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

BACKGROUND: Raising 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. OBJECTIVE: The 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. METHODS: The 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). RESULTS: Of 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). CONCLUSIONS: The 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 interventions. Factors potentially contributing to successful implementation are suggested. TRIAL REGISTRATION: Nederlands Trial Register Number: NTR3643; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3643 (Archived by WebCite at http://www.webcitation.org/6qihOVCi6).

Parents' experiences, needs, and preferences in pediatric diabetes care: Suggestions for improvement of care and the possible role of the Internet. A qualitative study.

PURPOSE: To investigate the needs and preferences of parents of children with type 1 diabetes (T1D) concerning pediatric diabetes care and use of Internet in care. DESIGN AND METHODS: Parents of 34 children, aged 2-12, with T1D participated in seven focus group interviews. RESULTS: Analysis revealed provision of tailored care, disease information, peer support, and accessibility of healthcare professionals as major needs in parents. Internet could be used to satisfy these needs. PRACTICAL IMPLICATIONS: According to parents, diabetes teams should focus on the impact of the disease, parents' experience, and the child's development, and provide online professional and peer support.

"What Is eHealth": Time for An Update?

The annual number of articles reporting on eHealth interventions has increased over the last 10 years. In contrast, the last article in this journal on the definition of eHealth was published in 2006. This leads to the question whether the field itself has reached consensus about the definition and description of eHealth or whether it is in need for a new review of the literature and a new description of the rapidly changing field of eHealth. Since the JMIR community has successfully collaborated on the "CONSORT-eHealth" in the past, we would like to use the same strategy to explore the need for a new definition of eHealth and the creation of a taxonomy for this field. Therefore, we hereby submit a call to all JMIR-readers, to fill out a 4-question survey on their ideas about a refined eHealth definition. Based on these results, we will decide whether or not to engage in a systematic review. Logically, the entire JMIR community is invited to join us in our attempt to further elucidate the field of eHealth.

Assessment of psychosocial problems in children with type 1 diabetes and their families: the added value of using standardised questionnaires in addition to clinical estimations of nurses and paediatricians.

AIMS AND OBJECTIVES: To investigate the assessment of psychosocial problems in children with type 1 diabetes by means of clinical estimations made by nurses and paediatricians and by using standardised questionnaires. BACKGROUND: Although children with type 1 diabetes and their parents show increased risk for psychosocial problems, standardised assessment of these problems lacks in diabetes care. DESIGN: By comparing these different modes of assessment, using a cross-sectional design, information about the additional value of using standardised questionnaires is provided. METHODS: Participants were 110 children with type 1 diabetes (aged 4-16), their parents, and healthcare professionals. Children filled out the Strengths and Difficulties Questionnaire and the Paediatric Quality of Life Inventory, Diabetes Module. Parents filled out the Strengths and Difficulties Questionnaire parent-report and the Parenting Stress Index. Independently, nurses and paediatricians filled out a short questionnaire, which assessed their clinical estimations of the children's psychosocial problems and quality of life, and parents' levels of parenting stress. Reports of children and parents were compared to clinical estimations. RESULTS: Children in our sample showed more psychosocial problems and lower health-related quality of life than their healthy peers. In approximately half of the children, dichotomous estimations by healthcare professionals and dichotomised reports by patients and parents were in agreement. In 10% of the children, no psychosocial problems were present according to professionals' estimations, although patients and parents-reported psychosocial problems. In 40%, psychosocial problems were present according to professionals' estimations, although parents and patients did not report psychosocial problems. CONCLUSION: Children with type 1 diabetes show more psychosocial problems than healthy children. Professionals seem to tend towards overestimating psychosocial problems. RELEVANCE TO CLINICAL PRACTICE: Extending the assessment of psychosocial problems with routine screening on patient-reported outcomes, using validated questionnaires, could be of additional value in tailoring care to the needs of the individual child and parents.

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.

BACKGROUND: Type 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/DESIGN: We 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. DISCUSSION: Dependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care. Strengths and limitations of the study are discussed. TRIAL REGISTRATION: NTR3643 (Dutch Trial Register).

Teaming up: feasibility of an online treatment environment for adolescents with type 1 diabetes.

OBJECTIVE: To evaluate the feasibility of an online interactive treatment environment for adolescents with type 1 diabetes, called Sugarsquare, to supplement usual care. RESEARCH DESIGN AND METHODS: Sugarsquare provides easily accessible contact with the diabetes team, peer support, and treatment overview. Of 120 eligible patients, 62 adolescents aged 11-21 (M = 15.23, SD = 2.00) were assigned to a usual-care group (n = 31) or a usual-care + intervention group (n = 31). Feasibility was assessed in terms of acceptability, demand, practicability, integration, and efficacy in a 9-month study-period. RESULTS: Assessment of acceptability and demand revealed that 20 adolescents in the intervention group (65%) logged in at least once; 16 adolescents (52%) logged in repeatedly. Usage resulted in 5795 page-views, 3580 chat-messages, 427 forum-messages, and in 40 private interactions between 11 adolescents (35%) and professionals. Assessment of practicability revealed that all 13 professionals (100%) accessed the intervention. Slow processing speed and security procedures formed obstacles for usage. Assessment of integration showed that international standards for diabetes care (International Diabetes Federation/International Society for Pediatric and Adolescent Diabetes/American Diabetes Association) were met. Assessment of efficacy revealed improvement in the intervention group in evaluation of care (Patients' Evaluation of Quality of Diabetes), F(1,30) = 5.35, p < 0.05, and quality of life, communication (PedsQL), F(1,30) = 11.65, p <0.05. The latter was correlated with posted chat-messages (r = 0.42, p < 0.05). No between-group differences were found. CONCLUSIONS: This study shows that Sugarsquare is feasible in adolescents with type 1 diabetes. It meets a demand in adolescents and can support professionals when organizing on-going care according to international standards. Results are promising and next steps are a full-scale randomized controlled trial and subsequent implementation in daily care.

Nicotine withdrawal symptoms following a quit attempt: an ecological momentary assessment study among adolescents.

INTRODUCTION: The present study describes growth curves of withdrawal symptoms among 138 daily smoking adolescents before, during, and after a quit attempt. METHODS: Participants reported their levels of withdrawal symptoms (craving, negative affect, and hunger) three times a day over a period of 28 days: 1 week prior to and 3 weeks following a quit attempt. RESULTS: All withdrawal symptoms were quite stable at a relatively low level during the 5 days prior to the quit day. At Day 8, withdrawal symptoms (especially craving) increased substantially. A significant decrease in symptoms was visible during the week following the quit day, and within 2 weeks postquit, both abstinent and relapsed adolescents had reverted to levels comparable to those during the prequit period. The course over time for craving and hunger were best described by a quadratic term, and a linear model best suited negative affect. Individual intercepts and slopes of the growth curves were used to predict abstinence during the last week of the study and at the 2-month follow-up. Analyses revealed that higher levels of craving at the beginning of the prequit week and on the target quit day (intercepts) decreased the odds of being abstinent during the last week of the study. In addition, the quadratic term for hunger predicted abstinence during the last week. Finally, among all three symptoms, none of the growth model characteristics predicted abstinence at follow-up. DISCUSSION: The findings generally suggest that smoking cessation among daily smoking adolescents does not largely depend on how their withdrawal symptoms evolve over time after achieving abstinence.