Establishing a Supportive Care Register Improves End-of-Life Care for Patients with Advanced Chronic Kidney Disease

Abstract

Background: End-of-life care for patients with advanced chronic kidney disease (CKD) is recognised as an important area for improvement. These patients have a significant mortality and, although some is unpredictable, there is a role for the nephrology multi-disciplinary team (MDT) and palliative care physicians to engage in advance care planning and support patients to discuss their preferences. Methods: Retrospective and prospective data were obtained to conduct a comparison observational study to assess the impact of introducing a supportive care register on the end-of-life care for patients with advanced CKD. An electronic supportive care register was implemented. This required a programme of multi-disciplinary staff education, collaborative working with Palliative Care to establish renal-specific protocols and dissemination activities. The impact of the intervention was assessed by analysing all deaths in two six-month periods where all those with an eGFR <15 ml/min/1.73 m² at the time of their death were included. Results: A total of 91 patients were included. Post-intervention, there was a 25.4% (95% CI: 6.5-44.3%, p = 0.008) improvement in patients having a documented discussion about end-of-life planning. There was also a 19.7% (95% CI: 4.0-35.5%, p = 0.01) improvement in establishing the place of death. All patients who expressed a preferred place of death died there. The intervention increased engagement with the wider MDT and led to significant improvements in access to specialist palliative care services. Conclusions: These results show that the interventions implemented to introduce a supportive care register resulted in meaningful improvements to the end-of-life care for patients in our region with advanced CKD.

Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review

“…Five out of six registries assessing diabetic care demonstrated at least one improvement in processes of care [ 59 , 64 – 66 , 74 ]. Most studies (n = 11) used a before-after study design [ 41 , 64 – 73 ]; only two studies were experimental in design with one assessing the impact of a registry on diabetes management and the other on tobacco smoking. Both showed significant improvement in health outcomes after implementation of the registry [ 59 , 60 ].…”

“…We found that registries play an important role in care management processes through generating performance feedback reports to physicians [ 59 , 66 ], helping to identify patients who are not receiving treatment in accordance with guidelines [ 69 , 74 ], creating a trigger for action by physicians [ 65 , 74 ], creating a reminder for patients [ 59 , 64 ], identifying high-risk patients so they can be more closely monitored [ 82 ] and reducing regional differences [ 71 ]. Registries have provided demonstrable improvement in processes of care and clinical outcomes for patients with chronic diseases [ 73 , 83 , 84 ]. In our review five different studies demonstrated that use of registries as tools for physician’s reminder, patient recall, structured care, audit, and progress notes can improve documentation which, in turn, leads to improvement in diabetic care [ 59 , 64 – 66 , 74 ].…”