A review of the barriers to using Patient‐Reported Outcomes (PROs) and Patient‐Reported Outcome Measures (PROMs) in routine cancer care

Abstract

Introduction: Patient-reported outcomes (PROs) are direct reports from patients about the status of their health condition without amendment or interpretation by others. Patient-reported outcome measures (PROMs) are the tools used to measure PROs; they are usually validated questionnaires patients complete by self-assessing their health status. Whilst the benefits of using PROs and PROMs to guide real-time patient care are well established, they have not been adopted by many oncology institutions worldwide. This literature review aimed to examine the barriers associated with using PROs and PROMs in routine oncology care. Methods: A literature search was conducted across EMBASE, Medline and CINAHL databases. Studies detailing barriers to routine PRO use for real-time patient care were included; those focusing on PRO collection in the research setting were excluded. Results: Of 1165 records captured, 14 studies informed this review. At the patient level, patient time, incapacity and difficulty using electronic devices to complete PROMs were prominent barriers. At the health professional level, major barriers included health professionals' lack of time and knowledge to meaningfully interpret and integrate PRO data into their clinical practice and the inability for PRO data to be acted upon. Prominent barriers at the service level included difficulties integrating PROs and PROMs into clinical workflows and inadequate information technology (IT) infrastructures for easy PRO collection. Conclusion: This review has outlined potential barriers to routine PRO use in the oncology setting. Such barriers should be considered when implementing PROs into routine clinical practice.

Digital Phenotyping and Patient-Generated Health Data for Outcome Measurement in Surgical Care: A Scoping Review

“…The electronic capture and utility of PROMs has transformed the evaluation of health outcomes in surgical research, partly due to well-defined surgical pathways and time points during the preoperative baseline to postoperative recovery and rehabilitation [ 12 , 16 ]. However, the adoption of PROMs in clinical practice is limited by the burden placed on patients to interpret and complete surveys, is often restricted to the clinical encounter, and associated with several administrative and logistical barriers in sustaining longitudinal data collection, especially in busy, resource-limited settings [ 15 , 17 ].…”

Electronic Patient-Reported Outcomes After Thoracic Surgery: Toward Better Remote Management of Perioperative Symptoms

“…Efforts should now be focused on the implementation of routine remote ePRO monitoring as part of the peri-surgical pathway. One of the main barriers in implementing ePRO is the clinicians' knowledge to meaningfully interpret and integrate PRO data into their clinical practice 16 ; therefore, research such as this from Avery and colleagues is pivotal for benchmarking and in addressing these issues. Ultimately, the potential use of ePROs collected for routine individual monitoring will also help in evaluating and improving thoracic surgery service quality on a population level.…”

Evidence for the routine collection and clinical utilisation of patient‐reported outcomes is compelling: It is time to jump on the bandwagon

“…8 Together, the three papers discussed here make a compelling case for health services to consider implementing PROs. For centres which have not yet adopted ePRO systems, a very pragmatic starting point is to undertake an assessment of their local barriers, guided by the Nguyen et al 4 review, and involve staff at all levels within the centre in workshops to identify potential strategies to address barriers. Another important factor with PRO implementation is considering whose role it is to administer and act upon PROs.…”

“…A critical first step to supporting oncology institutions to implement and use PROs in routine care is to fully understand the barriers to this occurring. In their literature review of 14 eligible studies, Nguyen et al 4 identified barriers at the patient, health professional and service levels. As detailed in their paper, the patient barriers include time, incapacity, and difficulty using electronic devices to report their outcomes.…”

“…Inevitably, some barriers will be more challenging to address and may require significant resources (e.g. infrastructure), but others can potentially be addressed more readily, through strategies offered by Nguyen et al 4 in their discussion.…”