Parent's perception of their children's health, quality of life and burden of diabetes: testing reliability and validity of ‘Check your Health’ by proxy

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WHO's definition of health is: ‘Health is a state of complete physical, mental and social well‐being and not merely the absence of disease or infirmity’ (WHO 1948). Nordenfeldt has a holistic approach in his theory of health, where a person does not need to achieve the WHO's utopian definition of health. He defined health: ‘A person is in health if, and only if, he/she has the ability, given the circumstances, to fulfil all his vital goals. If this condition is not met he/she is in some degree of illness, the degree depending upon the number and to some extent the nature of the unfulfilled vital goals’ 1. This means that a person is in health when the person, in his/her context, achieves what is important. Health and disease affects an individual's ability to act. To achieve health, it is not enough to survive, but to live a good life with the conditions the individual has 2.
The International Society for Pediatric and Adolescent Diabetes advocates measuring perceived health and quality of life (QoL) routinely 3. The Diabetes Control and Complications Trial showed that good metabolic control is associated with decreased risk for late diabetes‐related complications 4. Wikblad et al. 6 showed that better QoL in adults with type 1 diabetes is associated with better metabolic control and fewer hypoglycaemic events. Even in children and adolescents, good metabolic control is associated with better QoL 7. Viklund et al. 8 showed that poor metabolic control in adolescents is associated with lower physical and mental health and higher burden of diabetes. Parents' perception of their children's QoL is lower than the children's own reports 7. For children and adolescents with type 1 diabetes, parental involvement is important and should be continued throughout the adolescent period to assure appropriate self‐management and glycemic control. Shared diabetes management is associated with improved glycemic control, but the challenge is to find a level that is comfortable for all involved 13. It is therefore important to measure the parent's perception of their children's QoL 13.
de Wit et al. 18 found nine questionnaires measuring QoL in children and adolescents, of which five were diabetes‐specific. Two have been translated into Swedish and validated the DISABKIDS Chronic Generic Module‐37 (DCGM‐37), including the diabetes‐specific module (DCGM‐37 DM) 9 and PedsQL 19. Both consist of a generic and a disease‐specific module with a total of 50 and 51 questions, respectively 9. Both questionnaires have a parent proxy version. DCGM‐37 has been validated in seven European countries, which strengthens the cross‐cultural validity 20. It is known that the response rate to a questionnaire decreases if it takes a long time to complete, and therefore, Wikblad et al. developed a short and easy questionnaire called ‘Check your Health’ (Fig. 1) 21.
The instrument is based on Nordenfeldt's theory of health, earlier research and clinical experience. In our studies, we have found that patients with diabetic late complications scored lower on quality of life than patients without complications 6. This finding raised the question of burden of diabetes. Late complications seemed to be one reason for higher diabetes burden, but what other factors affect quality of life and burden of diabetes?
In a recent interview study (not yet published), 30 patients with diabetes were asked to fill in the Check your Health questionnaire and after that they were asked what the reason was for rating quality of life and burden of diabetes as they did. That gave us more reasons for higher burden of diabetes.
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