Use of a web 2.0 portal to improve education and communication in young patients with families: randomized controlled trial.

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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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 (P<.001) and the second year (P<.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 (P<.001). Peer interaction seems to be a valued aspect. CONCLUSIONS: 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. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN):92107365; http://www.controlled-trials.com/ISRCTN92107365/ (Archived by WebCite at http://webcitation.org/6IkiIvtSb).

As Facts and Chats Go Online, What Is Important for Adolescents with Type 1 Diabetes?

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.

Parents of adolescents with type 1 diabetes--their views on information and communication needs and internet use. A qualitative study.

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.

To use or not to use--practitioners' perceptions of an open web portal for young patients with diabetes.

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).

Patient and parent views on a Web 2.0 Diabetes Portal--the management tool, the generator, and the gatekeeper: qualitative study.

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.

Web 2.0 systems supporting childhood chronic disease management: design guidelines based on information behaviour and social learning theories.

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.

Health professionals' attitudes towards using a Web 2.0 portal for child and adolescent diabetes care: qualitative study.

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.

Health-related quality of life in intensively treated young patients with type 1 diabetes.

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 <8 yr of age reported lower DiHRQOL (p = 0.047) than did parents of boys <8 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.

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

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.

ADHD from a socio-economic perspective.

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.

Quality of care from the patient's perspective in pediatric diabetes care.

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.

Persistent effects of a pedagogical device targeted at prevention of severe hypoglycaemia: a randomized, controlled study.

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

Use of cultural probes for representation of chronic disease experience: exploration of an innovative method for design of supportive technologies.

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.

Use of the Internet to search for information in type 1 diabetes children and adolescents: a cross-sectional study.

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.

Fear and other disturbances of severe hypoglycaemia in children and adolescents with type 1 diabetes mellitus.

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 hypoglycaemia 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.

Design of interactive health drama built on social realism.

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.

Towards integration of computer games in interactive health education environments: understanding gameplay challenge, narrative and spectacle.

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.

Serum ACE predicts severe hypoglycemia in children and adolescents with type 1 diabetes.

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 x kg(-1) x 24 h(-1) (1.0), and the HbA(1c) year mean was 4.7-10.2% (6.8). HbA(1c), 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 0.01-0.41, 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, HbA(1c), 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 HbA(1c), 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.