Reliability and validity of the Norwegian child and parent versions of the DISABKIDS Chronic Generic Module (DCGM-37) and Diabetes-Specific Module (DSM-10)

<p>Abstract</p> <p>Background</p> <p>International guidelines on type 1 diabetes advocate routine screening of health-related quality of life (HRQOL). DISABKIDS questionnaires are the first instruments developed across cultures and nations to provide age-appropriate measures of HRQOL in children with chronic diseases. DISABKIDS includes a Chronic Generic Module 37 (DCGM-37) and disease-specific modules. The purpose of this study was to examine reliability and validity of the Norwegian versions of the DISABKIDS questionnaires in children and adolescents with type 1 diabetes.</p> <p>Methods</p> <p>The DCGM-37 and the Diabetes Specific Module-10 (DDM-10) were translated into Norwegian using standard forward-backward translation. Eight to 19 year old children and adolescents with type 1 diabetes scheduled for routine follow-up at three diabetic clinics in Norway and one of their parents were invited to complete the DCGM-37 and the DDM-10. Internal consistency was determined using Cronbach's alpha. Results were compared with those of the Child Health Questionnaire Children Form-87 (CHQ-CF87) and Child Health Questionnaire Parent Form-50 which are established generic questionnaires. DISABKIDS results were related to age, gender, duration of diabetes, mode of insulin delivery and metabolic control. Clinical data were obtained from the Norwegian Childhood Diabetes Registry.</p> <p>Results</p> <p>Of 198 eligible child-parent dyads, 103 (52%) completed the questionnaires. Mean age was 13.6 (2.6), range 8-19 yrs, 52% were boys. Cronbach's alpha was > 0.70 for all the DISABKIDS sub-scales except two (physical ability and social inclusion). There were moderate to high correlations (0.65-0.81) between the DISABKIDS scales and mental/emotional sub-scales of CHQ-CF87. Increasing age and higher HbA1c were significantly associated with reduced HRQOL scores. Parents tended to score their child's HRQOL lower than the children/adolescents themselves.</p> <p>Conclusions</p> <p>The study shows that the DISABKIDS instruments are applicable to a Norwegian childhood diabetes population. They seem to be a relevant supplement to other clinical indicators in medical practice and research.</p

Improving Diabetes Care for Young People With Type 1 Diabetes Through Visual Learning on Mobile Phones: Mixed-Methods Study

Background: Only 17% of Norwegian children and adolescents with diabetes achieve international treatment goals measured by glycated hemoglobin (HbA1c). Classic patient–physician consultations seem to be poorly adapted to young children. New strategies that are better attuned to young people to improve support of adolescents’ self-management of diabetes need to be tested and evaluated. Objective: (1) To explore how applications for mobile phones can be used in follow-up of adolescents with type 1 diabetes, and (2) to use the findings to guide further development of the applications and as a basis for future studies. Method: We pilot tested two mobile phone applications: (1) an application that contained a picture-based diabetes diary to record physical activity and photos taken with the phone camera of food eaten, where the phone also communicated with the glucometer by Bluetooth technology to capture blood glucose values, and (2) a Web-based, password-secured and encrypted short message service (SMS), based on access using login passwords received via SMS to be used by participants to send messages to their providers when they faced obstacles in everyday life, and to send educational messages to the participants. At the end of the 3-month pilot study, 12 participants (7 girls and 5 boys ) aged 13–19 years completed semistructured interviews. The participants had a mean HbA1c value of 8.3 (SD 0.3), mean age of 16.2 (SD 1.7) years, mean body mass index of 23.3 (SD 3.2) kg/m2, and mean diabetes duration of 7.5 (SD 4.6) years. We applied three additional measurements: change in metabolic control as measured by HbA1c, the System Usability Scale, and diabetes knowledge. Results: From the interviews, three main categories emerged: visualization, access, and software changes. Participants appreciated the picture-based diary more than the SMS solution. Visualization of cornerstones in diabetes self-care (ie, diet, insulin dosage, physical activity, and pre- and postprandial glucose measurements all transformed into one picture) in the mobile diary was found to be an important educational tool through reflections in action. This led to a change in participants’ applied knowledge about the management of their disease. Additional measurements supplemented and supported the qualitative findings. However, changes in HbA1c and participants’ theoretical knowledge as tested by a 27-item questionnaire, based on a national health informatics’ diabetes quiz, before and after the intervention were not statistically significant (P = .38 and P = .82, respectively, paired-samples t test). Participants suggested additional functionality, and we will implement this in the design of the next software generation. Conclusion: Participants reported an increased understanding of applied knowledge, which seem to positively affect diabetes self-care. Visual impressions seem well adapted to the maturation of the adolescent brain, facilitating the link between theoretical knowledge and executive functions. SMS gave the adolescents a feeling of increased access and security. Participants gave valuable input for further development of these applications