The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.

BACKGROUND: Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called "Teens Taking Charge: Managing OI Online," hereafter named "Teens OI." This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. OBJECTIVE: The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. METHODS: A user-centered design is presently in progress to design and develop Teens OI. A "Website Design and Development Council" (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. RESULTS: As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. CONCLUSIONS: The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths' openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47524.

Development of a freeze-dried symbiotic obtained from rice bran.

This study aimed to assess the growth potential of L.acidophilus and L.plantarum in rice bran, a co-product from the food industry, and subsequently develop a freeze-dried symbiotic. Furthermore, phytochemicals and antioxidant properties were analysed. The growth was measured using growth kinetics over 72 h. The total phenolic compounds were analysed by the Folin-Ciocalteau method and antioxidant potential by DPPH and ABS methods. Freeze-drying process occurred using a pilot-scale equipment (Liotop LP510), verification and quantification of probiotics occurred through molecular analyses, as DNA extraction and qPCR. As a result, there was a good growth in rice bran (p = 0.04), suggesting its prebiotic potential. Rice bran also showed significant concentrations of phenolic compounds (3.69 mgEAG/mL ± 0.04) and antioxidant activity according ABTS (8.35 µmol ET/mL ± 0.106) and DPPH (24.71 µmol ET/mL ± 7.90) methods. The bacteria concentration decreased significantly when submitted to the freeze-drying process (p = 0.001), however, they remained by the minimum concentration required for a product to be considered a symbiotic. Therefore, it was concluded that rice bran and these analysed bacteria proved to be effective for a symbiotic formulation.