By Dr Areefa Alladin of the Kidney Foundation of Guyana
Chronic Kidney Disease (CKD) affects about 10 per cent of the world’s population (about 700 million people) and causes about 1.5 million deaths each year. (COVID has infected 13 million people with 2.5 million deaths in 14 months). CKD is a major public health problem because affected persons have reduced life span, reduced quality of life and kidney failure requires dialysis or transplant which are both not readily available and very expensive.
Most of the burden of CKD is among the poorer nations where there is limited access to healthcare among other factors that make these nations more vulnerable.
World Kidney Day is observed on the second Thursday of March with a month of activities aiming to promote awareness on CKD and building support for patients and families.
The Kidney Foundation of Guyana is a Non-Governmental Organisation (NGO) that engages in public sensitisation on chronic kidney diseases, providing educational materials for patients and health professionals on kidney diseases. Preventing chronic kidney disease and slowing the progression of CKD may improve the lives of 10 per cent of the Guyanese population. The Kidney Foundation of Guyana (KFG) is directing its efforts towards patient education and empowerment. We believe that investing in patient wellbeing and providing support is a cost-effective strategy that may reduce the need for dialysis and transplant.
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, impact severely upon their lives by reducing their ability, and that of their family and friends, to participate in everyday activities like work, travel and socialising whilst causing numerous problematic side effects such as fatigue, pain, depression, cognitive impairment, gastrointestinal issues and sleep problems.
People living with kidney disease tend to, above all, want to be able to live well, maintain their role and social functioning, whilst maintaining some semblance of normality and a sense of control over their health and wellbeing.
We want patients to be more content, engaged and constructive with regard to their treatment, and thereby improving clinical outcomes. Patients need to feel that their symptoms are effectively managed and 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 consumed and constrained by kidney disease.
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 – including those who depend on dialysis and transplantation – and their care partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.
The World Kidney Day Steering Committee calls for the inclusion of life participation as a key focus in the care of patients with CKD and as a building block towards delivering the ultimate goal of living well with kidney disease.
Patients with CKD and their family members or other care partners should be empowered to achieve the health outcomes and life goals that are meaningful and important to them. This will require patients to understand their role, to have the necessary knowledge to be able to engage with clinicians in shared decision-making, as well as developing the skills and support for effective self-management.
We further advocate for strengthened partnership with patients in the development, implementation and evaluation of interventions for practice and policy settings, that enable patients to live well. This needs to be supported by consistent, accessible and meaningful communication.
We call for more effective and more integrated and holistic symptom management for all patients with kidney disease beyond traditional kidney therapies including effective strategies to identify and manage symptoms that cause suffering including pain, sleep issues, anxiety, depression, stress, mobility, frailty and others and; ask for more education and management strategies to alleviate these symptoms so that patients and their care partners can have a better health-related quality of life.
We must move beyond the status quo and advance patient-centeredness in research, practice and policy. Patient empowerment, partnership and improved communications, combined with a paradigm shift towards a strengths-based approach to care, can inspire confidence and hope in patients that they can live well with CKD.
The Kidney Foundation of Guyana now has persons with chronic kidney disease, dialysis and transplant patients and caregivers on its Board. We think that patient advocacy and involvement is essential for a patient-centred approach to healthcare. Our Board consists of Chairman Major General Ret Joseph Singh, Vice Chair, Dr Areefa Alladin; Secretary, Dr Maranatha Persaud, Assistant Secretary/Treasurer, Dr Nicolas Elliott; Treasurer, Dr Thorne. Other members include Dr Jarrel Watson, Dr Neil Jafar, Nadine Luthers-Williams, Ivonnna Samaroo, Roshini Razack, Somant Heeralall, Allana Heeralall, Richard Rampersaud, Dr Kevon Tracy and Dr Tariq Ramsaroop. We encourage the public to reach out to the KFG on its Facebook page Guyana Kidney Foundation for more information. We welcome volunteers, new ideas and collaboration geared at reducing the impact of CKD in Guyana.
