Feasibility Testing of An Internet-Based Psycho-Educational Game for Children with Juvenile Idiopathic Arthritis and Their Parents
Arthritis & Rheumatology
Juvenile Idiopathic Arthritis (JIA) is a common chronic illness in childhood. The responsibility of JIA management during the younger years is shared among family members. However, many families do not receive comprehensive JIA education and coping skills training, which can negatively impact health-related quality of life (HRQL). Evidence supports psycho-educational treatments to improve health outcomes in children with JIA but no program has been developed to meet the needs of 7 to 12-year-old children. The aim of this research is to evaluate the feasibility of a bilingual (English and French) interactive, Internet-based psycho-educational game for children with JIA.
A pilot randomized controlled trial (RCT) design with a usual care control group is underway (target n = 120). Recruitment is ongoing at four Canadian pediatric tertiary care centres and three additional centres will start upon completion of study setup. After informed consent is obtained and baseline questionnaires are completed, participants are randomized. Over the 8-week study period, participants in the experimental group are asked to download the game onto a personal device (i.e., computer or iPad) and interact with the game daily. Participants in the control group receive usual care and are offered the program after post-study. Parents of participants in both groups receive access to the ‘JIA Resource Centre’. Post-study questionnaires are completed following 8-weeks. Implementation outcomes are analyzed using descriptive statistics.
To date, 57 participant dyads have enrolled in the study. Of these, 30 have completed the study, 24 are currently in progress, and 3 have dropped out. Reasons for dropping out included, failure to download the game due to technical difficulties (1 dyad) or lack of time (2 dyads). On average, dyads have taken 7.8 (SD = 6.5) days to download the game. Additional directions or prompts for families to download the game was required from the team for 61.3% (n = 19) of intervention participants and of these, the team contacted dyads an average of 5.4 (SD = 3.6) times before the download was successful. For 22.6% (n = 7), a change of device type was required for a successful download. On average, participants have gotten through 31.2% of game content at the end of 8-weeks. Participants were contacted at the 2-week mark (40.9%) and 5-week mark (78.9%) during the study period to follow-up on the lower than expected progress in the game. The response to the intervention has been mostly positive, however, some participants indicated that the level of difficulty was either “too easy” or “too hard” and some considered it too repetitive. Participants appreciated that a game had been developed for their disease population.
The feasibility of this intervention would benefit from an easier distribution procedure as well as compatibility of the game across more platforms (i.e., older iPad versions). The level of difficulty could be better suited if tailored to the child’s age. Next steps include development of a tutorial to assist younger participants. Upon completion of data collection, preliminary effectiveness outcomes will be analyzed.