Reasons for not reaching or using web-based self-management applications, and the use and evaluation of Oncokompas among cancer survivors, in the context of a randomised controlled trial,Internet Interventions

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Reasons for not reaching or using web-based self-management applications, and the use and evaluation of Oncokompas among cancer survivors, in the context of a randomised controlled trial
Internet Interventions ( IF 3.6 ) Pub Date : 2021-07-15 , DOI: 10.1016/j.invent.2021.100429
A van der Hout _{1,

2} , C F van Uden-Kraan _{1,

2} , K Holtmaat _{1,

2} , F Jansen _{2,

3} , B I Lissenberg-Witte ₄ , G A P Nieuwenhuijzen ₅ , J A Hardillo ₆ , R J Baatenburg de Jong ₆ , N L Tiren-Verbeet ₇ , D W Sommeijer _{8,

9} , K de Heer _{8,

10} , C G Schaar ₁₁ , R J E Sedee ₁₂ , K Bosscha ₁₃ , M W M van den Brekel ₁₄ , J F Petersen ₁₄ , M Westerman ₁₅ , J Honings ₁₆ , R P Takes ₁₆ , I Houtenbos ₁₇ , W T van den Broek ₁₈ , R de Bree ₁₉ , P Jansen ₂₀ , S E J Eerenstein _{2,

3} , C R Leemans ₃ , J M Zijlstra _{2,

21} , P Cuijpers ₁ , L V van de Poll-Franse _{22,

23,

24} , I M Verdonck-de Leeuw _{1,

2,

3}

Affiliation

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.
Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Otolaryngology - Head and Neck Surgery, Amsterdam, the Netherlands.
Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Epidemiology and Data Science, Amsterdam, the Netherlands.
Department of Surgery, Catharina Hospital, Eindhoven, the Netherlands.
Department of Otolaryngology and Head and Neck Surgery, Erasmus MC Cancer Centre, Erasmus Medical Center, Rotterdam, the Netherlands.
Department of Hematology, Erasmus Medical Center, Rotterdam, the Netherlands.
Department of Internal Medicine, Flevoziekenhuis, Almere, the Netherlands.
Amsterdam UMC, University of Amsterdam, Department of Medical Oncology, Amsterdam, the Netherlands.
Amsterdam UMC, University of Amsterdam, Department of Hematology, Amsterdam, the Netherlands.
Department of Internal Medicine, Gelre ziekenhuis, Apeldoorn, the Netherlands.
Department of Otolaryngology, Head and Neck Surgery, Haaglanden MC, The Hague, the Netherlands.
Department of Surgery, Jeroen Bosch Ziekenhuis, Den Bosch, the Netherlands.
Department of Head and Neck Surgery, Netherlands Cancer Institute, Amsterdam, the Netherlands.
Department of Hematology, Northwest Clinics, Alkmaar, the Netherlands.
Department of Otorhinolaryngology - Head and Neck Surgery, Radboud University Medical Center, Nijmegen, the Netherlands.
Department of Hematology, Spaarne Gasthuis, Hoofddorp, the Netherlands.
Department of Surgery, St. Anna Hospital, Geldrop, the Netherlands.
Department of Head and Neck Surgical Oncology, Utrecht University Medical Center, Utrecht, the Netherlands.
Department of Surgery, Elisabeth-TweeSteden Hospital, Tilburg, the Netherlands.
Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Hematology, Amsterdam, the Netherlands.
Department of Research, Netherlands Comprehensive Cancer Organisation, Eindhoven, the Netherlands.
Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, the Netherlands.
CoRPS - Center of Research on Psychological and Somatic Disorders, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands.

Introduction

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.

Methods

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.

Results

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%).

Discussion

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.

中文翻译：

在随机对照试验的背景下，未达到或使用基于网络的自我管理应用程序的原因，以及 Oncokompas 在癌症幸存者中的使用和评估

介绍

开发基于网络的自我管理应用程序 Oncokompas 是为了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（法案）。在先前报道的随机对照试验 (RCT) 中，655 名招募的幸存者中有 68% 符合条件，其中 45% 参加了 RCT。在随机分配到干预组的 RCT 参与者中，52% 的参与者按预期使用了 Oncokompas。本研究的目的是探讨不参加 RCT 的原因，非使用者中不使用 Oncokompas 的原因，以及使用者中对 Oncokompas 的使用和评价。

方法

拒绝参与的 243 名幸存者通过研究特定问卷评估了不参与的原因。通过系统数据和在 1 周随访 (T1) 评估期间评估的研究特定问卷调查了随机分配到 RCT 干预组的 320 名参与者的使用情况。

结果

不参与的主要原因是对参与科学研究不感兴趣（40%），对科学研究和 Oncokompas 不感兴趣（28%）。对 Oncokompas 不感兴趣的主要原因是希望摆脱生病的时期 (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 名非使用者中，不使用 Oncokompas 的主要原因是没有症状负担 (32%) 或没有时间 (26%)。在激活帐户的 248 名幸存者中，满意度和用户友好度被评为 7 分（0-10 分）。在 3 (IQR 1-4) 会话中，用户选择了 32 (IQR 6-37) 主题。