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  • 1.
    Bernfort, Lars
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry.
    AD/HD i ett samhällsekonomiskt perspektiv2005Report (Other academic)
  • 2.
    Bernfort, Lars
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment.
    The Socioeconomic burden of AD/HD2004In: Health Technology Assessment International HTAi,2004, 2004Conference paper (Refereed)
  • 3.
    Bernfort, Lars
    et al.
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry. Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics.
    Persson, Jan
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    ADHD from a socio-economic perspective2008In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 97, no 2, p. 239-245Article, review/survey (Refereed)
    Abstract [en]

    Aim: Attention deficit hyperactivity disorder (ADHD) and related disorders affect children's ability to function in school and other environments. Awareness has increased in recent years that the same problems often persist in adulthood. Based on previous studies, we aimed to outline and discuss a descriptive model for calculation of the societal costs associated with ADHD and related disorders. Methods: Following a literature review including childhood and adult studies, long-term outcomes of ADHD and associated societal costs were outlined in a simple model. Results: The literature concerning long-term consequences of ADHD and related disorders is scarce. There is some evidence regarding educational level, psychosocial problems, substance abuse, psychiatric problems and risky behaviour. The problems are likely to affect employment status, healthcare consumption, traffic and other accidents and criminality. A proposed model structure includes persisting problems in adulthood, possible undesirable outcomes (and their probabilities) and (lifetime) costs associated with these outcomes. Conclusions: Existing literature supports the conclusion that ADHD and related disorders are associated with a considerable societal burden. To estimate that burden with any accuracy, more detailed long-term data are needed. © 2007 The Author(s).

  • 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.
    Graspemo, Gabriella
    et al.
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Hassling, Linda
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Eriksson, Henrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Timpka, Toomas
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
    Design of interactive health drama built on social realism.2004In: MedInfo, IOS Publishing , 2004, Vol. 11, no Pt 2, p. 879-883Conference paper (Refereed)
    Abstract [en]

    There are many psychosocial aspects of chronic diseases, such as diabetes. Educational multimedia can support patients with chronic diseases and their families by communicating narratives based on social realism. The production of such socio-realistic interactive health dramas requires systematic methods, especially for the identification of significant stories. The aim of this study is to explore the use of self-documentary video in the design of an Interactive Health Drama environment to support diabetic adolescents and their families. In particular, the potential of the self-documentary video for story development in combination with qualitative interviews were explored. The proposed approach, when further developed, is intended to enable all types of chronic disease patients to work with their specific psychosocial problems in a supportive and stimulating environment adapted to their personality and preferences.

  • 6.
    Graspemo, Gabriella
    et al.
    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.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry.
    Informationstekniken ger chans till genuint patientbemyndigande. Nästa generation patienter med typ 1-diabetes surfar sig fram till egenmakt.2005In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 102, no 34, p. 2316-2318Article in journal (Other academic)
  • 7.
    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.

  • 8.
    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.

  • 9.
    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.

  • 10.
    Hassling, Linda
    et al.
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Graspemo, Gabriella
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Eriksson, Henrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Timpka, Toomas
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
    Health education technology: Experiences from the use of the cultural probe method2004In: Medinfo 2004,2004, Bethesda, MD: American Medical Informatics Association , 2004Conference paper (Refereed)
  • 11.
    Hassling, Linda
    et al.
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Eriksson, Henrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Timpka, Toomas
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
    Use of cultural probes for representation of chronic disease experience: Exploration of an innovative method for design of supportive technologies2005In: Technology and Health Care, ISSN 0928-7329, Vol. 13, no 2, p. 87-95Article in journal (Refereed)
    Abstract [en]

    Chronic diseases do not only manifest themselves as sets of pathophysiological factors. They bring about an equally important psychosocial impact. Unfortunately, it is difficult to account for this impact in the development of supportive technologies. This study describes and explores a method for elicitation of requirements on technologies supporting self-management including emotional aspects. The method takes advantage of a self-documentary media kit for collection of data from the everyday context of chronic disease. The resulting contextual data can contribute new insights to multi-disciplinary teams in the design of supporting technologies.

  • 12.
    Hedbrant, Johan
    et al.
    Linköping University, Department of Management and Engineering, Applied Thermodynamics and Fluid Mechanics. Linköping University, The Institute of Technology.
    Nordfeldt, Sam
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Ludvigsson, Johnny
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology 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, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    The Särimner Diabetes Simulator - A Look in the Rear View Mirror2007In: Diabetes Technology & Therapeutics, ISSN 1520-9156, E-ISSN 1557-8593, Vol. 9, no 1, p. 10-16Article in journal (Refereed)
    Abstract [en]

      

  • 13.
    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.
    On Severe Hypoglycaemia in Children and Adolescents with Type 1 Diabetes2000Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background: For people with type 1 diabetes, there is no alternative to treatment with insulin. The major side effect of insulin is severe hypoglycaemia (SH), when the patient needs help or even becomes unconscious.

    Material: We have studied a geographic population of yearly 130-140 unselected type 1 diabetes patients aged 1-18 years during 1992-1999. They were intensively treated with 87-96% on 4-7 daily insulin doses, combined with active self-control, psychosocial support and problem-based education from onset. Average HbA1c was 6.5 with Mono-S standard (1.15% beow DCCT level).

    Methods: We evaluated use of a prospective patient questionnaire for continuous long-term registration of treatment and outcome data and analysed HbA1c, SH and other variables. Over years, 95-100% response rate was achieved. We used also temporary questionnaries.

    Results: We found SH with unconsciousness reported from on average 11% of patients yearly, SH without unconsciousness but needing assistance from on average 36% yearly and weak associations to HbA1c, such as reletive risk of SH 1.24 for yearly mean HbA1c <7.0% compared to ≥7.0% There was a seasonal variation in HbA1c (p=0.023) and incidence of SH. The strongest predictor for SH was SH during the previous year (r=9.38, p<0.0001).

    The impact from SH showed great variation, and 20-30% of events led to practical disturbancies for parents and/or other people. Hospital visits took place only at 5% and hospitalisations at 3% of events. Social activities for patients were cancelled after 10% of events. Increased worry for patients was reported after 8% of events, bad sleep after 7%. We estimated the average socio-economic cost for SH at EURO 239 per event of SH with unconsciousness, and EURO 63 per event of SH without unconsciousness but needing assistance.

    Mass-distributed self-study material (brochures and videos) aimed at the prevention of SH without compromising metabolic control reached high dissemination and was widely appreciated by patients. The material copy cost was only EURO 7 per patient. It also seems to have contributed to a decrease in SH with unconsciousness from yearly 13% of patients before to 9% after intervention (3-years average), but controlled studies are needed.

    Conclusions: We conclude that SH remains a very serious problem of multifactorial aethiology. It causes considerable discomfort and costs. Systematic patient education mgiht reduce the incidence. Interventions using mass-distribution of high quality self-study material such as videos and brochures seem to have a potential to be cost-effective. There is a great patient/consumer interest in high quality- and advanced information/education materials.

    List of papers
    1. Increasing response rate in data registration and follow-up of type 1 diabetes children and adolescents: A prospective population study 1992–97
    Open this publication in new window or tab >>Increasing response rate in data registration and follow-up of type 1 diabetes children and adolescents: A prospective population study 1992–97
    1999 (English)In: Practical Diabetes International, ISSN 1357-8170, Vol. 16, no 4, p. 101-106Article in journal (Refereed) Published
    Abstract [en]

    Aims: This study considers how a local diabetes team can develop a system for patient data registration and follow-up to enhance quality control and health economic analysis, and how a high response rate for patient data can be achieved.

    Patients and methods: A geographic population of yearly 120-130 intensively treated type 1 diabetes children. <19 years of age was studied. A prospective patient questionnaire monitored: blood glucose and urine testing, insulin doses, acute complications, medications for hypertension and epilepsy, tobacco and snuff use, and any open questions and needs of the patient. This was completed before every visit to the out-patient department and used as a database for consultation. Data were thereafter registered in regular computer software, and analysed on a yearly basis.

    Results: Response rate increased with time to near 100%. There was a time gain for diabetes nurse and physician. Many patients found the questionnaire good for overviewing treatment and easy to complete, whereas some found it was irksome and boring. The total cost of the method was <160 SEK/patient year.

    Conclusions: A very high patient data response rate can be achieved over years by a patientsupportive questionnaire integrated in the treatment program. Treatment and outcome analysis can then be performed locally at low costs. The combination of a patient questionnaire with regular hard- and software is easy to create, manage and develop. Benefits for diabetes team and patients exceed the total cost.

    Keywords
    adolescent, child, data registration, information system, evaluation, questionnaire, health economy, quality of life, diabetes mellitus
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13554 (URN)10.1002/pdi.1960160406 (DOI)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
    2. Severe hypoglycemia in children with IDDM: A prospective population study, 1992-1994
    Open this publication in new window or tab >>Severe hypoglycemia in children with IDDM: A prospective population study, 1992-1994
    1997 (English)In: Diabetes Care, ISSN 0149-5992, Vol. 20, no 4, p. 497-503Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVE: Is an increased incidence of severe hypoglycemia an unavoidable effect of improved metabolic control? And, if so, to what extent? RESEARCH DESIGN AND METHODS: In 1992-1994, severe hypoglycemia was prospectively registered in our intensively treated IDDM population, 146 children 1-18 years of age with > 90% of the patients on > or = 4 insulin injections per day. The two categories, "severe hypoglycemia with unconsciousness" (U hypoglycemia) and "severe hypoglycemia without unconsciousness but needing the assistance of another person" (NU hypoglycemia), were analyzed in relation to yearly mean HbAlc levels, insulin doses and proportion of short-acting insulin, age at onset, duration of diabetes, age, sex, and weight-to-height ratio. RESULTS: Yearly mean HbAlc levels improved from 8.1 +/- 1.6% in 1992 to 6.9 +/- 1.3% in 1994. The yearly incidence of U hypoglycemia was 0.15-0.19 events per patient-year, seen in 10-16% of patients, showing no significant increase from 1992-1994. For NU hypoglycemia, slightly increasing figures from 1.01 to 1.26 events per patient-year, seen in 27-38% of patients yearly, were reported. There was no significant correlation between severe (U or NU) hypoglycemia and HbAlc, but still an association was seen in certain calculations. In multiple regression analysis, U hypoglycemia was not related to any factor, but the square root of the rate of NU hypoglycemia was related to lower HbAlc levels (P = 0.0003), higher insulin doses (IU.kg-1.24 h-1) (P = 0.0024), and a lower proportion of short-acting insulin out of the total daily insulin dose (P = 0.031). CONCLUSIONS: Multiple-dose insulin therapy with rather low yearly mean HbAlc values causes a slight increase of NU hypoglycemia but no increase of U hypoglycemia in our population of children with IDDM. Near physiological HbAlc levels may be achieved without any pronounced risk of increasing the incidence of severe hypoglycemia when multiple-injection insulin therapy is combined with adequate self-control based on psychosocial support and active education.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13555 (URN)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
    3. Adverse events in intensively treated children and adolescents with type 1 diabetes
    Open this publication in new window or tab >>Adverse events in intensively treated children and adolescents with type 1 diabetes
    1999 (English)In: Acta Paediatrica, ISSN 0001-656X, Vol. 88, no 11, p. 1184-1193Article in journal (Refereed) Published
    Abstract [en]

    The main objective of this study was to examine the relation between adverse events and degree of metabolic control and multiple-dose treatment. A total of 139 children, aged between 1 and 18 y, prospectively registered severe hypoglycaemia with or without unconsciousness, as well as hospitalized ketoacidosis, during 1994-95. Treatment from onset was multiple-dose insulin (> 95% > or = 4 doses) combined with intense training and psychosocial support. Median HbA1c was 6.9% (ref. 3.6-5.4%). The incidence of severe hypoglycaemia with unconsciousness was 0.17 events per patient-year, having decreased from the 1970s to the 1990s, parallel to a change from 1-2 to > or = 4 doses per day. There was no correlation or association to the year mean HbA1c for severe hypoglycaemia. Severe hypoglycaemic episodes in 1995 correlated to severe hypoglycaemic episodes in 1994 (r=0.38; p<0.0001). Severe hypoglycaemia with unconsciousness increased during the spring season, and according to case records the assumed causes were mainly mistakes with insulin, food and exercise. Ketoacidosis was rare: 0.015 episodes per patient-year. We conclude that multiple-dose insulin therapy from the very onset of diabetes, combined with adequate self-control, active problem-based training and psycho-social support, may limit severe hypoglycaemia and ketoacidosis. Strategies aimed at minimizing severe hypoglycaemia without compromising metabolic control need to be evaluated.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13556 (URN)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
    4. Seasonal variation of HbA1c in intensive treatment of children with type 1 diabetes
    Open this publication in new window or tab >>Seasonal variation of HbA1c in intensive treatment of children with type 1 diabetes
    2000 (English)In: Journal of pediatric endocrinology and metabolism, ISSN 0334-018X, Vol. 13, no 5, p. 529-535Article in journal (Refereed) Published
    Abstract [en]

    OBJECTIVE: The aim of this study was to measure whether there is a seasonal variation in glycosylated haemoglobin concentrations and insulin dose used in the intensive treatment of children with type 1 diabetes, and whether such variation is related to severe hypoglycaemia.

    PATIENTS: A geographic population of 114 intensively treated type 1 diabetic patients < 19 years of age, mean 12.7 (SD 4.3) years, with diabetes onset before 1995, were studied in a cohort 1995-96.

    METHODS: HbA1c, insulin doses and severe hypoglycaemia were registered at regular visits scheduled quarterly, but not standardised in time. Seasonal mean values were calculated for HbA1c and insulin dose.

    RESULTS: Lower HbA1c was seen in spring and summer, and higher in autumn and winter (p=0.023). Patients reporting severe hypoglycaemia had a seasonal variation in HbA1c (p=0.019) and a tendency to seasonal variation in insulin dose, while patients not reporting severe hypoglycaemia did not vary in HbA1c or insulin dose.

    CONCLUSIONS: Self-control and adjustment of insulin doses to seasonal change need to be improved also in intensively treated children, with regard to the risk for worsened metabolic control after the summer and increased severe hypoglycaemia in spring and early summer. The findings have important implications for design of short-term studies of metabolic control.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13557 (URN)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
    5. Short-term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. A cost-of-illness study
    Open this publication in new window or tab >>Short-term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. A cost-of-illness study
    2001 (English)In: Acta Paediatrica, ISSN 0001-656X, Vol. 90, no 2, p. 137-142Article in journal (Refereed) Published
    Abstract [en]

    The aim of this study was to describe costs and other short-term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. The study comprised a geographic population of 129 patients <19 y of age with families prospectively registering detailed data after self-reported severe hypoglycaemia. In the period Jan.-Dec. 1998, 16 events were reported with unconsciousness and 95 events without unconsciousness but needing the assistance of another person. Of all events, 20-30% had effects requiring the assistance of people other than parents, school absence, parents' absence from work, extra transport and/or telephone calls. Patient (family) activities were cancelled after 10% (5%) of events. Increased worry for parents was reported after 8% and poor sleep after 7% of events. Hospital visits took place at 5% and hospitalizations at 3% of all events. Patients with severe hypoglycaemia indicated lower global quality of life (p=0.0114). The average socio-economic burden for events of severe hypoglycaemia was estimated at EURO 17,400 yearly per 100 type 1 diabetes patients. Average cost was estimated at EURO 239 per event of severe hypoglycaemia with unconsciousness or EURO 478 yearly per patient with unconsciousness, and EURO 63 per event of severe hypoglycaemia without unconsciousness but needing assistance from another person or EURO 307 yearly per patient in this category. These are conservative estimates and do not include unpaid time and other intangibles, possible road traffic accidents, disabling or premature deaths. Conclusions: The results suggest the potential for socio-economic savings and increased quality of life for patients and families from severe hypoglycaemia prevention programs.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13558 (URN)10.1080/080352501300049244 (DOI)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
    6. Self-study material to prevent severe hypoglycaemia in children and adolescents with type 1 diabetes: A prospective intervention study
    Open this publication in new window or tab >>Self-study material to prevent severe hypoglycaemia in children and adolescents with type 1 diabetes: A prospective intervention study
    2002 (English)In: Practical Diabetes International, ISSN 1357-8170, Vol. 19, no 5, p. 131-136Article in journal (Refereed) Published
    Abstract [en]

    The aim of this study was to evaluate use of self-study material in diabetes education aimed at prevention of severe hypoglycaemia. Targeted self-study brochures (and video programs) regarding diabetes self-care and prevention of severe hypoglycaemia were mailed to all patients in early 1997 (and in 1999): a geographic population of 122-139 intensively treated type 1 diabetes patients yearly, aged 1-18 years (mean 12.2, SD 4.3), between 1994 and 1999. Yearly mean HbA1c (1.15% below DCCT level) ranged from 4.1 to 11.6% (mean 6.6, SD 1.1), age at onset 0.5-17.4 years (mean 7.6, SD 4.0) and duration 0.1-16.6 years (mean 4.6, SD 3.7). Main outcomes were patient attitudes to the interventions, perceived benefit, level of use, severe hypoglycaemia, and HbA1c.

    Eighty-six percent of responders stated that the video was valuable. Perceived benefit was higher for the hypoglycaemia prevention video than for the brochure (p = 0.016). Those with severe hypoglycaemia the preceding year indicated greater benefit from the hypoglycaemia prevention brochure than others (p = 0.039). Average yearly incidence of severe hypoglycaemia with unconsciousness decreased from 13% in 1994-1996 to 9% (ns) in 1997-1999. The per patient cost of the material was <Euro 10.

    Conclusion. Self-study material can reach high dissemination at a low cost. It also seems to have contributed to a decrease in severe hypoglycaemia, but controlled studies are needed. There is a great need for good quality patient/consumer information materials dealing with aspects of general management and risk prevention in diabetes treatment.

    Keywords
    children and adolescents, education, pedagogical device, prevention, severe hypoglycaemia, type 1 diabetes
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13559 (URN)10.1002/pdi.363 (DOI)
    Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
  • 14.
    Nordfeldt, Sam
    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, Barn.
    Årstidsvariationer bör uppmärksammas2001In: Laboratoriet, ISSN 0345-696X, Vol. 1, p. 16-16Article in journal (Other (popular science, discussion, etc.))
  • 15.
    Nordfeldt, Sam
    et al.
    Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment. Linköping University, Faculty of Health Sciences.
    Bernfort, Lars
    Linköping University, Department of Department of Health and Society, Center for Medical Technology Assessment. Linköping University, Faculty of Health Sciences.
    Arvidsson, Elisabeth
    Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Sjukvårdens och skolans insatser för barn med AD/HD - föräldrars erfarenheter.: En intervjustudie2006Report (Other academic)
    Abstract [en]

    Since 1996-97, the Municipality of Linköping has been using a structured model for investigation and intervention in children with learning difficulties. In this model   pedagogical,   psychological,   and   child-   and   adolescent   psychiatric competences are linked to the child in the school environment.

    The main purpose of this report has been to illustrate how such interventions from school and healthcare have worked for children with AD/HD and related disorders. A second purpose has been to increase knowledge on the situation of the  families  in  the  fields  of  work,  family  life  and  social  life.  Data  from interviews with 14 parents are summarised.

    It appears  from the literature  that AD/HD  in a societal  perspective  has been sparsely  studied.  Life  with  an AD/HD  child  has been  described  by some  as chaotic,  filled  with  conflicts  and  exhausting.  Variations  between  countries, ethnical groups and between the sexes (boys are investigated more often than girls) are seen in help-seeking, aetiological explanations, other peoples’ attitudes and in intervention patterns. We have found only few scientific studies on how interventions were perceived by relatives.

    In this study, time elapsed from onset of symptoms  until investigations  were undertaken was as long as 4-8 years in 9 out of 14 cases. Otherwise, a general impression is that in most cases diagnosing was helpful and that interventions facilitated   schooling,   maturation   and  development.   Today,   13  of  the  14 adolescents  are in upper secondary school. Most parents experience  that their child  performs  well.  Their  thoughts  on  how  the  situation  would  have  been without early interventions are quite pessimistic.

    Most parents describe various impacts from their AD/HD child on their working hours, economy, family life and social life. In many cases both the family and a third person were extra involved in the supervision and care of the child.

    This  study  shows  the  need  for  schools  and  healthcare  providers  to establish competence and efficient working methods for early diagnostics and treatment of  children  with  AD/HD  and  related  disorders.  Long  and  time-consuming admittance  procedures  should  be  avoided  when  efficient  interventions  and treatments  are  available.  The  model  in  the  Municipality  of  Linköping  is  a positive example that should be disseminated and further developed.

  • 16.
    Nordfeldt, Sam
    et al.
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment. Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry in Linköping.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Young Patients' Views on the Open Web 2.0 Childhood Diabetes Patient Portal: A Qualitative Study2012In: Future Internet, ISSN 1999-5903, E-ISSN 1999-5903, Vol. 4, no 2, p. 514-527Article in journal (Refereed)
    Abstract [en]

    Little is known about the views of young patients themselves on interactive Web portal services provided by pediatric practitioners. We aimed to explore their perceptions of a real-world diabetes portal that offers facts and contact with peers and practitioners; e.g., discussion forums, blog tools, self-care and treatment information, research updates and news from local practitioners. Twelve young patients (ages 12–21, median 15 years), one boyfriend, 7 mothers and one father each wrote an essay on their experience from use of the portal. Their essays underwent qualitative content analysis. A major theme was “Helping and facilitating daily life with diabetes”, the portal was perceived as a place where contents are interesting, inspiring and may trigger users’ curiosity. There were three subthemes; “Ease of use in my everyday life,” which includes the perception that the portal was perceived as smooth and easy to enter and navigate whenever needed; that information was easy to understand for different groups of users. “Support via an exchange of experience,” includes the ability to contact peers being regarded advantageous. Some said that just reading others’ experiences can be helpful in terms of persevering; children could find peers in the same age group. “Evidence based information,” includes the perception of the portal being a useful and trustworthy source of facts on e.g., physical activity, blood glucose, medical devices, emotional wellbeing, food and nutrition, and other aspects that impact living with diabetes. Young users expressed positive perceptions towards the interactive web portal. Such services seem to have great potential for supporting young patients and significant others - intergrading for confidence.

  • 17.
    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.

  • 18.
    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.

  • 19.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry. Östergötlands Läns Landsting, CPS - Centrum för psykiatri och samhällsmedicin, BUP - Barn- och ungdomspsykiatri.
    Johansson, C
    Carlsson, E
    Hammersjö, J-Å
    Prevention of severe hypoglycaemia in type I diabetes: A randomised controlled population study2003In: Archives of Disease in Childhood, ISSN 0003-9888, E-ISSN 1468-2044, Vol. 88, no 3, p. 240-245Article in journal (Refereed)
    Abstract [en]

    Aims: To investigate use of targeted self study material in type I diabetes patient education regarding dissemination, perceived patient benefit, and prevention of severe hypoglycaemia. Methods: In a randomised 1:1:1 controlled study, 332 patients with type I diabetes (aged 2.6-18.9 years) were studied, 313 completed clinical follow up, 261 completed endpoint questionnaire. The intervention group received videotapes and a brochure designed to review skills for self control and treatment, aimed at preventing severe hypoglycaemia. Two control groups received a videotape and brochure with general diabetes information, or traditional treatment only, respectively. Results: Yearly incidence of severe hypoglycaemia decreased from 42% to 27% in the intervention group, but not in controls. HbA1c remained unchanged. Levels of use ranged from 1 to 20 times (median 2), 40-49% had shown the materials to friends, relatives, school staff, sports coaches, etc (there was little difference between intervention and control groups). Higher benefit and learning levels resulted from the intervention material, especially in patients with severe hypoglycaemia. Conclusions: Mass distributed pedagogical devices such as high quality video programmes and brochures may contribute to the prevention of severe hypoglycaemia. Such self study materials can reach high dissemination levels and constitute a cost effective complement to regular visits to a diabetes team and to other types of education. The findings may have implications for other topics, other ages, and other diagnosis groups.

  • 20.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry.
    Johansson, Calle
    Jönköping .
    Carlsson, Eric
    Kalmar .
    Hammersjö, Jan-Åke
    Västervik .
    Persistent effects of a pedagogical device targeted at prevention of severe hypoglycaemia: A randomized, controlled study2005In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 94, no 10, p. 1395-1401Article in journal (Refereed)
    Abstract [en]

    Aim: To study the long-term use of self-study material in type 1 diabetes patient education targeted at the prevention of severe hypoglycaemia. Methods: Randomized 1:1:1 control study in three local hospitals. We studied 332 type 1 diabetes patients from the geographic population, aged 2.6-18.9 y at entry. The intervention group received a videotape and brochure in which interviewed patients, parents and medical experts reviewed in detail practical skills for self-control and treatment, with the aim of preventing severe hypoglycaemia. There were two control groups: one received a videotape and brochure with general diabetes information and the other only traditional treatment. Primary endpoints were severe hypoglycaemia needing assistance by another person and HbA1c. Dissemination, reading/viewing level, patients' attitudes and extra contact with caregivers were also investigated. At 24 mo, 249 subjects provided data. Results: The yearly incidence of severe hypoglycaemia decreased at 24 mo from 42% to 25% (difference 17%, 95% CI 3-31, p = 0.0241) in the intervention group, but not in controls. HbA1c remained unchanged. Video use during months 13-24 was higher in the intervention group than in controls (p = 0.0477), ranging from 1-15 (median 2) times, among 37% of patients (months 1-12, 100%). Higher future use was anticipated for intervention material (p = 0.0003). Extra caregiver contact was related to severe hypoglycaemia (p = 0.0009). The cost of the material was

  • 21.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry.
    Johansson, Calle
    Carlsson, Eric
    Hammersjö, Jan-Åke
    Use of the Internet to search for information in type 1 diabetes children and adolescents: A cross-sectional study2005In: Technology and Health Care, ISSN 0928-7329, Vol. 13, no 1, p. 67-74Article in journal (Refereed)
    Abstract [en]

    We have studied use of the Internet in search for diabetes-related information in a geographic population of type 1 diabetes children and adolescents. Using a randomised cross-sectional design, 90 out of 110 patients aged 5-20 years responded to a postal questionnaire. Thirty-eight subjects (42%) had searched for diabetes information on the Internet, at a median of 3 occasions, range 1-50. Out of the searching families, 32% had also shown diabetes information from the Internet to others, such as relatives, friends and school staff. Eighty-six percent had found information in Swedish, 32% in English and 68% indicated a need for more information in Swedish. 97% percent anticipated future use. Specific web-sites were suggested by 24%. Searchers as compared to non-searchers had a shorter diabetes duration (p = 0.0255) and more recent extra contacts with their caregivers (p = 0.0018). We conclude that Internet-based information and support may be requested at a high extent by patients, as a complement to regular visits to the diabetes team and other types of traditional care and education. The results suggest a great need for development of systems combining technical and human support, which is discussed. The findings may also have implications for other topics within diabetes education, other ages, and for other diagnosis groups.

  • 22.
    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.
    Jonsson, Dick
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
    Short-term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. A cost-of-illness study2001In: Acta Paediatrica, ISSN 0001-656X, Vol. 90, no 2, p. 137-142Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe costs and other short-term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. The study comprised a geographic population of 129 patients <19 y of age with families prospectively registering detailed data after self-reported severe hypoglycaemia. In the period Jan.-Dec. 1998, 16 events were reported with unconsciousness and 95 events without unconsciousness but needing the assistance of another person. Of all events, 20-30% had effects requiring the assistance of people other than parents, school absence, parents' absence from work, extra transport and/or telephone calls. Patient (family) activities were cancelled after 10% (5%) of events. Increased worry for parents was reported after 8% and poor sleep after 7% of events. Hospital visits took place at 5% and hospitalizations at 3% of all events. Patients with severe hypoglycaemia indicated lower global quality of life (p=0.0114). The average socio-economic burden for events of severe hypoglycaemia was estimated at EURO 17,400 yearly per 100 type 1 diabetes patients. Average cost was estimated at EURO 239 per event of severe hypoglycaemia with unconsciousness or EURO 478 yearly per patient with unconsciousness, and EURO 63 per event of severe hypoglycaemia without unconsciousness but needing assistance from another person or EURO 307 yearly per patient in this category. These are conservative estimates and do not include unpaid time and other intangibles, possible road traffic accidents, disabling or premature deaths. Conclusions: The results suggest the potential for socio-economic savings and increased quality of life for patients and families from severe hypoglycaemia prevention programs.

  • 23.
    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.
    Jonsson, Dick
    Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. 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.
    Increasing response rate in data registration and follow-up of type 1 diabetes children and adolescents: A prospective population study 1992–971999In: Practical Diabetes International, ISSN 1357-8170, Vol. 16, no 4, p. 101-106Article in journal (Refereed)
    Abstract [en]

    Aims: This study considers how a local diabetes team can develop a system for patient data registration and follow-up to enhance quality control and health economic analysis, and how a high response rate for patient data can be achieved.

    Patients and methods: A geographic population of yearly 120-130 intensively treated type 1 diabetes children. <19 years of age was studied. A prospective patient questionnaire monitored: blood glucose and urine testing, insulin doses, acute complications, medications for hypertension and epilepsy, tobacco and snuff use, and any open questions and needs of the patient. This was completed before every visit to the out-patient department and used as a database for consultation. Data were thereafter registered in regular computer software, and analysed on a yearly basis.

    Results: Response rate increased with time to near 100%. There was a time gain for diabetes nurse and physician. Many patients found the questionnaire good for overviewing treatment and easy to complete, whereas some found it was irksome and boring. The total cost of the method was <160 SEK/patient year.

    Conclusions: A very high patient data response rate can be achieved over years by a patientsupportive questionnaire integrated in the treatment program. Treatment and outcome analysis can then be performed locally at low costs. The combination of a patient questionnaire with regular hard- and software is easy to create, manage and develop. Benefits for diabetes team and patients exceed the total cost.

  • 24.
    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.
    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.
    Adverse events in intensively treated children and adolescents with type 1 diabetes1999In: Acta Paediatrica, ISSN 0001-656X, Vol. 88, no 11, p. 1184-1193Article in journal (Refereed)
    Abstract [en]

    The main objective of this study was to examine the relation between adverse events and degree of metabolic control and multiple-dose treatment. A total of 139 children, aged between 1 and 18 y, prospectively registered severe hypoglycaemia with or without unconsciousness, as well as hospitalized ketoacidosis, during 1994-95. Treatment from onset was multiple-dose insulin (> 95% > or = 4 doses) combined with intense training and psychosocial support. Median HbA1c was 6.9% (ref. 3.6-5.4%). The incidence of severe hypoglycaemia with unconsciousness was 0.17 events per patient-year, having decreased from the 1970s to the 1990s, parallel to a change from 1-2 to > or = 4 doses per day. There was no correlation or association to the year mean HbA1c for severe hypoglycaemia. Severe hypoglycaemic episodes in 1995 correlated to severe hypoglycaemic episodes in 1994 (r=0.38; p<0.0001). Severe hypoglycaemia with unconsciousness increased during the spring season, and according to case records the assumed causes were mainly mistakes with insulin, food and exercise. Ketoacidosis was rare: 0.015 episodes per patient-year. We conclude that multiple-dose insulin therapy from the very onset of diabetes, combined with adequate self-control, active problem-based training and psycho-social support, may limit severe hypoglycaemia and ketoacidosis. Strategies aimed at minimizing severe hypoglycaemia without compromising metabolic control need to be evaluated.

  • 25.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry.
    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.
    Fear and other disturbances of severe hypoglycaemia in children and adolescents with type 1 diabetes mellitus2005In: Journal of Pediatric Endocrinology & Metabolism (JPEM), ISSN 0334-018X, E-ISSN 2191-0251, Vol. 18, no 1, p. 83-91Article in journal (Refereed)
    Abstract [en]

    Objective: To study perceived occurrence and magnitude of fear and other disturbances of severe hypoglycaemia in children and adolescents with type 1 diabetes mellitus (DM) receiving intensive treatment with active education and psychosocial support. Patients and Methods: Out of a geographic population of 112 patients <19 years of age and their families, with a DM duration >1 year, HbA1c mean ± SD 6.7 ± 0.9 (method 1.15% below DCCT level), 74 responded to a questionnaire. Visual analogue scales, 5-graded Likert scales and open questions were used. Results: Global quality of life was high, but lower among patients with severe hypoglycaemia within the last year (p = 0.0114). Worse perceived health was correlated to higher HbA1c year mean (r = 0.32, p = 0.0227). Patients and parents regard severe hypoglycaemia more as a problem (p <0.0001) and the risk of it more disturbing than mild hypoglycaemia (p <0.0001), insulin injections (p <0.0001) or blood glucose determinations (p <0.0001). The disturbance is higher during exercise, disco/party and in travel situations. Severe hypoglycaemia with unconsciousness causes more fear than severe hypoglycaemia needing assistance but without unconsciousness (p = 0.0001 or the potential late complications of DM (p = 0.0014). Severe hypoglcaemia needing assistance but without unconsciousness causes more fear than mild hypoglycaemia (p = 0.0001) and diabetic ketoacidosis (p <0.0001) but less than the potential late complications of DM (p = 0.0034). Conclusions: Severe hypoglycaemia frequently causes fear and various disturbances in spite of active education and psychosocial support. There is a potential for increased quality of life from interventions targeted at the prevention of severe hypoglycaemia. Further research and improved strategies for the prevention of severe hypoglycaemia are needed.

  • 26.
    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.
    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.
    Seasonal variation of HbA1c in intensive treatment of children with type 1 diabetes2000In: Journal of pediatric endocrinology and metabolism, ISSN 0334-018X, Vol. 13, no 5, p. 529-535Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to measure whether there is a seasonal variation in glycosylated haemoglobin concentrations and insulin dose used in the intensive treatment of children with type 1 diabetes, and whether such variation is related to severe hypoglycaemia.

    PATIENTS: A geographic population of 114 intensively treated type 1 diabetic patients < 19 years of age, mean 12.7 (SD 4.3) years, with diabetes onset before 1995, were studied in a cohort 1995-96.

    METHODS: HbA1c, insulin doses and severe hypoglycaemia were registered at regular visits scheduled quarterly, but not standardised in time. Seasonal mean values were calculated for HbA1c and insulin dose.

    RESULTS: Lower HbA1c was seen in spring and summer, and higher in autumn and winter (p=0.023). Patients reporting severe hypoglycaemia had a seasonal variation in HbA1c (p=0.019) and a tendency to seasonal variation in insulin dose, while patients not reporting severe hypoglycaemia did not vary in HbA1c or insulin dose.

    CONCLUSIONS: Self-control and adjustment of insulin doses to seasonal change need to be improved also in intensively treated children, with regard to the risk for worsened metabolic control after the summer and increased severe hypoglycaemia in spring and early summer. The findings have important implications for design of short-term studies of metabolic control.

  • 27.
    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.
    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.
    Self-study material to prevent severe hypoglycaemia in children and adolescents with type 1 diabetes: A prospective intervention study2002In: Practical Diabetes International, ISSN 1357-8170, Vol. 19, no 5, p. 131-136Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate use of self-study material in diabetes education aimed at prevention of severe hypoglycaemia. Targeted self-study brochures (and video programs) regarding diabetes self-care and prevention of severe hypoglycaemia were mailed to all patients in early 1997 (and in 1999): a geographic population of 122-139 intensively treated type 1 diabetes patients yearly, aged 1-18 years (mean 12.2, SD 4.3), between 1994 and 1999. Yearly mean HbA1c (1.15% below DCCT level) ranged from 4.1 to 11.6% (mean 6.6, SD 1.1), age at onset 0.5-17.4 years (mean 7.6, SD 4.0) and duration 0.1-16.6 years (mean 4.6, SD 3.7). Main outcomes were patient attitudes to the interventions, perceived benefit, level of use, severe hypoglycaemia, and HbA1c.

    Eighty-six percent of responders stated that the video was valuable. Perceived benefit was higher for the hypoglycaemia prevention video than for the brochure (p = 0.016). Those with severe hypoglycaemia the preceding year indicated greater benefit from the hypoglycaemia prevention brochure than others (p = 0.039). Average yearly incidence of severe hypoglycaemia with unconsciousness decreased from 13% in 1994-1996 to 9% (ns) in 1997-1999. The per patient cost of the material was <Euro 10.

    Conclusion. Self-study material can reach high dissemination at a low cost. It also seems to have contributed to a decrease in severe hypoglycaemia, but controlled studies are needed. There is a great need for good quality patient/consumer information materials dealing with aspects of general management and risk prevention in diabetes treatment.

  • 28.
    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.
    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.
    Severe hypoglycemia in children with IDDM: A prospective population study, 1992-19941997In: Diabetes Care, ISSN 0149-5992, Vol. 20, no 4, p. 497-503Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Is an increased incidence of severe hypoglycemia an unavoidable effect of improved metabolic control? And, if so, to what extent? RESEARCH DESIGN AND METHODS: In 1992-1994, severe hypoglycemia was prospectively registered in our intensively treated IDDM population, 146 children 1-18 years of age with > 90% of the patients on > or = 4 insulin injections per day. The two categories, "severe hypoglycemia with unconsciousness" (U hypoglycemia) and "severe hypoglycemia without unconsciousness but needing the assistance of another person" (NU hypoglycemia), were analyzed in relation to yearly mean HbAlc levels, insulin doses and proportion of short-acting insulin, age at onset, duration of diabetes, age, sex, and weight-to-height ratio. RESULTS: Yearly mean HbAlc levels improved from 8.1 +/- 1.6% in 1992 to 6.9 +/- 1.3% in 1994. The yearly incidence of U hypoglycemia was 0.15-0.19 events per patient-year, seen in 10-16% of patients, showing no significant increase from 1992-1994. For NU hypoglycemia, slightly increasing figures from 1.01 to 1.26 events per patient-year, seen in 27-38% of patients yearly, were reported. There was no significant correlation between severe (U or NU) hypoglycemia and HbAlc, but still an association was seen in certain calculations. In multiple regression analysis, U hypoglycemia was not related to any factor, but the square root of the rate of NU hypoglycemia was related to lower HbAlc levels (P = 0.0003), higher insulin doses (IU.kg-1.24 h-1) (P = 0.0024), and a lower proportion of short-acting insulin out of the total daily insulin dose (P = 0.031). CONCLUSIONS: Multiple-dose insulin therapy with rather low yearly mean HbAlc values causes a slight increase of NU hypoglycemia but no increase of U hypoglycemia in our population of children with IDDM. Near physiological HbAlc levels may be achieved without any pronounced risk of increasing the incidence of severe hypoglycemia when multiple-injection insulin therapy is combined with adequate self-control based on psychosocial support and active education.

  • 29.
    Nordfeldt, Sam
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry. Östergötlands Läns Landsting, CPS - Centrum för psykiatri och samhällsmedicin, BUP - Barn- och ungdomspsykiatri.
    Samuelsson, Ulf
    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, Barn.
    Serum ACE predicts severe hypoglycemia in children and adolescents with type 1 diabetes2003In: Diabetes Care, ISSN 0149-5992, E-ISSN 1935-5548, Vol. 26, no 2, p. 274-278Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE - To investigate whether risk of severe hypoglycemia is related to serum (S) ACE level during intensive treatment in type 1 diabetic children. RESEARCH DESIGN AND METHODS - A cohort of 86 intensively treated type 1 diabetic patients was studied during 1999-2000. In 1999, the age range was 7-19 years (median 12.8), diabetes duration was 1.2-14.7 years (5.3), insulin dose was 0,4-1.7 units ╖ kg-1 ╖ 24 h-1 (1.0), and the HbA1c year mean was 4.7-10.2% (6.8). HbA1c, insulin doses, and events of severe hypoglycemia (needing assistance from another person) were prospectively registered at regular visits, scheduled quarterly. S-ACE was determined once. RESULTS - Severe hypoglycemia was correlated to S-ACE (r = 0.22, 95% CI 0.0I-0.41, P = 0.0093). The square root of severe hypoglycemia was correlated to S-ACE (r = 0.27, 95% CI 0.06-0.45, P = 0.0093). Patients with S-ACE at the median level or above (n = 44) reported a mean of 3.0 yearly events of severe hypoglycemia compared with 0.5 events in patients with S-ACE lower than the median (n = 42) (P = 0.0079). Of the patients with an S-ACE at the median level or above, 27 (61%) reported severe hypoglycemia, compared with 17 (40%) patients with an S-ACE lower than the median (P = 0.0527). Insulin dose, HbA1c, age, onset age, duration, C-peptide, and sex did not differ between these two groups. S-ACE was negatively correlated with age (r = -0.27, 95% CI -0.46 to 0.07, P = 0.0265) but not with HbA1c, duration, or blood pressure. CONCLUSIONS - The elevated rate of severe hypoglycemia among patients with higher S-ACE suggests, among other factors, that a genetic determinant for severe hypoglycemia exists. Further evaluation is needed before the clinical usefulness of this test can be elucidated.

  • 30.
    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.
    Ängarne-Lindberg, Teresia
    Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    To use or not to use - practitioners' perceptions of an open web portal for young patients with diabetes.2012In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 14, no 6, p. 51-61Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health care professionals' attitudes can be a significant factor in their acceptance and efficient use of information technology, so they need to have more knowledge about this resource to enhance their participation.

    OBJECTIVE: We explored practitioners' perceptions of using an open-access interactive Web portal tailored to young diabetes type 1 patients and their guardians or significant others. The portal offered discussion forums, blog tools, self-care and treatment information, research updates, and news from local practitioners.

    METHODS: Eighteen professionals who were on pediatric diabetes care teams each wrote an essay on their experience using the portal. For their essays, they were asked to describe two situations, focusing on positive and negative user experiences. The essays were analyzed using qualitative content analysis.

    RESULTS: Based on our analysis of the respondents essays, we identified three categories that describe perceptions of the Web portal. The first category - to use or not to use - included the different perspectives of the practioners; those who questioned the benefits of using the Web portal or showed some resistance to using it. The frequency of use among the practitioners varied greatly. Some practitioners never used it, while others used it on a daily basis and regularly promoted it to their patients. Some respondents in this category reflected on the benefits of contributing actively to online dialogues. In the second category - information center for everyone - practitioners embraced the site as a resource for scientifically sound information and advice. As part of their practice, and as a complement to traditional care, practitioners in this category described sending information through the portal to patients and their significant others. Practitioners felt safe recommending the site because they knew that the information provided was generated by other practitioners. They also assumed that their patients benefited from actively using the Web portal at home: peers brought the site to life by exchanging experiences through the discussion forums. In the third category - developing our practice - practitioners reflected upon the types of information that should be given to patients and how to give it (ie, during in-person appointments or through the Web portal). They perceived meeting with various professionals at other hospitals to update information on the portal and develop content policies as constructive teamwork. Practitioners expressed interest in reading patients' dialogues online to learn more about their views. They also thought about how they could use the portal to adapt more to patients' needs (eg, creating functions so patients could chat with the diabetes nurses and doctors).

    CONCLUSIONS: Practitioners expressed positive perceptions toward a tailored open Web portal. They suggested that future benefits could be derived from systems that integrate factual information and online dialogues between practitioners and patients (ie, exchanging information for everyone's benefit).

  • 31.
    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 in Linköping.
    Ängarne-Lindberg, Teresia
    Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Nordwall, Maria
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Norrköping.
    Ekberg, Joakim
    Folkhälsovetenskap, Högskolan i Skövde, Sweden.
    Berterö, Carina
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    As facts and chats go online, what is important for adolsescents with type 1 diabetes?2013In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 8, no 6, p. e67659-Article in journal (Refereed)
    Abstract [en]

    Background

    Continued refinement of resources for patient information, education and support is needed. Considering the rapid development of new communication practices, the perspectives of young people themselves warrant more attention using a wide research focus. The purpose of this study was to understand information-seeking behaviours, Internet use and social networking online in adolescents with type 1 diabetes (T1DM). This applied to their everyday life, including the context of diabetes and their experiences and need of contact with T1DM peers.

    Methodology/Principal Findings

    Twenty-four adolescents aged 10–17 years with T1DM were recruited from a county hospital in the south-east of Sweden. Qualitative data were obtained using eight focus groups, wherein each participant engaged in a 60–90 minute video/audio-recorded session. The focus group data were transcribed and analysed using qualitative content analysis. Some demographic and medical information was also collected. The three main categories that were identified; Aspects of Security, Updating, and Plainness and their sub-categories gave significant information about how to enhance information retrieval and peer contacts related to T1DM. Regarding the persons' information-seeking behaviour, Internet use, and use of social media some differences could be identified depending on gender and age.

    Conclusions/Significance

    Sensitivity and adaptation to users' needs and expectations seem crucial in the development of future online resources for adolescents with T1DM. To start with, this could mean applying a wider range of already existing information and communication technologies. Health practitioners need to focus on the areas of security of information and communication, frequency of updating, and simplicity of design-less is more.

  • 32.
    Nordfeldt, Sam
    et al.
    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.
    Ängarne-Lindberg, Teresia
    Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Nordwall, Maria
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Norrköping.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Parents of Adolescents with Type 1 Diabetes: Their Views on Information and Communication Needs and Internet Use. A Qualitative Study2013In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 8, no 4Article in journal (Refereed)
    Abstract [en]

    Background

    Little is known about parents’ views on the use of online resources for information, education and support regarding childhood type 1 diabetes (T1DM). Considering the rapidly evolving new communication practices, parents’ perspectives need to be explored. The main purpose of this paper was to explore parents’ perceptions of their information-seeking, Internet use, and social networking online. This applied to their everyday life, including the contexts of T1DM and contact with peers. A second aim was to identify implications for future development of Internet use in this respect.

    Methodology/Principal Findings

    Twenty-seven parents of 24 young persons aged 10–17 with T1DM participated in eight focus group interviews during their regular visits to a county hospital. Focus group discussions were video/audio-taped, transcribed and analysed using inductive qualitative content analysis. Self-reported demographic and medical information was also collected. A main theme was Finding things out, including two sub-themes, Trust and Suitability. The latter were key factors affecting parents’ perceptions of online resources. Parents’ choice of information source was related to the situation, previous experiences and knowledge about sources and, most importantly, the level of trust in the source. A constantly present background theme was Life situation, including two sub-themes, Roles and functions and Emotions and needs. Parents’ information-seeking regarding T1DM varied greatly, and was closely associated with their life situation, the adolescents development phases and the disease trajectory.

    Conclusions/Significance

    Health practitioners and system developers need to focus on creating trust and suitability for users’ needs. They should understand the children’s diverse needs, which depend on their life situation, on the children’s development, and on the disease trajectory. To enhance trust in online health information and support services, the participation of local practitioners is crucial.

  • 33.
    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.

  • 34.
    Samuelsson, Ulf
    et al.
    Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
    Carstensen, John
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences.
    Löfman, Owe
    Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences. Linköping University, Faculty of Health Sciences.
    Nordfeldt, Sam
    Linköping University, Department of Molecular and Clinical Medicine, Child and Adolescent Psychiatry. Linköping University, Faculty of Health Sciences.
    Seasonal variation in the diagnosis of type 1 diabetes in south-east Sweden2007In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 76, no 1, p. 75-81Article in journal (Refereed)
    Abstract [en]

    With the aim to survey the seasonal pattern of diagnosis of type 1 diabetes we included all 1903 children <16 years of age and who had been diagnosed with type 1 diabetes between 1977 and 2001 in the south-east of Sweden. To investigate the seasonal pattern a mixture of two cosine functions was included in a logistic regression model.

    There was a clear seasonal variation over the years (p < 0.001). Children in the oldest age group (11–15 years) showed the most obvious seasonal variation (p < 0.001). Children with a short duration of symptoms had about the same seasonal variation as children with a long duration. Both children with and without an infection 3 months prior to diagnosis showed significant seasonal variation (p < 0.001) although the seasonal pattern differed between the two groups (p < 0.001). As the incidence of diabetes increased during the 25 years the study period was divided into periods of 5 years and it was only during the two last periods that significant seasonal variation occurred.

    There is a clear seasonal variation in diagnosis of type 1 diagnosis in children and the results suggest that children with a less aggressive disease process at diagnosis were most responsible for this variation. Children with and without prior infection showed a different seasonal pattern.

  • 35.
    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.

  • 36.
    Timpka, Toomas
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
    Hassling, Linda
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Nordfeldt, Sam
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Molecular and Clinical Medicine, Pediatrics.
    Eriksson, Henrik
    Linköping University, The Institute of Technology. Linköping University, Department of Computer and Information Science, MDALAB - Human Computer Interfaces.
    Towards integration of computer games in interactive health education environments: understanding gameplay challenge, narrative and spectacle.2004In: MedInfo, IOS Publishing , 2004, Vol. 11, no Pt 2, p. 941-945Conference paper (Refereed)
    Abstract [en]

    CONTEXT: There is an alarming progress in the health status of the young in western countries, and new methods and tools for behavioural health interventions are urgently called for. OBJECTIVE: To explore how computer game designs can be integrated in the development of Interactive Health Education Environments. DESIGN: Qualitative analyses of adolescents' experiences of playing an action-adventure computer game, using data from in-depth interviews. RESULTS: A model is presented, where the gameplaying experience is connected to four components of computer games. Playing computer games was found to mainly be motivated by the challenges and competition represented in the gameplay scripts. CONCLUSIONS: Interactive health education environments can be improved by implementing challenging gameplay scripts, spectacular technical features and narratives.

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