van der Hout A, van Uden-Kraan C F, Holtmaat K, Jansen F, Lissenberg-Witte B I, Nieuwenhuijzen G A P, Hardillo J A, Baatenburg de Jong R J, Tiren-Verbeet N L, Sommeijer D W, de Heer K, Schaar C G, Sedee R J E, Bosscha K, van den Brekel M W M, Petersen J F, Westerman M, Honings J, Takes R P, Houtenbos I, van den Broek W T, de Bree R, Jansen P, Eerenstein S E J, Leemans C R, Zijlstra J M, Cuijpers P, van de Poll-Franse L V, Verdonck-de Leeuw I M
Department of Clinical, Neuro- and Developmental Psychology, Amsterdam Public Health Research Institute, Vrije Universiteit Amsterdam, the Netherlands.
Cancer Center Amsterdam (CCA), Amsterdam UMC, Amsterdam, the Netherlands.
Internet Interv. 2021 Jul 15;25:100429. doi: 10.1016/j.invent.2021.100429. eCollection 2021 Sep.
The web-based self-management application Oncokompas was developed to support cancer survivors to monitor health-related quality of life and symptoms (Measure) and to provide tailored information (Learn) and supportive care options (Act). In a previously reported randomised controlled trial (RCT), 68% of 655 recruited survivors were eligible, and of those 45% participated in the RCT. Among participants of the RCT that were randomised to the intervention group, 52% used Oncokompas as intended. The aim of this study was to explore reasons for not participating in the RCT, and reasons for not using Oncokompas among non-users, and the use and evaluation of Oncokompas among users.
Reasons for not participating were assessed with a study-specific questionnaire among 243 survivors who declined participation. Usage was investigated among 320 participants randomised to the intervention group of the RCT via system data and a study-specific questionnaire that was assessed during the 1 week follow-up (T1) assessment.
Main reasons for not participating were not interested in participation in scientific research (40%) and not interested in scientific research and Oncokompas (28%). Main reasons for not being interested in Oncokompas were wanting to leave the period of being ill behind (29%), no symptom burden (23%), or lacking internet skills (18%). Out of the 320 participants in the intervention group 167 (52%) used Oncokompas as intended. Among 72 non-users, main reasons for not using Oncokompas were no symptom burden (32%) or lack of time (26%). Among 248 survivors that activated their account, satisfaction and user-friendliness were rated with a 7 (scale 0-10). Within 3 (IQR 1-4) sessions, users selected 32 (IQR 6-37) topics. Main reasons for not using healthcare options in Act were that the information in Learn was already sufficient (44%) or no supportive care needs (32%).
Main reasons for not reaching or using Oncokompas were no symptom burden, no supportive care needs, or lack of time. Users selected many cancer-generic and tumour-specific topics to address, indicating added value of the wide range of available topics.
基于网络的自我管理应用程序Oncokompas旨在支持癌症幸存者监测与健康相关的生活质量和症状（测量），并提供量身定制的信息（学习）和支持性护理选项（行动）。在先前报道的一项随机对照试验（RCT）中，655名招募的幸存者中有68%符合条件，其中45%参与了该RCT。在随机分配到干预组的RCT参与者中，52%按预期使用了Oncokompas。本研究的目的是探讨未参与RCT的原因、非使用者中未使用Oncokompas的原因以及使用者对Oncokompas的使用和评价。
通过一份针对特定研究的问卷，对243名拒绝参与的幸存者评估未参与的原因。通过系统数据和一份在1周随访（T1）评估期间进行评估的针对特定研究的问卷，对随机分配到RCT干预组的320名参与者的使用情况进行调查。
未参与的主要原因是对参与科学研究不感兴趣（40%）以及对科学研究和Oncokompas都不感兴趣（28%）。对Oncokompas不感兴趣的主要原因是想告别患病时期（29%）、没有症状负担（23%）或缺乏互联网技能（18%）。在干预组的320名参与者中，167名（52%）按预期使用了Oncokompas。在72名未使用者中，未使用Oncokompas的主要原因是没有症状负担（32%）或没有时间（26%）。在248名激活账户的幸存者中，满意度和用户友好度评分为7（0 - 10分制）。在3（四分位间距1 - 4）次会话中用户选择了32（四分位间距6 - 37）个主题。在“行动”中未使用医疗保健选项的主要原因是“学习”中的信息已经足够（44%）或没有支持性护理需求（32%）。
未接触或使用Oncokompas的主要原因是没有症状负担、没有支持性护理需求或没有时间。用户选择了许多癌症通用和肿瘤特异性主题来关注，表明大量可用主题具有附加价值。
