Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere
Keywords:
Patient empowerment, Care-partner, Low-middle-income countries, Health policyAbstract
Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has
declared 2021 the year of “Living Well with Kidney Disease” in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for
research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.
Downloads
References
Tong A, Manns B, Wang AYM, et al. Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop. Kidney Int. 2018;94(6):1053-1068.
Carter SA, Gutman T, Logeman C, et al. Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers. Clin J Am Soc Nephrol. 2020;15(5):673-684.
Hanson CS, Craig JC, Logeman C, et al. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops. Kidney Int. 2020. doi: 10.1016/j.kint.2020.05.054.
Gonzalez AM, Gutman T, Lopez-Vargas P, et al. Patient and caregiver priorities for outcomes in CKD: a multinational nominal group technique study. Am J Kid Dis. 2020. doi:10.1053/j.ajkd.2020.03.022.
WHO. Towards a common language for functioning, disability and health. 2002;WHO/EIP/GPE/CAS/01.3.
WHO. Health Promotion Glossary. 1998;WHO/HPR/HEP/98.1.
Baumgart A, Manera KE, Johnson DW, et al. Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers. Nephrol Dial Transplant. 2020. doi:10.1093/ndt/gfaa127.
PCORI. The Value of Engagement. https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement/value-engagement. Published 2018. Accessed September 1, 2020.
Bonventre JV, Hurst FP, West M, Wu I, Roy-Chaudhury P, Sheldon M. A Technology Roadmap for Innovative Approaches to Kidney Replacement Therapies: A Catalyst for Change. Clin J Am Soc Nephrol. 2019;14(10):1539-1547. doi: 10.2215/CJN.02570319.
Ibrahim N, Michail M, Callaghan P. The strengths based approach as a service delivery model for severe mental illness: a meta-analysis of clinical trials. BMC Psychiatry. 2014;14:243. doi: 10.1186/s12888-014-0243-6.
Parham R, Jacyna N, Hothi D, Marks SD, Holttum S, Camic P. Development of a measure of caregiver burden in paediatric chronic kidney disease: The Paediatric Renal Caregiver Burden Scale. Journal of health psychology. 2014. doi: 10.1177/1359105314524971.
Subramanian L, Kirk R, Cuttitta T, et al. Remote Management for Peritoneal Dialysis: A Qualitative Study of Patient, Care Partner, and Clinician Perceptions and Priorities in the United States and the United Kingdom. Kidney Med. 2019;1(6):354-365. doi: 10.1016/j.xkme.2019.07.014.
Angwenyi V, Aantjes C, Kajumi M, De Man J, Criel B, Bunders-Aelen J. Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi. PLoS One. 2018;13(7):e0199977. doi: 10.1371/journal.pone.0199977.
Ulasi II, Ijoma CK. The enormity of chronic kidney disease in Nigeria: the situation in a teaching hospital in South-East Nigeria. J Trop Med. 2010;2010:501957. doi: 10.1155/2010/501957.
Spinowitz B, Pecoits-Filho R, Winkelmayer WC, et al. Economic and quality of life burden of anemia on patients with CKD on dialysis: a systematic review. J Med Econ. 2019;22(6):593-604. doi: 10.1080/13696998.2019.1588738.
Sukul N, Speyer E, Tu C, et al. Pruritus and Patient Reported Outcomes in Non-Dialysis CKD. Clin J Am Soc Nephrol. 2019;14(5):673-681. doi: 10.2215/CJN.09600818.
Gregg LP, Hedayati SS. Pharmacologic and psychological interventions for depression treatment in patients with kidney disease. Curr Opin Nephrol Hypertens. 2020;29(5):457-464. doi: 10.1097/MNH.0000000000000629.
Li PK, Garcia-Garcia G, Lui SF, et al. Kidney health for everyone everywhere-from prevention to detection and equitable access to care. Kidney Int. 2020;97(2):226-232. doi: 10.1016/j.kint.2019.12.002.
Kalantar-Zadeh K, Li PK. Strategies to prevent kidney disease and its progression. Nat Rev Nephrol. 2020;16(3):129-130. doi: 10.1038/s41581-020-0253-1.
Kalantar-Zadeh K, Wightman A, Liao S. Ensuring Choice for People with Kidney Failure - Dialysis, Supportive Care, and Hope. N Engl J Med. 2020;383(2):99-101. doi: 10.1056/NEJMp2001794.
Downloads
Published
How to Cite
Issue
Section
License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.