| 1. |
- Brorsson, Anna Lena, 1964, et al.
(författare)
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Randomised controlled trial of a person-centred transition programme for adolescents with type 1 diabetes (STEPSTONES-DIAB): a study protocol
- 2020
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:4
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Adolescence is a critical period for youths with chronic conditions, when they are supposed to take over the responsibility for their health. Type 1 diabetes (T1D) is one of the most common chronic conditions in childhood and inadequate self-management increases the risk of short-term and long-term complications. There is a lack of evidence regarding the effectiveness of transition programmes. As a part of the Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS research programme, the objective of this study is to evaluate the effectiveness and experiences of different transitional care models, including a person-centred transition programme aiming to empower adolescents with T1D to become active partners in their health and care. Methods and analysis In this randomised controlled trial, patients are recruited from two paediatric diabetes clinics at the age of 16 years. Patients are randomly assigned to either the intervention group (n=70) where they will receive usual care plus the structured transition programme, or to the control group (n=70) where they will only receive usual care. Data will be collected at 16, 17 and 18.5 years of age. In a later stage, the intervention group will be compared with adolescents in a dedicated youth clinic in a third setting. The primary outcome is patient empowerment. Secondary outcomes include generic, diabetes-specific and transfer-specific variables. Ethics and dissemination The study has been approved by the Ethical Review Board in Stockholm (Dnr 2018/1725-31). Findings will be reported following the Consolidated Standards of Reporting Trials statement and disseminated in peer-reviewed journals and at international conferences.
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| 2. |
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| 3. |
- Vallmark, Mikaela, 1988, et al.
(författare)
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Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.
- 2023
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Ingår i: Journal of patient-reported outcomes. - : Springer. - 2509-8020. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes.Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n=163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness.Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively.TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.
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| 4. |
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| 5. |
- Brorsson, Anna Lena, 1964-, et al.
(författare)
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A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion : a study protocol
- 2013
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Ingår i: BMC Pediatrics. - : BioMed Central. - 1471-2431. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- Background. Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. Omitting bolus insulin doses using CSII may cause reduced glycaemic control among adolescents. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrolment.Methods. This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used to evaluate perceived health and QoL: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment.Results and discussion. In this study, we will assess the effect of starting an insulin pump together with the model of Guided Self-Determination to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family.Trial registration: Current controlled trials: ISRCTN22444034
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| 6. |
- Brorsson, Anna Lena, 1964-, et al.
(författare)
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A person-centered education for adolescents with type 1 diabetes - a randomized controlled trial
- 2019
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Ingår i: Pediatric Diabetes. - : Hindawi Limited. - 1399-543X .- 1399-5448. ; 20:7, s. 986-996
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Young people with type 1 diabetes and their parents need to receive person-centred education to be able to manage their diabetes. Guided Self-Determination-Young (GSD-Y) is a person-centred communication and reflection education model that can be used in educational programmes for young people with type 1 diabetes.OBJECTIVE: To evaluate whether GSD-Y leads to improved glycaemic control, increased self-perceived health and health-related quality of life, fewer diabetes-related family conflicts, and improved self-efficacy in a group-based intervention for adolescents starting continuous subcutaneous insulin infusion (CSII) and their parents.METHODS: This randomized controlled trial included 71 adolescents starting CSII. Participants were followed for twelve months. The intervention group (n=37) attended seven group training sessions over a period of five months, using the GSD-Y model, the control group received standard care. Variables evaluated were HbA1c, self-perceived health, health-related quality of life, family conflicts, self-efficacy, and usage of continuous glucose monitoring.RESULTS: When adjusted for sex and family conflicts, there was a difference in glycaemic control between the groups at twelve months, favouring the intervention group (62 vs. 70 mmol/mol, p=0.009). When analyses were performed on boys and girls separately and adjusted for family conflicts, the only difference detected was for boys after twelve months (p=0.019). The intervention showed no effect on self-perceived health, health-related related quality of life, family conflicts, or self-efficacy.CONCLUSIONS: An intervention with GSD-Y may have an effect on glycaemic control. The content of the GSD-Y groups may serve as a model for person-centred care in adolescents with type 1 diabetes. This article is protected by copyright. All rights reserved.
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| 7. |
- Brorsson, Anna Lena, 1964-, et al.
(författare)
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Adolescents’ perceptions of participation in group education using the Guided Self-Determination-Young method : a qualitative study
- 2017
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Ingår i: BMJ Open Diabetes Research & Care. - : BMJ. - 2052-4897. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Brorsson, Anna Lena, 1964-, et al.
(författare)
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Does treatment with an insulin pump improve glycaemic control in children and adolescents with type 1 diabetes? : A retrospective case-control study
- 2015
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Ingår i: Pediatric Diabetes. - : Hindawi Limited. - 1399-543X .- 1399-5448. ; 16:7, s. 546-553
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
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| 10. |
- Brorsson, Anna Lena, 1964-, et al.
(författare)
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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
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 31:3, s. 497-504
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 11. |
- Haas, Josephine, et al.
(författare)
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Guided self-determination-young versus standard care in the treatment of young females with type 1 diabetes : study protocol for a multicentre randomized controlled trial
- 2017
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Ingår i: Trials. - : Springer Science and Business Media LLC. - 1745-6215. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Female adolescents with type 1 diabetes mellitus (T1DM) have the most unsatisfactory glycaemic control of all age groups and report higher disease burden, poorer perceived health, and lower quality of life than their male counterparts. Females with T1DM face an excess risk of all-cause mortality compared with men with T1DM. New methods are needed to help and support young females with T1DM to manage their disease. A prerequisite for successful diabetes management is to offer individualized, person-centred care and support the patient's own motivation. Guided self-determination (GSD) is a person-centred reflection and problem-solving method intended to support the patient's own motivation in the daily care of her diabetes and help develop skills to manage difficulties in diabetes self-management. GSD has been shown to improve glycaemic control and decrease psychosocial stress in young women with T1DM. The method has been adapted for adolescents and their parents, termed GSD-young (GSD-Y). The aim of this study was to evaluate whether an intervention with GSD-Y in female adolescents with T1DM leads to improved glycaemic control, self-management, treatment satisfaction, perceived health and quality of life, fewer diabetes-related family conflicts, and improved psychosocial self-efficacy.METHODS/DESIGN: This is a parallel-group randomized controlled superiority trial with an allocation ratio of 1:1. One hundred female adolescents with T1DM, 15-20 years of age, and their parents (if < 18 years of age), will be included. The intervention group will receive seven individual GSD-Y education visits over 3 to 6 months. The control group will receive standard care including regular visits to the diabetes clinic. The primary outcome is level of glycaemic control, measured as glycosylated haemoglobin (HbA1c). Secondary outcomes include diabetes self-management, treatment satisfaction, perceived health and quality of life, diabetes-related family conflicts, and psychosocial self-efficacy. Data will be collected before randomization and at 6 and 12 months.DISCUSSION: Poor glycaemic control is common in female adolescents and young adults with T1DM. Long-standing hyperglycaemia increases the risks for severe complications and may also have an adverse impact on the outcome of future pregnancies. In this study, we want to evaluate if the GSD-Y method can be a useful tool in the treatment of female adolescents with T1DM.TRIAL REGISTRATION: Current controlled trials, ISRCTN57528404 . Registered on 18 February 2015.
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| 12. |
- Saarinen, Tuula, et al.
(författare)
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Insulin pump therapy is perceived as liberating, but to many it can imply a sense of the diabetes made visible
- 2014
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Ingår i: European Diabetes Nursing. - : Informa UK Limited. - 1551-7853 .- 1551-7861. ; 11:2, s. 38-42
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Tidskriftsartikel (refereegranskat)abstract
- This study describes how adults with type 1 diabetes experience the transition from multiple daily injections (MDI) to continuous subcutaneous insulin infusion (CSII or ‘insulin pump’). The study is based on interviews in focus groups, with 11 persons with type 1 diabetes who had had CSII for at least one year, which were analysed using qualitative content analysis. The analysis resulted in three categories: life and health; involvement of others; and technology dependence. Participants' experiences are summarised in the theme ‘CSII is perceived as liberating, but also implies a sense of the diabetes made visible’. The transition resulted in changed life and health with greater freedom and flexibility, particularly in meal situations. The participants felt that their blood glucose was easier to control. Those around them reacted with curiosity, but some participants felt compelled to tell others that they had diabetes since the pump could be seen or heard. The participants found that coping with CSII in daily life was easier and more comfortable than they had expected. However, having to constantly be prepared for technical failure was experienced as cumbersome. All participants indicated that they were satisfied with their treatment and recommended it to others. Transition to CSII may be experienced as liberating, but might also imply a sense of the diabetes made visible. The results can be used in clinical practice, when advising about CSII. Being aware of both positive and negative experiences with CSII can contribute to better care for those already being treated with CSII.
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| 13. |
- Brorsson, Anna Lena, 1964-
(författare)
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Diabetes during childhood and adolescence : studies of insulin treatment, patient-reported outcomes, and evaluation of an empowerment-based education
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 14. |
- Ekstrom, Klas, et al.
(författare)
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Tissue IGF-I Measured by Microdialysis Reflects Body Glucose Utilization After rhIGF-I Injection in Type 1 Diabetes
- 2015
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Ingår i: Journal of Clinical Endocrinology and Metabolism. - : ENDOCRINE SOC. - 0021-972X .- 1945-7197. ; 100:11, s. 4299-4306
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Tidskriftsartikel (refereegranskat)abstract
- Context: Type 1 diabetes is associated with portal insulin deficiency and disturbances in the GH-IGF axis including low circulating IGF-I and GH hypersecretion. Whether peripheral hyperinsulinemia and GH hypersecretion, which are relevant to the development of vascular complications, result in elevated tissue IGF-I remains unknown. Objective: The purpose of this study was to determine the relationship between whole-body glucose uptake and tissue IGF-I measured by microdialysis. Design: This was a single-blind placebo-controlled crossover study. Setting: The setting was a tertiary pediatric endocrine referral center. Participants: The participants were seven young male adults with type 1 diabetes. Intervention: After an overnight fast, a 6-h lasting euglycemic clamp was performed (constant insulin infusion at 0.5mU/kg x minute and variable glucose infusion rate [GIR]) and a subcutaneous injection of recombinant human (rh) IGF-I (120 mu g/kg) or saline was given after 2 hours. In parallel, tissue IGF-I levels were determined by microdialysis (md-IGF-I). Main Outcome Measures: md-IGF-I levels in muscle and subcutaneous fat, and GIR were determined. Results: md-IGF-I levels were detectable but unchanged after saline. After rhIGF-I, muscle and subcutaneous fat md-IGF-I increased during the second and third hour and then reached a plateau up to 10-fold higher than baseline (P less than .001). GIR was unchanged after saline, whereas it increased 2.5-fold concomitantly with the increase in md-IGF-I (P less than .0001). In contrast, serum IGF-I was increased already at 30 minutes after rhIGF-I and reached a plateau 2-fold above baseline (P less than .0001). Conclusion: We demonstrate that md-IGF-I measurements are valid and physiologically relevant by reflecting rhIGF-I-induced glucose uptake. Future studies should be conducted to elucidate the role of local tissue IGF-I in diabetic vascular complications.
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| 15. |
- Granström, Therese, et al.
(författare)
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Patients’ experiences before starting anti-VEGF treatment for sight-threatening diabetic macular oedema : A qualitative interview study
- 2018
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Ingår i: Nordic journal of nursing research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; 38:1, s. 11-17
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Tidskriftsartikel (refereegranskat)abstract
- The diabetic complication macular oedema (DME) is a growing problem worldwide because of the increasing number of patients suffering from diabetes mellitus (DM). DME is treated with injections of anti-vascular endothelial growth factor (anti-VEGF) in the eye. This real-world study aimed to describe patients’ experiences before they received their first injection in the eye. Twenty-one men and women aged 49 to 86 years were interviewed. The interviews were analysed using qualitative content analysis. Two categories and an overall theme ‘to be at a crossroads and a crucial phase in life with an uncertain outcome’ were found. The participants expressed thoughts and concerns at different levels, practical concerns about the treatment procedure, and other existential thoughts regarding hope for improved visual acuity or fear of deterioration. Cooperation between eye clinics and diabetes clinics should be strengthened to clarify who is responsible for providing the information and support required by patients.
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| 16. |
- Nordin, Karin, et al.
(författare)
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Adolescents’ experiences of obesity surgery : a qualitative study
- 2018
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Ingår i: Surgery for Obesity and Related Diseases. - : Elsevier BV. - 1550-7289 .- 1878-7533. ; 14:8, s. 1157-1162
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:The positive effects of behavioural treatment and weight management in adolescents with severe obesity are modest. Obesity surgery can be an option for adolescents, but is not the first-hand choice of treatment. The knowledge about adolescents' own experiences of having undergone surgery and their thoughts and feelings of the follow-up period are limited.OBJECTIVES:To describe adolescents' decision to go through obesity surgery as teenager and their experiences of the follow-up period.SETTING:National Childhood Obesity Centre at Karolinska University Hospital in Stockholm, Sweden.METHODS:Phone interviews with 20 young adults that went through obesity surgery as teenagers. Interviews were analysed with qualitative systematic text condensation.RESULTS:"Lost in the healthcare system" and "A rough but well worth journey to a healthier life" were the categories that appeared in our analysis. The participant had a feeling of uncertainty about contacts with the healthcare system and the transition to primary care was confusing. Most of the participants were happy with the decision to go through obesity surgery as teenager, despite it had been a difficult time.CONCLUSIONS:Our results show implications for improving the clinical care of adolescents undergoing obesity surgery, which should be offered as a last choice. Information and individualized supports should be offered more often during first year postsurgery and should be given by a multidisciplinary team. This multifaceted population should be given priority for a successful transition.
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