| 1. |
- Timpka, Toomas, 1957-, et al.
(författare)
-
Web 2.0 systems supporting childhood chronic disease management : A pattern language representation of a general architecture
- 2008
-
Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 8
-
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.
|
|
| 2. |
- Graspemo, Gabriella, 1967-, et al.
(författare)
-
Design of interactive health drama built on social realism.
- 2004
-
Ingår i: MedInfo. - : IOS Publishing. - 1586034448 ; , s. 879-883
-
Konferensbidrag (refereegranskat)abstract
- 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.
|
|
| 3. |
- Hanberger, Lena, 1957-, et al.
(författare)
-
Quality of care from the patient's perspective in pediatric diabetes care
- 2006
-
Ingår i: Diabetes Research and Clinical Practice. - : Elsevier BV. - 0168-8227 .- 1872-8227. ; 72:2, s. 197-205
-
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.
|
|
| 4. |
|
|
| 5. |
- Hassling, Linda, 1977-, et al.
(författare)
-
Use of cultural probes for representation of chronic disease experience : Exploration of an innovative method for design of supportive technologies
- 2005
-
Ingår i: Technology and Health Care. - 0928-7329. ; 13:2, s. 87-95
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 6. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Development of a PC-based diabetes simulator in collaboration with teenagers with Type 1 diabetes
- 2007
-
Ingår i: Diabetes Technology & Therapeutics. - : Mary Ann Liebert Inc. - 1520-9156 .- 1557-8593. ; 9:1, s. 17-25
-
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.
|
|
| 7. |
- Timpka, Toomas, 1957-, et al.
(författare)
-
Towards integration of computer games in interactive health education environments : understanding gameplay challenge, narrative and spectacle.
- 2004
-
Ingår i: MedInfo. - : IOS Publishing. - 1586034448 ; , s. 941-945
-
Konferensbidrag (refereegranskat)abstract
- 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.
|
|
| 8. |
|
|
| 9. |
- Bernfort, Lars, 1967-, et al.
(författare)
-
The Socioeconomic burden of AD/HD
- 2004
-
Ingår i: Health Technology Assessment International HTAi,2004.
-
Konferensbidrag (refereegranskat)
|
|
| 10. |
|
|
| 11. |
|
|
| 12. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Fear and other disturbances of severe hypoglycaemia in children and adolescents with type 1 diabetes mellitus
- 2005
-
Ingår i: Journal of Pediatric Endocrinology & Metabolism (JPEM). - 0334-018X .- 2191-0251. ; 18:1, s. 83-91
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 13. |
- Nordfeldt, Sam, 1957-
(författare)
-
On Severe Hypoglycaemia in Children and Adolescents with Type 1 Diabetes
- 2000
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
|
|
| 14. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Persistent effects of a pedagogical device targeted at prevention of severe hypoglycaemia : A randomized, controlled study
- 2005
-
Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 94:10, s. 1395-1401
-
Tidskriftsartikel (refereegranskat)abstract
- 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
|
|
| 15. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Prevention of severe hypoglycaemia in type I diabetes : A randomised controlled population study
- 2003
-
Ingår i: Archives of Disease in Childhood. - : BMJ. - 0003-9888 .- 1468-2044. ; 88:3, s. 240-245
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 16. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Serum ACE predicts severe hypoglycemia in children and adolescents with type 1 diabetes
- 2003
-
Ingår i: Diabetes Care. - : American Diabetes Association. - 0149-5992 .- 1935-5548. ; 26:2, s. 274-278
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 17. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Sjukvårdens och skolans insatser för barn med AD/HD - föräldrars erfarenheter. : En intervjustudie
- 2006
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Denna rapport är framtagen i ett samarbete mellan CMT, avdelningen för Barnoch ungdomspsykiatri vid IMK, Hälsouniversitetet i Linköping och Elevhälsan inom Specialverksamheter i Linköpings kommun. Tidigare har AD/HD och relaterade tillstånd belysts vad gäller epidemiologi, behandling och hälsoeffekter i CMT-rapport 2003:4. Nyligen har området studerats mer från ett samhällsperspektiv i CMT-rapport 2005:3. I denna tredje rapport tillförs ett anhörigperspektiv från intervjuer med anhöriga i Östergötland.I litteraturen har få utvärderingar från ett anhörigperspektiv av insatser vid AD/HD och relaterade tillstånd kunnat återfinnas. Det är vår förhoppning att denna rapport kan bidra till ett bredare perspektiv.Vi vill rikta ett varmt tack till alla deltagande familjer. Vi tackar även skolpsykiater Ann Fristedt och Elevhälsan i Linköpings kommun, docent Per Gustafsson och avdelningen för Barn- och Ungdomspsykiatri vid Hälsouniversitetet i Linköping, samt Landstinget i Östergötland som på olika sätt stöttat arbetet.
|
|
| 18. |
- Nordfeldt, Sam, 1957-, et al.
(författare)
-
Use of the Internet to search for information in type 1 diabetes children and adolescents : A cross-sectional study
- 2005
-
Ingår i: Technology and Health Care. - 0928-7329. ; 13:1, s. 67-74
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 19. |
|
|
| 20. |
- Samuelsson, Ulf, 1951-, et al.
(författare)
-
Seasonal variation in the diagnosis of type 1 diabetes in south-east Sweden
- 2007
-
Ingår i: Diabetes Research and Clinical Practice. - : Elsevier BV. - 0168-8227 .- 1872-8227. ; 76:1, s. 75-81
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
