Abstract
BackgroundInternational 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.MethodsThe 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.ResultsOf 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.ConclusionsThe 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.
Highlights
Type 1 diabetes is one of the most common chronic diseases of childhood, and the incidence in Norway of 30 new cases per 100 000 person years is one of the highest in the world [1]
Participants Except for families who were not able to speak or read Norwegian, all 8-19 year old children or adolescents with type 1 diabetes scheduled for follow-up at three pediatric departments in eastern Norway between October 1st, 2009 through February 28th 2010 and one of their parents were invited by mail to participate in the study before a scheduled consultation
Instruments DISABKIDS The DISABKIDS Chronic Generic Module (DCGM-37) is a questionnaire which measures general health-related quality of life (HRQOL) and the level of distress caused by a chronic disease, and can be supplemented with condition-specific modules for asthma, arthritis, cerebral palsy, cystic fibrosis, dermatitis, epilepsy and diabetes [18]
Summary
Type 1 diabetes is one of the most common chronic diseases of childhood, and the incidence in Norway of 30 new cases per 100 000 person years is one of the highest in the world [1]. To make international comparisons possible it is advocated that test instruments are developed in cross-cultural and cross-national study groups [15,16]. In line with this goal “The DISABKIDS project”, which was funded by the European Commission, was developed in seven European countries with the purpose of developing instruments for assessing HRQOL of children with different chronic health conditions [16,17]. 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. 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
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