Incorporating patient‐reported outcomes (PROs) into dialysis policy: Current initiatives, challenges, and opportunities

Abstract

Governments at national and state levels regulate dialysis care in the United States to ensure safe practices, and continually elevate the quality of care. An objective of these regulatory policies is the independent evaluation of dialysis unit outcomes by patients, caregivers and the community to facilitate choices as well as to advance equal access to high quality dialysis care. These polices recognized decades ago that it was fundamental to include the patient perspective in the assessment and evaluation of dialysis care quality by requiring both individual and aggregate patient reported outcomes (PROs). Although there is support for integrating the patient perspective, concerns persist about the implementation of these polices including selection of PRO measures, administration timing and reach, as well as interpretation of results including benchmarking to permit comparisons across organizations. The experience from the early adoption of PROs into dialysis policies in conjunction with advances in electronic health records, personal data capture and monitoring, and analytics is poised to address these concerns. The dialysis community has the opportunity to lead the way in innovation related to PRO implementation not only in kidney disease care, but also for other healthcare conditions or contexts such as oncology, surgical and acute care.

Funnel plots of patient‐reported outcomes to evaluate health‐care quality: Basic principles, pitfalls and considerations

“…In the last decade, health care has shifted towards a more patient‐centred and value‐based approach, resulting in a stronger focus on health‐care outcomes 1,2 . Reasons for measuring outcomes are to gain insight into hospital performance and encourage health‐care quality improvement 2‐4 . Quality can be improved, for instance, because hospitals can learn from each other (ie, adopt best practice) and initiate improvement strategies 3,4 .…”

“…Reasons for measuring outcomes are to gain insight into hospital performance and encourage health‐care quality improvement 2‐4 . Quality can be improved, for instance, because hospitals can learn from each other (ie, adopt best practice) and initiate improvement strategies 3,4 . Patients can also make better informed decisions, for example, in which hospital to start dialysis treatment 3‐5 .…”

“…Quality can be improved, for instance, because hospitals can learn from each other (ie, adopt best practice) and initiate improvement strategies 3,4 . Patients can also make better informed decisions, for example, in which hospital to start dialysis treatment 3‐5 . Additionally, strategies by insurance companies (eg, value‐based payment) and government (eg, regulations on quality) can also reward and stimulate higher quality of care 3,4 …”

“…For example, differences across dialysis centres with regard to patients' age or sex should be taken into account (see also Supporting Information, Table S1). The difficulty is selecting a sufficient set of true case mix factors (eg, no mediators) to correct for, 15 which may be even more difficult for PROs, given the multidimensional nature of outcomes such as HRQOL (see Box 2 for further explanation) 3,16 . Moreover, for both clinical outcomes and PROs, some residual confounding is inevitable.…”

“…To make relevant comparisons, there must also be room for improvement (ie, variation across hospitals) and actionable care plans must exist. Umeukeje et al 3 provide an example where pain is considered not to be included as performance‐indicator in dialysis patients because pain management strategies are lacking and there is too little room for improvement (90% of dialysis centres had the highest score possible). Hence, although pain is a relevant PRO for routine care, in this example, pain seems unsuitable for health‐care quality evaluation.…”