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Health-related quality of life in intensively treated young patients with type 1 diabetes
Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences.
Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
2009 (English)In: Pediatric Diabetes, ISSN 1399-543X, Vol. 10, no 6, 374-381 p.Article in journal (Refereed) Published
Abstract [en]

This study aimed to analyse the impact of the disease and treatment on health-related quality of life (HRQOL) in intensively treated young patients with diabetes. Our main hypothesis was that metabolic control, gender, age and socio-economic status predict HRQOL. All children and adolescents (n = 400, 191 girls) and parents in a geographic population of two paediatric clinics in Sweden [mean age 13.2 yr, ±SD 3.9, range 2.6-19.6; mean duration of diabetes 5.1 yr, ± SD 3.8, range 0.3-17.6; yr mean haemoglobin A1c (HbA1c) 7.1%, ±SD 1.2, range 4.0-10.7] received the DISABKIDS questionnaire, a validated combined chronic generic and condition-specific HRQOL measure for children, and the EuroQol-5D questionnaire. Parents as proxy perceived HRQOL lower than their children. Adolescents with separated parents reported lower generic HRQOL (GeHRQOL) and diabetes-specific HRQOL (DiHRQOL) than those with parents living together (p = 0.027 and p = 0.043, respectively). Adolescent girls reported lower GeHRQOL (p = 0.041) and DiHRQOL (p = 0.001) than boys did. Parents of girls less than8 yr of age reported lower DiHRQOL (p = 0.047) than did parents of boys less than8 yr. In addition, a difference was found in HRQOL between centres. Intensive insulin therapy did not seem to lower HRQOL. If anything, along with better metabolic control, it increased HRQOL. A correlation between DiHRQOL and HbA1c was found in adolescents (r = -0.16, p=0.046) and boys aged 8-12 yr (r = -0.28, p = 0.045). We conclude that the diabetes team can influence the HRQOL of the patients as there was a centre difference and because HRQOL is influenced by glycaemic control and insulin regimen. Girls seem to need extra support.

Place, publisher, year, edition, pages
2009. Vol. 10, no 6, 374-381 p.
Keyword [en]
Children and adolescents; Diabetes type 1; Quality of life; Questionnaire
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-21221DOI: 10.1111/j.1399-5448.2008.00496.xOAI: diva2:240970
Available from: 2009-09-30 Created: 2009-09-30 Last updated: 2010-09-17
In thesis
1. Quality of Care in Children and Adolescents with Type 1 Diabetes: Patients’ and Healthcare Professionals’ Perspectives
Open this publication in new window or tab >>Quality of Care in Children and Adolescents with Type 1 Diabetes: Patients’ and Healthcare Professionals’ Perspectives
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Type 1 diabetes is a chronic disease for which there is currently no cure, and high quality care is essential if acute and long-term complications are to be avoided. Many children and adolescents have inadequate metabolic control with increased risk for complications later in life, and adolescent girls have reported low quality of life. Differences in metabolic control between treatment centres have been found but the reasons for this are unclear. Diabetes is a largely self-managed disease. Patient education is central to successful self-management but little is known about how to make best use of diabetes communities on the Internet and integrate them into a practitioner-driven service.

Aim: The main objective of this thesis was to gain better understanding of how to improve the quality of diabetes care for children and adolescents, aiming to have near-normal blood glucose, to prevent both acute and late complications and to have good quality of life.

Methods: The geographic populations of two paediatric centres (n=400) received validated questionnaires on perceived quality of care and Health-Related Quality of Life (HRQOL). An intervention with a web portal containing diabetes-related information and social networking functions was carried out within the same population. Clinical variables from 18 651 outpatient visits registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS were analysed. Using data from SWEDIABKIDS, five centres with the lowest mean HbA1c, five with the highest, and five with the largest decrease in centre mean HbA1c between 2003 and 2007 were identified. Team members (n=128) were asked about structure, process, policy, and the messages given to patients about important diabetes issues.

Results: Specific areas that were identified as needing improvement included information about self-care, waiting time at outpatient clinics and for treatment, and access to care. Diabetes seemed to reduce HRQOL. Subjects with better metabolic control and with higher frequency of injections reported slightly higher HRQOL, as did those living with both parents compared to those with separated parents. Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes duration, and age. A difference between centres was found, but this could not be explained by differences in insulin dose, diabetes duration, or age. Adolescent girls reported lower HRQOL, as did parents of girls aged < 8 years. Girls also had poorer metabolic control, especially during adolescence.

In teams with the lowest and the most decreased mean HbA1c, members gave a clear message to patients and parents and had a lower HbA1c target value. Members of these teams appeared more engaged, with a more positive attitude and a greater sense of working as a team. Members of teams with the highest mean HbA1c gave a vaguer message, felt they needed clearer guidelines, and had a perception of poor collaboration within the team. High insulin dose, large centre population, and larger teams also seemed to characterize diabetes centres with low mean HbA1c. The most frequently visited pages on the web portal were the social networking pages, such as blogs, stories and discussions, followed by the diabetes team pages. Those who used the portal most actively were younger, had shorter diabetes duration, and lower HbA1c, and were more often girls. The web portal was not found to have any significant beneficial or adverse effects on HRQOL, empowerment or metabolic control.

Conclusions: The quality of diabetes care for children and adolescents in Sweden is not sufficiently good and needs to improve further if complications in later life are to be avoided. Psychosocial support for children and adolescents with diabetes should be appropriate for age and gender. The attitudes of the members in the diabetes care team and the message they give to patients and their parents seem to influence metabolic control in children and adolescents. A clear and consistent message from a unified team appears to have beneficial effects on metabolic control. A web portal that includes comprehensive information about diabetes, and the opportunity to communicate with other people with diabetes and with healthcare professionals may be a useful complement to traditional patient education tools. Members of the diabetes team should encourage its use.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2010. 74 p.
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1208
type 1 diabetes, pediatric, quality of care, HbA1c, quality of life, patient education, e-health
National Category
urn:nbn:se:liu:diva-59336 (URN)978-91-7393-311-7 (ISBN)
Public defence
2010-10-08, Berzeliussalen, Hälsouniversitetet, Campus US, Linköpings universitet, Linköping, 09:00 (English)
Available from: 2010-09-17 Created: 2010-09-13 Last updated: 2010-09-17Bibliographically approved

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Hanberger, LenaLudvigsson, JohnnyNordfeldt, Sam
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Pediatrics Faculty of Health SciencesDepartment of Paediatrics in LinköpingHealth Technology Assessment
Medical and Health Sciences

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