Symptom screening via screen: Real‐time electronic tracking of pediatric patient‐reported outcomes

157 Background: The use of digital health technology, including mobile applications, in the clinical setting is becoming increasingly more prevalent. Such technology is currently being explored as clinical research tools. While the side effects of prostate radiotherapy are well documented after treatment, there remains a paucity of data on patient-reported outcomes and changes in quality of life (QOL) during the treatment period. Therefore, mobile applications represent a practical platform to enable patient reporting in real-time during prostate radiotherapy. Methods: Using an existing open source code framework (Apple ResearchKit), we developed a novel mobile application that enables prostate cancer patients to report, either during or immediately following daily radiation treatment, changes in urinary, bowel, sexual, and hormonal QOL domains. The mobile application utilizes validated questions from the Expanded Prostate Index Composite for Clinical Practice (EPIC-CP) Survey, and allows for survey responses to be tracked over time throughout the treatment period and at routine follow up. Results: For the initial phase of our study, we are currently piloting the mobile application at a single institution with a goal of accruing 50 patients. Study results will be compared to data from traditional surveys, which are available at follow-up but impracticable for real-time symptom reporting. By ASCO 2016 Genitourinary Cancers Symposium, we plan to begin the second phase of our study where any patient can enroll online through a mobile software distribution platform (Apple App Store). Conclusions: We demonstrate the feasibility of using a mobile application to enable patients to report quality of life changes in real-time during prostate radiotherapy. Moreover, our application facilitates clinical trials where patient data collection can be automated and completed at scale. Future prospective studies are planned to evaluate validity of clinical trial data gathered through such methodology.

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PMC29 PATIENT REPORTED OUTCOMES RESEARCH IN A REAL TIME PRACTICE NETWORK

Value in Health ◽

10.1016/s1098-3015(10)66868-4 ◽

2008 ◽

Vol 11 (6) ◽

pp. A568

Author(s):

JT Barr ◽

GE Schumacher ◽

E Myers ◽

L Snetselaar

Keyword(s):

Real Time ◽

Outcomes Research ◽

Patient Reported Outcomes ◽

Patient Reported ◽

Practice Network

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Development of a Smartphone Application to Monitor Pediatric Patient-Reported Outcomes

CIN Computers Informatics Nursing ◽

10.1097/cin.0000000000000357 ◽

2017 ◽

Vol 35 (11) ◽

pp. 590-598 ◽

Cited By ~ 10

Author(s):

Jingting Wang ◽

Nengliang (Aaron) Yao ◽

Yanyan Liu ◽

Zhaohui Geng ◽

Yuanyuan Wang ◽

...

Keyword(s):

Pediatric Patient ◽

Patient Reported Outcomes ◽

Smartphone Application ◽

Patient Reported

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Supporting Clinical Practice Decisions With Real-Time Patient-Reported Outcomes

Journal of Clinical Oncology ◽

10.1200/jco.2010.33.2668 ◽

2011 ◽

Vol 29 (8) ◽

pp. 954-956 ◽

Cited By ~ 90

Author(s):

Ethan Basch ◽

Amy P. Abernethy

Keyword(s):

Clinical Practice ◽

Real Time ◽

Patient Reported Outcomes ◽

Patient Reported

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Recommended Scoring Approach for the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events

10.22541/au.163256736.67094089/v1 ◽

2021 ◽

Author(s):

Pamela Hinds ◽

Laura Pinheiro ◽

Molly McFatrich ◽

Mia Waldron ◽

Justin Baker ◽

...

Keyword(s):

Adverse Events ◽

Pediatric Patient ◽

Patient Reported Outcomes ◽

Clinical Care ◽

Reference Population ◽

Item Score ◽

Information Display ◽

Patient Reported ◽

The Common ◽

Positive Correlations

Background Collecting symptom, function and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here we report how we determined the recommended Ped-PRO-CTCAE item scoring approach. Methods Scoring approaches compared were 1) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures, 2) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference), and 3) overall number of AEs endorsed. Associations of each AE attribute, AE item score and overall AE score with the PROMIS® Pediatric measures of anxiety, depressive symptoms, and fatigue were examined. The ability of the overall Ped-Pro-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews. Results The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term). Conclusions Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-Pro-CTCAE AE attribute for its simplicity of use in clinical care and research.

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