Implementation and Feasibility of Electronic Patient-Reported Outcome (ePRO) Data Entry in the PRAEGNANT Real-Time Advanced and Metastatic Breast Cancer Registry

Wallwiener, Markus; Heindl, Felix; Brucker, Sara; Taran, Florin‐Andrei; Hartkopf, Andreas D.; Overkamp, Friedrich; Kolberg, Hans‐Christian; Hadji, Peyman; Tesch, Hans; Ettl, Johannes; Lux, Michael P.; Rauh, Claudia; Blum, S; Nabieva, Naiba; Brodkorb, Tobias; Faschingbauer, Cornelia; Langemann, Hanna; Schulmeyer, Carla E.; Volz, Bernhard; Rübner, Matthias; Lüftner, Diana; Müller, Volkmar; Belleville, Erik; Fehm, Tanja; Wallwiener, D.; Ganslandt, Thomas; Beckmann, Matthias; Schneeweiß, Andreas; Fasching, Peter A.; Gaß, Paul

doi:10.1055/s-0043-123433

Cited by 4 publications

(5 citation statements)

References 16 publications

(20 reference statements)

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“…Weekly response rates (Table 2) increased over time, with the highest response rate obtained in week 12 at 42.0% (42/100). This is in keeping with previously published ePRO response rates [20,21,33]. There are a couple of possible explanations for this observation of later surveys achieving higher response rates.…”

Section: Principal Findingssupporting

confidence: 91%

“…Several research studies support the advantages of collecting ePROs through mobile technology application, secure messaging (SM), or text messaging [16][17][18], but there is little published research on the use of HIT to collect CIH-related ePROs within the unique Veteran Administration (VA) system [19]. There is a need to develop a practical process for collecting and integrating ePROs to improve patient care within the VHA [20][21][22].…”

Section: Introductionmentioning

confidence: 99%

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Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project (Preprint)

Haun¹,

Alman²,

Melillo³

et al. 2019

Preprint

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BACKGROUND The Veteran Administration (VA) Office of Patient-Centered Care and Cultural Transformation is invested in improving veteran health through a whole-person approach while taking advantage of the electronic resources suite available through the VA. Currently, there is no standardized process to collect and integrate electronic patient-reported outcomes (ePROs) of complementary and integrative health (CIH) into clinical care using a web-based survey platform. This quality improvement project enrolled veterans attending CIH appointments within a VA facility and used web-based technologies to collect ePROs. OBJECTIVE This study aimed to (1) determine a practical process for collecting ePROs using patient email services and a web-based survey platform and (2) conduct analyses of survey data using repeated measures to estimate the effects of CIH on patient outcomes. METHODS In total, 100 veterans from one VA facility, comprising 11 cohorts, agreed to participate. The VA patient email services (Secure Messaging) were used to manually send links to a 16-item web-based survey stored on a secure web-based survey storage platform (Qualtrics). Each survey included questions about patient outcomes from CIH programs. Each cohort was sent survey links via Secure Messaging (SM) at 6 time points: weeks 1 through 4, week 8, and week 12. Process evaluation interviews were conducted with five primary care providers to assess barriers and facilitators to using the patient-reported outcome survey in usual care. RESULTS This quality improvement project demonstrated the usability of SM and Qualtrics for ePRO collection. However, SM for ePROs was labor intensive for providers. Descriptive statistics on health competence (2-item Perceived Health Competence Scale), physical and mental health (Patient-Reported Outcomes Measurement Information System Global-10), and stress (4-item Perceived Stress Scale) indicated that scores did not significantly change over time. Survey response rates varied (18/100, 18.0%-42/100, 42.0%) across each of the 12 weekly survey periods. In total, 74 of 100 participants provided ≥1 survey, and 90% (66/74) were female. The majority, 62% (33/53) of participants, who reported the use of any CIH modality, reported the use of two or more unique modalities. Primary care providers highlighted specific challenges with SM and offered solutions regarding staff involvement in survey implementation. CONCLUSIONS This quality improvement project informs our understanding of the processes currently available for using SM and web-based data platforms to collect ePROs. The study results indicate that although it is possible to use SM and web-based survey platforms for ePROs, automating scheduled administration will be necessary to reduce provider burden. The lack of significant change in ePROs may be due to standard measures taking a biomedical approach to wellness. Future work should focus on identifying ideal ePRO processes that would include standardized, whole-person measures of wellness.

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Section: Principal Findingssupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project (Preprint)

Haun¹,

Alman²,

Melillo³

et al. 2019

Preprint

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“…Seven of 15 subjects did not prefer the electronic questionnaire, while 5 said they would prefer the electronic questionnaire and 3 were hesitant, although 76% of the patients did not have any difficulties in using the document. Introducing electronic questionnaires is therefore feasible but depends on patients' compliance [15].…”

Section: Big Data and Artificial Intelligencementioning

confidence: 99%

Challenges and Opportunities for Real-World Evidence in Metastatic Luminal Breast Cancer

et al. 2021

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Background: The therapeutic armamentarium for patients with metastatic breast cancer is becoming more and more specific. Recommendations from clinical trials are not available for all treatment situations and patient subgroups, and it is therefore important to collect real-world data. Summary: To develop recommendations for up-to-date treatments and participation in clinical trials for patients with metastatic breast cancer, the Prospective Academic Translational Research PRAEGNANT Network was established to optimize the quality of oncological care in the advanced therapeutic setting. The main aim of PRAEGNANT is to systematically record medical care for patients with metastatic breast cancer in the real-life setting, including the outcome and side effects of different treatment strategies, to monitor quality-of-life changes during therapy, to identify patients eligible for participation in clinical studies, and to allow targeted therapies based on the molecular structures of breast carcinomas. Key Messages: This article describes the PRAEGNANT network and sheds light on the question of whether the various end points from clinical trials can be transferred to the real-world treatment situation.

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“…Brochmann's 41 study showed that patients were able and willing to complete regular PROs which could then be linked to blood test results. Studies in oncology 69,70 and other chronic diseases have also reported patient acceptability of routine collection of PROs 71 .…”

Section: Pro Recording or Monitoringmentioning

confidence: 99%

The Role of e-Health in the Delivery of Care for Patients with Hematological Cancers: A Systematic Literature Review

Taylor

Bellhouse

Allsop

et al. 2020

Telemedicine and e-Health

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BackgroundHaematological cancer survivors have significant unmet needs. The use of eHealth interventions has been shown to be effective in improving patient experiences and outcomes in other diseases. The aim of this review is to explore the role of eHealth interventions in the delivery of care for patients with haematological cancers across the illness trajectory. MethodsA systematic narrative review approach using thematic analysis was used to identify the key issues and themes in the literature. Medical subject headings and keywords were used in several databases: Medline, Embase, PsycInfo CINAHL and The Cochrane Collaboration Cochrane Review Database. This review focuses on the use of eHealth interventions for patients with haematological cancer within any study design. Results23 studies were identified in this review. The studies were of varying design: RCTs (n=6); pre and post design (n=1); feasibility and acceptability (n=11) and varying methodological quality. Seven studies included patients with any cancer diagnosis rather than focusing specifically on haematology patients. Our thematic analysis identified four main categories of intervention: information provision (n=4); self-help (n=6); communication facilitation (n=5); patient reported outcome (PRO) recording or monitoring (n=8). ConclusionThe clinical management of patients with haematological cancers, particularly those in survivorship, presents opportunities to explore eHealth approaches to improve patient care. This review highlights that eHealth tools may be acceptable and feasible to use with a haematology patient population, but more robust and well-designed trials that engage patients and health professionals are required to determine which and how interventions can be used most effectively.

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Implementation and Feasibility of Electronic Patient-Reported Outcome (ePRO) Data Entry in the PRAEGNANT Real-Time Advanced and Metastatic Breast Cancer Registry

Cited by 4 publications

References 16 publications

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project (Preprint)

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project (Preprint)

Challenges and Opportunities for Real-World Evidence in Metastatic Luminal Breast Cancer

The Role of e-Health in the Delivery of Care for Patients with Hematological Cancers: A Systematic Literature Review

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