Framework To Guide The Collection And Use Of Patient-Reported Outcome Measures In
            The Learning Healthcare System

Franklin, Patricia D.; Chenok, Kate Eresian; Lavalee, Danielle; Love, Rebecca; Paxton, Liz; Segal, Courtney; Holve, Erin

doi:10.5334/egems.227

Cited by 49 publications

(66 citation statements)

References 22 publications

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“…Several rich sources of PRO implementation guidance exist, including materials from the International Society of Quality of Life Research (ISOQOL) [13], the Patient-Centered Outcomes Research Institute (PCORI) [14], and the HealthMeasures website [15], as well as guidance based on existing implementations [5,[16][17][18]. In attempting to apply these resources to actual PRO implementation, however, several gaps were identified.…”

Section: Pro Implementation Planning Toolsmentioning

confidence: 99%

“…To gather planning information, interviews were conducted with 10 key leaders using questions tailored to respondents' clinical or institutional roles (interviews: n = 13), as shown in Table 1 [5,16,18,19]. Chicago area interviews were conducted by an informatics research assistant (n = 7) and by the Northwestern…”

Section: Using the Decision Toolsmentioning

confidence: 99%

“…Additional sources included the publications "Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations [21]," "Framework to guide the collection and use of patient-reported outcome measures in the learning healthcare system [18]," and the Consolidated Framework for Implementation Research (CFIR) [8], as well as guidance from a technical workshop [22] and implementation experts. In addition, the work Managing Technological Change: Organizational Aspects of Health Informatics highlighted crucial topics such as institutional support, governance, and conflict resolution [6].…”

Section: Number Of Interviewsmentioning

confidence: 99%

“…Franklin and colleagues identify four primary PRO uses that create value for key stakeholders: "(1) individual patient care decisions, (2) quality improvement, (3) value-based payment, and (4) population health and research" and also suggest that teams identify the value that PROs will provide prior to implementing PROcollection strategies [18]. Realizing that PROs have different value propositions within different clinics, our implementation teams sought to be as concrete as possible at this early stage about the aims of PROs in the clinic and the institution.…”

Section: Choose An Effective and Enthusiastic Clinician Champion To Mmentioning

confidence: 99%

“…Finally, success requires identifying key institutional leaders and ensuring that the institution is in broad agreement as to the value of PRO collection [5,16,18,19]. PROs in a clinic affect the institution and the hospital system at large through requirements for support, time, and governance, so key institutional leaders should be involved early and kept informed throughout the process.…”

Section: Sociotechnical Lessons Learnedmentioning

confidence: 99%

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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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Section: Pro Implementation Planning Toolsmentioning

confidence: 99%

Section: Using the Decision Toolsmentioning

confidence: 99%

Section: Number Of Interviewsmentioning

confidence: 99%

Section: Choose An Effective and Enthusiastic Clinician Champion To Mmentioning

confidence: 99%

Section: Sociotechnical Lessons Learnedmentioning

confidence: 99%

See 3 more Smart Citations

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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Validity of Patient-Reported Outcome Measures in Evaluating Nerve Damage Following Chemotherapy

Li,

Timmins,

Mahfouz

et al. 2024

JAMA Netw Open

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ImportanceChemotherapy-induced peripheral neuropathy (CIPN) is a substantial adverse effect of anticancer treatments. As such, the assessment of CIPN remains critically important in both research and clinic settings.ObjectiveTo compare the validity of various patient-reported outcome measures (PROMs) with neurophysiological and sensory functional measures as the optimal method of CIPN assessment.Design, Setting, and ParticipantsThis cohort study evaluated participants treated with neurotoxic chemotherapy across 2 cohorts using a dual-study design. Participants commencing treatment were assessed prospectively at beginning of neurotoxic treatment, midtreatment, and at the end of treatment. Participants who completed treatment up to 5 years prior were assessed cross-sectionally and completed a single assessment time point. Participants were recruited from oncology centers in Australia from August 2015 to November 2022. Data analysis occurred from February to November 2023.ExposuresNeurotoxic cancer treatment including taxanes, platinums, vinca-alkaloids, proteasome inhibitors, and thalidomide.Main Outcomes and MeasuresCIPN was assessed via PROMs (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire [EORTC-CIPN20], Functional Assessment of Cancer Therapy/Gynecological Cancer Group Neurotoxicity Questionnaire (FACT/GOG-Ntx), and the patient-reported outcomes version of the Common Terminology Criteria for Adverse Events [PRO-CTCAE]), neurological and neurophysiological assessment (Total Neuropathy Score and sural and tibial compound nerve amplitudes), and sensory measures (Grating orientation, Von Frey monofilament, and 2-point discrimination tasks). Core measurement properties of CIPN outcome measures were evaluated. Convergent and known-groups validity was assessed cross-sectionally following treatment completion, and responsiveness was evaluated prospectively during treatment. Neurological, neurophysiological, and sensory outcome measure scores were compared between those who reported high and low levels of CIPN symptoms using linear regressions.ResultsA total of 1033 participants (median [IQR] age, 61 [50-59] years; 676 female [65.4%]) were recruited to this study, incorporating 1623 assessments. PROMs demonstrated best ability to accurately assess CIPN (convergent validity), especially the PRO-CTCAE composite score (r = 0.85; P &lt; .001) and EORTC-CIPN20 (r = 0.79; P &lt; .001). PROMS also demonstrated the best ability to discriminate between CIPN severity (known-groups validity) and to detect changes at onset of CIPN development (responsiveness), especially for EORTC-CIPN20 (d = 0.67; 95% CI, 0.52-0.83), FACT/GOG-Ntx (d = 0.65; 95% CI, 0.49-0.81) and the PRO-CTCAE (d = 0.83; 95% CI, 0.64-1.02). Other measures did not achieve threshold for convergent validity (α &lt; 0.7). Neurophysiological and sensory measures did not demonstrate acceptable responsiveness. In regression models, neurological, neurophysiological, and sensory outcome measures were significantly impaired in participants who reported high levels of CIPN symptoms compared with those who reported low levels of CIPN symptoms.Conclusions and RelevanceIn this cohort study of 1033 cancer patients, PROMs were the only measures to satisfy all 3 core measurement property criteria (convergent validity, known-groups validity, and responsiveness). These findings suggest that adoption of PROMs in clinical practice can equip clinicians with valuable information in assessing CIPN morbidity.

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Patient reported outcome measures: The impact of environment on VHI‐10 responses

Kinberg

Taree

Gray

et al. 2023

Laryngoscope Investig Oto

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Objective: A key outcome measure in the clinical evaluation of dysphonia is the Voice Handicap Index (VHI-10). The clinical validity of the VHI-10 was established from surveys administered in the physician's office. We aim to understand whether VHI-10 responses remain reliable when the questionnaire is completed in settings other than the physician's office.Methods: This is a prospective observational study conducted over a 3-month period in the outpatient laryngology setting. Thirty-five adult patients presenting with a complaint of dysphonia, which was symptomatically stable for the preceding 3 months, were identified. Each patient completed a VHI-10 survey during the initial office visit, followed by three weekly out-of-office (termed "ambulatory") VHI-10 surveys, over the course of 12 weeks. The specific setting in which the patient completed the survey was recorded (social, home, or work). The Minimal Clinically Important Difference (MCID) is defined as 6 points based on existing literature. T-tests and a test of one proportion were used for analysis.Results: A total of 553 responses were collected. Of these, 347 ambulatory scores (63%) differed from the Office score by at least the MCID. Specifically, 94 (27%) were higher than the in-office score by 6 or more points while 253 (73%) were lower. Conclusion:The setting in which the VHI-10 is completed affects how the patient answers the questions. The score is dynamic, reflecting effects of the patients' environment during completion. Utilization of VHI-10 scores to measure clinical treatment response is only valid if each response is obtained in the same setting.

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Framework To Guide The Collection And Use Of Patient-Reported Outcome Measures In The Learning Healthcare System

Cited by 49 publications

References 22 publications

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

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

Validity of Patient-Reported Outcome Measures in Evaluating Nerve Damage Following Chemotherapy

Patient reported outcome measures: The impact of environment on VHI‐10 responses

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