Education for teenagers with diabetes has had limited effects to date, especially regarding metabolic control. The development had been towards more patient-centred approaches, like empowerment, motivational interviews and family behavioural programmes. A patient-centred approach means that the patient is expected to take control of the management of the disease. The empowerment approach has been implemented in adults with diabetes, with some positive results. The aims of this thesis were to evaluate empowerment group education and education in a camp setting, and to validate the “Check your health” instrument which can be used to assess the effects of such education programmes on perceived health and the burden of diabetes. Thirty-two teenagers between 12 and 17 years of age were randomized to either an intervention group or a wait-listed control group. The intervention consisted of six group sessions with an empowerment approach as the theoretical frame. Thirty-one of the teenagers were interviewed two weeks after the empowerment education programme was completed. The programme did not have any positive effect on metabolic control between-groups, but within groups HbA1c and readiness to change increased. According to the definition of empowerment, which pinpoints decision-making, the interviews were analysed with that in focus. In the interviews the teenagers described five categories they perceived as important for decision-making competence: cognitive maturity, personal qualities, experience, social network and parent involvement. Parent involvement was described as both constructive and destructive. These categories were interpreted in the overall theme that “teenagers deserve respect and support for their shortcomings during the maturity process”. Ninety teenagers between 14 and 17 years of age attended education in a camp setting and were compared to a reference group, who had declined participation. The camp did not have any positive effect on metabolic control, but the frequency of insulin pump use after camp education increased. In a cross-sectional comparison, the campers had more positive attitudes towards diabetes and self-care than the non-campers did. The “Check your health” instrument was tested for reliability and validity in 199 teenagers between 12 and 17 years of age. The instrument was found to be reliable and valid for use on a group level in teenagers with diabetes. In conclusion, empowerment education programmes should be tailored to suit young people with diabetes, and should preferably be integrated into routine care. Teenagers who prefer individual education may be offered an individual education plan. Parents should be involved in all education of teenagers with diabetes, with the purpose of increasing teamwork and decreasing control and conflict. Continued assessment of teenagers perceived health and perceived burden of diabetes can be carried out using the “Check your health” instrument.

Studiens syfte var att beskriva upplevelse av hälsa och välbefinnande hos vuxna personer med Typ 1 Diabetes Mellitus (T1DM). Jämförelser gjordes även mellan kön och åldrar. Urvalet gjordes från medlemmar i Gävleborgs Diabetesförbund och bestod utav 56 personer (kvinnor n 30, män n 26) med ett åldersspann mellan 19-76. Använd datainsamlingsmetod var en förkortad och översatt version av mätinstrumentet Ryff’s Psychological Well being Scale. Enkäten bestod utav 18 frågor inom de 6 dimensioner som instrumentet består utav: Självacceptans, positiva relationer med andra, autonomi, levnadskontroll, meningen med livet samt personlig utveckling. Resultatet visade att gruppen T1DM skattade sig generellt högt inom hälsa och välbefinnande men lägst inom dimensionen autonomi och högst inom positiva relationer med andra. Statistisk signifikans framkom vid jämförelse av åldersgrupperna 19-39 och 40-60 inom dimensionerna meningen med livet samt personlig utveckling där gruppen 19-39 skattade sig högst inom båda dimensionerna. Statistisk signifikans kunde även påvisas vid jämförelse av samtliga 3 åldersgrupper inom dimensionen meningen med livet där gruppen 19-39 skattade sig högst och 61+ lägst. Slutligen kunde statistisk signifikans påvisas mellan könen inom dimensionen positiva relationer med andra där kvinnorna skattade sig högre än männen. Vidare forskning behövs inom området som rör personer med T1DM för att förbättra allmän hälsa och välbefinnande. / The aim of this study was to describe the experience health and well-being among adults with type 1 diabetes mellitus (T1DM). Comparison was made regarding sex and age. The sample was taken from Gävleborgs Diabetesförbund and consisted of 56 persons (women n 30, men n 26) aged between 19 and 76. Health and well-being was measured with a shortened translated 18 item version of the instrument Ryff’s Psychological Well being Scale. The 18 items describe the 6 dimensions of the instrument which it is built on: self-acceptance, positive relationships with others, autonomy, environmental mastery, purpose in life and personal growth. The result shows that the group T1DM estimated themselves generally high in health and well-being but lowest in the dimension autonomy and highest in positive relations with others. Statistical significance was shown in comparison between age groups 19-39 and 40-60 in the dimensions purpose in life and personal growth, where the group 19-39 estimated themselves highest in both dimensions. Statistical significance was also demonstrated in comparison between all age groups in the dimension purpose in life, where the group 19-39 estimated themselves highest and 61+ lowest. Finally, statistical significance was shown between the sexes in the dimension positive relations with others, where the women estimated themselves higher than the men. Further research is needed in the area that involves persons with T1DM to improve their general health and well-being.

In this thesis interactions in complex fluids, such as serum and meat juice, were analysed with optical biosensor techniques. Panels of lectins immobilised on gold surfaces were used for investigation of differences in protein glycosylation pattern in sera and meat juices between various species. The present panel was also used for investigation of global glycosylation changes of serum proteins in type 1 diabetes patients. Biorecognition was evaluated with null ellipsometry and scanning ellipsometry combined with multivariate data analysis techniques (MVDA). Principal component analysis (PCA) showed that the lectin panel enabled discrimination between sera from the different species as well as for the different meat juices. The results also indicate that there is a measurable global alteration in glycosylation pattern of serum proteins in type 1 diabetic patients compared to healthy subjects. Using an artificial neuronal net (ANN), it was also possible to correctly categorise unknown serum samples into their respective class or group. The analytical potential of combining information from lectin panels with multivariate data analysis was thereby demonstrated. Also, a sensitive and specific method based on surface plasmon resonance (SPR) for detection of insulin autoantibodies (IAA) in serum samples from individuals at high risk of developing type 1 diabetes (T1D) has been developed. When measuring trace molecules, such as autoantibodies, in undiluted sera with label-free techniques like SPR, non-specific adsorption of matrix proteins to the sensor surface is often a problem, since it causes a signal that masks the analyte response. The developed method is an indirect competitive immunoassay designed to overcome these problems. Today, IAA is mainly measured in radio immunoassays (RIAs), which are time consuming and require radioactively labelled antigen. With our SPR-based immunoassay the overall assay time is reduced by a factor of >100 (from 4 days to 50 min), while sensitivity is maintained at a level comparable to that offered by RIA. Finally, the assay was used in a screening study of newly diagnosed type 1 diabetes patients and non-diabetic subjects.

Type 1 Diabetes (T1D) is an autoimmune disorder caused by both genetic and environmental factors. The non-obese diabetic (NOD) mouse is one of the best and most commonly studied animal models for T1D. This mouse strain spontaneously develops diabetes through a process that closely resembles the human pathogenesis. More than 20 insulin dependent susceptibility (Idd) loci have been identified in the NOD mouse, contributing to disease susceptibility; however, the contribution of each of the various factors to disease pathogenesis is largely unknown. The aim of this thesis was to identify and functionally characterize candidate genes mediating susceptibility to murine T1D. Cytotoxic T lymphocyte-associated antigen 4 (CTLA-4) is a negative regulator of T-cell activation and has been shown to be associated with autoimmune diseases. Genetic analyses of the NOD mouse have identified the Ctla-4 gene as a major candidate for the Idd5.1 diabetes susceptibility locus and NOD mice have been found to display an impaired expression of CTLA-4 upon anti-CD3 stimulation in vitro. In Paper I, we showed that a novel locus (Ctex) in the distal part of the chromosome 1 together with the Idd3 (Il-2) locus on chromosome 3, constitute the major factors conferring the observed difference in CTLA-4 expression levels. Moreover, we also demonstrated that the defective expression of CTLA-4 in NOD T-cells can in part be overcome by the addition of exogenous interleukin-2 (IL-2). In Paper II, using congenic mice, we confirmed that the Ctex locus contributes to decreased expression of CTLA-4 observed in NOD mice and restricted the region of interest to a 28.8 Mb region containing the Cd3ζ gene. We also demonstrated a phenotypic correlation between strains carrying the NOD versus C57BL/6 alleles of Cd3ζ, respectively and showed that expression of CD3ζ is impaired in activated NOD CD4+ T cells. The NOD allele of the Cd3ζ region was found to confer impaired T cell activation and the defective CD3 signalling could be surpassed by PMA plus ionomycin stimulation supporting the notion of CD3ζ as a prime candidate gene for Ctex. NOD lymphocytes display relative resistance to various apoptosis-inducing signals, which have been proposed to contribute to the pathogenesis of diabetes. Resistance to dexamethasone-induced apoptosis in NOD immature thymocytes has been mapped to the Idd6 locus. In Paper III we restricted the Idd6 locus to an 8 cM region on the telomeric end of chromosome 6 using a set of congenic mice. In addition, we could confirm that the Idd6 region controls apoptosis resistance in immature thymocytes and restricted the control of apoptosis resistance to a 3 cM region within the Idd6 locus. In Paper IV, we further restricted the Idd6 locus to a 3 Mb region and excluded the region controlling the resistance to apoptosis as directly mediating susceptibility to diabetes. We also showed that defective expression of the Lrmp/Jaw1 gene, encoding an endoplasmatic reticulum resident protein, is controlled by the Idd6 locus making it the prime candidate for Idd6.  Together, these results contribute to the identification and functional characterization of candidate genes that may confer susceptibility to T1D in the NOD mouse. These results offer important insights into the pathophysiological processes underlying this disease.

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 < 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.

Syftet med detta arbete är att undersöka om det föreligger någon skillnad mellan hur personer med diabetes typ 1 med MDI- respektive IP-behandling skattar sin hälsorelaterade livskvalitet, behandlingstillfredsställelse och uppfattning av behandlingsformens påverkan på livskvaliteten. Vidare är syftet att undersöka om det föreligger någon skillnad mellan män och kvinnor, samt mellan kvinnor respektive män i MDI- respektive IP-gruppen, avseende hälsorelaterade livskvalitet, behandlingstillfredsställelse och uppfattning av behandlingsformens påverkan på livskvaliteten. Som instrument användes enkäten SF-36 samt en egenkonstruerad enkät med bakgrundsfrågor rörande skattning av behandlingstillfredsställelse och uppfattning av behandlingsformens påverkan på livskvaliteten. I MDI-gruppen deltog 40 deltagare och i IP-gruppen 37 deltagare. Studien har en deskriptiv jämförande design. Resultatet visade att det inte finns någon signifikant skillnad mellan MDI- och IP-gruppens skattning av hälsorelaterad livskvalitet. Skillnader kunde påvisas mellan behandlingsformerna gällande behandlingstillfredsställelse och uppfattningen av behandlingsformens påverkan på livskvalitet. IP-gruppen har en signifikant högre behandlingstillfredsställelse samt anser att behandlingsformen påverkar deras livskvalitet mer än MDI-gruppen. Kvinnor i MDI-gruppen skattade sin hälsorelaterade livskvalitet signifikant lägre än män i MDI-gruppen, ingen skillnad kunde dock påvisas mellan männen och kvinnorna i IP-gruppen. Männen i MDI-gruppen skattar sin hälsorelaterade livskvalitet signifikant högre än männen i IP-gruppen. Ingen skillnad kunde påvisas mellan männen i de båda grupperna gällande behandlingsstillfredsställelse eller uppfattningen av behandlingsformens påverkan på livskvaliteten. Kvinnorna i IP-gruppen skattade signifikant högre gällande behandlingsstillfredsställelse och uppfattningen av behandlingsformens påverkan på livskvaliteten än kvinnorna i MDI-gruppen. Kvinnorna i IP-gruppen har likartad hälsorelaterad livskvalitetsskattning som männen i samma grupp och har även en högre behandlingstillfredsställelse än kvinnor i MDI-gruppen. Slutsatsen kan vara att IP är en lämplig behandling för kvinnor

Sammanfattning  Bakgrund: Typ 1 diabetes är en av de vanligaste kroniska sjukdomarna bland barn. Målet för all diabetesbehandling hos barn är att normalisera blodsockernivån för att undvika senkomplikationer i vuxen ålder. Eftersom barnet tillbringar en stor del av dagen i skolan så behöver behandlingen fungera bra under skoldagen. År 2008 uppgav barndiabetesteam i Sverige att ca 50 % av alla barn med diabetes i låg- och mellanstadiet inte får ett tillräckligt stöd i sin diabetesbehandling i skolan. En funktion som diabeteskonsulent har testats i Jönköpings läns landsting under två år för att erbjuda kunskaper som skolpersonal behöver angående diabetes.Syfte: Att beskriva diabeteskonsulentens möjlighet att påverka de stöd som barn med typ 1 diabetes får i skolan. Metod: Insamlingen av empirisk data har skett genom intervjuer, enkäter och jämförelse av HbA1c. Resultat: Diabeteskonsulenten upplever att hon har möjlighet att förmedla den kunskap som skolpersonal behöver. De föräldrar vars barn haft besök av diabeteskonsulenten upplever sig mindre ofta vara oroliga över att barnet inte får ett bra stöd i skolan, fler av dessa barn har en huvudansvarig person i skolan samt fler barn har en individuellt informationsplan än de barn som inte haft besök. Funktionen som diabeteskonsulent har inte förändrat den metabola kontrollen under studieperioden.Diskussion: Resultatet av interventionen visar att en diabeteskonsulent kan vara ett framgångsrikt arbetssätt för att förbättra stödet till barn med typ 1 diabetes i skolan. Ytterligare studier behövs för att klargöra i vilka årskurser diabeteskonsulenten gör mest nytta och för att efterhöra skolpersonalens upplevelse av diabeteskonsulentens arbete. / AbstractBackground: Type 1 diabetes is one of the most common chronic diseases in children. The overall goal in treating diabetes is to normalize the blood sugar level, in order to avoid complications in adulthood. Since a child spends a large part of the day at school, the treatment has to work well during the school hours. In 2008, paediatric diabetes team in Sweden reported that about 50% of the children in lower primary school, suffering from diabetes, do not receive sufficient support in their diabetic treatment at school. A function such as diabetes resource nurse has been tested in Jönköping County Council for two years to offer the school staff necessary knowledge about diabetes. Purpose: Describe the diabetes resource nurse possibility to influence the support children with diabetes receive at school. Method: The collection of empirical data was done through interviews, questionnaires and comparison of HbA1c. Results: The diabetes resource nurse feels that she is able to convey the knowledge necessary for the school personnel. Parents whose children have been visited by a diabetes recourse nurse says that they less often fear that their child does not get good support at school, that more of the children have a person in charge in school and that more children have an individual communication plan, compared to parents whose children have not been visited by a diabetes resource nurse. The function of the diabetes resource nurse did not improve the metabolic control during the study period. Discussion: The result of the intervention shows that a diabetes resource nurse can successfully improve the support children with type 1 diabetes receive at school. Further studies are needed to clarify which grades benefits the most from the support of a diabetes resource nurse and inquire the school personnel's experience of the diabetes consultant's work.

Syfte: Att utifrån litteratur beskriva hur sjuksköterskan kan identifiera tecken på depression hos tonåringar med typ 1 diabetes och hur hon kan stödja dessa tonåringar. Metod: En deskriptiv litteraturstudie som baseras på 15 artiklar sökta i databaserna CINAHL och PubMed samt genom manuella sökningar. Huvudresultat: Tecken på depression hos tonåringar med typ 1 diabetes är högt HbA1c-värde, låg frekvens av blodsockerkontroller och lägre livskvalité. Sjuksköterskan kan använda sig av standardiserade mätinstrument för att identifiera tecken på depression hos tonåringar med typ 1 diabetes, till exempel CDI, CES-D, YSR, WHO-5 och VAS. Tonåringar med typ 1 diabetes önskar stödåtgärder i form av skräddarsydda strukturerade undervisningsprogram, roliga aktiviteter och uppföljning via SMS. Sjuksköterskan kan använda sig av gruppintervention, internetbaserade egenvårdsprogram samt be tonåringarna skriva själva om sin diabetes, vilket har visat sig ha positiva effekter på tonåringens välbefinnande. Vårdgivare uppger flera hinder i hanteringen av depression hos diabetespatienter, bland annat otillräcklig utbildning och tidsbrist. Slutsats: Det är viktigt med utbildning för sjuksköterskor inom området tonåringar, typ 1 diabetes och depression. Mer forskning är nödvändigt för att möta kombinationen typ 1 diabetes och depression hos tonåringar. / Aim: To describe according to the literature how the nurse can identify signs of depression in adolescents with type 1 diabetes and how the nurse can support them. Method: A literature study with descriptive design based on 15 scientific articles searched in the databases CINAHL, PubMed and by ancestry approach. Main results: Signs of depression in adolescents with type 1 diabetes are high HbA1c, low frequency of blood glucose monitoring and lower quality of life. The nurse can use standardized questionnaires to identify signs of depression in adolescents with type 1 diabetes, for example CDI, CES-D, YSR, WHO-5 and VAS. Adolescents with type 1 diabetes wish supportive measures such as tailored, structured education programs, fun activities and follow-up by text messaging. The nurse can use group interventions, internet-based self-care programs and ask adolescents to write about their diabetes, because this has positive effects on the adolescent’s well-being. Health care providers report several obstacles in the management of depression in patients with diabetes, among other things inadequate training and lack of time. Conclusion: It is important with training for nurses in the field of adolescents, type 1 diabetes and depression. More research is needed to meet the combination of type 1 diabetes and depression in adolescents.

Syftet med denna litteraturstudie var att beskriva hur föräldrar till barn med diabetes mellitus typ 1 upplever och hanterar sin vardag samt hur de upplever stöd och information från sjukvården. Den design som användes var beskrivande litteraturstudie. De databaser som användes var Cinahl och PubMed och resultatet formades från 15 vetenskapliga artiklar. Det resultat som framkom var att i samband med barnets insjuknande upplevde föräldrar bland annat kaos, ångest, sorg och chock. Föräldrarna fick ta ett stort ansvar över sjukdomen och de använde olika copingstrategier för att kunna hantera detta. Oron för att barnet skulle drabbas av hypoglykemi var stor hos många föräldrar och många var också oroliga över att låta barnet ta ansvar över sin sjukdom. Att kunna få stöd från sjukvården tyckte många föräldrar var viktigt, de sökte också information på andra sätt exempelvis genom föräldragrupper. De 15 vetenskapliga artiklarna kvalitetgranskades, analyserades och sammanställdes. Den slutsats som framkom var att livet förändrades på många olika sätt efter att barnet fått sin diagnos. Detta krävde stort engagemang från föräldrarna då hela familjens liv påverkades. / The purpose of this study was to describe how parents of children with type 1 diabetes mellitus experienced and coped with their everyday lives and how they experienced support and information from health care. The used design was descriptive literature study. The databases used were Cinahl and PubMed and the result was formed from 15 scientific articles. The results that emerged were that in connection with the child got sick the parents experienced including chaos, anxiety, grief and shock. The parents had to take a major responsibility of the disease and used different coping strategies to deal with it. Concern that the child would suffer from hypoglycemia was high among many parents and many were also concerned about letting the child take responsibility over their illness. Many parents found it important to be eligible support from health care professionals, they also examined the information in other ways such as parent groups. The 15 scientific articles quality were examined analyzed and summarized. The conclusion that emerged was that life changed in many different ways after the child received his diagnosis. This required considerable commitment from the parents when the entire family´s lifes were affected.

Thesis (Ph. D.)--University of Missouri--Columbia, 2003. / "December 2003." Typescript. Vita. Includes bibliographical references (leaves 146-172). Also issued on the Internet.