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) disrupted medical care across health care settings for older patients with advanced CKD. Understanding how shared decision making for kidney treatment decisions was influenced by the uncertainty of an evolving pandemic can provide insights for supporting shared decision making through the current and future public health crises. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We performed thematic and narrative analyses of semistructured interviews with patients (CKD stages 4 and 5, age 70+), care partners, and clinicians from Boston, Portland (Maine), San Diego, and Chicago from August to December 2020. RESULTS: We interviewed 76 participants (39 patients, 17 care partners, and 20 clinicians). Among patient participants, 13 (33%) patients identified as Black, and seven (18%) had initiated dialysis. Four themes with corresponding subthemes emerged related to treatment decision making and the COVID-19 pandemic: (1) adapting to changed educational and patient engagement practices (patient barriers to care and new opportunities for telemedicine); (2) reconceptualizing vulnerability (clinician awareness of illness severity increased and limited discussions of patient COVID-19 vulnerability); (3) embracing home-based dialysis but not conservative management (openness to home-based modalities and limited discussion of conservative management and advanced care planning); and (4) satisfaction and safety with treatment decisions despite conditions of uncertainty. CONCLUSIONS: Although clinicians perceived greater vulnerability among older patients CKD and more readily encouraged home-based modalities during the COVID-19 pandemic, their discussions of vulnerability, advance care planning, and conservative management remained limited, suggesting areas for improvement. Clinicians reported burnout caused by the pandemic, increased time demands, and workforce limitations, whereas patients remained satisfied with their treatment choices despite uncertainty. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Decision Aid for Renal Therapy (DART), NCT03522740.
Authors: Rebecca Frazier; Sarah Levine; Thalia Porteny; Hocine Tighiouart; John B Wong; Tamara Isakova; Susan Koch-Weser; Elisa J Gordon; Daniel E Weiner; Keren Ladin Journal: Am J Kidney Dis Date: 2022-03-26 Impact factor: 11.072
Authors: Caroline E Sloan; Cynthia J Coffman; Linda L Sanders; Matthew L Maciejewski; Shoou-Yih D Lee; Richard A Hirth; Virginia Wang Journal: Clin J Am Soc Nephrol Date: 2019-11-21 Impact factor: 8.237
Authors: Robert Ziemba; Kyle N Campbell; Tsu-Hsuan Yang; Sara Eve Schaeffer; Kelly M Mayo; Paul McGann; Shalon Quinn; Jesse Roach; Edwin D Huff Journal: MMWR Morb Mortal Wkly Rep Date: 2021-06-04 Impact factor: 17.586
Authors: Keren Ladin; Isabel Neckermann; Noah D'Arcangelo; Susan Koch-Weser; John B Wong; Elisa J Gordon; Ana Rossi; Dena Rifkin; Tamara Isakova; Daniel E Weiner Journal: J Am Soc Nephrol Date: 2021-04-07 Impact factor: 14.978
Authors: Christopher M Petrilli; Simon A Jones; Jie Yang; Harish Rajagopalan; Luke O'Donnell; Yelena Chernyak; Katie A Tobin; Robert J Cerfolio; Fritz Francois; Leora I Horwitz Journal: BMJ Date: 2020-05-22
Authors: Keren Ladin; Thalia Porteny; Julia M Perugini; Kristina M Gonzales; Kate E Aufort; Sarah K Levine; John B Wong; Tamara Isakova; Dena Rifkin; Elisa J Gordon; Ana Rossi; Susan Koch-Weser; Daniel E Weiner Journal: JAMA Netw Open Date: 2021-12-01
Authors: Miriam Vélez-Bermúdez; Jenna L Adamowicz; Natoshia M Askelson; Susan K Lutgendorf; Mony Fraer; Alan J Christensen Journal: BMC Nephrol Date: 2022-08-05 Impact factor: 2.585