The care trajectories leading to emergency dialysis start: a qualitative study

INTRODUCTION: Emergency dialysis start (EDS) is an important issue to understand and tackle in Chronic Kidney Disease (CKD) care. Late referral, absent previous nephrology care and higher comorbidity scores have been associated with EDS. However, how those factors happen and contribute to EDS remains unexplored. We conducted a qualitative study in France to identify and describe the mechanisms that shape the trajectories that lead to EDS, using patients, GPs and nephrologists perspectives. METHODS: Three groups of participants were recruited in Brittany, north-west France: Patients who started dialysis in emergency between 2017 and 2019, GPs and nephrologists. Maximum variation sampling approach was used based on patients’ socio-economic profiles and GPs’ and nephrologists’ years and settings of practice. Semi-structured interviews were conducted between 2017 and 2020. A crossed thematic analysis between the 3 groups of transcripts was performed, informing how EDS trajectories come to be. RESULTS: Twenty patients, 12 GPs and 18 nephrologists were interviewed. Five themes were identified: 1) Learning about dialysis, 2) Dialysis and nephrology care representations: a) an unacceptable biographical disruption, b) a dreadful invasive machinery, c) a straw that breaks the camel's back, 3) The gap between the “illness” perceived and the “disease” treated, 4) Slipping through the primary care prevention net, 5) the unavoidable unpredictability of CKD course. CONCLUSIONS: This study shows how EDS is, in part, the results of an interplay between patients’ constructed representations of dialysis, relation with the medical sphere and CKD physiopathology. The results suggests a need for evaluation of kidney replacement therapy education programs and reinforcement of psychological care. Finally, results support ambitious mass prevention campaign focused on kidney health to counter the persistent negative representation of dialysis and seal off prevention cracks. KEY MESSAGES: • Emergency dialysis start is the result of an interplay between patients’ constructed representations of dialysis, relation with the medical sphere and CKD physiopathology. • Evaluation of kidney replacement therapy education programs and reinforcement of psychological care as well as an ambitious prevention campaign focused on kidney health could contribute to reduce EDS.