Mobile Responsive App—A Useful Additional Tool for Data Collection in the German Pregnancy Register Rhekiss?

Background: The German pregnancy register Rhekiss is designed as a nationwide, web-based longitudinal observational cohort established in 2015. The register follows women with inflammatory rheumatic disease prospectively from child wish or early pregnancy until 2 years post-partum. Information on clinical and laboratory parameters, drug treatment, and (adverse) pregnancy outcomes are documented in pre-specified intervals. Physicians and patients report data for the same time periods via separated accounts and forms into a web-based application (app). As data entry on mobile devices might improve response rates of patients, a responsive app as a further convenient documentation option was developed.Methods: The Rhekiss-app is available for self-reported data retrieval since August 2017 from the App stores. For the current analysis, Rhekiss register data were used from the start of the register until 30 September 2020. The analyses were performed for forms containing information on devices. Outcome parameters were compared for mobile and desktop users for the quantity and quality of filled forms.Results: In total, 5,048 forms were received and submitted by 966 patients. About 57% of forms were sent from mobile devices with the highest numbers in patients with child wishes (63%). Users of mobile devices were slightly younger and often had less high-education level (62 vs. 79%) compared with desktop users. The proportion of forms submitted via mobile devices increased steadily from 48% in the fourth quarter of 2018 to 64% in the third quarter of 2020. The proportion of forms received before and after the Rhekiss-app implementation increased with the highest increase of 12% for forms filled at time point 12 months post-partum. Mobile users submitted significantly more forms than desktop users (2.9 vs. 2.1), data sent via desktops were more often complete (88 vs. 86%).Conclusion: The responsive app is a valuable additional tool for data collection and is well-accepted by patients as indicated by its increasing use in Rhekiss. Apart from desktop/browser developments, the technological adoptions within observational cohorts and registries should take smartphone requirements and developments into account, especially when patient-reported data in young, mobile patients are collected, bearing in mind that data quality could be compromised and concepts for improving data quality should be implemented.

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Patient-reported experiences with general practitioners: a randomised study of mail and web-based approaches following a national survey

BMJ Open ◽

10.1136/bmjopen-2019-036533 ◽

2020 ◽

Vol 10 (10) ◽

pp. e036533

Author(s):

Hilde Hestad Iversen ◽

Olaf Holmboe ◽

Oyvind Bjertnaes

Keyword(s):

Data Collection ◽

Data Quality ◽

Response Rates ◽

Background Characteristics ◽

Web Based ◽

Mail Surveys ◽

Study Results ◽

Patient Reported ◽

Electronic Response ◽

Data Collection Procedure

ObjectiveThe standard data-collection procedure in the Norwegian national patient experience survey programme is post-discharge mail surveys, which include a pen-and-paper questionnaire with the option to answer electronically. A purely electronic protocol has not previously been explored in Norway. The aim of this study was to compare response rates, background characteristics, data quality and main study results for a survey of patient experiences with general practitioners (GPs) administered by the standard mail data-collection procedure and a web-based approach.DesignCross-sectional survey.SettingGP offices in Norway.ParticipantsThe sample consisted of 6999 patients aged 16 years and older registered with a GP in November 2018.InterventionBased on a three-stage sampling design, 6999 patients of GPs aged 16 or older were randomised to one of two survey administration protocols: Group A, who were mailed an invitation with both a pen-and-paper including an electronic response option (n=4999) and Group B, who received an email invitation with electronic response option (n=2000).Main outcome measuresResponse rates, background characteristics, data quality and main study results.ResultsThe response rate was markedly higher for the mail survey (42.6%) than for the web-based survey (18.3%). A few of the background variables differed significantly between the two groups, but the data quality and patient-reported experiences were similar.ConclusionsWeb-based surveys are faster and less expensive than standard mail surveys, but their low response rates and coverage problems threaten their usefulness and legitimacy. Initiatives to increase response rates for web-based data collection and strategies for tailoring data collection to different groups should be key elements in future research.

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

10.2196/preprints.28915 ◽

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.

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Web-Based Data Collection for Older Adults Living With HIV in a Clinical Research Setting: Pilot Observational Study

Journal of Medical Internet Research ◽

10.2196/18588 ◽

2020 ◽

Vol 22 (11) ◽

pp. e18588

Author(s):

Katherine Tassiopoulos ◽

Carla Roberts-Toler ◽

Carl J Fichtenbaum ◽

Susan L Koletar

Keyword(s):

Older Adults ◽

Data Collection ◽

Data Quality ◽

Older Persons ◽

Web Based ◽

Persons Living With Hiv ◽

Paper And Pencil ◽

Living With Hiv

Background Longitudinal follow-up of older persons living with HIV is essential for the ascertainment of aging-related clinical and behavioral outcomes, and self-administered questionnaires are necessary for collecting behavioral information in research involving persons living with HIV. Web-based self-reported data collection results in higher data quality than paper-and-pencil questionnaires in a wide range of populations. The option of remote web-based surveys may also increase retention in long-term research studies. However, the acceptability and feasibility of web-based data collection in clinical research involving older persons living with HIV have never been studied. Objective This study aims to assess the acceptability and feasibility of a web-based survey to collect information on sexual, substance use, and physical activity behaviors; compare the data quality of the web-based survey with that of a paper-and-pencil questionnaire; and summarize web-based survey metrics. Methods This pilot study took place within the AIDS Clinical Trials Group A5322 study, a longitudinal cohort of men and women living with HIV (aged ≥40 years), followed at 32 clinical sites in the United States and Puerto Rico. A total of 4 sites participated in this study. A web-based survey was created using self-administered questionnaires typically completed in A5322 via paper and pencil. Pilot study participants completed these questionnaires via web-based survey at one research visit in lieu of paper-and-pencil administration. Two questions were added to assess feasibility, defined as participants’ perception of the ease of web-based survey completion (very hard, hard, easy, very easy), and their preferred format (computer or tablet, paper and pencil, no preference) for completing the questions in the future (acceptability). Feasibility and acceptability were summarized overall and by demographic and clinical characteristics; the proportion of evaluable data by web-based survey versus previously administered paper-and-pencil questionnaires (data quality) was compared for each question. Results Acceptability and feasibility were high overall: 50.0% (79/158) preferred computer or tablet, 38.0% (60/158) reported no preference, and 12.0% (19/158) preferred paper and pencil; 93.0% (147/158) reported survey completion easy or very easy. Older age was associated with lower odds of preferring computer or tablet to paper and pencil (odds ratio per 1-year increase in age: 0.91, 95% CI 0.85-0.98). Individuals who found the survey hard or very hard had a lower median neurocognitive test score than those who found it easy or very easy. Data quality with web-based survey administration was similar to or higher than that with paper-and-pencil administration for most questions. Conclusions Web-based survey administration was acceptable and feasible in this cohort of older adults living with HIV, and data quality was high. Web-based surveys can be a useful tool for valid data collection and can potentially improve retention in long-term follow-up studies.

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

10.2196/preprints.25056 ◽

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

JMIR Research Protocols ◽

10.2196/25056 ◽

2021 ◽

Vol 10 (2) ◽

pp. e25056

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 Identifier (IRRID) DERR1-10.2196/25056

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Slider Bars in Multi-Device Web Surveys

Social Science Computer Review ◽

10.1177/0894439319879132 ◽

2019 ◽

pp. 089443931987913

Author(s):

Angelica M. Maineri ◽

Ivano Bison ◽

Ruud Luijkx

Keyword(s):

Data Collection ◽

Data Quality ◽

Initial Position ◽

Web Survey ◽

Web Surveys ◽

Web Based ◽

Using Data ◽

The University

This study explores some features of slider bars in the context of a multi-device web survey. Using data collected among the students of the University of Trento in 2015 and 2016 by means of two web surveys ( N = 6,343 and 4,124) including two experiments, we investigated the effect of the initial position of the handle and the presence of numeric labels on answers provided using slider bars. It emerged that the initial position of the handle affected answers and that the number of rounded scores increased with numeric feedback. Smartphone respondents appeared more sensitive to the initial position of the handle but also less affected by the presence of numeric labels resulting in a lower tendency to rounding. Yet, outcomes on anchoring were inconclusive. Overall, no relevant differences have been detected between tablet and PC respondents. Understanding to what extent interactive and engaging tools such as slider bars can be successfully employed in multi-device surveys without affecting data quality is a key challenge for those who want to exploit the potential of web-based and multi-device data collection without undermining the quality of measurement.

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Data Collection Using Mobile Devices and Cloud/Web-based GIS

Proceedings of the Water Environment Federation ◽

10.2175/193864716819707535 ◽

2016 ◽

Vol 2016 (10) ◽

pp. 5901-5912

Author(s):

Matt Winkelman ◽

Andy Lovell ◽

Adam Fisher

Keyword(s):

Data Collection ◽

Mobile Devices ◽

Web Based

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PLANTAR FASCIITIS: A NOVEL CROWDSOURCING APPROACH TO DATA COLLECTION AND ANALYSIS

Journal of Musculoskeletal Research ◽

10.1142/s0218957721500238 ◽

2021 ◽

pp. 2150023

Author(s):

Ron Held ◽

Alexander Blankstein

Keyword(s):

Data Collection ◽

Plantar Fasciitis ◽

Age Of Onset ◽

Clinical Importance ◽

Plantar Fascia ◽

Heel Pain ◽

Clinical Aspects ◽

Metatarsal Bones ◽

Patient Reported ◽

Reported Data

Plantar Fasciitis (PF) is a disorder of connective tissue that supports the longitudinal arch of the foot. The fascia runs along the sole with insertion to the heads of the metatarsal bones and origin in the calcaneus. It is one of the most frequent diagnoses for patients in general and foot clinics, and one of the common causes for heel pain which may develop into chronic heel pain, change the way we walk and lead to foot, knee, hip or back problems. PF is the most common type of plantar fascia injury. The purpose of this study is to describe the natural history of PF, including the ethnicity, early and main symptoms, aggravating factors, comorbidities and treatments for PF, based on the patient-reported data from active PF community in an online crowdsourcing platform, StuffThatWorks. Analyses were made in order to discover characteristics which have a clinical importance. Totally 3835 patients were included in this retrospective observational study. The results show that crowdsourcing is a valid approach for data collection, as expected results with regard to clinical aspects such as age-of-onset, early and main symptoms were witnessed. Furthermore, the patient-reported data show three characteristics which have a very high clinical relevance: high level of physical activity, being overweight and age. In addition, leads for future studies were established.

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Web-Based Presence Application Development at Pontianak State Polytechnic

ELKHA ◽

10.26418/elkha.v13i1.44831 ◽

2021 ◽

Vol 13 (1) ◽

pp. 63

Author(s):

Hendro Cahyono ◽

Hasan Hasan ◽

Lindung Siswanto ◽

M. Ridhwan Sufandi

Keyword(s):

Information System ◽

Data Collection ◽

Employee Performance ◽

Data Retrieval ◽

Application Development ◽

Process Data ◽

Web Based ◽

Mobile Phone Technology ◽

Presence Data ◽

Waterfall Model

The employees' presence is an important factor for an institution, which is relate to discipline and has an impact on the employee's performance. Therefore, it is necessary to have specific data collection to record presence, absenteeism, and work activities that has done every day so that employee performance record in real-time and proper. There are many ways that can be done to achieve a good presence information system, one of them is using computer and mobile phone technology which is implemented with a website-based presence application. At the Pontianak State Polytechnic, finger print machine used in the presence process system, but it is still lack in efficiency and effectiveness in data collection, data retrieval as well as data recap calculations, which require a relatively long time. Besides, the bigger risk of error and loss of presence data. Based on problems, a Web-Based Presence Application Development Information System created at the Pontianak State Polytechnic. The research method used in data collection, which includes research methods, interviews and literature. While software development uses a waterfall model which includes requirements analysis, design, coding, testing and implementation. This web-based presence application can provide convenience in the employee presence process, data search and presence recap calculations, and minimize loss and errors in recording employee presence data. Based on web-based presence application testing and evaluation to thirty-four employees of Pontianak State Polytechnic, it stated that the web-based presence application is suitable for used by all employees of Pontianak State Polytechnic.

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Pregnancy outcomes in DMARD-exposed patients with juvenile idiopathic arthritis—results from a JIA biologic registry

Rheumatology ◽

10.1093/rheumatology/kez309 ◽

2019 ◽

Cited By ~ 2

Author(s):

Paula Drechsel ◽

Katrin Stüdemann ◽

Martina Niewerth ◽

Gerd Horneff ◽

Rebecca Fischer-Betz ◽

...

Keyword(s):

Pregnancy Outcomes ◽

Observation Study ◽

Patient Interviews ◽

Increased Risk ◽

Patient Reported ◽

Male Patients ◽

Adverse Pregnancy ◽

Reported Data ◽

Long Term Observation ◽

In Pregnancy

Abstract Objectives To investigate the courses and outcomes of pregnancies involving JIA patients who were exposed to DMARDs. Methods In the Juvenile arthritis MTX/Biologics long-term Observation study, pregnant patients or male patients with pregnant partners were identified. Standardized patient interviews were conducted, and the course and outcome of pregnancy were assessed. Prospectively collected physician- and patient-reported data were also considered in the analysis. Results The study sample included 152 pregnancies in 98 women with JIA and 39 pregnancies involving 21 male patients as partners. The majority of patients had polyarticular-onset/-course JIA (61%). The average age of patients at first pregnancy was 24.1 (4.5) years, and their mean disease duration was 13.8 (5.9) years. Patients had been exposed to DMARDs for 9.5 (5.6) years, and 90% of these patients had received biologics before. Half of the pregnancies occurred during DMARD exposure, mostly with etanercept. Significant differences in pregnancy outcomes between DMARD-exposed and -unexposed pregnancies were not observed. Spontaneous abortion (13.1%) and congenital anomaly (3.6%) rates were not suggestive of increased risk compared with expected background rates. However, the rates of premature birth (12.3%) and caesarean section (37.7%) were slightly above those in the German birthing population. The disease activity of female patients remained relatively stable in pregnancy, with mean cJADAS-10 scores of 5.3, 7.1 and 5.6 in each trimester, respectively. Conclusion Young adults with JIA often become pregnant or become fathers of children while still being treated with DMARDs. Data suggest no increased risk of major adverse pregnancy outcomes.

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