Being diagnosed with kidney disease can be a huge challenge, both for the patient and those people around them

This disease-centric approach may be inadequate as it does not satisfactorily reflect patients’ priorities and values

Patients also need to have meaningful involvement in the management and treatment of their disease

The World Kidney Day Steering Committee for 2021 calls to include “life participation” as a key focus in the care of patients with Chronic Kidney Diseases (CKD), leading to the ultimate goal of living well with kidney disease.

Quality of life is gradually being recognised as a treatment outcome. The expected outcome of treating a disease should not only be about eradicating the disease, rather it should also include restoring, or enhancing the quality of life in the patient. Absence of the disease alone does not ensure wellness and merely living and living well are two very different approaches to life. It’s time that patients with chronic diseases are guided in aiming to live well, rather than to simply exist. 

The World Kidney Day Steering Committee has declared 2021 the year of “Living Well with Kidney Disease”. This has been done in order to both increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging life participation. Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease and their caregivers should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities. In chronic illnesses, it is not only the patient that suffers. The caregivers and family members too share the disease burden, and healing is required for the whole unit.

According to the World Kidney Day Organization, “Being diagnosed with kidney disease can be a huge challenge, both for the patient and those people around them. Its diagnosis and management, particularly in advanced stages of kidney disease, impacts severely upon their lives by reducing their, and that of family and friends, ability to participate in everyday activities like work, travel and socialising whilst causing numerous problematic side effects  – e.g. fatigue, pain, depression, cognitive impairment, gastrointestinal problems and sleep problems.”

The current status quo in kidney disease management and treatment aims to prolong longevity by preserving kidney function and delivering relief from kidney failure regardless of the efficacy for overall kidney disease management. This disease-centric approach may be inadequate as it does not satisfactorily reflect patients’ priorities and values. People living with kidney disease tend to want to be able to live well, maintain their role and social functioning, whilst maintaining normality and a sense of control over their health and wellbeing.

 Patients also need to have meaningful involvement in the management and treatment of their disease. This leads to patients frequently perceiving treatment as something that is being imposed, and out of their control. For patients to be more content and engaged with regard to their treatment, in order to improve clinical outcomes, they need to feel that their symptoms are effectively managed and to be intrinsically motivated to become active participants in their treatment. Ensuing life participation is equally important for both patients and their care-partners, as opposed to feeling constrained by the current approach to treating kidney disease.

Treating a disease, especially chronic diseases, cannot be accomplished by drug therapies alone. A holistic approach is required to cater to all aspects of patient care, including physical, psychosocial and emotional wellbeing. In many developing countries such as Sri Lanka, the other factors beyond treating the physical illness is seldom explored. The classic patient – medicine – cure mindset needs to be modified to be on par with the global treatment advances, that now include quality of life as a vital component.