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

Abstract

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.

Efficacy of the eHealth application Oncokompas, facilitating incurably ill cancer patients to self-manage their palliative care needs: A randomized controlled trial

“…However, cancer-generic topics that were chosen frequently are similar among cancer survivors and incurably ill patients (fatigue and stress/tenseness). 33 …”

“…Reasons for not using Oncokompas were investigated in earlier studies: no symptom burden, a busy daily schedule, concentration problems, or having technical issues. 31 , 33 To overcome the last two reasons, the interface design may be improved to easily navigate through the application and interactive and user-friendly multimedia formats could be added to present information. To stimulate self-management among patients, patients need to be prepared to actively manage their care and be engaged in a collaborative and empowering relationship with their healthcare professional.…”

“…Additionally, it might be interesting to further examine usage of Oncokompas through logging data and evaluation forms, generating additional knowledge on topics of interest, informational preferences, and applicability in patients’ daily life. 33 It would be interesting to investigate the accuracy of the current definition of usage as intended and to explore whether the relationship between efficacy and usage as intended is properly reflected.…”

Rationale and Methods for a Randomized Controlled Trial of a Dyadic, Web-Based, Weight Loss Intervention among Cancer Survivors and Partners: The DUET Study

“…Furthermore, the concern that cancer survivors and their partners would not have Internet access nor adequate computer skills was unfounded based on our data that less than 2% of survivors screened-out on this criterion and there has been good uptake of the intervention to date. Albeit this percentage is far lower than the 18% computer-related exclusion that was recently reported by van der Hout and colleagues for a web-based supportive care intervention across a mixed sample of cancer survivors; however, recruitment for their Oncokompas trial occurred in 2016–2017 [ 44 ]. Given estimates indicating that there are on average 640,000 new users of the Internet each day globally (with sharp increases during the pandemic) [ 45 ], the concern that cancer survivors may be unreachable through web-based programs appears to be diminishing rapidly.…”

Effectiveness of the Internet Attachment-Based Compassion Therapy (iABCT) to improve the quality of life and well-being in a population with chronic medical illness: A study protocol of a randomized controlled trial (SPIRIT compliant)

“…Semi-structured qualitative interview . A qualitative interview will be adapted to explore reasons for participant’s dropout or no participation in the trial [ 66 , 67 ]. Reasons for dropping out or not participating in the trial will be further explored using an online form with pre-set response options, and multiple reasons will be allowed.…”