User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study.
EQ-5D
Patient-Reported Outcomes, Burdens, and Experiences (PROBE)
eHealth
health-related quality of life
hemophilia
mHealth
mobile app
mobile health
telehealth
user-centered design
Journal
JMIR human factors
ISSN: 2292-9495
Titre abrégé: JMIR Hum Factors
Pays: Canada
ID NLM: 101666561
Informations de publication
Date de publication:
02 03 2022
02 03 2022
Historique:
received:
28
05
2021
accepted:
11
11
2021
revised:
25
10
2021
entrez:
2
3
2022
pubmed:
3
3
2022
medline:
3
3
2022
Statut:
epublish
Résumé
The Patient-Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a tool for assessing the quality of life and disease burden in people living with hemophilia. The objectives of our study were (1) to assess the needs of relevant stakeholders involved in the use of PROBE, (2) to develop the software infrastructure needed to meet these needs, and (3) to test the usability of the final product. We conducted a series of semistructured interviews of relevant stakeholders, including PROBE investigators, people with hemophilia, and representatives of the sponsor. Based on these, we developed an online survey and a mobile app for iOS and Android. A user group evaluated the final product using the System Usability Scale (SUS) and an open feedback framework. The online survey was updated, and the myPROBE app for mobile devices and a new application programming interface were developed. The app was tested and modified according to user feedback over multiple cycles. The final version of the app was released in July 2019. Seventeen users aged 23 to 67 years evaluated the final version of the app using the SUS. The median (first, third quartile) SUS score for the app was 85 (68, 88) out of 100. The newly introduced functionalities were as follows: (1) capability to longitudinally track repeated fillings of the questionnaire at different time points by the same participant (as opposed to anonymous completion); (2) linking of the questionnaire with hemophilia registries, starting with the Canadian Bleeding Disorders Registry as a proof of concept; (3) removing or adding questions as needed; and (4) sending notifications to the users (eg, reminders). A new secure database was built for securely storing personal information separately from the questionnaire data. The PROBE online survey is currently available in 96 countries and 34 languages. The online survey was updated successfully, and the myPROBE app was developed, with a SUS score of 85 (out of 100). The app has been released in 81 countries and 34 languages. This will facilitate data collection for research and advocacy purposes, and the use of this tool in everyday clinical practice.
Sections du résumé
BACKGROUND
The Patient-Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a tool for assessing the quality of life and disease burden in people living with hemophilia.
OBJECTIVE
The objectives of our study were (1) to assess the needs of relevant stakeholders involved in the use of PROBE, (2) to develop the software infrastructure needed to meet these needs, and (3) to test the usability of the final product.
METHODS
We conducted a series of semistructured interviews of relevant stakeholders, including PROBE investigators, people with hemophilia, and representatives of the sponsor. Based on these, we developed an online survey and a mobile app for iOS and Android. A user group evaluated the final product using the System Usability Scale (SUS) and an open feedback framework.
RESULTS
The online survey was updated, and the myPROBE app for mobile devices and a new application programming interface were developed. The app was tested and modified according to user feedback over multiple cycles. The final version of the app was released in July 2019. Seventeen users aged 23 to 67 years evaluated the final version of the app using the SUS. The median (first, third quartile) SUS score for the app was 85 (68, 88) out of 100. The newly introduced functionalities were as follows: (1) capability to longitudinally track repeated fillings of the questionnaire at different time points by the same participant (as opposed to anonymous completion); (2) linking of the questionnaire with hemophilia registries, starting with the Canadian Bleeding Disorders Registry as a proof of concept; (3) removing or adding questions as needed; and (4) sending notifications to the users (eg, reminders). A new secure database was built for securely storing personal information separately from the questionnaire data. The PROBE online survey is currently available in 96 countries and 34 languages.
CONCLUSIONS
The online survey was updated successfully, and the myPROBE app was developed, with a SUS score of 85 (out of 100). The app has been released in 81 countries and 34 languages. This will facilitate data collection for research and advocacy purposes, and the use of this tool in everyday clinical practice.
Identifiants
pubmed: 35234648
pii: v9i1e30797
doi: 10.2196/30797
pmc: PMC8928049
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e30797Investigateurs
Mark W Skinner
(MWS)
Chatree Chai-Adisaksopha
(CCA)
Randall G Curtis
(RGC)
Neil Frick
(NF)
Alfonso Iorio
(AI)
Michael B Nichol
(MB)
Declan Noone
(DN)
Brian O'Mahony
(BO)
David Page
(DP)
Jeffrey S Stonebraker
(JSS)
Informations de copyright
©Federico Germini, Victoria Borg Debono, David Page, Victoria Zuk, Alexandra Kucher, Chris Cotoi, Nicholas Hobson, Michael Sevestre, Mark W Skinner, Alfonso Iorio, PROBE Investigators. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 02.03.2022.
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