The use of patient-reported outcome measures in primary care: applications, benefits and challenges

Abstract

PROMs use in primary care has expanded from simply describing patient populations to contributing to decision-making, in response to the increasingly complex, ever-changing healthcare environment. In Alberta, primary care is organized into primary care networks (PCNs), where family physicians are grouped geographically and supported by allied health professionals. PCNs implement programs and services in response to local population health needs with frequent evaluation, often incorporating PROMs for this purpose. As PCN programs and services vary greatly across Alberta, so do their use of PROMs. An area of commonality is the use of the EQ-5D-5L instrument; 29 out of 41 PCNs are registered and licensed to use the instrument. It is often administrated by paper, pre- and post-program, and in combination with other specific measures, depending on the program or target population. Some PCNs share programming and therefore outcome measurement, but often the selection, implementation (including training and administration procedures) and evaluation/reporting of PROMs are unique to the PCN. As well, data analysis is largely dependent on the size and capacity of the PCN. Using PROMs for PCN program evaluation supports clinical understanding and complements clinical outcomes. PROMs describe the population attending a program, as well as provide an element of consistency when examining trends across multiple programs or timepoints. This contributes to inquiries and decisions around program development, components, administrative features, resource allocation and delivery. Challenges of PROMs use in primary care include the absence of cohesive data capture technology. This limits data capabilities and presents difficulties with data fidelity, storage, export, and analysis. Additionally, this real-world application lacks a control arm and presents methodological challenges for comparative research purposes. Furthermore, capturing long term patient outcomes poses administrative challenges of multiple follow ups. More research is required into best reporting mechanisms to ensure the data is used to its full potential. To overcome these challenges, leadership and clinician engagement are key. As well, determining consistent PCN PROM reporting requirements will ensure data are comparable across PCNs and contribute to provincial level evaluations, further supporting the movement towards overall health system quality improvement.

Equitable Integration of Patient-Reported Outcomes Into Clinical Practice—Opportunities, Challenges, and a Roadmap for Implementation

“…The use of PROMs in clinical care has demonstrated benefits for multiple stakeholder groups on many levels—the individual level (eg, use between patients and clinicians to inform decisions), the system level (eg, use on a health system level for quality improvement), and the population level (eg, use on a population health level to identify vulnerable patient groups). 6 Although the principles and benefits of PROM use are recognized at each level, this review focuses specifically on the use of PROMs to improve clinical care at the micro/individual level. This review correspondingly frames the discussion of PROM-related opportunities using the conceptual model set forth by Greenhalgh et al 7 that details the causal pathways by which the provision of PROM information to surgeons improves patient satisfaction, experience, and outcomes.…”

Word of mouth from an adolescent with cancer in the convalescence stage to exploring their mental health after treatment

“…Investigating the young adult population cancer in convalescence is very important as their psychological health can seriously disrupt their abilities to establish functional roles in society 14 . Literature on this area of psychological health after cancer treatment is mainly related to middle-aged and older breast cancer survivors 7 ; the young adults’ experiences during cancer treatment remain poorly understood 15 .…”

Young Adults’ Lived Experiences with Cancer-Related Cognitive Impairment: An Exploratory Qualitative Study

“…Another limitation of previous studies pertains to the methods used to assess CRCI, which have largely been quantitative in nature and thus provide limited insight into young adults’ lived experiences with this adverse effect. Given the clinical relevance of patient-reported outcome measures [ 11 ], self-report questionnaires are often used for cognitive assessment; the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30; [ 12 ]), Functional Assessment of Cancer Therapy—Cognitive Function (FACT-Cog; [ 13 ]), and Cognitive Failures Questionnaire [ 14 ] are some popular examples. However, whilst most have shown evidence of reliability and validity [ 15 ], there are critical conceptual issues related to the content of the self-report measures employed in oncology research.…”