What Is the Main Idea?
World Kidney Day is a yearly campaign to raise awareness about kidney health. For 2021, the steering committee has chosen the theme of ‘Living Well with Kidney Disease’. In the article ‘Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere’ published in the American Journal of Nephrology, the authors discuss their campaign ideas.
What Else Can You Learn?
- Depending on the stage of the disease, treatments can range from lifestyle changes to dialysis and kidney transplant.
- The disease and treatments have a huge impact on the daily life of a patient and their care-partners.
- Patients with chronic kidney disease need to be empowered and engaged. They should learn to manage their condition and be able to thrive by participating in regular life activities.
- Empowerment of patients in lower and lower-middle income countries is a challenge.
Chronic Kidney Disease
Chronic kidney disease is a condition where the kidney’s function gradually deteriorates. This means that the kidney does not filter out waste and excess fluid properly, causing its accumulation, and related issues. Early diagnosis of the disease can help in early interventions including lifestyle changes, such as diet. If the disease worsens, dialysis or a kidney transplant can be required. In all cases, chronic kidney disease requires the patients and their caretakers to adapt to a new normal, which can create constraints in their daily living and impair their quality of life.
World Kidney Day (WKD) 2021
The International Federation of Kidney Foundation – World Kidney Alliance (IFKF-WKA), in a joint initiative with the International Society of Nephrology, run a global campaign, World Kidney Day, to raise awareness about kidney health. It was held on March 11th in 2021. In the article, the authors discuss the theme of 2021, ‘Living Well with Kidney Disease’, and its implications. In this campaign, they specifically highlight ways to empower the patient and care-partners through education and engagement. The authors further emphasize this requirement for patients everywhere, including low and lower-middle income countries.
Life Participation and Patient Empowerment
A study, conducted by Standardised Outcomes in Nephrology (SONG) spanning 70 countries and 9,000 patients, family members and healthcare workers, found that patients gave higher priority to symptoms and life impact, whereas healthcare workers gave priority to mortality and hospitalization. Therefore, along with research, the need to address the patient’s priorities and goals in this potentially lifelong disease has been recognized.
Life participation is the ability of a patient to go beyond just managing their health condition and to participate in daily activities like work, family responsibilities and social and recreational activities. In a study published in 2020, some patients specifically mention how they would like to not just live but also be able to do more in life. For achieving this, the World Kidney Day Steering Committee recommends that patient-related outcomes should be addressed in the context of life participation. Further, they report that it will help if regulatory agencies could use life participation as a metric for their studies. They also recommend that funding agencies provide focused grants on research towards life participation for chronic kidney disease patients.
Beyond life participation, patients can be empowered by educating them about their health. This will enable them to participate in decision making about their treatment and symptom management with their healthcare practitioners. The World Kidney Day Steering Committee also advocates strengthening patient engagement in research and policy making. Additionally, they believe in using an approach where instead of concentrating on the pathology and the problem, focusing on patient awareness, building support and similar strength-based ideas can help patients live healthier lives.
The care-partners, often being family members, play an integral role in the life of the patient. They are burdened with ensuring that the patient’s treatment is adhered to and enabling the patient towards life participation. In the process, the care-partners can be physically and mentally overworked. Often their own life participation is hampered. Therefore, the World Kidney Day Steering Committee recommends that empowering and engaging care-partners in treatment procedures, research and policy making are equally important.
Empowerment in Lower Income Settings
Patients in lower income settings often are entirely dependent on the healthcare provider and caregiver. Unfortunately, in many such places, there are not enough healthcare providers or specialists in the area to identify and address the chronic kidney disease early. Hence, these patients often get diagnosed at a late stage, which, along with health complications, increases their financial burden and drastically reduces quality of life. To address these issues, the World Kidney Day Steering Committee advises to:
- extend education to these patients and care-partners,
- utilize telehealth strategies for knowledge dissemination in both patient and kidney care providers,
- use strategies to encourage retention of kidney health providers in these settings.
This year, the World Kidney Day steering Committee would like to direct the policy makers to focus their plans and resources towards patient-centered wellness. Patient-centered wellness can come in the form of empowering them to make informed decisions, providing the appropriate support for treatment, offering required assistance for life participation and much more. Ensuring healthcare providers and researchers also engage with and address problems from the patients’ perspective will provide an immense health and cost benefit.
Note: Some of the authors of the paper declared that they have received honoraria and personal fees from pharmaceutical companies. It is normal for authors to declare this in case it might be perceived as a conflict of interest. More detail can be found in the Conflict of Interest statement at the end of the referenced paper.