Towards a common language for functioning, disability and health: ICF: the International Classification of Functioning, Disability and Health.
|“I don't want to think about dying from my disease. I want to be able to live well with my disease.” – Patient with CKD|
|“Life participation is most important because without it, you can't do anything.” – Child with CKD|
|“Maybe it’s as simple as asking patients whether, how well they are able to participate in the life that they want to lead because it's going to be different for different people.” – Kidney transplant recipient|
|“Everyone has to face death, what I would like to have is a good quality of life rather than to face death.” – Kidney transplant recipient|
|“So, it doesn't actually really matter what the numbers say, and some of my numbers should have suggested that I should be feeling a lot worse than what I actually was; it's about how much I feel I can do and participate in my life and feel normal.” – Patient with CKD|
|“I'm still living. I get out of bed, and I'm still living and still breathing. As long as I can do that, I'm going to carry on and be positive because life is short.” – Patient with CKD|
|“I put life participation because I know that looking from the outside, I know [his kidney disease] stops [him] from thinking bigger…. Although that's really big, there's this life that has to happen at the same time.” – Family member|
|“Amazed at comments from professional(sic) about travel, free time, etc., they seem to think the mechanics of dialysis far more important. Dialysis is a treatment which keeps us alive to live a life, not just to wait for death.” – Patient receiving dialysis|
|“I prefer to be above ground, then below ground. So why not enjoy life whilst being above ground.” – Adam Martin|
|“Over the years, I have learned to worry less, control my emotions and not fear death. I keep my mind active. I follow the advice of the philosopher-emperor Marcus Aurelius to 'love the hand that fate [has dealt me] and play it as [my] own'. Living well with CKD means to live the best life I can in the time I have available…. Living well with CKD is the same as living well.” – Tess Harris|
|“While CKD brings me some limitations, I can maximize the possibility to live well. I kept working when I was doing hemodialysis. After transplant, I could live: study, work, travel, marry, have children, and service the community.” – Maggie Ng|
Patient Empowerment, Partnership, and a Paradigm Shift Toward a Strengths-Based Approach to Care
Health promotion glossary.
The value of engagement.
|Strengths-based approach||Suggested strategies|
|Build resilience||• Identify or provide strategies and resources to manage stress and functioning when encountering challenges, adversity, and trauma (e.g., commencement of dialysis)|
|Harness social connections||• Facilitate connections with other patients to learn coping strategies and for support • Support family members/caregivers|
|Build awareness and knowledge||• Provide education (including practical advice) on diet and lifestyle modifications • Understand, identify, and address the potential impacts of CKD (e.g., cognitive function) • Encourage patients to ask questions.• Encourage the use of knowledge to empower and prepare for the future.|
|Facilitate access to support||• Refer to allied health care professionals (e.g., dietitian, social worker, mental health professionals, occupation therapists)• Provide support that enables patient to participate in important life activities (e.g., work)|
|Establish confidence and control in self-management||• Support informed and shared decision-making (including dialysis, kidney transplantation, conservative or nondialysis care) • Encourage patients to learn to “get in tune” with what works well for them and to voice any concerns, and work together to develop better management strategies to enable patients to feel better.• Provide strategies to prevent or manage complications (e.g., infection)• Support open communication regarding goals, concerns, and priorities|
Role of the Care Partner
Living With Kidney Disease in Low-Income Regions
WKD 2021 Advocacy
- Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop.Kidney Int. 2018; 94: 1053-1068
- Identifying outcomes important to patients with glomerular disease and their caregivers.Clin J Am Soc Nephrol. 2020; 15: 673-684
- 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: 553-565
- Patient and caregiver priorities for outcomes in CKD: a multinational nominal group technique study.Am J Kid Dis. 2020; 76: 679-689
- Towards a common language for functioning, disability and health: ICF: the International Classification of Functioning, Disability and Health.2002https://www.who.int/classifications/icf/icfbeginnersguide.pdfDate accessed: December 31, 2020
- Health promotion glossary.1998https://www.who.int/healthpromotion/about/HPR%20Glossary%201998.pdfDate accessed: December 31, 2020
- Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers.Nephrol Dial Transpl. 2020; 35: 1949-1958
- The value of engagement.2018https://www.pcori.org/engagement/value-engagementDate accessed: March 23, 2021
- A technology roadmap for innovative approaches to kidney replacement therapies: a catalyst for change.Clin J Am Soc Nephrol. 2019; 14: 1539-1547
- The strengths based approach as a service delivery model for severe mental illness: a meta-analysis of clinical trials.BMC Psychiatry. 2014; 14: 243
- Development of a measure of caregiver burden in paediatric chronic kidney disease: the Paediatric Renal Caregiver Burden Scale.J Health Psychol. 2016; 21: 193-205
- 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: 354-365
- Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi.PLoS One. 2018; 13: e0199977
- The enormity of chronic kidney disease in Nigeria: the situation in a teaching hospital in South-East Nigeria.J Trop Med. 2010; 2010 (501957)
- Economic and quality of life burden of anemia on patients with CKD on dialysis: a systematic review.J Med Econ. 2019; 22: 593-604
- Pruritus and patient reported outcomes in non-dialysis CKD.Clin J Am Soc Nephrol. 2019; 14: 673-681
- Pharmacologic and psychological interventions for depression treatment in patients with kidney disease.Curr Opin Nephrol Hypertens. 2020; 29: 457-464
- Kidney health for everyone everywhere–from prevention to detection and equitable access to care.Kidney Int. 2020; 97: 226-232
- Strategies to prevent kidney disease and its progression.Nat Rev Nephrol. 2020; 16: 129-130
- Ensuring choice for people with kidney failure–dialysis, supportive care, and hope.N Engl J Med. 2020; 383: 99-101
Members of the World Kidney Day Steering Committee are Philip Kam Tao Li, Kamyar Kalantar-Zadeh, Sharon Andreoli, Alessandro Balducci, Sophie Dupuis, Latha Kumaraswami, Vassilios Liakopoulos, Siu-Fai Lui, Gamal Saadi, and Ifeoma Ulasi.
This article is being published in Journal of Renal Nutrition and reprinted concurrently in several journals. The articles cover identical concepts and wording but vary in minor stylistic and spelling changes, detail, and length of article in keeping with each journal's style. Any of these versions may be used in citing this article.
Note that all authors contributed equally to the conception, preparation, and editing of the article.
Financial Disclosure: K.K.-Z. reports receiving honoraria from Abbott, AbbVie, ACI Clinical, Akebia, Alexion, Amgen, Ardelyx, AstraZeneca, Aveo, BBraun, Cara Therapeutics, Chugai, Cytokinetics, Daiichi, DaVita, Fresenius, Genentech, Haymarket Media, Hospira, Kabi, Keryx, Kissei, Novartis, Pfizer, Regulus, Relypsa, Resverlogix, Dr Schaer, Sandoz, Sanofi, Shire, Vifor, UpToDate, and ZS Pharma. P.K.-T.L. reports receiving personal fees from Fibrogen and AstraZeneca. G.S. reports receiving personal fees from Multicare, Novartis, Sandoz, and AstraZeneca. V.L. reports receiving nonfinancial support from Genesis Pharma. All the other authors declared no competing interests.
User LicenseCreative Commons Attribution – NonCommercial – NoDerivs (CC BY-NC-ND 4.0) |
For non-commercial purposes:
- Read, print & download
- Redistribute or republish the final article
- Text & data mine
- Translate the article (private use only, not for distribution)
- Reuse portions or extracts from the article in other works
- Sell or re-use for commercial purposes
- Distribute translations or adaptations of the article
Elsevier's open access license policy