Home Dialyzors United interviewed Dawn Edwards: 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, restoring or substituting 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, 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. The status quo approach also removes patients’ agency as they lack meaningful involvement in the management and treatment of their disease. This in turn leads to patients frequently perceiving treatment as being imposed, punitive and out of their control.
For patients to be more content, engaged and constructive with regard to their treatment, and thereby improving 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 consumed and constrained by the current approach to treating 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. Moreover, 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 also call for greater emphasis on a strengths-based approach which encompasses strategies to support patient resilience, harness social connections, build patient awareness and knowledge, facilitate access to support, and establish confidence and control in self-management. 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.