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

Abstract

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.

Exposure to Waterpipe Smoke Disrupts Erythrocyte Homeostasis of BALB/c Mice

“…The mice were secured in gentle restraints and connected to an exposure tower following the method described by Nemmar et al [ 16 , 17 , 22 , 23 ]. To expose them, a nose-only system connected to a waterpipe (InExpose System, Scireq, Montréal, Canada) was employed, and the animals were exposed through their noses.…”

Evaluation of the sexual health in people living with hemophilia

“…The PROBE questionnaire can be administered on paper or through the myPROBE app and website. 25,26 The PROBE survey includes specific questions on difficulty with sexual intimacy.…”

“…The PROBE is a questionnaire requiring 7–15 minutes for completion and is intended for anonymous filling by PWH recruited by National Member Organizations of the World Federation of Hemophilia (NMOs) and matched control groups in 48 countries. The PROBE questionnaire can be administered on paper or through the myPROBE app and website 25,26 . The PROBE survey includes specific questions on difficulty with sexual intimacy.…”

Adaptación cultural del cuestionario PedHAL (pediatric haemophilia activities list), Cali, Colombia (Cultural adaptation of the PedHAL (pediatric hemophilia activity list), Cali, Colombia)

“…El amplio rango de edad podría generar diferente impacto en las diversas actividades listadas en el cuestionario sobre todo para los mayores. Sugirieron la posibilidad de utilizar la versión para adultos de Hemophilia Activities List (HAL) para la evaluación de los menores entre 14 y 18 años (Germini et al, 2022;Hermans et al, 2015;Sherlock et al, 2010).…”