Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature

Anatchkova, Milena D.; Donelson, Sarah M.; Skalicky, Anne; McHorney, Colleen A.; Jagun, Dayo; Whiteley, Jennifer

doi:10.1186/s41687-018-0091-0

Cited by 65 publications

(52 citation statements)

References 87 publications

(96 reference statements)

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“…For the results to be actionable, previous literature emphasizes that the data must be analysed and presented in a way that users can easily interpret and understand [24,55]. Interestingly, our study has shown that the analysis of the EQ-5D data from the registries has quite often been focused on the mean EQ-5D index value, which summarises the responses to the five questions into one overall index, based on country-specific value sets.…”

Section: National Quality Registry For Systemic Psoriasis Treatment (mentioning

confidence: 90%

Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

Ernstsson

Janssen

Heintz

2020

J Patient Rep Outcomes

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Background The Swedish National Quality Registries (NQRs) contain individual-level health care data for specific patient populations, or patients receiving specific interventions. Approximately 90% of the 105 Swedish NQRs include any patient-reported outcome measure, with EQ-5D being the most common. As there has been no general overview of EQ-5D data within the NQRs, this study fills a knowledge gap by reporting how the data are collected, presented, and used at different levels of the Swedish health care system. Methods All 46 NQRs with a license for the use of EQ-5D were included. Information was retrieved from the registries’ annual reports or from websites, using a template that was subsequently sent to each registry for completion and confirmation. If considered necessary, the contact was followed-up with an interview, either in-person or over the telephone. The uses of EQ-5D were categorised as denoting usage for follow-up, decision-making, or quality improvement in Swedish health care. Results In total, 41 of the 46 licensed registries reported collection of EQ-5D data. EQ-5D is most commonly collected within registries related to the musculoskeletal system, but it has a wide application also in other disease areas. Thirty-six registries provide EQ-5D results to patients, clinicians, or other decision-makers. Twenty-two of the registries reported that EQ-5D data are being used for follow-up, decision-making or quality improvement. The registries most commonly reported use of data for assessing interventions, and in quality indicators to follow-up the quality of care at a national level. Conclusion Collection and use of EQ-5D data vary across the Swedish NQRs, which may partly be accounted for by the different purposes of the registries. The provided examples of use illustrate how EQ-5D data can inform decisions at different levels of the health care system. However, there is potential for improving the use of EQ-5D data.

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Section: National Quality Registry For Systemic Psoriasis Treatment (mentioning

confidence: 90%

Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

Ernstsson

Janssen

Heintz

2020

J Patient Rep Outcomes

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“…Barriers to PRO implementation identified in the literature include a perception among clinicians that full integration is difficult in clinical practice due to workflow disruption [23]. Users also cite lack of actionability and technical challenges [19,23,24]. Barriers to use identified by our participants included language limitations, concerns about the release of data back to patients, and potential disparities among patients in data availability and usage of electronic PROs.…”

Section: Choose An Effective and Enthusiastic Clinician Champion To Mmentioning

confidence: 96%

“…Decision making begins immediately and continues even after implementation is formally completed. The choices made during implementation may have unintended consequences as new processes are activated [24]. Many decisions that may seem straightforward turn out to be quite challenging to make because choosing between several good paths requires multiple in-depth discussions and sometimes even experimentation with different options.…”

Section: Sociotechnical Lessons Learnedmentioning

confidence: 99%

Planning for patient-reported outcome implementation: Development of decision tools and practical experience across four clinics

Nelson

Anderson

Bian

et al. 2020

J. Clin. Trans. Sci.

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Introduction: Many institutions are attempting to implement patient-reported outcome (PRO) measures. Because PROs often change clinical workflows significantly for patients and providers, implementation choices can have major impact. While various implementation guides exist, a stepwise list of decision points covering the full implementation process and drawing explicitly on a sociotechnical conceptual framework does not exist. Methods: To facilitate real-world implementation of PROs in electronic health records (EHRs) for use in clinical practice, members of the EHR Access to Seamless Integration of Patient-Reported Outcomes Measurement Information System (PROMIS) Consortium developed structured PRO implementation planning tools. Each institution pilot tested the tools. Joint meetings led to the identification of critical sociotechnical success factors. Results: Three tools were developed and tested: (1) a PRO Planning Guide summarizes the empirical knowledge and guidance about PRO implementation in routine clinical care; (2) a Decision Log allows decision tracking; and (3) an Implementation Plan Template simplifies creation of a sharable implementation plan. Seven lessons learned during implementation underscore the iterative nature of planning and the importance of the clinician champion, as well as the need to understand aims, manage implementation barriers, minimize disruption, provide ample discussion time, and continuously engage key stakeholders. Conclusions: Highly structured planning tools, informed by a sociotechnical perspective, enabled the construction of clear, clinic-specific plans. By developing and testing three reusable tools (freely available for immediate use), our project addressed the need for consolidated guidance and created new materials for PRO implementation planning. We identified seven important lessons that, while common to technology implementation, are especially critical in PRO implementation.

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“…In addition, numerous studies have shown that remote symptom monitoring is feasible and acceptable to patients and providers 80,84,86,88‐93 . However, more work is clearly needed to identify characteristics of health systems, patient populations, and intervention designs to ensure that remote symptom monitoring is maximally efficacious 94,95 …”

Section: The Evidence Base For Clinical Monitoring Of Pghdmentioning

confidence: 99%

Innovations in research and clinical care using patient‐generated health data

Jim

Hoogland

Brownstein

et al. 2020

CA A Cancer J Clinicians

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Patient-generated health data (PGHD), or health-related data gathered from patients to help address a health concern, are used increasingly in oncology to make regulatory decisions and evaluate quality of care. PGHD include self-reported health and treatment histories, patient-reported outcomes (PROs), and biometric sensor data. Advances in wireless technology, smartphones, and the Internet of Things have facilitated new ways to collect PGHD during clinic visits and in daily life. The goal of the current review was to provide an overview of the current clinical, regulatory, technological, and analytic landscape as it relates to PGHD in oncology research and care. The review begins with a rationale for PGHD as described by the US Food and Drug Administration, the Institute of Medicine, and other regulatory and scientific organizations. The evidence base for clinic-based and remote symptom monitoring using PGHD is described, with an emphasis on PROs. An overview is presented of current approaches to digital phenotyping or device-based, real-time assessment of biometric, behavioral, self-report, and performance data. Analytic opportunities regarding PGHD are envisioned in the context of big data and artificial intelligence in medicine. Finally, challenges and solutions for the integration of PGHD into clinical care are presented. The challenges include electronic medical record integration of PROs and biometric data, analysis of large and complex biometric data sets, and potential clinic workflow redesign. In addition, there is currently more limited evidence for the use of biometric data relative to PROs. Despite these challenges, the potential benefits of PGHD make them increasingly likely to be integrated into oncology research and clinical care.

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Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature

Cited by 65 publications

References 87 publications

Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

Planning for patient-reported outcome implementation: Development of decision tools and practical experience across four clinics

Innovations in research and clinical care using patient‐generated health data

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