What Is the Main Idea?

Chronic kidney disease affects 1 in 10 adults worldwide. To bring awareness to the needs of the patients and to improve their quality of life, international kidney organizations together celebrate World Kidney Day. This year the focus of the World Kidney Day Joint Steering Committee is on improving health education and literacy for all. Thus, they have published the special report “Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy”, e.g. in the American Journal of Nephrology and in Nephron, describing the problems in this area and various ways of improving literacy. These have been summarized in this blog post.

What Else Can You Learn?

The blog post further describes how imparting health literacy requires more involvement by healthcare workers. Further, it explains how health literacy is also important to bring policy changes and advocacy and how patients can be involved in every step.

World Kidney Day

Celebrated every year on the second Thursday of March, World Kidney Day is organized by a joint committee formed by the International Society of Nephrology and the International Federation of Kidney Foundations. Their goal is to raise awareness of the disease and also advocate for better care for patients by all, including policymakers, healthcare workers, caregivers, and patients themselves. The World Kidney Day committee help by researching and assessing the current needs, clearly communicating them and feeding the information to organizations involved in policy changes at all levels, i.e. local, national and international. This year the theme is “Kidney Health for All”.

Chronic kidney disease, as described earlier, is a condition where the kidney’s function to eliminate waste deteriorates. It is a long-term disease that often deteriorates through 5 stages, as described in an earlier blog post. Since the condition requires a lot of lifestyle changes, it can reduce the quality of life for the patient and affect the families and caregivers. It indirectly puts a burden on society. Last year, the World Kidney Day campaign focused on improving the quality of life by focusing on patient-centric interventions and empowering care partners. This year, through their campaign “Kidney Health for All”, the organizers promote understanding kidney disease and health literacy to everyone involved.

Health Literacy and Chronic Kidney Disease

Health literacy is the ability of a person to understand kidney health problems and use the knowledge to make informed decisions and act accordingly. In the case of kidney diseases, the condition can change all the time, and thus the process needs to be dynamic. While practically, the need for health literacy makes sense, there are currently no studies to conclusively indicate that with a higher literacy rate, the mortality reduces or access to transplantation increases. This is because most studies researching literacy usually look at the functional knowledge of the patient but not at the patient-reported outcomes (which give more details of how the patient is responding to the disease or intervention). The World Health Organization has a Health Literacy Questionnaire which takes this into account. The World Kidney Day committee recommends using this questionnaire and also advocates for research to be conducted on how health literacy affects the disease outcome in the patient.

Co-Creating Interventions for Imparting Health Literacy

Since the disease and its progression is quite complex, low health literacy is a universal problem and does not depend on socio-economic status. It is also found that good interventions start from top-down by initiating policies regarding national health literacy action plans. While the need to improve health literacy is the same universally, the local culture needs to be considered when creating the actual plans and implementing them. An effective way of doing it would be through co-creation, where the participants, either patients or the health care workers, are involved in the process of creating the action plans in the desired location or community.

Involving Physicians and Healthcare Workers in Imparting Health Literacy

The main method currently used to impart literacy to kidney disease patients is web-based educational platforms targeted at individual patients and their caregivers. However, this is not enough. There is an important requirement and evidence for doctors and physicians who are treating the patients to participate actively in the education. This interaction will help patients understand their health better and adhere to the treatments. The patients themselves can then start participating in the decision-making by asking appropriate questions and advocating for their needs. This imparting of education needs to be extended by other healthcare workers, too, from nurses and physician assistants to dieticians, pharmacists, therapists, and other allied professionals. They often spend more time with the patient than the physicians and, hence, have more chance of explaining and empowering them with knowledge about the disease and the treatment.

Using the Power of Social Media

Social media is a powerful tool for communication that is now being used in kidney disease by many healthcare workers. There are a few ways it helps with literacy and communication:

  • by building networks of patient support groups and advocacy groups,
  • by communicating kidney health information,
  • for healthcare providers to build their networks and exchange information.

Since social media is in the public domain, it needs to be used responsibly. Some guidelines have been outlined in the above-mentioned special report which are mainly regarding maintaining the confidentiality of the patients, their conditions, the healthcare professionals, and the healthcare system itself.

Policy, Advocacy, Communication, and the Patient

Advocating and introducing policy changes are essential for systemic changes to happen in increasing the rate of health literacy. These cannot happen without authentic information and communication being provided by various stakeholders to the governments. After policies are created, formulating the problems, seeking scientific advice, and implementing the solutions taking into account the local cultural needs are vital. Finally, evaluation and making changes are important. At every step, education and communication become vital for the success of the intervention.

As patients, it is possible to participate in various steps like educating oneself, advocating for changes, joining support networks, participating in research studies and even engaging in social media. When done together with key kidney advocacy groups, a change can be brought about in the system to help patients with kidney disease lead better quality lives.

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