McNeill Nuray A, Kors Wijnanda A, Bosscha Machteld I, van Dijk Jennifer, Fabius Armida W M, Houffelaar Ton, Verdonck-de Leeuw Irma M, Moll Annette C
Department of Ophthalmology, VU University Medical Center, De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
Department of Pediatric Oncology, VU University Medical Center, De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
J Cancer Surviv. 2017 Dec;11(6):683-690. doi: 10.1007/s11764-017-0642-z. Epub 2017 Sep 25.
The current study aimed to evaluate the feasibility of RetinoQuest in clinical practice, from survivors and healthcare professionals' (HCPs) point of view.
RetinoQuest is a touch screen computer program to monitor health-related quality of life (HRQoL) of retinoblastoma survivors via patient-reported outcome measures (PROMs) targeting children (4-10 years) as evaluated by their parents (proxy measures), adolescents (11-18 years), and adults. Feasibility was evaluated by the actual time taken to complete the PROMs, acceptability of the time as perceived by the users, the content of PROMs in RetinoQuest, and overall satisfaction with RetinoQuest.
Ninety-six survivors participated: 41 parents of children, 38 adolescents, and 17 adults. Mean time to complete the evaluation form was 7.8 min (median 6.7, range 2.4-24.5), and 90% of the users stated that the time needed to complete PROMs in RetinoQuest was acceptable. The majority of users reported that it was important to answer the questions (88% of the parents, 66% of the adolescents, and 76% of the adult survivors) and that all important issues were covered, e.g., no missing questions (78, 84, and 76%, respectively). Satisfaction rate was high, 7.8 according to parents, 8.1 according to adolescents, and 7.7 for adults.
RetinoQuest is a feasible e-health application to monitor HRQoL in retinoblastoma survivors in clinical practice.
This tool allows for open and structured communication which can lead to early detection of psychosocial impacts on quality of life and referral of the retinoblastoma survivors.
本研究旨在从幸存者和医疗保健专业人员（HCPs）的角度评估RetinoQuest在临床实践中的可行性。
RetinoQuest是一个触摸屏计算机程序，通过针对儿童（4 - 10岁，由其父母进行代理测量）、青少年（11 - 18岁）和成年人的患者报告结局测量（PROMs）来监测视网膜母细胞瘤幸存者的健康相关生活质量（HRQoL）。通过完成PROMs实际花费的时间、用户对该时间的可接受性、RetinoQuest中PROMs的内容以及对RetinoQuest的总体满意度来评估可行性。
96名幸存者参与：41名儿童的父母、38名青少年和17名成年人。完成评估表的平均时间为7.8分钟（中位数6.7，范围2.4 - 24.5），90%的用户表示在RetinoQuest中完成PROMs所需的时间是可以接受的。大多数用户报告回答问题很重要（88%的父母、66%的青少年和76%的成年幸存者），并且涵盖了所有重要问题，例如没有遗漏问题（分别为78%、84%和76%）。满意度很高，父母的评分为7.8，青少年为8.1，成年人为7.7。
RetinoQuest是一种可行的电子健康应用程序，可在临床实践中监测视网膜母细胞瘤幸存者的HRQoL。
该工具允许进行开放和结构化的沟通，这可以导致早期发现对生活质量的心理社会影响，并为视网膜母细胞瘤幸存者提供转诊。
