Abstract
KEY POINTS: Six themes have been identified reflecting the perspectives and experiences of adults with AKI. Patients are unaware of AKI diagnosis and prognosis, feel that care is fragmented, and are burdened by treatment. Providing education, reducing treatment burden, and ensuring excellence in care may help to address patients' needs and improve AKI management. BACKGROUND: AKI is associated with higher risk of mortality and progression to CKD. The challenges and uncertainty in the diagnosis, self-management, and prevention of AKI can be distressing for patients. We aimed to perform a systematic review of qualitative studies/surveys that reported the perspectives and experiences of adults with AKI. METHODS: We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to January 17, 2024. Thematic textual analysis was used to synthesize the findings. RESULTS: We included 20 studies (ten qualitative studies, ten surveys) involving 867 participants. We identified six themes: navigating the unknown (an unexpected and unfamiliar diagnosis, tossed about in a fragmented system, and dismissed and vulnerable at discharge); impaired life participation, relationships, and well-being (limiting ability to do daily activities and straining relationships); unbearable and unsustainable treatment burden (adding strain on family members, financial pressure because of medical expenses, and cumulative stress of ongoing monitoring); uncertain whether recovery is attainable (possible permanence of kidney damage, fear about nephrotoxic medications, and terrified about the need for dialysis); less consequential than other health priorities (short term and reversible and prioritizing other comorbidities and conditions); and empowered in managing own health (focusing on optimizing kidney health, gaining confidence in self-management, and reassured with social and clinical support). CONCLUSIONS: Patients may be unaware of their AKI diagnosis and prognosis, feel that care is fragmented, and be burdened by treatment. Providing education, alleviating treatment burden, and implementing a comprehensive model of care may help to address the needs of patients with AKI leading to better outcomes.