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

A van der Hout; C F van Uden-Kraan; K Holtmaat; F Jansen; B I Lissenberg-Witte; G A P Nieuwenhuijzen; J A Hardillo; R J Baatenburg de Jong; N L Tiren-Verbeet; D W Sommeijer; K de Heer; C G Schaar; R J E Sedee; K Bosscha; M W M van den Brekel; J F Petersen; M Westerman; J Honings; R P Takes; I Houtenbos; W T van den Broek; R de Bree; P Jansen; S E J Eerenstein; C R Leemans; J M Zijlstra; P Cuijpers; L V van de Poll-Franse; I M Verdonck-de Leeuw

doi:10.1016/j.invent.2021.100429

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 Interv. 2021 Jul 15:25:100429. doi: 10.1016/j.invent.2021.100429. eCollection 2021 Sep.

Authors

A van der Hout^{1

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

2}, K Holtmaat^{1

2}, F Jansen^{2

3}, B I Lissenberg-Witte⁴, G A P Nieuwenhuijzen⁵, J A Hardillo⁶, R J Baatenburg de Jong⁶, N L Tiren-Verbeet⁷, D W Sommeijer^{8

9}, K de Heer^{8

10}, C G Schaar¹¹, R J E Sedee¹², K Bosscha¹³, M W M van den Brekel¹⁴, J F Petersen¹⁴, M Westerman¹⁵, J Honings¹⁶, R P Takes¹⁶, I Houtenbos¹⁷, W T van den Broek¹⁸, R de Bree¹⁹, P Jansen²⁰, S E J Eerenstein^{2

3}, C R Leemans³, J M Zijlstra^{2

21}, P Cuijpers¹, L V van de Poll-Franse^{22

23

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

2

3}

Affiliations

¹ Department of Clinical, Neuro- and Developmental Psychology, Amsterdam Public Health Research Institute, Vrije Universiteit Amsterdam, the Netherlands.
² Cancer Center Amsterdam (CCA), Amsterdam UMC, Amsterdam, the Netherlands.
³ Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Otolaryngology - Head and Neck Surgery, Amsterdam, the Netherlands.
⁴ Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Epidemiology and Data Science, Amsterdam, the Netherlands.
⁵ Department of Surgery, Catharina Hospital, Eindhoven, the Netherlands.
⁶ Department of Otolaryngology and Head and Neck Surgery, Erasmus MC Cancer Centre, Erasmus Medical Center, Rotterdam, the Netherlands.
⁷ Department of Hematology, Erasmus Medical Center, Rotterdam, the Netherlands.
⁸ Department of Internal Medicine, Flevoziekenhuis, Almere, the Netherlands.
⁹ Amsterdam UMC, University of Amsterdam, Department of Medical Oncology, Amsterdam, the Netherlands.
¹⁰ Amsterdam UMC, University of Amsterdam, Department of Hematology, Amsterdam, the Netherlands.
¹¹ Department of Internal Medicine, Gelre ziekenhuis, Apeldoorn, the Netherlands.
¹² Department of Otolaryngology, Head and Neck Surgery, Haaglanden MC, The Hague, the Netherlands.
¹³ Department of Surgery, Jeroen Bosch Ziekenhuis, Den Bosch, the Netherlands.
¹⁴ Department of Head and Neck Surgery, Netherlands Cancer Institute, Amsterdam, the Netherlands.
¹⁵ Department of Hematology, Northwest Clinics, Alkmaar, the Netherlands.
¹⁶ Department of Otorhinolaryngology - Head and Neck Surgery, Radboud University Medical Center, Nijmegen, the Netherlands.
¹⁷ Department of Hematology, Spaarne Gasthuis, Hoofddorp, the Netherlands.
¹⁸ Department of Surgery, St. Anna Hospital, Geldrop, the Netherlands.
¹⁹ Department of Head and Neck Surgical Oncology, Utrecht University Medical Center, Utrecht, the Netherlands.
²⁰ Department of Surgery, Elisabeth-TweeSteden Hospital, Tilburg, the Netherlands.
²¹ Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Hematology, Amsterdam, the Netherlands.
²² Department of Research, Netherlands Comprehensive Cancer Organisation, Eindhoven, the Netherlands.
²³ Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, the Netherlands.
²⁴ CoRPS - Center of Research on Psychological and Somatic Disorders, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands.

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.

Keywords: Cancer survivorship; Health-related quality of life; Self-management; Web-based intervention; eHealth.