| 1. |
- Hanberger, Lena, et al.
(författare)
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AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS
- 2008
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Ingår i: Diabetes Care. - : American Diabetes Association. - 0149-5992 .- 1935-5548. ; 31:5, s. 927-929
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE - We explored the relationship between AlC and insulin regimen, duration of diabetes, age, sex, and BMI as well as the differences between clinical mean AlC levels at pediatric diabetes clinics in Sweden. RESEARCH DESIGN AND METHODS - Data from 18,651 clinical outpatient visits (1,033 girls and 1,147 boys) at 20 pediatric clinics during 2001 and 2002 registered in the Swedish Childhood Diabetes Registry SWEDIABKIDS, a national quality registry, were analyzed. RESULTS - AlC was < 7.0% (target value similar to 8% per Diabetes Control and Complications Trial/National Glycohemoglobin Standardization Program standards) at 35% of the visits. Girls had significantly higher mean AlC than boys during adolescence. High mean AlC was correlated with high mean insulin dose, long duration of diabetes, and older age. Mean AlC varied between clinics (6.8-8.2%). Differences between centers could not be explained by differences in diabetes duration, age, BMI, or insulin dose. CONCLUSIONS - Adolescents with a high insulin dose and a long duration of diabetes, especially girls, need to be focused on, Differences in mean values between centers remained inexplicable and require further investigation.
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| 2. |
- Hanberger, Lena, et al.
(författare)
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Health-related quality of life in intensively treated young patients with type 1 diabetes
- 2009
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Ingår i: Pediatric Diabetes. - : Hindawi Limited. - 1399-543X .- 1399-5448. ; 10:6, s. 374-381
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Hanberger, Lena, 1957-, et al.
(författare)
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Quality of care from the patient's perspective in pediatric diabetes care
- 2006
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Ingår i: Diabetes Research and Clinical Practice. - : Elsevier BV. - 0168-8227 .- 1872-8227. ; 72:2, s. 197-205
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
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Development of a PC-based diabetes simulator in collaboration with teenagers with Type 1 diabetes
- 2007
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Ingår i: Diabetes Technology & Therapeutics. - : Mary Ann Liebert Inc. - 1520-9156 .- 1557-8593. ; 9:1, s. 17-25
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Nordqvist, Cecilia, et al.
(författare)
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Health professionals' attitudes towards using a Web 2.0 portal for child and adolescent diabetes care : qualitative study.
- 2009
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Ingår i: Journal of medical Internet research. - : JMIR Publications Inc.. - 1438-8871. ; 11:2, s. e12-
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Timpka, Toomas, 1957-, et al.
(författare)
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Web 2.0 systems supporting childhood chronic disease management : A pattern language representation of a general architecture
- 2008
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Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background. Chronic disease management is a global health concern. By the time they reach adolescence, 10-15% of all children live with a chronic disease. The role of educational interventions in facilitating adaptation to chronic disease is receiving growing recognition, and current care policies advocate greater involvement of patients in self-care. Web 2.0 is an umbrella term for new collaborative Internet services characterized by user participation in developing and managing content. Key elements include Really Simple Syndication (RSS) to rapidly disseminate awareness of new information, weblogs (blogs) to describe new trends, wikis to share knowledge, and podcasts to make information available on personal media players. This study addresses the potential to develop Web 2.0 services for young persons with a chronic disease. It is acknowledged that the management of childhood chronic disease is based on interplay between initiatives and resources on the part of patients, relatives, and health care professionals, and where the balance shifts over time to the patients and their families. Methods. Participatory action research was used to stepwise define a design specification in the form of a pattern language. Support for children diagnosed with diabetes Type 1 was used as the example area. Each individual design pattern was determined graphically using card sorting methods, and textually in the form Title, Context, Problem, Solution, Examples and References. Application references were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions. Results. The design patterns are divided into functional and non-functional design elements, and formulated at the levels of organizational, system, and application design. The design elements specify access to materials for development of the competences needed for chronic disease management in specific community settings, endorsement of self-learning through online peer-to-peer communication, and systematic accreditation and evaluation of materials and processes. Conclusion. The use of design patterns allows representing the core design elements of a Web 2.0 system upon which an 'ecological' development of content respecting these constraints can be built. Future research should include evaluations of Web 2.0 systems implemented according to the architecture in practice settings.
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