TY - JOUR AU - Rudolf, Isa AU - Pieper, Katharina AU - Nolte, Helga AU - Junge, Sibylle AU - Dopfer, Christian AU - Sauer-Heilborn, Annette AU - Ringshausen, Felix C AU - Tümmler, Burkhard AU - von Jan, Ute AU - Albrecht, Urs-Vito AU - Fuge, Jan AU - Hansen, Gesine AU - Dittrich, Anna-Maria PY - 2019 DA - 2019/11/21 TI -对患有囊性纤维化的青少年和年轻人的移动应用程序的评估:试点评估JO - JMIR Mhealth Uhealth SP - e12442 VL - 7 IS - 11 KW -手机KW -手机应用KW - Mhealth KW -自我管理KW -青少年KW -囊性纤维化AB -背景:囊性纤维化(CF)仍然是青少年和年轻人中最常见的限制生命的慢性肺部疾病。CF的治疗需要大量的治疗时间投资，以减缓肺功能衰退的进展，肺功能衰退是导致发病率和死亡率的最重要因素。由于治疗负担高，且在不坚持的情况下缺乏直接的健康后果，CF患者的依从性具有挑战性。肺功能下降在12 - 24岁的过渡阶段尤为明显。自我管理和自我责任的提高，对父母的独立以及对正常生活的渴望是许多患有CF的青少年相互冲突的方面，这影响了对耗时的肺部治疗的坚持。移动健康(mHealth)护理应用程序可以帮助支持自我管理和独立，从而协调看似冲突的目标，以提高依从性、生活质量，并最终提高CF预期寿命。目的:本研究旨在(1)在三个月的观察期内，使用移动健康应用程序评估患有CF的青少年和年轻人的用户行为和满意度;(2)确定移动健康应用程序的改进领域;(3)比较使用mHealth应用程序前后的总体和疾病特异性满意度、肺功能和人体测量学。方法:共有27名患有CF的青少年和青年(年龄12-24岁，平均年龄16岁，SD 3岁; 14 females, 11 males) used a free mHealth app for three months of whom 25 provided questionnaire data for analysis at the end of the study. Data collection was carried out using questionnaires on usage characteristics and life satisfaction, and standardized assessment of lung function and anthropometry. Results: The use of the reminder function for medication declined from 70% (15/21) of the participants at week 4 to 65% (13/20) at week 8 of the observation period. At the end of the study, only 17% (4/23) of the participants wanted to continue using the app. Nevertheless, 56% (14/25) of participants saw the mobile app as a support for everyday life. Potential improvements targeting hedonistic qualities were identified to improve mHealth app adherence. Comparisons of satisfaction with different life aspects hinted at improvements or stabilization for the subitem respiration and the subitem lack of handicap by CF, suggesting that app use might stabilize certain CF-specific aspects of the weighted satisfaction with life. Lung function and anthropometry were not affected consistently. Conclusions: Most of the patients did not want to continue using the app after the study period. Only a few CF-specific aspects of weighted life satisfaction were possibly stabilized by the mHealth app; clinical parameters were not affected. Adaptation of the functions to adolescent-specific needs could improve the long-term use and thus positively affect the disease course. SN - 2291-5222 UR - https://mhealth.www.mybigtv.com/2019/11/e12442 UR - https://doi.org/10.2196/12442 UR - http://www.ncbi.nlm.nih.gov/pubmed/31750841 DO - 10.2196/12442 ID - info:doi/10.2196/12442 ER -