A narrative review of current evidence supporting the implementation of electronic patient-reported outcome measures in the management of chronic diseases

Aiyegbusi, Olalekan Lee; Nair, Devika; Peipert, John Devin; Schick‐Makaroff, Kara; Mucsi, István

doi:10.1177/20406223211015958

Cited by 38 publications

(33 citation statements)

References 78 publications

(205 reference statements)

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“…Hanson et al [ 34 ] mentioned that paper questionnaires or patient interviews typically impose high respondent burden and are rarely tested in real-world clinical settings for wide-scale application to learn about patients’ experiences. Thus, computer adaptive testing, which may tailor PRO items to individual patient needs, may be considered to reduce patient burden [ 40 , 41 ]. Two papers [ 6 , 37 ] discussed the issue of patient burden and both postulated minimisation of patient, clinician, and health care provider burden by limiting frequency and complexity of data collection to a necessary minimum.…”

Section: Resultsmentioning

confidence: 99%

Systematic review of guidance for the collection and use of patient-reported outcomes in real-world evidence generation to support regulation, reimbursement and health policy

Maruszczyk

Aiyegbusi

Torlińska

et al. 2022

J Patient Rep Outcomes

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Background Real-world evidence (RWE) plays an increasingly important role within global regulatory and reimbursement processes. RWE generation can be enhanced by the collection and use of patient-reported outcomes (PROs), which can provide valuable information on the effectiveness, safety, and tolerability of health interventions from the patient perspective. This systematic review aims to examine and summarise the available PRO-specific recommendations and guidance for RWE generation. Methods and findings Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, and websites of selected organisations were systematically searched to identify relevant publications. 1,249 articles were screened of which 7 papers met the eligibility criteria and were included in the review. The included publications provided PRO-specific recommendations to facilitate the use of PROs for RWE generation and these were extracted and grouped into eight major categories. These included: (1) instrument selection, (2) participation and engagement, (3) burden to health care professionals and patients, (4) stakeholder collaboration, (5) education and training, (6) PRO implementation process, (7) data collection and management, and (8) data analysis and presentation of results. The main limitation of the study was the potential exclusion of relevant publications, due to poor indexing of the databases and websites searched. Conclusions PROs may provide valuable and crucial patient input in RWE generation. Whilst valuable insights can be gained from guidance for use of PROs in clinical care, there is a lack of international guidance specific to RWE generation in the context of use for regulatory decision-making, reimbursement, and health policy. Clear and appropriate evidence-based guidance is required to maximise the potential benefits of implementing PROs for RWE generation. Unique aspects between PRO guidance for clinical care and other purposes should be differentiated. The needs of various stakeholder groups (including patients, health care professionals, regulators, payers, and industry) should be considered when developing future guidelines.

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Section: Resultsmentioning

confidence: 99%

Systematic review of guidance for the collection and use of patient-reported outcomes in real-world evidence generation to support regulation, reimbursement and health policy

Maruszczyk

Aiyegbusi

Torlińska

et al. 2022

J Patient Rep Outcomes

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“…Telehealth, web-based care and long-term follow-up are potentially viable alternative/complementary models of care for this growing demand [ 4 – 6 ]. Remote web-based patient-reported outcome measures (ePROMs) facilitate patients reporting issues of concern to their care team, thereby may prompt timely care according to level of need [ 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

Stepping into the real world: a mixed-methods evaluation of the implementation of electronic patient reported outcomes in routine lung cancer care

Girgis

Bamgboje‐Ayodele

Rincones

et al. 2022

J Patient Rep Outcomes

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Background To realize the broader benefits of electronic patient-reported outcome measures (ePROMs) in routine care, we used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework to inform the translation of a clinically effective ePROM system (hereafter referred to as the PRM system) into practice. The study aimed to evaluate the processes and success of implementing the PRM system in the routine care of patients diagnosed with lung cancer. Method A controlled before-and-after mixed-methods study was undertaken. Data sources included a self-report questionnaire and interviews with healthcare providers, electronic health record data for PRMs patients and historical controls, and field notes. Descriptive statistics, logistic regression modelling, negative binomial models, generalized estimating equations and repeated measures ANOVA were used to analyze quantitative data. Qualitative data was thematically analyzed. Results A total of 48/79 eligible people diagnosed with lung cancer completed 90 assessments during the 5-month implementation period (RE-AIM reach). Every assessment breached the pre-defined threshold and care coordinators reviewed and actioned 95.6% of breaches, resulting in 146 referrals to allied health services, most frequently for social work (25.3%), dietetics (18.5%), physiotherapy (18.5%) and occupational therapy (17.1%). PRMs patients had significantly fewer visits to the cancer assessment unit for problematic symptoms (M = 0.23 vs. M = 0.43; p = 0.035), and were significantly more likely to be offered referrals (71% vs. 29%, p < 0.0001) than historical controls (RE-AIM effect). The levels of ‘organizational readiness for implementing change’ (ORIC) did not show much differences between baseline and follow-up, though this was already high at baseline; but significantly more staff reported improved confidence when asking patients to complete assessments (64.7% at baseline vs. 88.2% at follow-up, p = 0.0046), and when describing the assessment tool to patients (64.7% at baseline vs. 76.47% at follow-up, p = 0.0018) (RE-AIM adoption). A total of 78 staff received PRM system training, and 95.6% of the PRM system alerts were actioned (RE-AIM implementation); and all lung cancer care coordinators were engaged with the PRM system beyond the end of the study period (RE-AIM maintenance). Conclusion This study demonstrates the potential of the PRM system in enhancing the routine care of lung cancer patients, through leveraging the capabilities of automated web-based care options. Plain English summary Research has shown the clear benefits of using electronically collected patient-reported outcome measures (ePROMs) for cancer patients and health services. However, we need to better understand how to implement ePROMs as part of routine care. This study evaluated the processes and outcomes of implementing an ePROMs system in the routine care of patients diagnosed with lung cancer. Key findings included: (a) a majority of eligible patients completed the scheduled assessments; (b) patient concerns were identified in every assessment, and care coordinators reviewed and actioned almost all of these, including making significantly more referrals to allied health services; (c) patients completing assessments regularly were less likely to present to the cancer assessment unit with problematic symptoms, suggesting that ePROMs identified patient concerns early and this led to a timely response to concerns; (d) staff training and engagement was high, and staff reporting increased confidence when asking patients to complete assessments and when describing the assessment tool to patients at the end of the implementation period. This study shows that implementing ePROMs in routine care is feasible and can lead to improvements in patient care.

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“…Digital tools, including those enabling blood pressure (BP) tracking, are acceptable by patients [3] and associated with reduced BP and 10-year cardiovascular Framingham risk scores compared with usual care [2,[4][5][6][7] . Digital tools are even more relevant since the COVID-19 pandemic, as a substantial number of patients receive hypertension care virtually [8] . These digital tools often rely on long-term patient tracking of home BP and other data parameters.…”

Section: Introductionmentioning

confidence: 99%

Digital health technology and hypertension management: a qualitative analysis of patient and specialist provider preferences on data tracking

Chow,

Forde,

Sawatzky

et al. 2022

Conn Health

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Aim: Digital health for hypertension management holds potential for improving the quality of care but requires long-term patient engagement to track health data. We explored patient and hypertension specialist perceptions of clinical utility for data tracking including standardized patient-reported outcome measures (PROMs), home blood pressure (BP) measurement, and other health metrics. Methods: Participants reviewed general health status, patient satisfaction, and hypertension-specific PROMs. Semi-structured focus groups (n = 15) with nine patients with hypertension and six hypertension specialists were audio-recorded and thematically analyzed. Results: Key themes identified from patients included: (1) comfort and appreciation of home BP monitoring but only during important periods of hypertension care; (2) preference for tracking new symptoms and medication side effects; (3) patients perceived tracking other health measures including general PROMs, diet and exercise as less relevant to their care; and (4) visually represented BP trends evaluating associations with changes in other health parameters were perceived as useful. Key themes identified by hypertension specialists included: (1) concerns about patient digital literacy; (2) utilizing visual representations of long-term BP data trends for patient empowerment; and (3) unclear relevance of tracking medication adverse effects, PROMs, and other non-BP health metrics. Conclusion: Patients and hypertension specialists had similar perspectives for most aspects of data monitoring but differed in preference for a few aspects that were germane to patients, including monitoring medication adverse effects and symptoms. Including views on data tracking from both patients and providers are essential for designing digital tools to optimize hypertension management.

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A narrative review of current evidence supporting the implementation of electronic patient-reported outcome measures in the management of chronic diseases

Cited by 38 publications

References 78 publications

Systematic review of guidance for the collection and use of patient-reported outcomes in real-world evidence generation to support regulation, reimbursement and health policy

Systematic review of guidance for the collection and use of patient-reported outcomes in real-world evidence generation to support regulation, reimbursement and health policy

Stepping into the real world: a mixed-methods evaluation of the implementation of electronic patient reported outcomes in routine lung cancer care

Digital health technology and hypertension management: a qualitative analysis of patient and specialist provider preferences on data tracking

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