Davison S, Klarenbach S, Manns B, Schnick-Makaroff K, Buzinski R, Corradetti B, Short H, Johnson J. Journal of Patient-Reported Outcomes. First published May 22, 2018.

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Abstract:

Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients’ symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients’ health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients’ wellbeing is key to improving patients’ health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements.

Background:

Patients with kidney failure requiring dialysis experience a high symptom burden and severity and low health-related quality of life (HRQL). However, their symptoms are often under-recognized and under-treated by their health care providers. A standardized and patient-centered process of symptom screening may improve symptom detection and treatment. Patient-reported outcome measures (PROMs) are standardized instruments that capture patients’ reports of symptoms and impact of disease on functioning and/or HRQL. Routine administration of PROMs can be used to evaluate and monitor aspects of patients’ health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments.

Historically, Alberta Health Services (AHS) has delivered kidney care through two programs covering the northern and southern regions of the province. In 2010, Alberta Kidney Care – North (AKC-N) introduced PROMs to in-centre hemodialysis units with the initiation of a supportive care program. This program was intended to identify patients with high palliative care needs who may benefit from additional supportive or palliative care services. This involved routine screening of various indicators, including the modified Edmonton Symptom Assessment System (mESAS). Patients completed the mESAS monthly; results were recorded in the electronic medical record (EMR), but not reviewed with the patient, nor tied to any specific guidance to inform clinical management.

Alberta Kidney Care – South (AKC-S) had not implemented PROMs until recently, when AKC-N partnered with AKC-S and the Ontario Renal Network to design, pilot, and rigorously evaluate PROMs interventions for in-centre hemodialysis care. These interventions were designed based on successes from PROMs studies in oncologic settings intending to enhance communication between patients and clinicians, maximize patient participation in decision-making on reducing symptoms, improve HRQL, and facilitate self-management. From 2018—2020, a multi-centre cluster randomized controlled trial to evaluate the routine reporting of patient report outcomes in hemodialysis care, known as the EMPATHY trial, was implemented in in-centre hemodialysis units across Alberta and in select units in Ontario. In part, the EMPATHY trial aimed to provide a deeper understanding of how to optimize the implementation and use of PROMs in hemodialysis. In this article, we aim to describe how PROMs are implemented in in-centre hemodialysis units in Alberta, Canada.