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Impact of type 1 diabetes on health-related quality of life among 8–18-year-old children
Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-4599-155X
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-8596-6020
Department of Medical and Health Sciences and Division of Nursing, Faculty of Medicine and Health Sciences, Linköping University, Sweden.
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2016 (English)In: Comprehensive Child and Adolescent Nursing, ISSN 2469-4193, Vol. 39, no 4, 245-255 p.Article in journal (Refereed) Published
Abstract [en]

Measuring the health-related quality of life (HRQOL) is one way to understand an individual’s perspective on health, and, more specifically, how type 1 diabetes (T1D) affects a child’s everyday life. Early detection of poor HRQOL is considered a crucial factor for identifying children who are at risk of psychosocial problems. The aim of this study was to describe the differences in the HRQOL of children with T1D according to age, gender, and metabolic control (HbA1c). Cross-sectional data were collected from children with T1D using the DISABKIDS Chronic Generic Measure-37 (DCGM-37) and the diabetes specific module (DM-10). Non-parametric tests were used to investigate differences. There were differences between girls and boys, and girls reported lower HRQOL than boys (HRQOL total score: mean 74 and 67 respectively; p = .005). Adolescents described more worries and fears about the future compared with younger children. Children with poor metabolic control reported a lower HRQOL than those with better metabolic control (HRQOL total score:mean 68 and 76 respectively; p = .006), but the social dimensions were not affected. The findings of the present study elucidate the importance for paediatric nurses to explore potential problems in children with T1D and use this knowledge in clinical practice. Assessment of the HRQOL can provide the patient’s perspective on the quality of diabetes care. The HRQOL is correlated with HbA1c, gender, and age, and the HRQOL as well as HbA1c levels should be regularly assessed to establish a comprehensive care for children with T1D.

Place, publisher, year, edition, pages
2016. Vol. 39, no 4, 245-255 p.
Keyword [en]
Assessment, Chronic condition, Metabolic control, Quality of life
National Category
URN: urn:nbn:se:hj:diva-31548DOI: 10.1080/24694193.2016.1196265ScopusID: 2-s2.0-84987870737OAI: diva2:955850
Available from: 2016-08-26 Created: 2016-08-26 Last updated: 2016-12-01Bibliographically approved
In thesis
1. Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system
Open this publication in new window or tab >>Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments.

Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system.

Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings.

Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations.

Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2016. 101 p.
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 77
outpatient setting; patient perspectives; patient reported outcomes; biopsychosocial perspective; self-reports; child involvement; International Classification of Functioning Disability and Health version for Children and Youth
National Category
urn:nbn:se:hj:diva-34144 (URN)978-91-85835-76-8 (ISBN)
Public defence
2017-01-20, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (Swedish)
Available from: 2016-12-15 Created: 2016-12-01 Last updated: 2016-12-01Bibliographically approved

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Petersson, ChristinaHuus, KarinaEnskär, Karin
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