Perspectives on blood pressure by patients on haemo- and peritoneal dialysis

Aim: The management of blood pressure in patients requiring dialysis remains challenging and controversial. This study aimed to describe the perspectives of patients treated with peritoneal or haemodialysis regarding blood pressure, to inform patient-centred management. 

Methods: We conducted a secondary thematic analysis of qualitative data from multiple data sets derived from the Standardised Outcomes in Nephrology (SONG) initiative. We extracted and analysed the responses of adult patients (aged 18 years or over) on haemodialysis and peritoneal dialysis, and their caregivers. Qualitative data were extracted from 26 focus groups, two international Delphi surveys and two consensus workshops completed as part of the SONG-Haemodialysis and SONG-Peritoneal dialysis projects. 

Results: Collectively, the studies involved 644 patients and caregivers from 86 countries. We identified four themes: helpless and incapacitated (including the subthemes of disabling and debilitating symptoms, limiting ability to work, fear of “crashes” – a sudden drop in blood pressure – forced to depend on others); dismissed and ignored (disregarded as a problem, lacking information, education and reassurance); escalating medication burden; and taking control for improved self-management (determining thresholds in fluid management, establishing a routine for proactive monitoring). 

Conclusion: Blood pressure symptoms are debilitating for patients on dialysis and exacerbated by a perceived lack of information about how to understand and manage these symptoms. More patient-centred management of blood pressure, particularly symptom-causing blood pressure, in patients on dialysis is likely to substantially improve patient satisfaction and outcomes.