Patients need more information, support to better self-manage CKD
In a published study, patients with chronic kidney disease identified three major themes regarding what might enhance their self-management capabilities. These included greater disease-related knowledge, improved information-sharing abilities and strong support networks.
Maoliosa Donald, MSc, of the departments of medicine and community health sciences at the University of Calgary, and colleagues stressed the benefits of self-management — including delaying CKD progression and improving both quality of life and health outcomes — while also addressing that this is challenging to accomplish.
“Self-management is a complex set of processes and tasks that involves developing knowledge, skills and confidence to manage the disease; identifying and accessing resources and supports; and learning to cope with the condition, including in terms of its impact on an individual’s life and the emotional consequences of the illness,” they wrote. “Three research priority activities involving patients, researchers, clinicians and decision- makers in the United States, Australia and Canada identified the need for strategies to help patients self-manage their CKD as one of the top 10 research priorities.”
To develop potential interventions to improve self-management, researchers conducted patient-interviews through focus groups and telephone interviews and found that patients most desired knowledge, information sharing and tangible supports.
Patients reported that knowledge would make them feel capable and confident in caring for themselves. Knowledge included having an awareness and understanding of CKD (eg, cause, risk factors and available treatments), as well as personalized information related to the specific cause and stage. Personalized diet plans, nonpharmological alternatives (eg, yoga and aromatherapy), financial implications and consequences on both mental and physical health were also important to patients for building the knowledge base.
With knowledge as a cornerstone to taking an active role in their care, patients further reported the importance of information sharing, noting that information was often hard to access or understand. Participants suggested information (eg, health records and how to manage the disease) be more easily accessible through online platforms, while also being written in a comprehensible way for someone not in the medical community. In addition, patients reported health care providers either offered them too much information after initial diagnosis (and, thus, they were overwhelmed) or too little so that no direction was given.
Finally, patients said that coordinated support from their families, community and health care providers was a crucial factor for self-management. Family was helpful for practical tasks (eg, finding resources and assisting with driving and cooking) and the community helped them feel less isolated, while providing a distraction from disease-related burden. Patients also emphasized the benefit to building relationships with their health care providers — establishing trust and comfort — to make it easier to ask questions and communicate care preferences.
“Consistent with previous research, we found that CKD-specific information and psychosocial and practical support were recommended to manage health and deal with the impact of CKD on lifestyle and family,” the researchers wrote.
They suggested that it could be beneficial to use electronic health tools to provide information, resources and services to patients and their caregivers in future CKD self-management interventions, concluding: “Living with a chronic illness is a self-management process in which individuals learn to cope and integrate the illness into the context of their lives. For both patients and their caregivers, they wanted the patient to ‘live well,’ not just ‘live with the disease.’” – by Melissa J. Webb
Disclosures: The authors report no relevant financial disclosures.