Background: Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined.
Objective: The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer.
Methods: A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design.
Results: Of all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (χ21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable.
Conclusions: Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population.
Keywords: anxiety; cancer; clinical trial; depression; eHealth; parents.
©Joanne Woodford, Anna Wikman, Kim Einhorn, Martin Cernvall, Helena Grönqvist, Amanda Romppala, Louise von Essen. Originally published in JMIR Mental Health (http://mental.jmir.org), 18.12.2018.