scholarly journals Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient‐Reported Outcome Data Collection: A Qualitative Study

2018 ◽  
Vol 71 (1) ◽  
pp. 80-87 ◽  
Author(s):  
Iris Navarro‐Millán ◽  
Anne Zinski ◽  
Sally Shurbaji ◽  
Bernadette Johnson ◽  
Liana Fraenkel ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Data Collection ◽  
Qualitative Study ◽  
Electronic Communication ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Reported ◽  
Outcome Data Collection

scholarly journals Building a National CML Registry

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 3440-3440
Author(s):  
Ehab L. Atallah ◽  
Arun K Singavi ◽  
Bradley Taylor ◽  
Arielle Baim ◽  
Judith Myers ◽  
...  
Keyword(s):  
Side Effects ◽  
Data Collection ◽  
Clinical Data ◽  
Chart Review ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Medical Monitoring ◽  
Patient Reported ◽  
Outcome Data Collection

Background: Tyrosine kinase inhibitor (TKI) therapy has led to phenomenal improvement in overall survival for patients with CML. Since TKI therapies were introduced and their results observed, very little innovative research has been conducted in CML. However, several important research directions remain, including, evaluating attempts to truly cure CML, i.e., patients off therapy with no detectable disease, evaluating long-term side effects and improving health related quality of life for patients who are unable to discontinue TKIs, and treatment of patients who are resistant to TKIs. Given that CML is a rare disease, this can only be achieved with considerable collaboration amongst CML experts. Such a collaboration is ongoing in the US NIH-funded Life After Stopping TKIs (LAST) study, which directly led to establishing the H. Jean Khoury Cure CML Consortium (HJKC3, named after a founding member, the late H. Jean Khoury, MD). One of the goals of the HJKC3 is to establish a national CML registry. A registry would collect longitudinal patient information to meet the critical need for both early and late outcomes research. A national CML registry is likely the only viable mechanism for identifying this population, enumerating baseline information, and addressing critical questions regarding late outcomes that may otherwise never be answered. This registry would also serve several other goals. The first aim of this registry is to prospectively collect and evaluate patient and physician compliance with recommended monitoring guidelines. The second goal is to collect data on survivorship. Some CML medications are associated with increased cardiovascular risk, nephrotoxicity, and pulmonary complications. Ensuring adequate medical monitoring of these long-term side effects and appropriately intervening is crucial to improve survival in patients with CML. The third goal is collecting patient reported outcome data directly from patients and linking that to compliance, complications, and clinical outcomes data. Lastly, this registry would inform potential clinical trials. Methods: After obtaining IRB approval, a pilot CML registry was developed at our institution with the goal of establishing the architecture for the infrastructure for a national CML registry. During this pilot we had two primary aims: first, to establish the most practical and efficient method for clinical data collection and second, to build and pilot test patient-reported outcome data collection. Retrospective clinical data was collected using REDCap with two primary mechanisms to populate the data into REDCap: 1) direct extraction and transfer of the data from the EHR and 2) manual chart review and data abstraction for complex fields or fields that require clinical interpretation. Broad categories of data that can be extracted from EMR include demographics, prior medical diagnosis, medications, some lab data, and prescription fill history. Examples of those requiring manual chart review include toxicity data, response, and disease progression data. For prospective chart review and patient-reported outcome data collection, informed consent was obtained electronically. Patient-reported outcomes assessments were administered online by emailing the study subjects a link to access a secure REDCap platform hosted by the MCW (CTSI) Clinical and Translational Science Institute. Measures include PROMIS computerized adaptive tests and select additional measures assessing a broad range of physical, emotional, cognitive, and social health domains. Progress: We identified 164 patients with CML to evaluate for inclusion. Of these, 72 (44%) were non-evaluable due to death, not an established patients, or other reasons and were included retrospectively only, while 92 (56%) were identified as potentially eligible for retrospective and prospective data collection. An invitation to join that included consent was sent to the 72 patients who had agreed to be contacted by email. Of those, 50 consented and 45 completed the baseline PROs, representing a 63% response rate. At 6 months, 39 completed the PRO assessment, representing an 87% retention rate. Data regarding human resource utilization are being collected to inform expected overall costs for a national registry. The next step is to expand to other sites in the HJKC3. Disclosures Atallah: Jazz: Consultancy; Helsinn: Consultancy; Jazz: Consultancy; Helsinn: Consultancy; Novartis: Consultancy; Takeda: Consultancy, Research Funding; Pfizer: Consultancy. Shaw:Therakos: Other: Speaker Engagement.

scholarly journals Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful

Cancer ◽  
2017 ◽  
Vol 123 (23) ◽  
pp. 4687-4700 ◽  
Author(s):  
Bronwen E. Shaw ◽  
Ruta Brazauskas ◽  
Heather R. Millard ◽  
Rachel Fonstad ◽  
Kathryn E. Flynn ◽  
...  
Keyword(s):  
Data Collection ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Reported ◽  
Outcome Data Collection

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

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

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

scholarly journals Patient‐Reported Outcome Data From an Early Rheumatoid Arthritis Trial: Opportunities for Broadening the Scope of Treating to Target

2019 ◽  
Vol 71 (12) ◽  
pp. 1566-1575 ◽  
Author(s):  
Kristien Van der Elst ◽  
Patrick Verschueren ◽  
Veerle Stouten ◽  
Sofia Pazmino ◽  
An De Groef ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Early Rheumatoid Arthritis ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Reported

PatientConcept App � an innovative tool to improve therapy adherence and to implement risk management plans. (Preprint)

2018 ◽  
Author(s):  
Michael Lang ◽  
Martin Mayr ◽  
Stefan Ringbauer ◽  
Lukas Cepek
Keyword(s):  
Risk Management ◽  
Disease Management ◽  
Chronically Ill ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Daily Routine ◽  
Software Application ◽  
Patient Reported ◽  
Management Plans ◽  
Chronically Ill Patients

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.

Sign in / Sign up

Export Citation Format

Share Document