Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial

Abstract

BackgroundRaising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information.ObjectiveThe first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D. The second aim was to assess the feasibility of implementing Sugarsquare in clinical practice.MethodsThe parents of 105 children (N=105) with T1D below the age of 13 participated in a 6-month multicenter randomized controlled feasibility trial. They were randomly assigned to an experimental (n=54, usual care and Sugarsquare) or a control group (n=51, usual care). Attrition rates and user statistics were gathered to evaluate feasibility of the trial and implementation. To determine potential efficacy, the parenting stress index (PSI-SF) was assessed at baseline (T0) and after 6 months (T1).ResultsOf a potential population of parents of 445 children, 189 were willing to participate (enrollment refusal=57.5%, n=256), 142 filled in the baseline questionnaire (baseline attrition rate=25%, n=47), and 105 also filled in the questionnaire at T1 (post randomization attrition rate during follow-up=26%, n=32). As such, 24% of the potential population participated. Analysis in the experimental group (n=54) revealed a total of 32 (59%) unique users, divided into 12 (38%) frequent users, 9 (28%) incidental users, and 11 (34%) low-frequent users. Of the total of 44 professionals, 34 (77%) logged in, and 32 (73%) logged in repeatedly. Analysis of the user statistics in the experimental group further showed high practicability and integration in all users, moderate acceptability and demand in parents, and high acceptability and demand in health care professionals. Baseline parenting stress index scores were related to the parents’ frequency of logging on (ρ=.282, P=.03) and page-views (ρ=.304, P=.01). No significant differences in change in parenting stress between experimental and control group were found (F3,101=.49, P=.49).ConclusionsThe trial can be considered feasible, considering the average enrollment refusal rate, baseline attrition rate and postrandomization attrition rate, compared to other eHealth studies, although lower than hypothesized. Implementing Sugarsquare in clinical practice was partly feasible, given moderate demand and acceptability in parent users and lack of potential efficacy. Parents who reported higher levels of parenting stress used Sugarsquare more often than other parents, although Sugarsquare did not reduce parenting stress. These results indicate that Web-based interventions are a suitable way of providing parents of children with T1D with additional support. Future studies should determine how Sugarsquare could reduce parenting stress, for instance by adding targeted intervent...

The Effectiveness of Parenting Interventions on Psychosocial Adjustment in Parents of Children and Adolescents with Type 1 Diabetes: A Meta‐Analysis

“…Participants in 12 articles (Bolyai, Bova, Lee, & Gruppuso, 2011;Bolyai, Bova, Lee, & Johnson, 2012;Bolyai et al, 2010;Bolyai et al, 2004;Grey, Jaser, Whittemore, Jeon, & Lindemann, 2011;Hoff et al, 2005;Kichler, Kaugars, Marik, Nabors, & Alemzadeh, 2013;Mackey, Herbert, Monaghan, & Cogen, 2016;Monaghan, Hilliard, Cogen, & Streisand, 2010;Nansel et al, 2009;Wysocki et al, 2007;Wysocki et al, 2000) were reported to be recruited mainly from children' hospitals, diabetes centers, or endocrinology clinics in the United States, whereas parents in other articles were from Greece (Tsiouli, Pavlopoulos, Alexopoulos, Chrousos, & Darviri, 2014), Germany (Saßmann et al, 2012), the UK (Doherty, Calam, & Sanders, 2013), the Netherlands (Boogerd et al, 2017), and Iran (Saghaei, Omidi, Dehkordi, & Safavi, 2017). There were two studies (Kichler et al, 2013;Nansel et al, 2009) including children and parents as participants, one study (Bolyai et al, 2011) focused on fathers only, two studies (Bolyai et al, 2004;Saghaei et al, 2017) included mothers only, and the rest included both parents as participants.…”

“…The rest were conducted mainly by experienced and "licensed" psychologists or specially trained college students. Participants of three studies (Boogerd et al, 2017;Mackey et al, 2016;Nansel et al, 2009) received telephone-based or web-based parenting interventions.…”

“…Participants in all studies were reported to be randomized to intervention or control group. Seven studies (Bolyai et al, 2012;Bolyai et al, 2010;Boogerd et al, 2017;Doherty et al, 2013;Grey et al, 2011;Hoff et al, 2005;Wysocki et al, 2000) were considered to conceal participant allocation appropriately, including being conducted at a center (Wysocki et al, 2000), by a computerized block randomization program (Doherty et al, 2013), invisible and sealed envelopes (Boogerd et al, 2017;Grey et al, 2011;Hoff et al, 2005), or using participant number-permutation assignment (Bolyai et al, 2012;Bolyai et al, 2010). The remaining studies could not be assessed adequately, owing to the absence of information.…”

“…Participants in three studies (Bolyai et al, 2011;Boogerd et al, 2017;Doherty et al, 2013) completed outcome measures either online or as hard copies sent via mail, which were relatively closed survey systems. Data in another study (Grey et al, 2011) were collected by trained research assistants who were blinded to group assignment.…”

“…The effect of parenting interventions on stress Seven studies (Boogerd et al, 2017;Doherty et al, 2013;Mackey et al, 2016;Monaghan et al, 2010;Saghaei et al, 2017;Saßmann et al, 2012;Tsiouli et al, 2014) including 385 parents or caregivers were included to assess the effectiveness of supportive parenting training in relieving parents' or caregivers' diabetes-specific stress. Effect sizes in five out of seven RCTs indicated a reduction in stress level because of the parenting interventions.…”