Pilot analysis exploring the potential value of an integrated electronic patient reported outcome (PRO) application specifically designed for use in oncology practice.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18246-e18246
Author(s):  
Thomas Hopkins

e18246 Background: PROs may soon be used as indicators of the quality of care provided and to support comparative effectiveness research (CER). Many oncology practices are developing tools to deploy PRO tools electronically to improve effectiveness of data capture, enhance the clinical utility of the data for providers and integrate PRO data with local and national registries. Here we describe our preliminary experience with developing software for this purpose. Methods: We created a software application and a HIPAA compliant cloud-based data architecture to obtain, store, clean and normalize PRO data and infusion system data needed to define, create, measure and analyze clinical and operational key performance indicators, which are then integrated into reports and displayed to end-users on a dashboard in an actionable format. The application supports efficient data collection and interfaces with patients via secure text message or email link. The dashboard component of the application is a legible, single-page, real-time interface, depicting a tabular and graphical presentation of current and historical key performance indicators that enable instantaneous and informed decisions. Results: Figure I depicts the application patient demographics page, which allows clinicians and clinical support staff to enter patient data and enroll the patient in customized templates, which allow flexible delivery of content on a customized predetermined timeline. Figure II illustrates the PRO patient-facing interface, as displayed on a mobile device. Figure III illustrates the analytics function of the application, which displays patient-specific summary or population aggregate data and has the capacity to combine PRO data with objective data obtained from infusion systems. Conclusions: In this abstract, we describe our experience with creating an application that will collect and deliver accurate, reliable and ultimately actionable clinical and operational data to clinicians and operational leaders in oncology practices. The application is currently being evaluated for clinical and research use at our institution.

2018 ◽  
Author(s):  
Michael Lang ◽  
Martin Mayr ◽  
Stefan Ringbauer ◽  
Lukas Cepek

UNSTRUCTURED Background: Adherence constitutes a great challenge for disease management, particularly when treating chronically ill patients facing an extensive, complex and long-term therapy. Earlier studies emphasize the relevance of adherence for improving therapy benefits. Besides the positive impact of increased patient support, the use of mobile health applications has gained importance in disease management. Objective: We aimed to develop a software application providing innovative features to simplify the contact between patients and treating physicians in order to overcome adherence barriers, to implement risk management plans and to collect patient reported outcome data. Methods: A novel software application ensuring data security was developed. Various innovative modules have been implemented, enabling bidirectional communication between treating physicians and patients, supporting therapy monitoring and management and allowing the collection of large sets of anonymous patient data. Results: The PatientConcept app is freely available for download and is tested since 2016, with more than 1800 generated patient IDs and 279 patients documenting health data according to risk management plans online in 2017. The impact on adherence issues is currently tested in larger patient populations. Conclusion: This innovative app provides a feasible and cost-optimized possibility to intensify and simplify the communication between patients and their treating physicians across indications, thus promising an exceptional benefit to both. It may not only support chronically ill patients in managing their daily life and improving adherence, but can also facilitate the implementation of risk management plans through automated monitoring, thus supporting physicians in their daily routine. Furthermore, patient reported outcome data can be collected. Importantly, a secure ID-associated data management ensures patient anonymity complying with highest data safety standards.


2021 ◽  
Author(s):  
Fabrice Denis

UNSTRUCTURED Abstract Digital electronic patient reported outcome (ePRO) systems for symptom monitoring in cancer patients demonstrated evidence of quality of life and survival benefit in controlled trials. They are beginning to be used in routine oncology practice. Many software editors provide solutions to clinicians but how can clinician choose it? We propose a synthesis of the main questions about effectiveness, safety and functionality of ePRO system that may ask clinician to software providers to be helped in selecting a software in order to obtain the best value of these tools for their patients and their practice.


2019 ◽  
Vol 7 (3_suppl) ◽  
pp. 2325967119S0004
Author(s):  
Xochitl Mellor ◽  
Matthew J. Buczek ◽  
J. Todd Lawrence ◽  
Theodore J. Ganley ◽  
Alexander J. Adams ◽  
...  

Background: Patient-reported outcome (PRO) instruments measure a patient’s health status in a variety of domains, including physical, mental and social well-being. The delivery of such instruments has become an integral part of healthcare, commonly employed to assess treatment efficacy and outcomes in sports medicine. With the proliferation of mobile phones, administration of PROs across patient-friendly platforms (e.g. apps, text messaging) may increase completion rates, particularly among younger patients. The purpose of this study was to validate the collection of common knee PROs with text messaging in sports medicine, by correlating text messaging responses with traditional paper delivery in adolescents and young adults. Methods: Patients presenting to a hospital-based pediatric orthopaedic sports medicine clinic with a knee injury were enrolled in this prospective investigation. Patients were excluded if they were undergoing a same-day office procedure, underwent surgery within the previous 90 days, and/or had no access to a mobile phone. Paper versions of the Pediatric International Knee Documentation Committee (Pedi-IKDC) Subjective Knee Evaluation Form and the Pediatric Functional Activity Brief Scale (Pedi-Fab Scale) questionnaires were completed during the patients’ initial clinic visit. Over the next 72 hours, the patients subsequently completed the mobile phone portion of the study outside of the clinic (Figure 1), which included text message delivery of the Pedi-IKDC and Pedi-Fab Scale, assigned in a random order. Correlations between paper and text message delivery of the two PROs were assessed. Secondary analyses were conducted to examine overall completion time and associations between patient demographics and text compliance. Results: Of the 91 patients (Age M=16.0 ±2.0 years; 48% female) initially enrolled in the study, 55 (60.4%) completed the text Pedi-Fab Scale, 48 (52.7%) completed the text Pedi-IKDC, and 39 (42.9%) completed both PROs. Among the evaluable sample, the intraclass correlation coefficient (ICC) between the paper and mobile phone delivery of the Pedi-Fabs was 0.95 (95% CI, 0.91-0.97). The ICC between the paper and mobile phone delivery of the Pedi-IKDC was 0.96 (95% CI, 0.93-0.98). Average Pedi-Fab scores on paper (M=12.7) and mobile phone (M=12.3) were not significantly different (p=0.52). Similarly, average Pedi-IKDC scores on paper (M=68.8) and mobile phone (M=67.7) were not significantly different (p=0.41). A Bland-Altman plot and linear regression revealed there was no proportional bias between the mean and difference for the Pedi-Fab scores (p=0.55) and Pedi-IKDC scores (p=0.56). The average completion time for the text delivered Pedi-Fab and Pedi-IKDC were 102±224 minutes and 159±155 minutes, respectively. For Pedi-Fab, there were no patient demographics that were significantly associated with text completion. However, high school students (p=0.025), female sex (p=0.036), and race (p=0.002), were significantly associated with the text completion of Pedi-IKDC. In addition, order of the delivery of the questionnaires and paper scores were not associated with text completion for either survey. Conclusion: Text message delivery using mobile phones permits valid assessment of Pedi-IKDC and Pedi-Fabs scores in this prospective observational study. Questionnaire delivery by automated text messaging allows asynchronous response and may increase compliance among high school students while also reducing the labor cost of collecting PROs.


Author(s):  
Hanna Jean Khoury ◽  
Loretta A. Williams ◽  
Ehab Atallah ◽  
Rüdiger Hehlmann

The prognosis of chronic phase chronic myeloid leukemia (CML) has improved so that life expectancy for patients responding to tyrosine kinase inhibitors (TKIs) is now equivalent to age-matched controls. Attention should be paid to comorbidities that impact survival. The success of TKI therapy can be easily and reliably assessed at well-accepted time points using quantitative polymerase chain reaction (PCR) standardized to the international scale. Patient-reported outcome (PRO) tools are readily available for use in the clinic and provide complementary information on the tolerance of TKIs. Effectively managing adverse events of TKIs can improve compliance and quality of life. Discontinuation of TKIs is the next frontier in CML. In select patients with sustained deep molecular remission, a discontinuation of TKI is associated with a durable treatment-free remission in approximately 50%. Patient engagement in their discontinuation can be achieved through a provider multi-team coaching, is complementary to the available guidelines, and may provide an additional safety net so that these discontinuations remain safe when applied in general practices.


2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.


2017 ◽  
Vol 38 (03) ◽  
pp. 184-190 ◽  
Author(s):  
Meghan Darling-White

AbstractThe general lack of assessment tools that adequately measure communicative participation has been well documented in the adult literature. However, there has been no systematic attempt to document the availability of these assessment tools in pediatric populations. The purpose of this literature review was to investigate the availability of patient-reported outcome (PRO) tools that measure communicative participation in children. Results indicate that there are no such tools that measure communicative participation in children at this time. In an effort to inspire researchers to develop these tools, the following guidelines for the development of pediatric PRO tools are discussed: (1) consider age-based criteria for tool development and administration, (2) design and format the tool specifically for the target age group, (3) establish content validity, (4) determine whether a parent proxy-report tool is necessary, and (5) consider cross-cultural issues.


Lung Cancer ◽  
2019 ◽  
Vol 130 ◽  
pp. 143-148 ◽  
Author(s):  
Majken M. Brønserud ◽  
Maria Iachina ◽  
Anders Green ◽  
Mogens Groenvold ◽  
Erik Jakobsen

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 292-292
Author(s):  
Nadine Jackson McCleary ◽  
Deborah Schrag ◽  
Neil E. Martin ◽  
Sadiqa Mahmood ◽  
Elizabeth Beyer ◽  
...  

292 Background: Routine collection of patient reported outcomes (PROs) reduces hospitalizations and improves quality of life. In the absence of clear implementation guidelines and research guiding deployment, PROs may not have the desired impact on outcomes in routine oncology practice. We share lessons learned from PRO deployment at Dana-Farber Cancer Institute. Methods: We developed a symptom/toxicity assessment tool based on the PRO-CTCAE to capture 15 symptomatic adverse events with a 1-week recall: fatigue/ decreased appetite/insomnia/ shortness of breath/numbness and tingling/concentration, general pain/anxiety/sadness, rash, nausea/vomiting/fever, constipation, and diarrhea. Responses from eligible English-literate patients scheduled for a gastrointestinal cancer center or adult palliative care visit between January 18 to March 22, 2018 were transmitted directly from clinic tablet to the EMR. To evaluate the deployment, we sought qualitative feedback from clinic staff and three multidisciplinary working groups comprised of patients, nurses, pharmacists, operations leaders, quality/safety experts, and health services researchers to identify technical and workflow gaps in PRO Content, Implementation, and Analytics. Results: We noted a 38% response rate of the N = 4440 PROs assigned to N = 4440 scheduled visits for N = 2055 unique patients (36% were completed, 2% started but not completed); 62% were not started. Workflow enhancement requests include an updated summary view, a clinical documentation tool, a scoring algorithm to highlight severe responses, and a quality metric dashboard to evaluate the deployment. Ongoing analyses are studying the proportion of moderate-severe symptomatic adverse events reported and their association with provider action (i.e., supportive care referral, chemotherapy treatment plan modification, or unplanned ED/hospitalization in the subsequent 30 days). Conclusions: Refinement of the PRO deployment strategy is needed to guide implementation efforts and demonstrate meaningful impact in routine oncology practice.


2018 ◽  
Vol 46 (4) ◽  
pp. 940-946 ◽  
Author(s):  
Cale A. Jacobs ◽  
Michael R. Peabody ◽  
Stephen T. Duncan ◽  
Ryan D. Muchow ◽  
Ryan M. Nunley ◽  
...  

Background: The creation of a single patient-reported outcome (PRO) platform validated across hip preservation, osteoarthritis (OA), and total hip arthroplasty (THA) populations may reduce barriers and streamline the routine collection of PROs in clinical practice. As such, the purpose of this study was to determine if augmenting the Hip disability and Osteoarthritis Outcome Score–Joint Replacement (HOOS, JR) with additional HOOS questions would result in a PRO platform that could be used across a wider spectrum of hip patient populations. Hypothesis: The HOOS, JR would demonstrate a notable ceiling effect, but by augmenting the HOOS, JR with additional HOOS questions, a responsive PRO platform could be created. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: Using preoperative and postoperative HOOS responses from a sample of 304 patients undergoing periacetabular osteotomy (PAO), additional items were identified to augment the HOOS, JR. The psychometric properties of a newly created PRO tool (HOOSglobal) were then compared with the HOOS, JR and other PRO instruments developed for patients with hip OA and/or undergoing THA. Results: By augmenting the HOOS, JR with 2 additional questions, the HOOSglobal was more responsive than all other included PRO tools and had significantly fewer maximum postoperative scores than the HOOS, JR ( P < .0001), HOOS–Physical Function Short form ( P < .0001), Western Ontario and McMaster Universities Osteoarthritis Index ( P = .02), University of California, Los Angeles activity scale ( P = .0002), and modified Harris Hip Score ( P = .04). The postoperative HOOSglobal score threshold associated with patients achieving the patient acceptable symptom state (PASS) was 62.5. Conclusion: The HOOSglobal is a valid and responsive PRO tool after PAO and may potentially provide the orthopaedic community with a PRO platform to be used across hip-related subspecialties. For patients undergoing PAO, a postoperative HOOSglobal score ≥62.5 was associated with patients achieving the PASS.


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