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Diabetes during childhood and adolescence: studies of insulin treatment, patient-reported outcomes, and evaluation of an empowerment-based education
Karolinska institutet.ORCID iD: 0000-0002-8136-6340
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

There is a lack of studies demonstrating positive effects on glycaemic control and HRQoL in children and adolescents starting CSII treatment. Guidelines recommend measuring perceived HRQoL routinely. It is important to have questionnaires, not overly comprehensive or timeconsuming, to measure HRQoL in children and adolescents as well as their parents. Structured and person-centred education has been emphasized as a key to successful selfmanagement. Guided Self-Determination-Young (GSD-Y) is a person-centred communication and reflection method. The overall aim of this thesis was to increase the knowledge regarding glycaemic control, type of treatment, HRQoL, and a theory-based education among youth with type 1 diabetes.

Study I was a retrospective case-control study comparing children and adolescents starting CSII (n=216), with a control group treated with MDI (n=215). Children and adolescents who had started CSII showed improvement in glycaemic control, measured as HbA1c, during the first six months. For boys, this improvement could be identified throughout the first year.

In Study II, 197 parents and their children with type 1 diabetes completed the proxy and child versions of the questionnaires Check your Health and DISABKIDS to test the psychometric properties of Check your Health by proxy. The test of the reliability and validity of this questionnaire showed acceptable psychometric properties.

Study III, an RCT evaluating a GSD-Y education, included 71 adolescents starting CSII and their parents. The intervention group (n=37) attended seven group education sessions, lasting for about two hours each, using the GSD-Y method. The participants were followed for six months. The GSD-Y method showed a positive effect on glycaemic control, especially for participants with an HbA1c above 63 mmol/mol (n=48) at inclusion (p= 0.037); furthermore, readiness to change increased (p=0.037). A correlation was identified between HbA1c and goal achievement (rs=-0.475, p=0.001), and readiness to change (rs=-0.487, p=0.001).

In Study IV, 13 adolescents were interviewed after the intervention with GSD-Y. From the qualitative analysis, two categories emerged: the importance of context, and growing in power through the group process. An overarching theme that emerged from the interviews was the importance of expert and referent power in growing awareness of the importance of self-management, as well as mitigating the loneliness of diabetes. Further, the findings showed that it is valuable for adolescents to meet other young people in the same situation, and to share their experiences from living with diabetes.

In conclusion the four studies showed, treatment with CSII may initially result in improved HbA1c. Group education with the GSD-Y method, for adolescents and their parents, has the potential to further improve HbA1c, mitigate the loneliness of diabetes, and contribute to conscious reflection about self-management. The Check your Health questionnaire by proxy has shown acceptable psychometric characteristics, and may be useful in both studies and clinical settings.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, Dept of Women's and Children's Health , 2017.
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:du-27436ISBN: 978-91-7676-778-8 OAI: oai:DiVA.org:du-27436DiVA, id: diva2:1193988
Available from: 2018-03-28 Created: 2018-03-28 Last updated: 2018-03-28Bibliographically approved
List of papers
1. Does treatment with an insulin pump improve glycaemic control in children and adolescents with type 1 diabetes? A retrospective case-control study.
Open this publication in new window or tab >>Does treatment with an insulin pump improve glycaemic control in children and adolescents with type 1 diabetes? A retrospective case-control study.
2015 (English)In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 16, no 7, p. 546-53Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To investigate long-term effects on glycaemic control, ketoacidosis, serious hypoglycaemic events, insulin requirements, and body mass index standard deviation scores (BMI-SDS) in children and adolescents with type 1 diabetes starting on continuous subcutaneous insulin infusion (CSII) compared with children and adolescents treated with multiple daily injections (MDI).

METHODS: This retrospective case-control study compares 216 patients starting CSII with a control group on MDI (n = 215), matched for glycated hemoglobin (HbA1c), sex, and age during a 2-yr period. Variables collected were gender, age, HbA1c, insulin requirement, BMI, BMI-SDS, ketoacidosis, and serious hypoglycaemic events.

RESULTS: In the CSII group there was an improvement in HbA1c after 6 and 12 months compared with the MDI group. For boys and girls separately the same effect was detected after 6 months, but only for boys after 12 months. The incidence of ketoacidosis was higher in the CSII group compared with the MDI group (2.8 vs. 0.5/100 person-yr). The incidences of severe hypoglycaemic episodes per 100 person-yr were three in the CSII group and six in the MDI group (p < 0.05). After 6, 12, and 24 months, the insulin requirement was higher in the MDI group.

CONCLUSIONS: This study shows that treatment with CSII resulted in an improvement in HbA1c levels up to 1 yr and decreased the number of severe hypoglycaemic events, but the frequency of ketoacidosis increased. The major challenge is to identify methods to maintain the HbA1c improvement, especially among older children and teenagers, and reduce the frequency of ketoacidosis.

Keywords
adolescent, case-control studies, child, diabetes mellitus type 1, insulin infusion systems
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:du-27247 (URN)10.1111/pedi.12209 (DOI)25327782 (PubMedID)
Available from: 2018-03-08 Created: 2018-03-08 Last updated: 2018-03-28Bibliographically approved
2. 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.
Open this publication in new window or tab >>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.
2017 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 3, p. 497-504Article in journal (Refereed) Published
Abstract [en]

AIM: To test the validity and reliability of the 'Check your Health by proxy' instrument in parents to children with diabetes aged 8-17 years.

METHODS: One hundred and ninety-one caregivers and their children, aged 8-17 years, were included. All completed the 'Check your Health' questionnaire measuring quality of life and burden of diabetes, DISABKIDS self- or proxy version, and 45 completed the same questionnaires 2 weeks later.

RESULTS: Test-retest reliability on the 'Check your Health' questionnaire by proxy was moderate to strong (r = 0.48-0.74), p < 0.002). Convergent validity was weak to moderate (r = 0.15-0.49, p < 0.05). The instrument showed acceptable discriminant validity. Parents reported lower scores than the children on emotional health and social relations and higher scores on physical and emotional burden and higher burden on quality of life. Poorer social relationships and quality of life were associated with higher reported disease severity. The diabetes burden domain of the questionnaire correlated to perceived severity of diabetes and to perceived health. Discriminant validity showed that poorer social relationships and quality of life were associated with higher severity of the disease. The diabetes burden domain of 'Check your Health' by proxy showed discriminant validity on perceived severity of diabetes.

CONCLUSIONS: The instrument 'Check your Health' by proxy showed acceptable psychometric characteristics in parents to young people (8-17 years of age) with diabetes. We also concluded that parents reported that their children had lower health and higher burden of diabetes than the children did, and it correlated to reported disease severity.

Keywords
burden of diabetes, parents, perceived health, quality of life, type 1 diabetes
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:du-27246 (URN)10.1111/scs.12362 (DOI)27440173 (PubMedID)
Available from: 2018-03-08 Created: 2018-03-08 Last updated: 2018-03-28Bibliographically approved
3. Adolescents’ perceptions of participation in group education using the Guided Self-Determination-Young method: a qualitative study
Open this publication in new window or tab >>Adolescents’ perceptions of participation in group education using the Guided Self-Determination-Young method: a qualitative study
Show others...
2017 (English)In: BMJ Open Diabetes Research & Care, ISSN 2052-4897, Vol. 5, no 1, article id e000432Article in journal (Refereed) Published
Abstract [en]

Objective Guided Self-Determination (GSD) is a person-centered communication and reflection method. Education in groups may have a greater impact than the content of the education, and constructive communication between parents and adolescents has been shown to be of importance. The purpose of this study was to describe adolescents’ perceptions of participation in group education with the Guided Self-Determination-Young (GSD-Y) method, together with parents, in connection with the introduction of continuous subcutaneous insulin infusion.

Research design and methods In the present qualitative interview study, 13 adolescents with type 1 diabetes were included after completing a GSD-Y group education program in connection with the introduction of continuous subcutaneous insulin infusion at three hospitals located in central Sweden. The adolescents were interviewed individually, and qualitative content analysis was applied to the interview transcripts.

Results Two categories that emerged from the analysis were the importance of context and growing in power through the group process. An overarching theme that emerged from the interviews was the importance of expert and referent power in growing awareness of the importance of self-management as well as mitigating the loneliness of diabetes.

Conclusions GSD-Y has, in various ways, mitigated experiences of loneliness and contributed to conscious reflection about self-management in the group (referent power) together with the group leader (expert power). Overall, this highlights the benefits of group education, and the GSD method emphasizes the person-centered approach.

Keywords
adolescent, patient education, qualitatve research, type 1 diabetes
National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-26578 (URN)10.1136/bmjdrc-2017-000432 (DOI)29225894 (PubMedID)
Funder
Swedish Diabetes Association
Note

Open Access APC beslut 28/2017

Available from: 2017-11-21 Created: 2017-11-21 Last updated: 2018-03-28Bibliographically approved

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Brorsson, Anna Lena

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