Patient-reported Outcome Measures In Clinical Care Research Articles

Clinical Utility of Patient-Reported Outcome Instruments in the Management of Pulmonary Hypertension: A Systematic Review

BackgroundDespite the greater sensitivity and specificity of disease-specific patient-reported outcome measures (PROM) to detect clinical change, only recently have such instruments been developed for pulmonary hypertension (PH), specifically pulmonary arterial hypertension (PAH) and chronic thromboembolic disease (CTEPH). Although these valuable tools are now being incorporated into clinical studies of PH, they have not yet reached widespread integration into routine clinical care. ObjectivesIn this systematic review, the authors assess the psychometric properties of PROM developed for PH, compare PROM with other clinical outcomes in PH, and address the utility of PROM in clinical care. MethodsThe authors performed a systematic search of papers published between January 1, 2006, and October 1, 2022, using the MEDLINE database to identify PROM developed and validated for PH. The identified PROM were found to have been developed only in groups with PAH and CTEPH. The authors evaluated the identified instruments according to established psychometric criteria. An additional search was performed to identify randomized controlled trials (RCTs) utilizing these PROM for comparison with clinical outcomes. ResultsFrom 527 papers retrieved, a total of 35 PROM were identified. Of these, 5 disease-specific instruments were included in the final analysis. While both CAMPHOR (Cambridge Pulmonary Hypertension Outcome Review) and emPHasis-10 performed well in patients with PAH and CTEPH with regard to their psychometric properties, emPHasis-10 demonstrated superior feasibility for use in clinical practice due to its concise format. The Pulmonary Arterial Hypertension–Symptoms and Impacts Questionnaire performed well in the authors’ analysis, though additional data is needed regarding interpretability and feasibility. ConclusionsEmPHasis-10 demonstrated strong psychometric properties and the greatest feasibility for clinical use. Further study assessing the integration of PROM into routine clinical care for PH is needed.

Operationalizing PROMs at the Musculoskeletal Practice and Policy Levels.

There continues to be growing interest in patient-reported outcome measures (PROMs), especially as value-based healthcare initiatives gain more traction. Although it is well-established that PROMs can be useful in clinical research, how to operationalize PROMs in clinical care and policy initiatives remains a "work in progress." Following the design of a comprehensive PROM administration and routine collection system, orthopaedic surgeons and their patients can reap the benefits of PROMs in practice through improved shared clinical decision-making discussions at the individual patient level and closer symptom monitoring on a large scale, with improved resource allocation at the population health level. Although certain government and payer incentives exist to collect PROMs at present, it is reasonable to assume that future policy initiatives will begin to use the actual PROM scores to assess clinical outcomes. Orthopaedic surgeons with interest in this area should prioritize their involvement in policy discussion to ensure PROMs are being used appropriately in novel payment models and policy endeavors so that they are both evaluated and compensated fairly. Specifically, orthopaedic surgeons can help ensure appropriate risk adjustment of patients when this is being done. Undoubtedly, PROMs will only become a larger part of musculoskeletal care moving forward.

Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges

PROMs collection is encouraged to involve patients in their health care The patient is the most reliable reporter of their symptoms, function and health-related quality of life, and can provide a holistic viewpoint of the benefits and risks of treatments or the severity of their conditions. Including the patient’s voice is critical for shared decision making and patient-centred care. Patient-reported outcomes (PROs) are defined as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else”.1 Patient-reported outcome measures (PROMs) are validated tools or questionnaires used to collect PROs. PROMs can complement traditional methods of clinical assessment, such as medical history and physical examination. The use of systematically collected PROMs to inform the delivery of care has been researched for many years,2, 3 with patient and health service impacts including reduced symptom burden, improved quality of life and increased survival of patients with advanced cancer,4 and reduced emergency department presentations in a broad population of patients with cancer.5 As research suggests, the collection of PROMs in the clinical setting could better measure differences in the effects of health care interventions.6 PROMs collection is encouraged in the 2020–25 National Health Reform Agreement to empower patients to be involved in their health care, improve care across the health system, and focus on outcomes that matter to patients.7 This article outlines recommendations from the Health Services Research Association of Australia and New Zealand (HSRAANZ) for implementing PROMs to guide clinical care. It also describes the challenges that may arise and future research that may assist in the effective implementation of PROMs. The recommendations presented in this article have been developed by members of the HSRAANZ PROMs Special Interest Group. Health systems are encouraged to provide incentives to clinicians and practices (eg, funding through the National Health Reform Agreement) to implement these measures effectively. This will motivate clinicians to routinely incorporate their patients’ perspective into their busy schedules. They will be more likely to implement PROMs if there is a benefit to patient care and their clinical practice, by making care easier and more timely and reducing the administrative burden. There are several challenges to consider when integrating PROMs into clinical care. As patients are recruited to PROMs collection, challenges can arise at different time points through the journey of their care (Box). It is important to note that while these exist, they are not insurmountable and can be overcome with further research on implementation in general practice and hospital clinics. Already, research into the integration of PROMs in clinical care in Australia has shown that implementation is feasible and effective. The New South Wales Agency for Clinical Innovation Patient Reported Measures program completed a pilot study8 and demonstrated the feasibility of implementing PROMs in local health districts, community services and general practice. Principles to support the analysis and use of PROMs have been developed.9 CALD = culturally and linguistically diverse population. CALD = culturally and linguistically diverse population. There is increased focus by health care systems to improve the value of care in terms of both value for investment and outcomes that patients value. Embedding patient-reported measures into the clinical setting is a key component towards achieving this. Further research is underway to evaluate the applicability and benefits and harms of collecting PROMs in routine clinical care.10 Future research should focus on investigating the feasibility of prompt feedback of patient-reported data to clinicians and incorporating the results of patient-reported measures into clinical practice. With advances in technology and increased engagement by clinicians and health systems, the implementation of PROMs will be a routine part of health care provision in the future. Rachael Morton receives salary support from a University of Sydney Robinson Fellowship and a National Health and Medical Research Council Investigator Award (APP1194703). The funding source has no role in the planning, writing or publication of this work. No relevant disclosures. Not commissioned; externally peer reviewed.

What Do Orthopaedists Believe is Needed for Incorporating Patient-reported Outcome Measures into Clinical Care? A Qualitative Study.

Patient-reported outcome measures (PROMs) are increasingly promoted for use in routine orthopaedic care with the expectation that if they are made available during encounters, they will be incorporated into clinical practice. We investigated an initiative in which PROMs were systematically collected and provided via the electronic health record but were infrequently used. In a qualitative study, we asked: (1) Why are PROM results not being used in clinical care when they are available to surgeons? (2) What aspects of PROMs are seen as useful for clinical care? (3) How are PROMs generally perceived by surgeons and orthopaedic leaders? A cross-sectional qualitative study was conducted in a single health system in an urban setting using semistructured interviews with a purposive sample of orthopaedic surgeons and leaders who would have substantial knowledge of and experience with the organization's PROM system, which was embedded in the electronic health record and developed for use in clinical care but was not being used. We included surgeons whose practices consisted of at least 90% patients with osteoarthritis, including surgical and nonsurgical management, and thus their patients would be completing PROMs surveys, or surgeons who were leaders in one of the three orthopaedic divisions in the health plan. The senior research manager for orthopaedics identified 14 potential participants meeting these criteria, 11 of whom agreed to study participation. Participants included nine surgeons and two orthopaedic leaders; the majority were men, with a median of 13 years of clinical practice. Study interviews were conducted by an experienced interviewer not known to participants, in private conference rooms in the healthcare setting, and a median (range) of 27 minutes (16 to 40) in length. A content analysis approach was employed for data analysis, with thematic inductive saturation reached in the analysis and attention to trustworthiness and rigor during the analytic process. Interviewees reported that PROM scores are not being used in patient clinical care because of logistical barriers, such as access and display issues and the time required, and perceptual barriers, such as concerns about patient understanding and the validity and reliability of measures. Surgeons preferred talking with patients about the personal outcomes patients had identified as important; most patients preferred to assess progress toward their own goals than PROMs scores for other people. Surgeons also identified changes that could facilitate PROM use and reduce barriers in clinical care, including pushing PROM scores to physicians' inboxes, developing inserts for physician notes, using easy-to-understand graphical displays, and engaging patients about PROMs earlier in the care process. Participants all agreed that PROMs in aggregate use are valuable for the organization, department, and individual surgeons, but individual patient scores are not. Despite the availability of PROMs, there are important barriers to incorporating and using PROMs in clinical care. Providing access to PROM scores without clearly understanding how and why surgeons may consider using or incorporating them into their clinical practice can result in expensive and underused systems that add little value for the clinician, patient, or organization. Involving front-line orthopaedic surgeons and leaders in shaping the design and structure of PROM systems is important for use in clinical care, but these interviewees seemed to see aggregate data as more valuable than individual patient scores.

"Unspoken Questions": A Qualitative Study of Rheumatologists' Perspectives on the Clinical Implementation of Patient-reported Outcome Measures.

To identify rheumatologists' views on perceived barriers and facilitators to the clinical implementation of patient-reported outcome measures (PROM). Semistructured interviews were conducted with academically affiliated clinical rheumatologists. Interviews were audio-recorded and transcribed. Deidentified transcripts were independently coded and analyzed for themes. Fifteen attending rheumatologists, 8 women (53%) and 7 men (47%) with a mean of 17.3 years in practice (range 5-43) at 2 urban academic medical centers, participated in interviews. Rheumatologists identified several barriers to integrating PROM in clinical care, highlighting physician buy-in and culture change as significant challenges beyond logistical considerations. They further underscored the lack of effective interventions and resources for addressing the domains of most interest to patients. Physicians also recognized significant benefits of PROM in clinical care, including contributing to the clinical impression by providing the patient perspective, and promoting agenda setting by uncovering "unspoken questions." They additionally noted that PROM could support treatment planning, build patient-physician relationships, and facilitate patient engagement. Participants suggested that technology, physician education, and team-based care could facilitate the effective implementation of PROM. Rheumatologists identified multiple mechanisms through which PROM could augment clinical care, but also noted several obstacles to implementation, questioning the added value of PROM and the limited availability of interventions to improve patient-centered outcomes. Programs seeking to successfully integrate PROM to enhance patient-centered care and meet quality benchmarks should prioritize physician buy-in and training, and provide resources to address the outcomes that are measured.

Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user's guide.

The use of patient-reported outcome (PRO) measures in clinical practice is increasing. Following the creation of a 'User's Guide to Implementing PRO Assessment in Clinical Practice' by the International Society for Quality of Life Research (ISOQOL), volunteers from ISOQOL sought to create a Companion Guide to assist health care providers with the scientific and practical considerations involved in implementing and using PRO measures in clinical care by using information from real-world case studies. This paper summarizes the key issues presented in the Companion Guide. Ten respondents, who were members of the ISOQOL's CP-SIG and worked in various clinical areas, participated in a survey or telephone interview. Participants were from Canada (n = 2), Denmark (n = 1), England (n = 2), Holland (n = 1), and the United States (n = 4). Based on the information provided by respondents, a Companion Guide was produced, organized according to the nine questions presented in the User's Guide. An additional section for key take-home messages was also provided. This guide provides examples of issues and considerations related to the implementation of PRO measures in clinical practice. Respondents provided insight into their experiences and emphasized that PRO initiatives were likely to be more successful if there is purposeful, designed integration into clinical practice, meaningful substantive engagement with all stakeholders and access to necessary organizational resources. The ability to leverage existing technology as well as realistic and stakeholder consensus-driven expectations for planning and timing were also key to the successful implementation of PRO measures.

ES8-3: Measuring Outcomes in Breast Reconstruction: The Patient Perspective.

Abstract In breast reconstruction, understanding patients’ perceptions of surgical results is of primary importance. As new reconstructive techniques continue to advance, surgeons and patients require high quality information on key outcomes such as patient satisfaction and quality of life. The need for meaningful data is further accentuated by concerns over healthcare expenditures and the increasing involvement of patients in their own surgical decision-making. Patient-reported outcome (PRO) measures are questionnaires specifically designed to quantify aspects of outcome such as patient satisfaction and health-related quality of life. When developed and validated according to internationally recognized standards, PRO measures can provide reliable and valid assessment of patient outcomes. Traditionally, PRO measures were used in clinical research alone; however, advances in psychometric methods have now facilitated the development of a new generation of PRO measures that are also useful in clinical care. This presentation will provide an overview of PRO research in breast reconstruction. The BREAST-Q, a new PRO measure for breast surgery patients, will be highlighted. Physicians will gain the necessary critical appraisal skills to interpret and apply evidence from PRO studies in their own clinical practice. Approaches to routine use of PRO measures in clinical care will also be described. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr ES8-3.