"Like a Clinical Nurse Consultant in Your Pocket"-Parents' and Health Care Providers' Perceptions of a Co-Designed Smartphone App Following Treatment for Pediatric Cancer: Mixed Methods Evaluation Study.

چکیده اصلی

BACKGROUND: Pediatric cancer presents many challenges for young patients and families that extend beyond active treatment. Families report significant unmet information and supportive care needs at the end of treatment (EOT). Digital health solutions, such as patient apps, offer a potential solution to address current gaps in care. OBJECTIVE: This study aimed to develop and test a smartphone app called LotusLab, designed to improve access to survivorship information for parents of childhood cancer survivors aged 0 to 18 years, and for young people (aged 12 years and older) at the EOT. In addition, this study aimed to examine parents' and health care providers' (HCPs) perceptions of LotusLab during β-testing to inform further app development and refinement. METHODS: Participants were invited to explore the content and key functionality of LotusLab, including an embedded patient-reported outcome measure (PROM). Evaluation of the usability, acceptability, usefulness, and feasibility of the app was conducted through quantitative surveys and qualitative semistructured interviews. RESULTS: Participants comprised 8 parents whose children had completed cancer treatment, and 9 HCPs. All participants (100%) "agreed" or "strongly agreed" that the app was acceptable; however, HCPs reported more neutral acceptability responses compared with parents. Parents scored app usability more highly, with a mean System Usability Scale (SUS) score of 86.88 (SD 8.74), than HCPs' mean SUS score of 66.39 (SD 10.16). A common perceived benefit of LotusLab was the provision of trusted information and psychosocial resources. Suggestions for improvement included adding a search function, enhancing the layout, and adding additional topics. All parents completed the app-embedded PROM. Both cohorts noted the value of the PROM in enhancing EOT consultations, while highlighting considerations for the effective integration of and response to PROM data. CONCLUSIONS: Initial data indicate that LotusLab is easy for parents to use and provides value through the provision of EOT information and the opportunity to enhance the use of the PROM. Consistent with the co-design methodology, these findings are guiding the ongoing development and implementation of LotusLab.

ترجمه فارسی چکیده

پرستاران و ارائه‌دهندگان مراقبت سلامت (HCPs) اپلیکیشن هوشمند LotusLab را پس از پایان درمان (EOT) برای کودکان مبتلا به سرطان و جوانان (سن ۱۲ سال به بالا) ارزیابی کردند. اپلیکیشن شامل یک شاخص نتیجه‌ای گزارش‌شده توسط بیمار (PROM) بود. نتایج نشان داد که اپلیکیشن قابل استفاده و قابل قبول است، اما نمرات کارایی آن بین والدین و HCPs متفاوت بود. والدین نمره کارایی بالاتری داشتند و اپلیکیشن به عنوان منبعی برای اطلاعات و منابع روان‌شناختی معتبر شناخته شد. پیشنهادات بهبود شامل افزودن قابلیت جستجو و بهبود چیدمان بود.

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