The Sugarsquare study: protocol of a multicenter randomized controlled trial concerning a web-based patient portal for parents of a child with type 1 diabetes

Abstract

BackgroundType 1 diabetes demands a complicated disease self-management by child and parents. The overwhelming task of combining every day parenting tasks with demands of taking care of a child with diabetes can have a profound impact on parents, often resulting in increased parenting stress. Tailored disease information, easy accessible communication with healthcare professionals and peer support are found to support parents to adequately cope with the disease and the disease self-management in everyday life. Internet can help facilitate these important factors in usual pediatric diabetes care. Therefore, we will develop a web-based patient portal in addition to usual pediatric diabetes care and subsequently evaluate its efficacy and feasibility. The web-based patient portal, called Sugarsquare, provides online disease information, and facilitates online parent-professional communication and online peer support. We hypothesize that parenting stress in parents of a child with type 1 diabetes will decrease by using Sugarsquare and that Sugarsquare will be feasible in this population.Methods/DesignWe will test the hypotheses using a multicenter randomized controlled trial. Eligible participants are parents of a child with type 1 diabetes under the age of 13. Parents are excluded when they have no access to the internet at home or limited comprehension of the Dutch language. Participants are recruited offline from seven clinics in the Netherlands. Participants are randomly allocated to an intervention and a control group. The intervention group will receive access to the intervention during the twelve-month study-period; the control group will receive access in the last six months of the study-period. Self-reported parenting stress is the primary outcome in the present study. Data will be gathered at baseline (T0) and at six (T1) and twelve (T2) months following baseline, using online questionnaires. User statistics will be gathered throughout the twelve-month study-period for feasibility.DiscussionDependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care. Strengths and limitations of the study are discussed.Trial registrationNTR3643 (Dutch Trial Register)

PETS-D (parents education through simulation-diabetes): Parents’ qualitative results

“…A severe hypoglycemic episode instills parents with such fear and anxiety of it happening again that that they compensate by running their child's BG's higher than the recommended target range for weeks to months afterwards, which can be detrimental for the child in the long run [9, 10, 13, 14, 22-24]. While seeing a seizure increased the parents’ fear, parents reported they would have panicked more during a real seizure if they had not had that experience.…”

Feasibility of an online intervention (STAK-D) to promote physical activity in children with type 1 diabetes: protocol for a randomised controlled trial

“…Despite this, few paediatric clinics offer web resources for physical activity promotion as part of routine care, and technology-based interventions for children with T1DM are scarce. Existing resources are not developed for this age group; they tend to focus on ‘sport’ rather than physical activity and active lifestyles; or they focus primarily on the parent rather than the child [29, 31–35]. Computer or web-based interventions have shown to be feasible, acceptable [34, 35] and can be effective [36] in promoting physical activity in school-aged children.…”

“…Existing resources are not developed for this age group; they tend to focus on ‘sport’ rather than physical activity and active lifestyles; or they focus primarily on the parent rather than the child [29, 31–35]. Computer or web-based interventions have shown to be feasible, acceptable [34, 35] and can be effective [36] in promoting physical activity in school-aged children. Consequently, there is potential for a dedicated, interactive resource specifically promoting physical activity in children with T1DM.…”

Costs of development and maintenance of an internet program for teens with type 1 diabetes

“…These programs vary in focus, targeting such behaviors as adherence to the monitoring of blood glucose and insulin pumps[36], self-management by using problem-solving exercises,[24, 23, 37] CST by using interactive lessons,[23] and expert support by encouraging interaction with providers. [38, 39] Many of these programs take advantage of the internet’s capacity to draw peers together for social support. [40, 38, 39, 23] To date, none of these programs have reported on costs of development and maintenance.…”

“…[38, 39] Many of these programs take advantage of the internet’s capacity to draw peers together for social support. [40, 38, 39, 23] To date, none of these programs have reported on costs of development and maintenance.…”