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- Ekberg, Joakim, et al.
(författare)
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Web 2.0 Systems Supporting Childhood Chronic Disease Management: Design Guidelines Based on Information Behaviour and Social Learning Theories
- 2010
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Ingår i: JOURNAL OF MEDICAL SYSTEMS. - : Springer Science and Business Media LLC. - 0148-5598 .- 1573-689X. ; 34:2, s. 107-117
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Tidskriftsartikel (refereegranskat)abstract
- Self-directed learning denotes that the individual is in command of what should be learned and why it is important. In this study, guidelines for the design of Web 2.0 systems for supporting diabetic adolescents every day learning needs are examined in light of theories about information behaviour and social learning. A Web 2.0 system was developed to support a community of practice and social learning structures were created to support building of relations between members on several levels in the community. The features of the system included access to participation in the culture of diabetes management practice, entry to information about the community and about what needs to be learned to be a full practitioner or respected member in the community, and free sharing of information, narratives and experience-based knowledge. After integration with the key elements derived from theories of information behaviour, a preliminary design guideline document was formulated.
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- Hanberger, Lena, et al.
(författare)
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Childhood diabetes in the nordic countries : a comparison of quality registries.
- 2014
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Ingår i: Journal of diabetes science and technology. - : Sage Publications. - 1932-2968. ; 8:4, s. 738-44
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Tidskriftsartikel (refereegranskat)abstract
- In 2008 a Nordic collaboration was established between the quality registries in Denmark, Iceland, Norway, and Sweden to improve quality of care for children with diabetes. This study aimed to describe those registries and confirm that the registry variables are comparable. Selected variables were used to demonstrate outcome measurements. The organization of the registries and methodology are described. Cross-sectional data for patients between birth and 14.9 years with type 1 diabetes mellitus in 2009 (n = 6523) from 89 centers were analyzed. Variables were age, gender, and diabetic ketoacidosis at onset, together with age, gender, HbA1c, insulin regimen, and severe hypoglycemia at follow-up in 2009. All 4 registries use a standardized registration at the onset of diabetes and at follow-up, conducted at the local pediatric diabetes centers. Methods for measuring HbA1c varied as did methods of registration for factors such as hypoglycemia. No differences were found between the outcomes of the clinical variables at onset. Significant variations were found at follow-up for mean HbA1c, the proportion of children with HbA1c < 57 mmol/mol (NGSP/DCCT 7.4%), (range 15-31%), the proportion with insulin pumps (range 34-55%), and the numbers with severe hypoglycemia (range 5.6-8.3/100 patient years). In this large unselected population from 4 Nordic countries, a high proportion did not reach their treatment target, indicating a need to improve the quality of pediatric diabetes care. International collaboration is needed to develop and harmonize quality indicators and offers possibilities to study large geographic populations, identify problems, and share knowledge.
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- Hanberger, Lena, et al.
(författare)
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Glycated haemoglobin variations in paediatric type 1 diabetes: the impact of season, gender and age
- 2014
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 103:4, s. 398-403
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Tidskriftsartikel (refereegranskat)abstract
- AimTo study whether monthly variations in type 1 diabetes incidence are related to monthly glycated haemoglobin (HbA1c) levels at diagnosis and if high HbA1c at diagnosis is related to certain clinical variables at diagnosis and during the clinical course of the disease. MethodsData from 4430 boys and 3590 girls registered in the Swedish paediatric diabetes quality registry, Swedish paediatric diabetes quality registry, from 2000 to 2010 were analysed. ResultsMonth of onset varied (pless than0.001), with 53% diagnosed during September to February, and mean HbA1c at diagnosis was highest in May (10.9%, 96mmol/mol) and lowest in (October 9.4%, 88mmol/mol) (pless than0.001). Girls showed higher HbA1c at onset than boys (pless than0.001). More than half (53%) with an annual mean HbA1c of greater than9.3% (78mmol/mol) and 4% of those with an annual mean of less than7.4% (57mmol/mol) in 2007 had greater than9.3% (78mmol/mol) in 2010. ConclusionPatients with high HbA1c levels during a certain period have the same high levels several years later. This group, perhaps including those with high HbA1c level at diagnosis, may need more intensive care, including extra support from the diabetes teams and other forms of medical treatment.
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- Hanberger, Lena
(författare)
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Quality of Care in Children and Adolescents with Type 1 Diabetes : Patients’ and Healthcare Professionals’ Perspectives
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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- Hanberger, Lena, et al.
(författare)
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The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes
- 2012
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Ingår i: Diabetes Research and Clinical Practice. - : Elsevier BV. - 0168-8227 .- 1872-8227. ; 96:3, s. 331-338
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Tidskriftsartikel (refereegranskat)abstract
- Objective: We aimed to identify factors for improvements of mean A1C at centres treating children and adolescents with diabetes.research Design and methods: Through data from the Swedish paediatric diabetes quality registry, SWEDIABKIDS, five centres with the lowest mean A1C (Low group), five with the highest (High group), and five with the largest decrease in centre mean A1C (Decrease group) were identified. The diabetes team members completed a questionnaire, response rate 85%, (109/128) and reported team structure and process. Open-ended questions regarding messages to patients about important diabetes matters were analysed with summative content analysis.Results: Compared to the High group, the Low and Decrease groups showed shorter professional experience and lower proportion of special diabetes-educated team members, and higher compliance with guidelines. Trends for higher mean insulin dose, larger centre size and larger team size were found. The content analysis indicated that the Low and Decrease groups gave a clear message and had lower A1C target value. The team members in these groups were engaged, had a positive attitude and a perception of a well-functioning team. The High group gave a vague message, needed more frames and had a perception of lack of cooperation in the team.Conclusions: The team members' approach seems to affect metabolic control in children and adolescents. The team members need to be aware of their approach and how it affects patients and parents, and also of the importance of the possibility of using resources and competence within the team.
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