Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere
DOI:
https://doi.org/10.52786/isu.a.26Keywords:
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. Every second Thursday in March, World Kidney Day (WKD) is celebrated. This year, it is on 11th March 2021. The 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 COVID-19 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.
References
Tong A, Manns B, Wang AYM, Hemmelgarn B, Wheeler DC, Gill J, et al. Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop. Kidney Int 2018;94:1053-68.
Carter SA, Gutman T, Logeman C, Cattran D, Lightstone L, Bagga A, et al. Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers. Clin J Am Soc Nephrol 2020; 15:673-84.
Hanson CS, Craig JC, Logeman C, Sinha A, Dart A, Eddy AA, 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;98:553-65.
Gonzalez AM, Gutman T, Lopez-Vargas P, Anumudu S, Arce CM, Craig JC, et al. Patient and caregiver priorities for outcomes in CKD: a multinational nominal group technique study. Am J Kid Dis 2020;76:679-89.
WHO. Towards a common language for functioning, disability and health. Geneva, Switzerland: World Health Organization; 2002.
WHO. Health Promotion Glossary. Geneva, Switzerland: World Health Organization; 1998.
Baumgart A, Manera KE, Johnson DW, Craig JC, Shen JI, Ruiz L, et al. Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers. Nephrol Dial Transplant 2020;35:1949- 58.
PCORI. The Value of Engagement (Available at https://www.pcori.org/about-us/our-programs/ engagement/public-and-patient-engagement/value-engagement, accessed 1st September 2020). United States: Patient-Centered Outcomes Research Institute; 2018.
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;14:1539-47.
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.
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. J Health Psychol 2014;21:193-205.
Subramanian L, Kirk R, Cuttitta T, Bryant N, Fox K, McCall M, 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;1:354-65.
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:e0199977.
Kasitipradith N. The Ministry of Public Health telemedicine network of Thailand. Int J Med Inform 2001;61:113-6.
Witthayapipopsakul W, Cetthakrikul N, Suphanchaimat R, Noree T, Sawaengdee K. Equity of health workforce distribution in Thailand: an implication of concentration index. Risk Manag Healthc policy. 2019;12:13-22.
Somporn P, Walters L, Ash J. Expectations of rural community-based medical education: a case study from Thailand. Rural Remote Health 2018;18:4709.
Noppakun K, Ingsathit A, Pongskul C, Premasthian N, Avihinsanon Y, Lumpaopong A, et al. A 25-year experience of kidney transplantation in Thailand: report from the Thai Transplant Registry. Nephrology (Carlton) 2015;20:177-83.
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.
Spinowitz B, Pecoits-Filho R, Winkelmayer WC, Pergola P, Rochette S, Thomson-Leduc P, et al. Economic and quality of life burden of anemia on patients with CKD on dialysis: a systematic review. J Med Econ 2019;22:593-604.
Sukul N, Speyer E, Tu C, Bieber BA, Li Y, Lopes AA, et al. Pruritus and Patient Reported Outcomes in Non-Dialysis CKD. Clin J Am Soc Nephrol 2019;14:673-81.
Gregg LP, Hedayati SS. Pharmacologic and psychological interventions for depression treatment in patients with kidney disease. Curr Opin Nephrol Hypertens 2020;29:457-64.
Li PK, Garcia-Garcia G, Lui SF, Andreoli S, Fung WW, Hradsky A, et al. Kidney health for everyone everywhere from prevention to detection and equitable access to care. Kidney Int 2020;97:226-32.
Kalantar-Zadeh K, Li PK. Strategies to prevent kidney disease and its progression. Nat Rev Nephrol 2020;16:129-30.
Kalantar-Zadeh K, Wightman A, Liao S. Ensuring Choice for People with Kidney Failure-Dialysis, Supportive Care, and Hope. N Engl J Med 2020;383:99-101.
