Emiel A. Boogerd

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

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.

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.

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.

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.