scholarly journals Using a Web-Based Data Collection Platform to Implement an Effective Electronic Patient-Reported Outcome Registry

2019 ◽  
Vol 8 (6) ◽  
pp. e535-e539 ◽  
Author(s):  
Vincent A. Lizzio ◽  
Caleb M. Gulledge ◽  
Fabien Meta ◽  
Sreten Franovic ◽  
Eric C. Makhni
Keyword(s):  
Data Collection ◽  
Patient Reported Outcome ◽  
Web Based ◽  
Patient Reported ◽  
Outcome Registry

Young, Empowered and Strong: A Web-Based Education and Supportive Care Intervention for Young Women With Breast Cancer Across the Care Continuum

2021 ◽  
pp. 933-943
Author(s):  
Tal Sella ◽  
Craig Snow ◽  
Hannah Freeman ◽  
Philip D. Poorvu ◽  
Shoshana M. Rosenberg ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Young Women ◽  
Breast Cancer Survivors ◽  
Metastatic Breast ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Semistructured Interview ◽  
Web Based ◽  
Care Continuum ◽  
Patient Reported

PURPOSE Patient-centered digital interventions may help empower young women to self-manage symptoms and psychosocial concerns and support informational needs often unaddressed in clinic. METHODS Young, Empowered and Strong (YES) is an interactive web-based intervention designed to engage young women with personalized education and symptom self-management resources on the basis of responses to patient-reported outcome–based questionnaires. We piloted YES among young women (< 45 years) with newly diagnosed early breast cancer (EBC) or metastatic breast cancer (MBC) and breast cancer survivors (BCSs). Assessments were deployed weekly (EBC and MBC) or every 4 weeks (BCSs) over 12 weeks. At study completion, use, feasibility, and acceptability of YES were evaluated via a survey and semistructured interview. RESULTS Thirty women were enrolled between April and June 2019: 10 EBC, 10 BCSs, and 10 MBC. The mean age at diagnosis and enrollment was 36 (range 25-44) and 39 (range 31-44) years, respectively. Most participants were actively treated (96%, 27 of 28) with endocrine therapy (54%, 15 of 28) or chemotherapy (43%, 12 of 28). Overall, 61% (180 of 296) of assessments were completed (EBC: 70%, BCSs: 63%, and MBC: 52%). Of 37 patient-reported outcome and need domains, the most frequently triggered were sexual health (EBC: 90%, BCSs: 90%, and MBC: 90%), anxiety (EBC: 80%, BCSs: 90%, and MBC: 90%), stress and mindfulness (EBC: 80%, BCSs: 90%, and MBC: 90%), and fatigue (EBC: 90%, BCSs: 80%, and MBC: 90%). On postpilot survey, participants reported that YES helped them to learn (50%, 7 of 14), monitor (43%, 6 of 14), and manage (57%, 8 of 14) their symptoms. CONCLUSION YES is a feasible and acceptable digital intervention to support young women across the breast cancer care continuum. The nearly universal triggering of sexual and mental health needs suggests suboptimal management in the clinical setting and the potential for self-management through a digital platform.

Data Quality of Longitudinally Collected Patient-Reported Outcomes (PROs) after Thoracic Surgery: A Comparison of Paper- and Web-Based Assessments (Preprint)

2021 ◽  
Author(s):  
Hongfan Yu ◽  
Qingsong Yu ◽  
Yuxian Nie ◽  
Wei Xu ◽  
Yang Pu ◽  
...  
Keyword(s):  
Risk Factors ◽  
Thoracic Surgery ◽  
Data Quality ◽  
Severe Disease ◽  
Sampling Bias ◽  
Patient Reported Outcome ◽  
Web Based ◽  
Quality Of Life Scale ◽  
Patient Reported

BACKGROUND High-frequent patient-reported outcome (PRO) assessments are used to measure patients’ symptoms after surgery for surgical research; however, quality of those longitudinal PRO data has seldom been discussed. OBJECTIVE To describe errors, to identify factors influencing the data quality, and to profile error trajectories of data longitudinally collected via paper-and-pencil (P&P) or web-based-assessment (ePRO) after thoracic surgery. METHODS We extracted longitudinal PRO data from two prospective clinical studies. PROs were assessed by the MD Anderson Symptom Inventory Lung Cancer Module and single-item Quality of Life Scale before surgery and then daily after surgery until discharge or up to 14 days of hospitalization. Patient compliance and data error were identified and compared between P&P and ePRO. Generalized estimating equations models and two-piecewise models were used to describe trajectories of error incidence over time and to identify the risk factors. RESULTS Among 629 patients with at least 2 PRO assessments, 440 completed 3347 P&P assessments and 189 completed 1291 ePRO assessments. In total, 49.44% of patients had at least 1 error, including 1) missing items (64.69%), 2) modifications without signatures (27.99%), 3) selection of multiple options (3.02%), 4) missing patient signatures (2.54%), 5) missing researcher signatures (1.45%) and 6) missing completion dates (0.3%). ePRO patients had fewer errors than P&P patients (30.16% vs. 57.73%, p <0.0001). Compared with ePRO patients, those using P&P were older, less educated and sicker. Common risk factors of having errors were with a lower education level (P&P, OR=1.39, 95%CL=1.20-1.62, p<.0001; ePRO, OR=1.82, 95%CI=1.22-2.72, p=0.0032), treated in a provincial hospital (P&P, OR=3.34, 95%CI=2.10-5.33, p<.0001; ePRO, OR=4.73, 95%CI=2.18-10.25, p<.0001) and with severe disease (P&P, OR=1.63, 95%CI=1.33-1.99, p<.0001; ePRO, OR=2.70, 95%CI=1.53-4.75, p=0.0006). Errors peaked on postoperative day (POD) 1 for P&P, and on POD 2 for ePRO. CONCLUSIONS ePRO might be superior to P&P in terms of data quality. However, sampling bias needs to be considered for studies using longitudinal PROs as major outcomes.

scholarly journals Short-term serial assessment of electronic patient-reported outcome for depression and anxiety in breast Cancer

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jeeyeon Lee ◽  
Jin Hyang Jung ◽  
Wan Wook Kim ◽  
Byeongju Kang ◽  
Jungmin Woo ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Treatment Period ◽  
Depression Scale ◽  
Patient Reported Outcome ◽  
Depression And Anxiety ◽  
Short Term ◽  
Web Based ◽  
Patient Reported ◽  
Patient Health

Abstract Purpose The incidence of depression and anxiety is higher in patients with breast cancer than in the general population. We evaluated the degree of depression and anxiety and investigated the changes in patients with breast cancer during the treatment period and short-term follow-up period. Methods Overall, 137 patients with breast cancer were evaluated using the Patient Health Questionnaire 9-item depression scale (PHQ-9) and Generalized Anxiety Disorder scale (GAD-7). The scales were developed as a web-based electronic patient-reported outcome measure, and serial results were assessed before the operation, after the operation, in the post-treatment period, and in the 6-month follow-up period after surgery. Results The degree of depression and anxiety increased during treatment and decreased at 6-month follow-up, even if there were no statistical differences among the four periods (PHQ-9: p = 0.128; GAD-7: p = 0.786). However, daily fatigue (PHQ-9 Q4) and insomnia (PHQ-9 Q3) were the most serious problems encountered during treatment and at 6-month follow-up, respectively. In the GAD-7, worrying too much (Q3) consistently showed the highest scores during the treatment and follow-up periods. Of the patients, 7 (5.11%) and 11 (8.03%) patients had a worsened state of depression and anxiety, respectively, after treatment compared with before treatment. Conclusion Most factors associated with depression and anxiety improved after treatment. However, factors such as insomnia and worrying too much still disturbed patients with breast cancer, even at 6-month follow-up. Therefore, serial assessment of depression and anxiety is necessary for such patients.

scholarly journals Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial

10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Diverse Population ◽  
Web Based ◽  
Patients With Cancer ◽  
Patient Reported

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3

scholarly journals Piloting a web-based systematic collection and reporting of patient-reported outcome measures and patient-reported experience measures in chronic heart failure

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037754
Author(s):  
Francesca Pennucci ◽  
Sabina De Rosis ◽  
Claudio Passino
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Outcome Measures ◽  
Health Workers ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Population Characteristics ◽  
Web Based ◽  
Patient Reported ◽  
Systematic Collection

ObjectivesTo evaluate the feasibility of a digital and continuous collection and reporting of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for chronic heart failure (CHF).DesignA single-site pilot study was settled for evaluating the feasibility of the intervention, both using qualitative and quantitative data (ie, workshop, surveys).SettingThe pilot has been implemented in a Tuscan specialised hospital (Italy).Participants162 patients were involved. Inclusion criteria were: a previous diagnosis of HF, age ≥18 years, absence of cognitive impairment or active tumours, ability to provide informed consent to study participation.InterventionThe continuous collection and reporting of PROMs and PREMs has been designed and implemented in 2018. PREMs questionnaires for patients were developed, while Kansas City Cardiomyopathy Questionnaire-12 was used for assessing PROMs. Questionnaires are administered at specific time points: discharge; 30 days, 7 and 12 months after the discharge. Enrolment of patients, administration and real-time reporting of questionnaires are carried on through a digital platform.Outcome measuresEnrolment, response and drop-out rates were considered to assess the feasibility of the intervention. Qualitative data were collected during meetings and workshops with health workers. The representativeness of the recruited sample with respect to the population characteristics was also evaluated.ResultsThe system has been successfully implemented during 2018. Response rates have been consistently above 50%, demonstrating patients’ transversal willingness to participate. All the involved stakeholders acknowledged the feasibility of the design. The recruited sample is significantly different in terms of age and educational level compared with the overall population characteristics.ConclusionIt is possible to run a web-based systematic collection and reporting system for CHF patient-reported data. Systematic collection and reporting of PROMs and PREMs data allows professionals to increasingly assume CHF patient perspective in their daily work. Limitations will be used to improve the system.

Online Ratings and Reviews by Patients: Should Surgeons use Web-Based Feedback as an Outcome Metric?

2013 ◽  
Vol 95 (6) ◽  
pp. 188-189 ◽  
Author(s):  
Neil Bacon ◽  
Dermot O'Riordan
Keyword(s):  
Clinical Effectiveness ◽  
Patient Reported Outcome ◽  
Web Based ◽  
Outcomes Measures ◽  
Wide Range ◽  
Patient Reported ◽  
Online Ratings ◽  
Quality In Healthcare ◽  
Study Designs ◽  
Outcome Metrics

Patient experience (as distinct from patient-reported outcome metrics, or PrOMs) is known to be an accurate and sensitive metric of patient safety and clinical effectiveness 'for a wide range of disease areas, settings, outcomes measures and study designs' and there is a clear case for it being considered 'one of the central pillars of quality in healthcare'.

scholarly journals Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study (Preprint)

2020 ◽  
Author(s):  
Klay Lamprell ◽  
Diana Fajardo Pulido ◽  
Yvonne Tran ◽  
Bróna Nic Giolla Easpaig ◽  
Winston Liauw ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Data Collection ◽  
Qualitative Study ◽  
Patient Reported Outcome ◽  
Mixed Methods Study ◽  
Young Onset ◽  
Patient Pathway ◽  
Patient Reported ◽  
Reported Data ◽  
Patient Stories

BACKGROUND Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. OBJECTIVE The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. METHODS This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. RESULTS Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. CONCLUSIONS The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/25056

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