scholarly journals Patient‐Reported Outcome Information Collected from Lupus Patients Using a Mobile Application: Compliance and Validation

2021 ◽  
Author(s):  
Kristy Bell ◽  
Claire Dykas ◽  
Bridget Muckian ◽  
Brooke Williams ◽  
Hope Rainey ◽  
...  
2019 ◽  
Vol 5 (suppl) ◽  
pp. 9-9
Author(s):  
Naiyarat Prasongsook ◽  
Kasan Seetalarom ◽  
Siriwimon Saichaemchan ◽  
Kitipong Udomdamrongkul

9 Background: Web-based patient reported outcome (PRO) improved quality of life (QoL), and overall survival (OS) in patients with advanced NSCLC who were treating with specific therapy. Lung Cancer Care application is a mobile application program that provides patients with individually tailored information on patient reported outcome. This study aims to invent a novel mobile application evaluating PRO for Thai NSCLC patients, and to evaluate the validity of mobile application. Methods: Our mobile application-based PRO was designed for monitoring quality of life. The validity of the application was tested following guidelines for translating, and validating a questionnaire. The quality of life score (FACT-L score). After the validated mobile application-based PRO, patients with advanced NSCLC were randomized to use mobile application-based PRO versus routine follow-up. The primary endpoint was quality of life (QoL). Secondary endpoint was OS. Results: Thirty-three patients with advanced NSCLC were enrolled. The mean of FACT-L score at baseline in mobile application-based PRO arm and routine follow up arm was similar (90.08 ± 5.66 vs 91.78 ± 5.26, p-value= 0.82). Patients with mobile application group had more FACT-L score at 3 months than patients with routine follow up arm (106 ± 5.97 vs 99.96 ± 5.74, p-value = 0.07). There was a trend towards increased in different mean of FACT-L score at baseline and 3 months in patients with mobile application compared to patients with routine follow up ( p-value = 0.05). The median follow-up time was 5.43 months, patients with mobile application had longer median OS than patients with routine follow up (4 months vs 2.9 months, p-value = 0.5). Conclusions: Lung Cancer Care application based on self-reported symptoms is a novel electronic device for real-time patient care monitoring. Our study results showed trend towards improved quality of life from using this novel mobile application. However, there was small samples for pilot testing, the relatively large sampling errors may reduce the statistical power needed to validate this tool.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 206-206
Author(s):  
Liana Yocavitch ◽  
Adam Binder ◽  
Amy Leader ◽  
Gregory D. Garber ◽  
Andrew E. Chapman ◽  
...  

206 Background: Electronic patient reported outcomes (ePROs) can bridge the communication gap with a patient’s care, providing insight into patients’ symptoms between clinical visits and improving both symptom management and overall survival. PROs are typically monitored through standardized questionnaires given to patients at specific times during their treatment. We endeavored to implement a mobile application-based ePRO tool at an urban academic cancer center. Methods: During an 8-week period, cancer patients on active intravenous chemotherapy were approached for enrollment during their infusion appointment. English-speaking patients with a smartphone and an active email address were eligible to download the app and enroll in the program. Two patient coordinators enrolled patients and demonstrated the use of the ePRO tool. Barriers to enrollment were tracked; subsequent utilization by enrolled patients was assessed. Results: 108 patients (63% White, 22% African American, 7% Asian, 2% Hispanic, 6% unknown; mean age 65 years) were approached for enrollment. Among those, 32 (30%) were ineligible. The most common reasons for ineligibility were the lack of a smart phone or active email address. 76 patients (70%) were eligible for enrollment. Of the 76 patients, 19 (25%) declined, 20 (26 %) were unable to complete registration due to technical barriers, and 37 patients (49 %) successfully registered. Of registered patients, 19 (25%) utilized the ePRO tool on at least one occasion. Patients who utilized the ePRO tool tended to be younger, female, and white. Conclusions: A mobile application-based ePRO presented several challenges to implementation in our patient population. Nearly 50% of patients were either ineligible or experienced technical issues that precluded enrollment. Successful ePRO implementation may benefit from a variety of mechanisms by which to collect data, such desktop-based, text-based, and or telephonic-based approaches. Ongoing iterations are in process at our institution.


CJEM ◽  
2018 ◽  
Vol 20 (S1) ◽  
pp. S9-S9
Author(s):  
S. Vaillancourt ◽  
J. Cullen ◽  
D. Linton ◽  
A. Copti Fahmy ◽  
K. Dainty ◽  
...  

Introduction: Patient-reported outcome measures (PROM) are questionnaires that can be used to elicit care outcome information from patients. We sought to develop and validate the first PROM for adult patients without a primary mental health or addictions presentation receiving emergency department (ED) care and who were not hospitalized. Methods: PROM development used a multi-phase process based on national and international guidance (FDA, NQF, ISPOR). Phase 1: ED outcome conceptual framework qualitative interviews with ED patients post-discharge informed four core domains (previously published). Phase 2: Item generation scoping review of the literature and existing instruments identified candidate questions relevant for each domain for inclusion in tool. Phase 3: Cognitive debriefing existing and newly written questions were tested with ED patients post-discharge for comprehension and wording preference. Phase 4: Field and validity testing revised tool pilot tested on a national online survey panel and then again at 2 weeks (test-retest). Phase 5: Final item reduction using a Delphi process involving ED clinicians, researchers, patients and system administrators. Phase 6: Validation - psychometric testing of PROM-ED 1.0. Results: Four core outcome domains were defined in Phase 1: (1) understanding; (2) symptom relief; (3) reassurance and (4) having a plan. The domains informed a review of existing relevant questionnaires and instruments and the writing of additional questions creating an initial long-form questionnaire. Eight patients participated in cognitive debriefing of the long-form questionnaire. Expert clinicians, researchers and patient partners provided input on item refinement and reduction. Four hundred forty-four patients completed a second version of the long-form questionnaire (add in retest numbers) which informed the final item reduction process by a modified Delphi method involving 21 diverse contributors. The questionnaire was validated and underwent final revisions to create the 21 questions that constitute PROM-ED 1.0. Conclusion: Using accepted PROM instrument development methodology, we developed the first outcome questionnaire for use with adult ED patients who are not hospitalized. This questionnaire can be used to systematically gather patient-reported outcome information that could support and inform improvement work in ED care.


2017 ◽  
Vol 19 (02) ◽  
pp. 151-164 ◽  
Author(s):  
Parminder K. Hans ◽  
Carolyn Steele Gray ◽  
Ashlinder Gill ◽  
James Tiessen

AimThis qualitative study investigates how the Electronic Patient-Reported Outcome (ePRO) mobile application and portal system, designed to capture patient-reported measures to support self-management, affected primary care provider workflows.BackgroundThe Canadian health system is facing an ageing population that is living with chronic disease. Disruptive innovations like mobile health technologies can help to support health system transformation needed to better meet the multifaceted needs of the complex care patient. However, there are challenges with implementing these technologies in primary care settings, in particular the effect on primary care provider workflows.MethodsOver a six-week period interdisciplinary primary care providers (n=6) and their complex care patients (n=12), used the ePRO mobile application and portal to collaboratively goal-set, manage care plans, and support self-management using patient-reported measures. Secondary thematic analysis of focus groups, training sessions, and issue tracker reports captured user experiences at a Toronto area Family Health Team from October 2014 to January 2015.FindingsKey issues raised by providers included: liability concerns associated with remote monitoring, increased documentation activities due to a lack of interoperability between the app and the electronic patient record, increased provider anxiety with regard to the potential for the app to disrupt and infringe upon appointment time, and increased demands for patient engagement. Primary care providers reported the app helped to focus care plans and to begin a collaborative conversation on goal-setting. However, throughout our investigation we found a high level of provider resistance evidenced by consistent attempts to shift the app towards fitting with existing workflows rather than adapting much of their behaviour. As health systems seek innovative and disruptive models to better serve this complex patient population, provider change resistance will need to be addressed. New models and technologies cannot be disruptive in an environment that is resisting change.


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