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  • 1.
    Akesson, Karin
    et al.
    Ryhov County Hospital, Sweden; Jonköping County Council, Sweden; University of Jonköping, Sweden.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    The influence of age, gender, insulin dose, BMI, and blood pressure on metabolic control in young patients with type 1 diabetes2015In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 16, no 8, p. 581-586Article in journal (Refereed)
    Abstract [en]

    ObjectiveTo explore the relationship between certain clinical variables and metabolic HbA1c at diagnosis correlated to HbA1c at follow-up (p less than 0.001). There was a clear gender difference regarding HbA1c. Girls had higher values both at diagnosis and at follow-up (p less than 0.001). Girls also had lower BMI and pH at diagnosis than boys (p less than 0.001). In contrast, girls with the highest body mass index (BMI) at follow-up had higher mean HbA1c at follow-up in 2010 (p less than 0.001). Having a mother and/or a father with high BMI implied higher HbA1c at diagnosis (p less than 0.003). ConclusionsHbA1c at diagnosis seems to predict metabolic control years later. There is a gender difference at diagnosis as female patients have higher HbA1c than males at diagnosis as well as at follow up. As metabolic control is very much correlated to complications there is a need to early identify patients at risk of poor metabolic control. Even though we do not know whether a high HbA1c level is mainly due to severity of the disease or to behavioral patterns, new ways to treat and support these children, especially girls, are needed.

  • 2.
    Anderzen, Johan
    et al.
    Ryhov County Hospital, Sweden.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Gudbjornsdottir, Soffia
    University of Gothenburg, Sweden.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Akesson, Karin
    Ryhov County Hospital, Sweden; Futurum, Australia; Jonköping Academic Improvement Health and Welf, Germany.
    Teenagers with poor metabolic control already have a higher risk of microvascular complications as young adults2016In: Journal of diabetes and its complications, ISSN 1056-8727, E-ISSN 1873-460X, Vol. 30, no 3, p. 533-536Article in journal (Refereed)
    Abstract [en]

    Aims: To evaluate how HbA1c in adolescents with type 1 diabetes affects microvascular complications in young adults. Methods: All individuals registered in the Swedish paediatric diabetes quality registry (SWEDIABKIDS) 13-18 years of age, and as adults registered in the Swedish National Diabetes Registry (NDR) in both the years 2011 and 2012 were included, in total 4250 individuals. Results: Of the individuals with mean HbA1c >78 mmol/mol in SWEDIABKIDS 83.4% had retinopathy, 15.8% had microalbuminuria and 4.9% had macroalbuminuria in NDR. The logistic regression analysis showed that the OR to develop macroalbuminuria as a young adult was significantly higher in the group with mean HbA1c >78 mmol/mol in SWEDIABKIDS (p < 0.05). Among the patients with mean HbA1c above 78 mmol/mol in both registries there was a significantly higher proportion that had retinopathy, microalbuminuria (p < 0.001) and/or macroalbuminuria (p < 0.01) compared to the group with HbA1c below 57 mmol/mol in both registries. Only 6.5% of the persons in this study were over 30 years of age. Conclusions: Paediatric diabetes teams working with teenagers must be aware of the impact of good metabolic control during adolescence, and should intensify the care during this vulnerable period of life to reduce the risk of microvascular complications in young adults.

  • 3.
    Charalampopoulos, Dimitrios
    et al.
    UCL, England.
    Hermann, Julia M.
    Ulm Univ, Germany; German Ctr Diabet Res DZD, Germany.
    Svensson, Jannet
    Herlev Univ Hosp, Denmark.
    Skrivarhaug, Torild
    Oslo Univ Hosp, Norway.
    Maahs, David M.
    Stanford Univ, CA 94305 USA.
    Åkesson, Karin
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences.
    Warner, Justin T.
    Childrens Hosp Wales, Wales.
    Holl, Reinhard W.
    Ulm Univ, Germany; German Ctr Diabet Res DZD, Germany.
    Birkebaek, Niels H.
    Aarhus Univ Hosp, Denmark.
    Drivvoll, Ann K.
    Oslo Univ Hosp, Norway.
    Miller, Kellee M.
    Jaeb Ctr Hlth Res, FL USA.
    Svensson, Ann-Marie
    Ctr Registers Reg Vastra Gotaland, Sweden.
    Stephenson, Terence
    University College London, London, U.K..
    Hofer, Sabine E.
    Med Univ Innsbruck, Austria.
    Fredheim, Siri
    Herlev University Hospital, Herlev, Denmark.
    Kummernes, Siv J.
    Oslo Univ Hosp, Norway.
    Foster, Nicole
    Jaeb Ctr Hlth Res, FL USA.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
    Amin, Rakesh
    UCL, England.
    Rami-Merhar, Birgit
    Med Univ Vienna, Austria.
    Johansen, Anders
    Univ Copenhagen, Denmark.
    Dahl-Jorgensen, Knut
    Oslo Univ Hosp, Norway; Univ Oslo, Norway.
    Clements, Mark
    Childrens Mercy Hosp, MO 64108 USA; Univ Missouri Kansas City, MO USA; Univ Kansas, KS 66103 USA.
    Hanas, Ragnar
    NU Hosp Grp, Sweden; Univ Gothenburg, Sweden.
    Exploring Variation in Glycemic Control Across and Within Eight High-Income Countries: A Cross-sectional Analysis of 64,666 Children and Adolescents With Type 1 Diabetes2018In: Diabetes Care, ISSN 0149-5992, E-ISSN 1935-5548, Vol. 41, no 6, p. 1180-1187Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE International studies on childhood type 1 diabetes (T1D) have focused on whole-country mean HbA(1c) levels, thereby concealing potential variations within countries. We aimed to explore the variations in HbA(1c) across and within eight high-income countries to best inform international benchmarking and policy recommendations. RESEARCH DESIGN AND METHODS Data were collected between 2013 and 2014 from 64,666 children with T1D who were amp;lt; 18 years of age across 528 centers in Germany, Austria, England, Wales, U.S., Sweden, Denmark, and Norway. We used fixed-and random-effects models adjusted for age, sex, diabetes duration, and minority status to describe differences between center means and to calculate the proportion of total variation in HbA(1c) levels that is attributable to between-center differences (intraclass correlation [ICC]). We also explored the association between within-center variation and childrens glycemic control. RESULTS Sweden had the lowest mean HbA(1c) (59mmol/mol [7.6%]) and together with Norway and Denmark showed the lowest between-center variations (ICC amp;lt;= 4%). Germany and Austria had the next lowest mean HbA(1c) (61-62 mmol/mol [7.7-7.8%]) but showed the largest center variations (ICC similar to 15%). Centers in England, Wales, and the U.S. showed low-to-moderate variation around high mean values. In pooled analysis, differences between counties remained significant after adjustment for children characteristics and center effects (P value amp;lt; 0.001). Across all countries, children attending centers with more variable glycemic results had higher HbA(1c) levels (5.6mmol/mol [0.5%] per 5mmol/mol [0.5%] increase in center SD of HbA(1c) values of all children attending a specific center). CONCLUSIONS A tsimilar average levels of HbA(1c), countries display different levels of center variation. The distribution of glycemic achievement within countries should be considered in developing informed policies that drive quality improvement.

  • 4.
    Ekberg, Joakim
    et al.
    Linköping University, Department of Medicine and Health Sciences, Division of Preventive and Social Medicine and Public Health Science. Linköping University, Faculty of Health Sciences.
    Ericson, Leni
    Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces. Linköping University, The Institute of Technology.
    Timpka, Toomas
    Linköping University, Department of Medicine and Health Sciences, Division of Preventive and Social Medicine and Public Health Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Public Health Sciences.
    Eriksson, Henrik
    Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces. Linköping University, The Institute of Technology.
    Nordfeldt, Sam
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry.
    Hanberger, Lena
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    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.
    Web 2.0 Systems Supporting Childhood Chronic Disease Management: Design Guidelines Based on Information Behaviour and Social Learning Theories2010In: JOURNAL OF MEDICAL SYSTEMS, ISSN 0148-5598, Vol. 34, no 2, p. 107-117Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Hanberger, Lena
    Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences.
    Quality of Care in Children and Adolescents with Type 1 Diabetes: Patients’ and Healthcare Professionals’ Perspectives2010Doctoral 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.

    List of papers
    1. Quality of care from the patient's perspective in pediatric diabetes care
    Open this publication in new window or tab >>Quality of care from the patient's perspective in pediatric diabetes care
    2006 (English)In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 72, no 2, p. 197-205Article in journal (Refereed) Published
    Abstract [en]

    This study aimed to investigate perceived quality of diabetes care. A geographic population of 400 type 1 diabetes patients <20 years received the validated questionnaire quality of care from the patient's perspective (QPP) including additional context-specific items. Primary endpoints were perceived reality of care by specific items and factors and their subjective importance, respectively. Relations to severe hypoglycemia, HbA1c, insulin dose, BMI, age, duration and sociodemographic factors were also studied. On average, a high perceived quality of care was reported from both parents and adolescents (response rate 285/400 (71%) and 155/237 (65%), respectively), highest regarding possibility to talk to nurse/doctor in privacy, respect, general atmosphere, continuity in patient-physician relationship and patient participation. Lower perceived reality with higher subjective importance was seen for information about results from medical examinations and treatments and information about self-care, access to care and waiting time. While parents' and their adolescents' mean ratings correlated well for reality r = 0.95 (p < 0.001) and importance r = 0.53 (p = 0.023), parents rated reality level higher (p = 0.012) and importance even higher (p < 0.001). The QPP instrument used with additional context-specific items can provide specific information to be used in quality of care development. In our setting, improvements are needed regarding patient information, access to care and waiting time. © 2005 Elsevier Ireland Ltd. All rights reserved.

    Keywords
    type 1 diabetes, children and adolescents, quality of care, patient satisfaction
    National Category
    Social Sciences
    Identifiers
    urn:nbn:se:liu:diva-36120 (URN)10.1016/j.diabres.2005.10.009 (DOI)29997 (Local ID)29997 (Archive number)29997 (OAI)
    Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2017-12-13
    2. Health-related quality of life in intensively treated young patients with type 1 diabetes
    Open this publication in new window or tab >>Health-related quality of life in intensively treated young patients with type 1 diabetes
    2009 (English)In: Pediatric Diabetes, ISSN 1399-543X, Vol. 10, no 6, p. 374-381Article 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.

    Keywords
    Children and adolescents; Diabetes type 1; Quality of life; Questionnaire
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-21221 (URN)10.1111/j.1399-5448.2008.00496.x (DOI)
    Available from: 2009-09-30 Created: 2009-09-30 Last updated: 2010-09-17
    3. AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS
    Open this publication in new window or tab >>AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS
    2008 (English)In: Diabetes Care, ISSN 0149-5992, E-ISSN 1935-5548, Vol. 31, no 5, p. 927-929Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVE - We explored the relationship between AlC and insulin regimen, duration of diabetes, age, sex, and BMI as well as the differences between clinical mean AlC levels at pediatric diabetes clinics in Sweden. RESEARCH DESIGN AND METHODS - Data from 18,651 clinical outpatient visits (1,033 girls and 1,147 boys) at 20 pediatric clinics during 2001 and 2002 registered in the Swedish Childhood Diabetes Registry SWEDIABKIDS, a national quality registry, were analyzed. RESULTS - AlC was < 7.0% (target value similar to 8% per Diabetes Control and Complications Trial/National Glycohemoglobin Standardization Program standards) at 35% of the visits. Girls had significantly higher mean AlC than boys during adolescence. High mean AlC was correlated with high mean insulin dose, long duration of diabetes, and older age. Mean AlC varied between clinics (6.8-8.2%). Differences between centers could not be explained by differences in diabetes duration, age, BMI, or insulin dose. CONCLUSIONS - Adolescents with a high insulin dose and a long duration of diabetes, especially girls, need to be focused on, Differences in mean values between centers remained inexplicable and require further investigation.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-45890 (URN)10.2337/dc07-1863 (DOI)
    Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2017-12-13
    4. The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes
    Open this publication in new window or tab >>The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes
    2012 (English)In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 96, no 3, p. 331-338Article in journal (Refereed) Published
    Abstract [en]

    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.

    Keywords
    Type 1 diabetes, pediatric, centre difference, HbA1c, summative content analysis
    National Category
    Pediatrics
    Identifiers
    urn:nbn:se:liu:diva-59312 (URN)10.1016/j.diabres.2012.01.016 (DOI)000305281100021 ()
    Available from: 2010-09-13 Created: 2010-09-13 Last updated: 2017-12-12
    5. Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – A CASE STUDY
    Open this publication in new window or tab >>Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – A CASE STUDY
    (English)Manuscript (preprint) (Other academic)
    Abstract [en]

    AIM: To develop a web portal designed to facilitate self-management, including diabetes-related information and social networking functions, and study its use and effects in young patients with diabetes.

    DESIGN AND METHOD: A Web 2.0 portal was developed in collaboration with patients, parents and their practitioners. It offered communication with local practitioners, interaction with peers and access to relevant information and services. Children and adolescents with diabetes in a geographic population of two paediatric clinics in Sweden were randomized to a group (n=233) receiving passwords for access to the portal, or a control group with no access (n=230) for one year. All subjects had access during a second study year. The portal was used on users’ own initiative only without directions from health care professionals or researchers.

    Measures: User activity by site visits and page visits logged per user. Health-related quality of life (HRQOL), empowerment (DES), and quality of information (QPP) questionnaires at baseline and after one and two study years. Clinical data from the Swedish paediatric diabetes quality registry SWEDIABKIDS.

    RESULTS: There was a continuous flow of site visits, but decreasing in summer and Christmas periods. In 119/233 families (51%) someone visited the portal the first study year and in 169/484 (35%) the second study year. More frequent page visits were seen on social networking with peers, such as blogs, stories and discussions, followed by news from the local diabetes teams.

    No differences were found regarding outcome variables between intervention and control group. No adverse effects related to the treatment or self-care were identified. A higher proportion of mothers compared to fathers visited once or more the first (p<0.001) and the second year (p<0.001). Those patients where someone in the family visited five times or more (active users), n=68, had shorter diabetes duration (p= 0.006), were younger (p=0.008), had lower HbA1c after one year of access (p=0.010), and were more often girls (p<0.001).

    Conclusions: The Web 2.0 portal appears useful as a complement to traditional care for this target group. Peer interaction seems to be a valued aspect. The use of a portal probably needs to be integrated in routine care and promoted e.g. by diabetes team members, advertisements and newsletters. Research on electronic communication targeting young people with long-term health problems need to focus more on use of Web 2.0 including gender aspects.

    Keywords
    Type 1 diabetes, children, adolescent, e-health, patient education, intervention, metabolic control
    National Category
    Pediatrics
    Identifiers
    urn:nbn:se:liu:diva-59319 (URN)
    Available from: 2010-09-13 Created: 2010-09-13 Last updated: 2010-09-17
  • 6.
    Hanberger, Lena
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Akesson, K.
    County Hospital Ryhov, Sweden Jonköping University, Sweden Jonköping University, Sweden .
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Glycated haemoglobin variations in paediatric type 1 diabetes: the impact of season, gender and age2014In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, no 4, p. 398-403Article in journal (Refereed)
    Abstract [en]

    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.

  • 7.
    Hanberger, Lena
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Birkebaek, Niels
    Department of Paediatrics, Aarhus, Aarhus University Hospital, Skejby, Denmark.
    Bjarnason, Ragnar
    Children’s Medical Center, Landspítali University Hospital and Faculty of Medicine, University of Iceland, Reykjavík, Iceland.
    Drivvoll, Ann Kristin
    Woman and Children’s Division, Department of Paediatric Medicine, Norwegian Childhood Diabetes Registry, Oslo University Hospital, Oslo, Norway.
    Johansen, Anders
    Department of Paediatrics, Herlev University Hospital, Herlev, Denmark.
    Skrivarhaug, Torild
    Woman and Children’s Division, Department of Paediatric Medicine, Norwegian Childhood Diabetes Registry, Oslo University Hospital, Oslo, Norway / Woman and Children’s Division, Department of Paediatric Medicine, Oslo University Hospital, Oslo, Norway.
    Thorsson, Arni V
    Children’s Medical Center, Landspítali University Hospital and Faculty of Medicine, University of Iceland, Reykjavík, Iceland.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Childhood diabetes in the nordic countries: a comparison of quality registries.2014In: Journal of diabetes science and technology, ISSN 1932-2968, Vol. 8, no 4, p. 738-44Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Hanberger, Lena
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    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.
    Nordfeldt, Sam
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
    Health-related quality of life in intensively treated young patients with type 1 diabetes2009In: Pediatric Diabetes, ISSN 1399-543X, Vol. 10, no 6, p. 374-381Article in journal (Refereed)
    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.

  • 9.
    Hanberger, Lena
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Ludvigsson, Johnny
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry.
    Quality of care from the patient's perspective in pediatric diabetes care2006In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 72, no 2, p. 197-205Article in journal (Refereed)
    Abstract [en]

    This study aimed to investigate perceived quality of diabetes care. A geographic population of 400 type 1 diabetes patients <20 years received the validated questionnaire quality of care from the patient's perspective (QPP) including additional context-specific items. Primary endpoints were perceived reality of care by specific items and factors and their subjective importance, respectively. Relations to severe hypoglycemia, HbA1c, insulin dose, BMI, age, duration and sociodemographic factors were also studied. On average, a high perceived quality of care was reported from both parents and adolescents (response rate 285/400 (71%) and 155/237 (65%), respectively), highest regarding possibility to talk to nurse/doctor in privacy, respect, general atmosphere, continuity in patient-physician relationship and patient participation. Lower perceived reality with higher subjective importance was seen for information about results from medical examinations and treatments and information about self-care, access to care and waiting time. While parents' and their adolescents' mean ratings correlated well for reality r = 0.95 (p < 0.001) and importance r = 0.53 (p = 0.023), parents rated reality level higher (p = 0.012) and importance even higher (p < 0.001). The QPP instrument used with additional context-specific items can provide specific information to be used in quality of care development. In our setting, improvements are needed regarding patient information, access to care and waiting time. © 2005 Elsevier Ireland Ltd. All rights reserved.

  • 10.
    Hanberger, Lena
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Nordfeldt, Sam
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry in Linköping.
    Use of a Web 2.0 Portal to Improve Education and Communication in Young Patients With Families: Randomized Controlled Trial2013In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 15, no 8Article in journal (Refereed)
    Abstract [en]

    Background: Diabetes requires extensive self-care and comprehensive knowledge, making patient education central to diabetes self-management. Web 2.0 systems have great potential to enhance health information and open new ways for patients and practitioners to communicate. less thanbrgreater than less thanbrgreater thanObjective: To develop a Web portal designed to facilitate self-management, including diabetes-related information and social networking functions, and to study its use and effects in pediatric patients with diabetes. less thanbrgreater than less thanbrgreater thanMethods: A Web 2.0 portal was developed in collaboration with patients, parents, and practitioners. It offered communication with local practitioners, interaction with peers, and access to relevant information and services. Children and adolescents with diabetes in a geographic population of two pediatric clinics in Sweden were randomized to a group receiving passwords for access to the portal or a control group with no access (n=230) for 1 year. All subjects had access during a second study year. Users activity was logged by site and page visits. Health-related quality of life (HRQOL), empowerment (DES), and quality of information (QPP) questionnaires were given at baseline and after 1 and 2 study years. Clinical data came from the Swedish pediatric diabetes quality registry SWEDIABKIDS. less thanbrgreater than less thanbrgreater thanResults: There was a continuous flow of site visits, decreasing in summer and Christmas periods. In 119/233 families (51%), someone visited the portal the first study year and 169/484 (35%) the second study year. The outcome variables did not differ between intervention and control group. No adverse treatment or self-care effects were identified. A higher proportion of mothers compared to fathers visited once or more the first year (Pandlt;.001) and the second year (Pandlt;.001). The patients who had someone in the family visiting the portal 5 times or more, had shorter diabetes duration (P=.006), were younger (P=.008), had lower HbA1c after 1 year of access (P=.010), and were more often girls (Pandlt;.001). Peer interaction seems to be a valued aspect. less thanbrgreater than less thanbrgreater thanConclusions: The Web 2.0 portal may be useful as a complement to traditional care for this target group. Widespread use of a portal would need integration in routine care and promotion by diabetes team members.

  • 11.
    Hanberger, Lena
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics.
    Samuelsson, Ulf
    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.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Ludvigsson, Johnny
    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.
    The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes2012In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 96, no 3, p. 331-338Article in journal (Refereed)
    Abstract [en]

    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.

  • 12.
    Hanberger, Lena
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
    Holl, Reinhard W.
    Univ Ulm, Germany; German Inst Diabet Res, Germany.
    Froehlich-Reiterer, Elke
    Med Univ Graz, Austria.
    Åkesson, Karin
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Ryhov Cty Hosp, Sweden; Jonkoping Univ, Sweden.
    Hofer, Sabine
    Med Univ Innsbruck, Austria.
    Type 1 diabetes during adolescence: International comparison between Germany, Austria, and Sweden2018In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 19, no 3, p. 506-511Article in journal (Refereed)
    Abstract [en]

    Objectives: By using pediatric diabetes quality registries in Austria, Germany, and Sweden treatment of type 1 diabetes and the outcome of care during the vulnerable adolescence period were compared. Methods: Data in DPV, broadly used in Austria and Germany, and Swediabkids used in Sweden, from clinical visits in the year 2013 on 14 383 patients aged 11 to 16 years regarding hemoglobin A1c (HbA1c), insulin regimen, body mass index (BMI)-SD score (SDS), blood pressure, hypoglycemia, ketoacidosis, and smoking habits were analyzed. Results: Patients in Sweden had fewer clinical visits per year (P amp;lt; .05), lower insulin dose per kg (P amp;lt; .001), and lower proportion of fast acting insulin compared with Germany and Austria (P amp;lt; .001). The proportion of pump users was higher in Sweden (P amp;lt; .001). Patients in Sweden had lower mean HbA1c levels (Austria: 64 mmol/mol, Germany: 63 mmol/mol, and Sweden: 61 mmol/mol [8.0%, 7.9%, and 7.7%, respectively]; P amp;lt; .001). The frequency of severe hypoglycemia was higher in Sweden while it was lower for ketoacidosis (3.3% and 1.1%, respectively) than in Austria (1.1% and 5.3%) and Germany (2.0% and 4.4%) (P amp;lt; .001). Girls in all 3 countries had higher HbA1c and BMI-SDS than boys. Conclusions: Sharing data between diabetes registries and nations enables us to better understand differences in diabetes outcome between countries. In this particular comparison, pediatric patients with diabetes in Sweden were more often treated with insulin pump, had lower HbA1c levels and a higher rate of severe hypoglycemia. Patients in Austria and Germany used rapid acting insulin analogs more often and had a lower rate of ketoacidosis.

  • 13.
    Hanberger, Lena
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics .
    Samuelsson, Ulf
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Lindblad, Bengt
    Univ Gothenburg, Sahlgrenska Acad, Gothenburg, Sweden.
    Ludvigsson, Johnny
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS2008In: Diabetes Care, ISSN 0149-5992, E-ISSN 1935-5548, Vol. 31, no 5, p. 927-929Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE - We explored the relationship between AlC and insulin regimen, duration of diabetes, age, sex, and BMI as well as the differences between clinical mean AlC levels at pediatric diabetes clinics in Sweden. RESEARCH DESIGN AND METHODS - Data from 18,651 clinical outpatient visits (1,033 girls and 1,147 boys) at 20 pediatric clinics during 2001 and 2002 registered in the Swedish Childhood Diabetes Registry SWEDIABKIDS, a national quality registry, were analyzed. RESULTS - AlC was < 7.0% (target value similar to 8% per Diabetes Control and Complications Trial/National Glycohemoglobin Standardization Program standards) at 35% of the visits. Girls had significantly higher mean AlC than boys during adolescence. High mean AlC was correlated with high mean insulin dose, long duration of diabetes, and older age. Mean AlC varied between clinics (6.8-8.2%). Differences between centers could not be explained by differences in diabetes duration, age, BMI, or insulin dose. CONCLUSIONS - Adolescents with a high insulin dose and a long duration of diabetes, especially girls, need to be focused on, Differences in mean values between centers remained inexplicable and require further investigation.

  • 14.
    Nordfeldt, Sam
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry. Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Hanberger, Lena
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Patient and parent views on a Web 2.0 diabetes portal - the management tool, the generator and the gatekeeper: Qualitative study2010In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 12, no 2, p. 1-12Article in journal (Refereed)
    Abstract [en]

    Background: The Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of type 1 diabetes requires that patients have access to continuous support and learning opportunities. Although Web 2.0 resources can provide this support, few pediatric clinics offer it as part of routine diabetes care.Objective: We aimed to explore patients’ and parents’ attitudes toward a local Web 2.0 portal tailored to young patients with type 1 diabetes and their parents, with social networking tools such as message boards and blogs, locally produced self-care and treatment information, and interactive pedagogic devices. Opportunities and obstacles to the implementation of Web 2.0 applications in clinical practice were sought.Methods: Participants were 16 mothers, 3 fathers, and 5 young patients (ages 11-18 years; median 14 years) who each wrote an essay on their experience using the portal, irrespective of frequency and/or their success in using it. Two main guiding questions were asked. A qualitative content analysis was conducted of the essays as a whole.Results: Three main categories of portal users’ attitudes were found; we named them “the management tool,” “the generator,” and “the gatekeeper.” One category was related to the management tool functionality of the portal, and a wide range of concrete examples was found regarding useful facts and updates. Being enabled to search when necessary and find reliable information provided by local clinicians was regarded as a great advantage, facilitating a feeling of security and being in control. Finding answers to difficult-to-ask questions, questions portal users did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature. A second category was related to the generator function in that visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were found to have great value for enhancing mediation of third party peer-to-peer information. A certain level of active users from peer families and visible signs of their activity were considered necessary to attract returning users. A third category was related to the gatekeeper function of the password requirement, which created various access problems. This and other unsuccessful experiences caused users to drop the portal. A largely open portal was suggested to enhance use by those associated with the child with diabetes, such as school personnel, relatives, friends and others, and also by young users somewhat unwilling to self-identify with the disease.Conclusions: Web 2.0 services have great potential for supporting parents and patients with type 1 diabetes by enhancing their information retrieval and disease management. Well-developed services, such as this one, may generate continued use and should, therefore, be carefully maintained and updated by health care professionals who are alert and active on the site with new information and updates. Login procedures should be simple and minimized as much as possible. The education of clinical practitioners regarding the use of Web 2.0 resources needs more attention.

  • 15.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment.
    Hanberger, Lena
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Malm, Fredrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Ludvigsson, Johnny
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Development of a PC-based diabetes simulator in collaboration with teenagers with Type 1 diabetes2007In: Diabetes Technology & Therapeutics, ISSN 1520-9156, E-ISSN 1557-8593, Vol. 9, no 1, p. 17-25Article in journal (Refereed)
    Abstract [en]

    Background: The main aim of this study was to develop and test in a pilot study a PC-based interactive diabetes simulator prototype as a part of future Internet-based support systems for young teenagers and their families. A second aim was to gain experience in user-centered design (UCD) methods applied to such subjects. Methods: Using UCD methods, a computer scientist participated in iterative user group sessions involving teenagers with Type 1 diabetes 13-17 years old and parents. Input was transformed into a requirements specification by the computer scientist and advisors. This was followed by gradual prototype development based on a previously developed mathematical core. Individual test sessions were followed by a pilot study with five subjects testing a prototype. The process was evaluated by registration of flow and content of input and opinions from expert advisors. Results: It was initially difficult to motivate teenagers to participate. User group discussion topics ranged from concrete to more academic matters. The issue of a simulator created active discussions among parents and teenagers. A large amount of input was generated from discussions among the teenagers. Individual test runs generated useful input. A pilot study suggested that the gradually elaborated software was functional. Conclusions: A PC-based diabetes simulator may create substantial interest among teenagers and parents, and the prototype seems worthy of further development and studies. UCD methods may generate significant input for computer support system design work and contribute to a functional design. Teenager involvement in design work may require time, patience, and flexibility. © Mary Ann Liebert, Inc.

  • 16.
    Nordqvist, Cecilia
    et al.
    Linköping University, Department of Medicine and Health Sciences, Division of Preventive and Social Medicine and Public Health Science. Linköping University, Faculty of Health Sciences.
    Hanberger, Lena
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences.
    Timpka, Toomas
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Nordfeldt, Sam
    Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry. Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment and Health Economics.
    Health professionals' attitudes towards using a Web 2.0 portal for child and adolescent diabetes care: qualitative study.2009In: Journal of medical Internet research, ISSN 1438-8871, Vol. 11, no 2, p. e12-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Internet, created and maintained in part by third-party apomediation, has become a dynamic resource for living with a chronic disease. Modern management of type 1 diabetes requires continuous support and problem-based learning, but few pediatric clinics offer Web 2.0 resources to patients as part of routine diabetes care. OBJECTIVES: To explore pediatric practitioners' attitudes towards the introduction of a local Web portal for providing young type 1 diabetes patients with interactive pedagogic devices, social networking tools, and locally produced self-care and treatment information. Opportunities and barriers related to the introduction of such systems into clinical practice were sought. METHODS: Twenty clinicians (seven doctors, nine nurses, two dieticians, and two social welfare officers) from two pediatric diabetes teams participated in the user-centered design of a local Web 2.0 portal. After completion of the design, individual semi-structured interviews were performed and data were analyzed using phenomenological methods. RESULTS: The practitioners reported a range of positive attitudes towards the introduction of a local Web 2.0 portal to their clinical practice. Most interviewees were satisfied with how the portal turned out, and a sense of community emerged during the design process and development of the portal's contents. A complementary role was suggested for the portal within the context of health practice culture, where patients and their parents would be able to learn about the disease before, between, and after scheduled contacts with their health care team. Although some professionals expected that email communication with patients and online patient information would save time during routine care, others emphasized the importance of also maintaining face-to-face communication. Online peer-to-peer communication was regarded as a valuable function; however, most clinicians did not expect that the portal would be used extensively for social networking amongst their patients. There were no major differences in attitudes between different professions or clinics, but some differences appeared in relation to work tasks. CONCLUSIONS: Experienced clinical practitioners working in diabetes teams exhibited positive attitudes towards a Web 2.0 portal tailored for young patients with type 1 diabetes and their parents. The portal included provision of third-party information, as well as practical and social means of support. The practitioners' early and active participation provides a possible explanation for these positive attitudes. The findings encourage close collaboration with all user groups when implementing Web 2.0 systems for the care of young patients with chronic diseases, particularly type 1 diabetes. The study also highlights the need for efforts to educate clinical practitioners in the use of Web publishing, social networking, and other Web 2.0 resources. Investigations of attitudes towards implementing similar systems in the care of adults with chronic diseases are warranted.

  • 17.
    Peterson, Anette
    et al.
    Jonköping University, Sweden Jonköping County Council, Sweden .
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Akesson, Karin
    County Hospital Ryhov, Sweden Jonköping University, Sweden Jonköping County Council, Sweden .
    Bojestig, Mats
    Jonköping University, Sweden Jonköping County Council, Sweden .
    Andersson Gare, Boel
    Jonköping University, Sweden Jonköping County Council, Sweden .
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Improved Results in Paediatric Diabetes Care Using a Quality Registry in an Improvement Collaborative: A Case Study in Sweden2014In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 9, no 5, p. e0097875-Article in journal (Refereed)
    Abstract [en]

    Background: Several studies show that good metabolic control is important for children and adolescents with type 1 diabetes. In Sweden, there are large differences in mean haemoglobin A1c (HbA1c) in different hospitals and difficulties implementing national guidelines in everyday practice. This study shows how the participation in an improvement collaborative could facilitate improvements in the quality of care by paediatric diabetes teams. The Swedish paediatric diabetes quality registry, SWEDIABKIDS was used as a tool and resource for feedback and outcome measures. Methods: Twelve teams at paediatric diabetes centres, caring for 30% (2302/7660) of patients in Sweden, participated in an 18-month quality improvement program. Each team defined treatment targets, areas needing improvement, and action plans. The main outcome was the centre patients mean HbA1c levels, but other clinical variables and change concepts were also studied. Data from the previous six months were compared with the first six months after starting the program, and the long-term follow up after another eleven months. Results: All centres reduced mean HbA1c during the second and third periods compared with the first. The mean reduction for all was 3.7 mmol/mol (pless than0.001), compared with non-participating centres who improved their mean HbA1c with 1.7 mmol/mol during the same period. Many of the participating centres reduced the frequency of severe hypoglycaemia and/or ketoacidosis, and five centres reached their goal of ensuring that all patients had some sort of physical activity at least once weekly. Change concepts were, for example, improved guidelines, appointment planning, informing the patients, improving teamwork and active use of the registry, and health promotion activities. Conclusions: By involving paediatric diabetes teams in a quality improvement collaborative together with access to a quality register, the quality of paediatric diabetes care can improve, thereby contributing to a reduced risk of late complications for children and adolescents with diabetes.

  • 18.
    Petersson, Christina
    et al.
    Jonköping University, Sweden.
    Huus, Karina
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences.
    Samuelsson, Ulf
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping. Linköping University, Faculty of Medicine and Health Sciences.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Akesson, Karin
    Ryhov Hospital Jonköping, Sweden.
    Use of the national quality registry to monitor health-related quality of life of children with type I diabetes: A pilot study2015In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 19, no 1, p. 30-42Article in journal (Refereed)
    Abstract [en]

    The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type I diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type I diabetes dependent on gender, age and co-morbidity and to study the consistency between childrens self-reporting and parents proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their childrens HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry.

  • 19.
    Samuelsson, Ulf
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Anderzen, Johan
    Ryhov County Hospital, Sweden.
    Gudbjornsdottir, Soffia
    University of Gothenburg, Sweden.
    Steineck, Isabelle
    Copenhagen University Hospital, Denmark.
    Akesson, Karin
    Ryhov County Hospital, Sweden; Jonköping County Council, Sweden.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Teenage girls with type 1 diabetes have poorer metabolic control than boys and face more complications in early adulthood2016In: Journal of diabetes and its complications, ISSN 1056-8727, E-ISSN 1873-460X, Vol. 30, no 5, p. 917-922Article in journal (Refereed)
    Abstract [en]

    Aims: To compare metabolic control between males and females with type 1 diabetes during adolescence and as young adults, and relate it to microvascular complications. Methods: Data concerning 4000 adolescents with type 1 diabetes registered in the Swedish paediatric diabetes quality registry, and above the age of 18 years in the Swedish National Diabetes Registry was used. Results: When dividing HbA1c values in three groups; amp;lt; 7.4% (57 mmol/mol), 7.4-93% (57-78 mmol/mol) and amp;gt;9.3% (78 mmol/mol), there was a higher proportion of females in the highest group during adolescence. In the group with the highest HbA1c values during adolescence and as adults, 51.7% were females, expected value 46.2%; in the group with low HbA1c values in both registries, 34.2% were females, p amp;lt; 0.001. As adults, more females had retinopathy, p amp;lt; 0.05. Females had higher mean HbAlc values at diagnosis, 112 vs. 10.9% (99 vs. 96 mmol/mol), p amp;lt; 0.03, during adolescence, 8.5 vs. 82% (69 vs. 66 mmol/mol) p amp;lt; 0.01, but not as young adults. Conclusions: Worse glycaemic control was found in adolescent females, and they had a higher frequency of microvascular complications. Improved paediatric diabetes care is of great importance for increasing the likelihood of lower mortality and morbidity later in life. (C) 2016 Elsevier Inc. All rights reserved.

  • 20.
    Samuelsson, Ulf
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
    Åkesson, Karin
    Cty Hosp Ryhov, Sweden; Jonkoping Univ, Sweden.
    Peterson, Anette
    Jonkoping Univ, Sweden; Jonkoping Univ, Sweden.
    Hanas, Ragnar
    Uddevalla Cent Hosp, Sweden; Univ Gothenburg, Sweden.
    Hanberger, Lena
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus.
    Continued improvement of metabolic control in Swedish pediatric diabetes care2018In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 19, no 1, p. 150-157Article in journal (Refereed)
    Abstract [en]

    Background: To prospectively investigate if the grand mean HbA1c and the differences in mean HbA1c between centers in Sweden could be reduced, thereby improving care delivered by pediatric diabetes teams. Methods: We used an 18-month quality improvement collaborative (QIC) together with the Swedish pediatric diabetes quality registry (SWEDIABKIDS). The first program (IQ-1), started in April 2011 and the second (IQ-2) in April 2012; together they encompassed 70% of Swedish children and adolescents with diabetes. Results: The proportion of patients in IQ-1 with a mean HbA1c amp;lt;7.4% (57 mmol/mol) increased from 26.4% before start to 35.9% at 36 months (P amp;lt; .001), and from 30.2% to 37.2% (P amp;lt; .001) for IQ-2. Mean HbA1c decreased in both participating and non-participating (NP) centers in Sweden, thereby indicating an improvement by a spatial spill over effect in NP centers. The grand mean HbA1c decreased by 0.45% (4.9 mmol/mol) during 36 months; at the end of 2014 it was 7.43% (57.7 mmol/mol) (P amp;lt; .001). A linear regression model with the difference in HbA1c before start and second follow-up as dependent variable showed that QIC participation significantly decreased mean HbA1c both for IQ-1 and IQ-2. The proportion of patients with high HbA1c values (amp;gt;8.7%, 72 mmol/mol) decreased significantly in both QICs, while it increased in the NP group. Conclusions: The grand mean HbA1c has decreased significantly in Sweden from 2010 to 2014, and QICs have contributed significantly to this decrease. There seems to be a spatial spill-over effect in NP centers.

  • 21.
    Timpka, Toomas
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
    Eriksson, Henrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Ludvigsson, Johnny
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Ekberg, Joakim
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Division of Preventive and Social Medicine and Public Health Science.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics .
    Hanberger, Lena
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics .
    Web 2.0 systems supporting childhood chronic disease management: A pattern language representation of a general architecture2008In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 8Article in journal (Refereed)
    Abstract [en]

    Background. Chronic disease management is a global health concern. By the time they reach adolescence, 10-15% of all children live with a chronic disease. The role of educational interventions in facilitating adaptation to chronic disease is receiving growing recognition, and current care policies advocate greater involvement of patients in self-care. Web 2.0 is an umbrella term for new collaborative Internet services characterized by user participation in developing and managing content. Key elements include Really Simple Syndication (RSS) to rapidly disseminate awareness of new information, weblogs (blogs) to describe new trends, wikis to share knowledge, and podcasts to make information available on personal media players. This study addresses the potential to develop Web 2.0 services for young persons with a chronic disease. It is acknowledged that the management of childhood chronic disease is based on interplay between initiatives and resources on the part of patients, relatives, and health care professionals, and where the balance shifts over time to the patients and their families. Methods. Participatory action research was used to stepwise define a design specification in the form of a pattern language. Support for children diagnosed with diabetes Type 1 was used as the example area. Each individual design pattern was determined graphically using card sorting methods, and textually in the form Title, Context, Problem, Solution, Examples and References. Application references were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions. Results. The design patterns are divided into functional and non-functional design elements, and formulated at the levels of organizational, system, and application design. The design elements specify access to materials for development of the competences needed for chronic disease management in specific community settings, endorsement of self-learning through online peer-to-peer communication, and systematic accreditation and evaluation of materials and processes. Conclusion. The use of design patterns allows representing the core design elements of a Web 2.0 system upon which an 'ecological' development of content respecting these constraints can be built. Future research should include evaluations of Web 2.0 systems implemented according to the architecture in practice settings.

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