TY - JOUR
T1 - Perspectives of Clinicians on Shared Decision Making in Pediatric CKD
T2 - A Qualitative Study
AU - Kerklaan, Jasmijn
AU - Hanson, Camilla S.
AU - Carter, Simon
AU - Tong, Allison
AU - Sinha, Aditi
AU - Dart, Allison
AU - Eddy, Allison A.
AU - Guha, Chandana
AU - Gipson, Debbie S.
AU - Bockenhauer, Detlef
AU - Hannan, Elyssa
AU - Yap, Hui-Kim
AU - Groothoff, Jaap
AU - Zappitelli, Michael
AU - Amir, Noa
AU - Alexander, Stephen I.
AU - Furth, Susan L.
AU - Samuel, Susan
AU - Gutman, Talia
AU - Craig, Jonathan C.
N1 - Funding Information: Jasmijn Kerklaan, MD, Camilla S. Hanson, PhD, Simon Carter, MBBS, Allison Tong, PhD, Aditi Sinha, MD, Allison Dart, MD, Allison A. Eddy, MD, Chandana Guha, Debbie S. Gipson, MD, Detlef Bockenhauer, PhD, Elyssa Hannan, BPsych (Hons), Hui-Kim Yap, MD, Jaap Groothoff, PhD, Michael Zappitelli, MD, MSc, Noa Amir, MBBS, Stephen I. Alexander, MD, Susan L. Furth, PhD, Susan Samuel, MD, Talia Gutman, PhD, and Jonathan C. Craig, PhD. Research idea and study design: all authors; data acquisition: CSH, AT; data analysis/interpretation: JK, CSH, AT, EH; supervision or mentorship: AT, JG, JCC. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual's own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. This project is supported by the Australian National Health and Medical Research Council Program (grant ID 1092957). The funding organization had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review, or approval of the manuscript. The authors declare that they have no relevant financial interests. We are grateful to the clinicians that gave their time to participate and shared their valuable experience. Aspects of this work were presented at 53rd European Society for Paediatric Nephrology Annual Meeting held in Amsterdam, The Netherlands, in September 2021. Received August 25, 2021. Evaluated by 3 external peer reviewers and a methods reviewer, with editorial input from an Acting Editor-in-Chief (Editorial Board Member Devika Nair, MD, MSCI). Accepted in revised form December 6, 2021. The involvement of an Acting Editor-in-Chief to handle the peer-review and decision-making processes was to comply with AJKD's procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies. Funding Information: This project is supported by the Australian National Health and Medical Research Council Program (grant ID 1092957). The funding organization had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review, or approval of the manuscript. Publisher Copyright: © 2022 The Author(s)
PY - 2022/8
Y1 - 2022/8
N2 - Rationale & Objective: Clinical decision-making priorities may differ among children, their parents, and their clinicians. This study describes clinicians’ perspectives on shared decision making in pediatric chronic kidney disease (CKD) and identifies opportunities to improve shared decision making and care for children with CKD and their families. Study Design: Semistructured interviews. Setting & Participants: Fifty clinicians participated, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists involved in providing care to children with CKD. They worked at 18 hospitals and 4 university research departments across 11 countries (United States of America, Canada, Australia, People's Republic of China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand, and Singapore). Analytical Approach: Interview transcripts were analyzed thematically. Results: We identified 4 themes: (1) striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), (2) focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), (3) collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision making, sensitive to parental distress), and (4) forming cumulative knowledge (balancing reassurance and realistic expectations, building understanding around treatment, harnessing motivation for long-term goals). Limitations: Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain. Conclusions: Clinicians reported striving to minimize treatment burden and working with children and their families to manage their expectations and support their decision making. However, they are challenged with system constraints and sometimes felt the pressure of being responsible for the child's long-term outcomes. Further studies are needed to test whether support for shared decision making would promote strategies to establish and improve the quality of care for children with CKD.
AB - Rationale & Objective: Clinical decision-making priorities may differ among children, their parents, and their clinicians. This study describes clinicians’ perspectives on shared decision making in pediatric chronic kidney disease (CKD) and identifies opportunities to improve shared decision making and care for children with CKD and their families. Study Design: Semistructured interviews. Setting & Participants: Fifty clinicians participated, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists involved in providing care to children with CKD. They worked at 18 hospitals and 4 university research departments across 11 countries (United States of America, Canada, Australia, People's Republic of China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand, and Singapore). Analytical Approach: Interview transcripts were analyzed thematically. Results: We identified 4 themes: (1) striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), (2) focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), (3) collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision making, sensitive to parental distress), and (4) forming cumulative knowledge (balancing reassurance and realistic expectations, building understanding around treatment, harnessing motivation for long-term goals). Limitations: Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain. Conclusions: Clinicians reported striving to minimize treatment burden and working with children and their families to manage their expectations and support their decision making. However, they are challenged with system constraints and sometimes felt the pressure of being responsible for the child's long-term outcomes. Further studies are needed to test whether support for shared decision making would promote strategies to establish and improve the quality of care for children with CKD.
KW - Children
KW - chronic kidney disease (CKD)
KW - clinician
KW - decisional conflict
KW - end-stage renal disease (ESRD)
KW - interview
KW - patient autonomy
KW - patient-centered care
KW - patient-doctor relationship
KW - pediatric
KW - qualitative research
KW - quality of life (QOL)
KW - shared decision making
UR - http://www.scopus.com/inward/record.url?scp=85127459455&partnerID=8YFLogxK
U2 - https://doi.org/10.1053/j.ajkd.2021.12.009
DO - https://doi.org/10.1053/j.ajkd.2021.12.009
M3 - Article
C2 - 35085686
SN - 0272-6386
VL - 80
SP - 241
EP - 250
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
IS - 2
ER -