Web 2.0 systems supporting childhood chronic disease management: A pattern language representation of a general architecture

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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 <it>Title, Context, Problem, Solution, Examples and References</it>. <it>Application references </it>were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions.</p> <p>Results</p> <p>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.</p> <p>Conclusion</p> <p>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.</p

Quality of Care in Children and Adolescents with Type 1 Diabetes : Patients’ and Healthcare Professionals’ Perspectives

Background: Type 1 diabetes is a chronic disease for which there is currently no cure, and high quality care is essential if acute and long-term complications are to be avoided. Many children and adolescents have inadequate metabolic control with increased risk for complications later in life, and adolescent girls have reported low quality of life. Differences in metabolic control between treatment centres have been found but the reasons for this are unclear. Diabetes is a largely self-managed disease. Patient education is central to successful self-management but little is known about how to make best use of diabetes communities on the Internet and integrate them into a practitioner-driven service. Aim: The main objective of this thesis was to gain better understanding of how to improve the quality of diabetes care for children and adolescents, aiming to have near-normal blood glucose, to prevent both acute and late complications and to have good quality of life. Methods: The geographic populations of two paediatric centres (n=400) received validated questionnaires on perceived quality of care and Health-Related Quality of Life (HRQOL). An intervention with a web portal containing diabetes-related information and social networking functions was carried out within the same population. Clinical variables from 18 651 outpatient visits registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS were analysed. Using data from SWEDIABKIDS, five centres with the lowest mean HbA1c, five with the highest, and five with the largest decrease in centre mean HbA1c between 2003 and 2007 were identified. Team members (n=128) were asked about structure, process, policy, and the messages given to patients about important diabetes issues. Results: Specific areas that were identified as needing improvement included information about self-care, waiting time at outpatient clinics and for treatment, and access to care. Diabetes seemed to reduce HRQOL. Subjects with better metabolic control and with higher frequency of injections reported slightly higher HRQOL, as did those living with both parents compared to those with separated parents. Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes duration, and age. A difference between centres was found, but this could not be explained by differences in insulin dose, diabetes duration, or age. Adolescent girls reported lower HRQOL, as did parents of girls aged &lt; 8 years. Girls also had poorer metabolic control, especially during adolescence. In teams with the lowest and the most decreased mean HbA1c, members gave a clear message to patients and parents and had a lower HbA1c target value. Members of these teams appeared more engaged, with a more positive attitude and a greater sense of working as a team. Members of teams with the highest mean HbA1c gave a vaguer message, felt they needed clearer guidelines, and had a perception of poor collaboration within the team. High insulin dose, large centre population, and larger teams also seemed to characterize diabetes centres with low mean HbA1c. The most frequently visited pages on the web portal were the social networking pages, such as blogs, stories and discussions, followed by the diabetes team pages. Those who used the portal most actively were younger, had shorter diabetes duration, and lower HbA1c, and were more often girls. The web portal was not found to have any significant beneficial or adverse effects on HRQOL, empowerment or metabolic control. Conclusions: The quality of diabetes care for children and adolescents in Sweden is not sufficiently good and needs to improve further if complications in later life are to be avoided. Psychosocial support for children and adolescents with diabetes should be appropriate for age and gender. The attitudes of the members in the diabetes care team and the message they give to patients and their parents seem to influence metabolic control in children and adolescents. A clear and consistent message from a unified team appears to have beneficial effects on metabolic control. A web portal that includes comprehensive information about diabetes, and the opportunity to communicate with other people with diabetes and with healthcare professionals may be a useful complement to traditional patient education tools. Members of the diabetes team should encourage its use

Navigating the evaluation web : evaluation in Swedish local school governance

This paper explores the use, functions and constitutive effects of evaluation systems in local school governance, and identifies how contextual factors affect various uses of evaluation in this context. This case study of three Swedish municipalities demonstrates that local evaluation systems are set up to effectively sustain local school governance and ensure compliance with the Education Act and other state demands. Local decision makers have learned to navigate the web of evaluations and developed response strategies to manage external evaluations and to take into account what can be useful and what cannot be overlooked in order to avoid sanctions. The study shows that in contexts with high issue polarisation, such as schooling, the use of evaluation differs between the political majority and opposition, and relates to how schools perform in national comparisons and school inspections. Responses to external evaluations follow the same pattern. Some key performance indicators from the National Agency of Education and the School Inspectorate affect local school governance in that they define what is important in education, and reinforce the norm that benchmarking is natural and worthwhile, indicating constitutive effects of national evaluation systems.Konsekvenser av utvärderingar för grundskolans prakti

Questionnaires to Measure Process and Structure of Quality Indicators for Pediatric Nursing

Introduction: The quality of nursing care has a significant impact on the outcomes of care. The specific needs of children requiring hospital care make it essential to monitor and compare data not only on the medically oriented outcome measure but also on nursing care, structure, and process, requiring perspectives from registered nurses (RNs) and nurse managers (NMs). Thus, this project aimed to evaluate the structure and process of nursing quality indicators in pediatric hospital care with questionnaires distributed to RN and NM. Methods: We developed separate questionnaires for NMs and RNs to assess the process and structure of the quality indicators of breastfeeding, management of pain, venous access, medication management, and provision of a child-oriented environment. Nine NMs and 113 RNs from 9 pediatric wards answered the questionnaires. Result: Local guidelines were available for 3 out of the 5 quality indicators: pain management, venous access, and medication management. RNs reported varying levels of adherence to pain management (62%), and venous access management (72%). Satisfaction with the conditions for safe medication management was 90%. Approximately, two-thirds (67%) of RN reported sufficient knowledge regarding the impact of the child-oriented environment and less than half (44%) regarding how to support breastfeeding. Conclusion: Structure and process is a prerequisite for quality of care outcomes. This study discloses areas for quality improvement and offers instruments to compare structure and process in pediatric nursing care to discuss with consumers, managers, staff, and other stakeholders

The influence of age, gender, insulin dose, BMI, and blood pressure on metabolic control in young patients with type 1 diabetes

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

Glycated haemoglobin variations in paediatric type 1 diabetes: the impact of season, gender and age

AimTo study whether monthly variations in type 1 diabetes incidence are related to monthly glycated haemoglobin (HbA1c) levels at diagnosis and if high HbA1c at diagnosis is related to certain clinical variables at diagnosis and during the clinical course of the disease. MethodsData from 4430 boys and 3590 girls registered in the Swedish paediatric diabetes quality registry, Swedish paediatric diabetes quality registry, from 2000 to 2010 were analysed. ResultsMonth of onset varied (pless than0.001), with 53% diagnosed during September to February, and mean HbA1c at diagnosis was highest in May (10.9%, 96mmol/mol) and lowest in (October 9.4%, 88mmol/mol) (pless than0.001). Girls showed higher HbA1c at onset than boys (pless than0.001). More than half (53%) with an annual mean HbA1c of greater than9.3% (78mmol/mol) and 4% of those with an annual mean of less than7.4% (57mmol/mol) in 2007 had greater than9.3% (78mmol/mol) in 2010. ConclusionPatients with high HbA1c levels during a certain period have the same high levels several years later. This group, perhaps including those with high HbA1c level at diagnosis, may need more intensive care, including extra support from the diabetes teams and other forms of medical treatment