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Aims Many adults with type 1 diabetes do not achieve recommended glycemic goals despite intensive insulin therapy using insulin pumps. The aim of this study was to explore associations between clinical and psychosocial factors and HbA1c in insulin pump users to identify and prioritize areas for potential intervention. Methods A questionnaire-based survey covering clinical and psychosocial aspects of life with type 1 diabetes was distributed to all adult (≥ 18 years) insulin pump users in the Capital Region of Denmark. Responses were combined with data from medical records and national registries. Associations with HbA1c were modeled using regression-based machine learning. Results Of 1,591 invited individuals, 770 (48.4%) responded to the survey. Mean HbA1c among responders was 7.3% (56 mmol/mmol), and 35.6% had an HbA1c Conclusions This study identified several associations between clinical and psychosocial factors and HbA1c that may be considered when developing interventions targeted people with type 1 diabetes.

BACKGROUND Despite the fact that commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, ‘open-source’ AID systems, co-created by an online community of people with diabetes (PwD) and their families behind the hashtag ‘#WeAreNotWaiting’, have become increasingly popular. OBJECTIVE This study focused on lived experiences, physical and emotional health implications of PwD following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored by the existing literature. METHODS Data were collected from 383 participants across 29 countries through two sets of open-ended questions of a web-based survey regarding their experience of building and using open-source AID. Narratives were thematically analyzed and a coding framework was identified through iterative alignment. RESULTS Improvements in glycemia, physical health, sleep quality, emotional impact on everyday life and quality of life were consistently reported. Knowledge of open-source AID was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. Acquisition of the components to build open-source AID and technical set-up were sometimes problematic. CONCLUSIONS The #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer-support to each other and result in impactful user-driven solutions. Alongside evidence on the safety and efficacy of open-source AID, this qualitative analysis helps understand how patients’ experience and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes. INTERNATIONAL REGISTERED REPORT RR2-10.2196/15368

Objective: Type 1 diabetes is associated with increased prevalence of individual categories of mental disorders. We aimed to systematically synthesise the prevalence of all the different categories of mental disorders to estimate the overall burden of psychiatric morbidity in the type 1 diabetes population. Method: The electronic database of OVID was searched, and retrieved papers were screened for eligibility by two independent reviewers. Data were extracted using a standardised data extraction form and the quality of included papers was assessed. Where possible, comparisons with control groups without type 1 diabetes were made. Prevalence data were synthesised into Diagnostic and Statistical Manual of Mental Disorders version 5 categories, a narrative data-synthesis, and a subsequent meta-analysis where possible was conducted for mental disorder categories. Results: Thirty-eight articles were included. Depressive, anxiety, and feeding and eating disorders were the most examined mental disorders. Studies utilising diagnostic interviews reported higher prevalence of mental disorders than in studies utilising clinical registers, with an up to 24-fold difference respectively. In studies with a control group, the prevalence for nearly every mental disorder were increased for the type 1 diabetes samples. Conclusions: There appears to be a high prevalence of mental disorders and associated need among people with type 1 diabetes, although the quality of research needs to improve. Systematic review registration: This protocol was submitted for registration with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42020221530).

Objectives Diabetes technology provides people with diabetes with new opportunities, but the transformations allowed by new technology do not necessarily provide improvements in clinical metrics applied in diabetes care. This study seeks to understand how everyday life impacts on the way people use diabetes technology and how this influences diabetes care. Methods Individual semi-structured qualitative interviews with 21 adults with type 1 diabetes treated with insulin pumps were recruited from two Danish diabetes outpatient clinics. Data were analyzed abductively and interpreted according to predetermined and emergent perspectives. Results Transformations in care practices derived from new technological therapies were generally well-supported by healthcare providers, but adaptation to everyday life was often challenging. More advanced technology enabled people to better control diabetes, but the control they sought was defined by individual life experiences/factors. Work involved in controlling blood glucose could cause a sense of feeling controlled by diabetes in everyday life. Discussion Everyday life with diabetes is often characterized by uncertainty and individual coping strategies are imbued with values that extend beyond purely clinical concerns and reflect the sociality of everyday life. The social values influencing individual decision-making regarding diabetes technology could be effectively expanded and enhanced with integrated peer-supported learning.

Background: Given the limitations in access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular amongst people with diabetes, including children and adolescents. This study focused on lived experiences, physical and emotional health implications of children and their caregivers following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored by the existing literature. Methods: Qualitative data were collected through two sets of open-ended questions of a web-based multinational study survey from 60 caregivers of children with diabetes from 16 countries. The narratives were thematically analysed and a coding framework was identified through an iterative process after the alignment discussions among three coders. Results: A range of emotions, improvements of quality of life and physical health were reported as open-source AID enabled the families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycaemia at night-time and outside of their family home, leading to increased autonomy for the child. Simultaneously, glycaemic outcomes and sleep quality of both child and caregiver improved. Nonetheless, the acquisition of suitable hardware and technical set-up could be challenging. The #WeAreNotWaiting community was the primary source of practical but also emotional support. Conclusion: Our findings show the benefits and transformative impact open-source AID and peer-support have on children with diabetes, their caregivers, and families, where commercial AID systems are not available or suitable. Further efforts are required to improve effectiveness, usability, and facilitate access for children with diabetes worldwide to benefit from this innovative treatment. Funding: European Commission (H2020-MSCA-RISE-2018), Berlin Institute of Health Digital Clinician Scientist and SPOKES Wellcome Trust Translational Partnership Program. Declaration of Interest: KB received fees for medical consulting and public speaking from Roche Diabetes Care, Dexcom, Medtronic Diabetes, Diabeloop, Novo Nordisk, Sanofi Diabetes and BCG Digital Ventures; outside the submitted work. KR received fees for medical consulting and public speaking from Dexcom, Abbott, Lilly Diabetes Care, Novo Nordisk (Germany) and Springer Healthcare UK; outside the submitted work. All other authors have nothing to disclose. Ethical Approval: Ethical approval was provided by Charite – Universitatsmedizin Berlin (EA2/140/18).

Background: Open-source automated insulin delivery (AID) systems have shown to be safe and effective in clinical and real-world studies and to increase quality of life (QoL) in adult users. However, there is a lack of evidence on the effect on health-related QoL and general wellbeing in children and their caregivers. Therefore, the aim of this study was to assess the QoL of children and adolescents with diabetes using open-source AID systems using validated measures. Method: In this cross-sectional, population-based global online survey we examined the caregiver-reported QoL and psychological well-being of users and non-users of open-source AID. Validated questionnaires assessed general emotional wellbeing (WHO-5 Well-being Index) , diabetes-specific QoL (Problem Areas in Diabetes Survey - Parent Revised version (PAID-PR) , Pediatric Quality of Life Inventory (PedsQL, diabetes module) and subjective sleep quality (Pittsburgh Sleep Quality Index (PSQI)) . Results: In total 188 caregivers from 27 countries completed at least one questionnaire on behalf of their children, including 132 children with type 1 diabetes using open-source AID (mean age 11.5 (SD 3.5) , 48% female) and 56 children with type 1 diabetes who were non-users at the time of the survey (mean age 10.4 (SD 3.3) , 41% female) . All questionnaire scores showed significant between-group differences with the AID users reporting higher general (WHO-5: p Discussion: The results show the beneficial impact that open-source AID systems have on the QoL and psychological well-being of children and adolescents, and can therefore help to inform academia, regulatory decision- and policymakers about the potential that open-source AID systems hold. Further research is needed to examine the reasons for the differences between the groups. Disclosure C.Knoll: None. K.Raile: Other Relationship; Dexcom, Inc. K.Braune: None. H.Ballhausen: None. J.Schipp: None. T.C.Skinner: None. M.Wäldchen: None. S.O'donnell: None. K.A.Gajewska: None. B.Cleal: None. Funding European Commission's Horizon 2020 Research and Innovation Program under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange (RISE) (grant agreement number 823902)

Background: Use of open-source automated insulin delivery (AID) is associated with improved psychosocial outcomes among people with type 1 diabetes (T1D) . However, research to date has been qualitative or used study-specific single items. There is a need for quantitative research using validated measures in larger samples. Method: We conducted an international online survey to examine the psychosocial outcomes of open-source AID users and non-users. Validated questionnaires assessed diabetes-specific quality of life (QoL) , impact of the COVID-pandemic on diabetes-specific QoL, diabetes specific-positive well-being, diabetes treatment satisfaction, diabetes distress, fear of hypoglycaemia, general emotional well-being, and subjective sleep quality. Results: 587 participants completed at least one questionnaire, including 447 adults using open-source AID (mean age 43, 42% women) and 140 non-users (mean age 40, 64% women) . Table 1 shows significant between-group differences for all questionnaire scores. Discussion: Adults with T1D using open-source AID report significantly better psychosocial outcomes than non-users. Due to the cross-sectional design of this study, we cannot make any causal inferences about the use of these devices. Further research is needed to examine the reasons for these differences. Disclosure J.Schipp: None. T.C.Skinner: None. J.Speight: Advisory Panel; Insulet Corporation, Research Support; Novo Nordisk, Sanofi. C.Hendrieckx: None. K.Braune: None. S.O'donnell: None. H.Ballhausen: None. B.Cleal: None. M.Wäldchen: None. C.Knoll: None. K.A.Gajewska: None. Funding European Commission Horizon 2020 (823902)

Open-source automated insulin delivery (AID) systems have shown to be safe and effective in children and adolescents with type 1 diabetes (T1D) in real-world studies. However, there is a lack of evidence on the effect on their and their caregivers' quality-of-life (QoL) and well-being. The aim of this study was to assess the QoL of caregivers and children and adolescents using open-source AID systems using validated measures.In this cross-sectional online survey we examined the caregiver-reported QoL and well-being of users and non-users. Validated questionnaires assessed general well-being (WHO-5), diabetes-specific QoL (PAID, PedsQL) and sleep quality (PSQI).168 caregivers from 27 countries completed at least one questionnaire, including 119 caregivers of children using open-source AID and 49 not using them. After inclusion of covariates, all measures but the PAID and one subscale of the PedsQL showed significant between-group differences with AID users reporting higher general (WHO-5: p=0.003), sleep-related (PSQI: p=0.001) and diabetes-related QoL (PedsQL: p0.05).The results show the potential impact of open-source AID on QoL and psychological well-being of caregivers and children and adolescents with T1D, and can therefore help to inform academia, regulators, and policymakers about the psychosocial health implications of open-source AID.

BACKGROUND Given the limitations in the access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular among people with diabetes, including children and adolescents. OBJECTIVE This study aimed to investigate the lived experiences and physical and emotional health implications of children and their caregivers following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored in the existing literature. METHODS Data were collected through 2 sets of open-ended questions from a web-based multinational survey of 60 families from 16 countries. The narratives were thematically analyzed, and a coding framework was identified through iterative alignment. RESULTS A range of emotions and improvements in quality of life and physical health were reported, as open-source AID enabled families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycemia at night and outside their family homes, leading to increased autonomy for the child. Simultaneously, the glycemic outcomes and sleep quality of both the children and caregivers improved. Nonetheless, the acquisition of suitable hardware and technical setup could be challenging. The #WeAreNotWaiting community was the primary source of practical and emotional support. CONCLUSIONS Our findings show the benefits and transformative impact of open-source AID and peer support on children with diabetes and their caregivers and families, where commercial AID systems are not available or suitable. Further efforts are required to improve the effectiveness and usability and facilitate access for children with diabetes, worldwide, to benefit from this innovative treatment. INTERNATIONAL REGISTERED REPORT RR2-10.2196/15368

Social media is an important source of social connection and information acquisition for young people with Type 1 diabetes. This study explores young people with Type 1 diabetes’ online experiences and the impact it has on mental wellbeing. Young people (N=19) with Type 1 diabetes and professional/family caregivers (N=8) took part in online mini-focus groups or an online interview. Thematic analysis was used to analyse the data. All participants reflected on social media’s capacity to facilitate accessible peer learning and emotional support. However, remaining themes for young people with Type 1 diabetes focused on the emotional resonance of diabetes content, which includes the emotional demand of perceiving new products and diets, witnessing diabetes stigma online, and perceiving ‘filtered’ peer profiles. Meanwhile, professional and family caregiver themes focused on the accuracy and trustworthiness of diabetes content. Authenticity was perceived differently between the two participant cohorts. While caregivers perceive that young people often find it difficult to be open about their condition online, young people with Type 1 diabetes value the autonomy that social media provides to choose how and what they engage with online. This study is reflective of the paradoxical nature of social media as a tool which can nourish or challenge psychological wellbeing in young people with Type 1 diabetes. Young people are aware of the nature of the content they perceive, but the task of navigating through less helpful content is emotionally demanding. Co-designing tools to address this emotional burden is discussed in reflection of the findings.

Background In the past decades, behavioral medicine has attained global recognition. Due to its global reach, a critical need has emerged to consider whether the original definition of behavioral medicine is still valid, comprehensive, and inclusive, and to reconsider the main tasks and goals of the International Society of Behavioral Medicine (ISBM), as the umbrella organization in the field. The purpose of the present study was to (i) update the definition and scope of behavioral medicine and its defining characteristics; and (ii) develop a proposal on ISBM’s main tasks and goals. Method Our study used the Delphi method. A core group prepared a discussion paper. An international Delphi panel rated questions and provided comments. The panel intended to reach an a priori defined level of consensus (i.e., 70%). Results The international panel reached consensus on an updated definition and scope of behavioral medicine as a field of research and practice that builds on collaboration among multiple disciplines. These disciplines are concerned with development and application of behavioral and biomedical evidence across the disease continuum in clinical and public health domains. Consensus was reached on a proposal for ISBM’s main tasks and goals focused on supporting communication and collaboration across disciplines and participating organizations; stimulating research, education, and practice; and supporting individuals and organizations in the field. Conclusion The consensus on definition and scope of behavioral medicine and ISBM’s tasks and goals provides a foundational step toward achieving these goals.

Background The number of people of working age suffering from chronic disease is increasing. Chronic diseases such as diabetes can cause negative work-related consequences in the form of early retirement or absenteeism. Providing flexible workplace accommodations may enable the person with diabetes to retain their position in the labor market. However, the successfulness of such accommodations depends largely on the perceptions of those not suffering from diabetes. The purpose of this study was to examine preferences of a population of workers in Denmark for flexibility at the workplace, for people with diabetes and for people with chronic disease in general, measured as their willingness to pay (WTP). Methods Respondents were drawn from online panels and randomized to answer an online survey regarding flexibility at the workplace for people with diabetes or chronic disease in general. One thousand one hundred and three respondents were included in the analysis. Based on discrete choice experiments included in the survey, we analyzed WTP for five flexibility attributes: part-time, customizing job description, additional break with pay and time off for medical visits with and without pay. We further examined perceptions of the employer’s responsibility to ensure workplace flexibility for five different specific chronic diseases including diabetes. Finally, we analyzed differences in WTP for flexibility across subgroups. Results Respondents’ WTP was significantly higher for chronic disease in general compared to diabetes for the possibility of part-time (81€/month vs. 47€/month, p

Aims The aim was to understand diabetes-related barriers and successes that people with diabetes (PWD) have in the context of work outside the home. Methods The DAWN2 survey of adults with type 1 or type 2 diabetes mellitus contained open-ended items about living with diabetes. All responses to these questions were reviewed and references to worklife were extracted for analysis. An emergent coding schema was developed and validated by two independent coders (kappa = 0.875). Results In total, 328 PWD wrote about work, 93 (28%) with type 1 and 235 (72%) with type 2, of whom 90 took insulin. Analysis generated five themes: (1) Work as context for learning about diabetes; (2) Work as an arena for personal achievement and self-identity with diabetes; (3) The demands of work conflict with the demands of diabetes self-care; (4) Discrimination and stigma in the context of work; and (5) Social support in the context of work. Several of these themes identify challenges relating to the impact of diabetes upon work, and vice-versa. However, coping strategies and supportive social relations generated affirmative psychosocial experiences. Conclusion The challenges that diabetes, its treatment, and its complications can have for working adults highlights the importance of social support in the work environment.

OBJECTIVES: This study aimed to (i) estimate working life expectancies (WLE) and the number of working years lost (WYL) among individuals with type 1 and type 2 diabetes over a 30-year period and (ii) identify educational differences in WLE and WYL. METHODS: Individuals aged 18–65 years diagnosed with type 1 (N=33 188) or type 2 diabetes (N=81 930) in 2000–2016 and age- and gender-matched controls without diabetes (N=663 656) were identified in Danish national registers. WLE in years were estimated as time in employment from age 35–65 years. We used a life-table approach with multi-state (eg, disability pension, sickness absence, unemployment) Cox proportional hazard modeling. Analyses were performed separately for sex, cohabitation status, educational duration, and type of diabetes. Inverse probability weights accounted for differences between populations. RESULTS: People with diabetes had significantly shorter WLE and greater WYL compared to people without diabetes over the 30-year span. At age 35, cohabitant women with lower education and diabetes lost up to 8.0 years [95% confidence interval (CI) 5.0–11.0] and men 7.0 years (95% CI 4.0–8.7). WYL among women with higher education was 4.4 (95% CI 6.6–2.3) and 3.7 years among men (95% CI 1.5–4.5). Compared to people with type 2 diabetes, those with type 1 spend significantly more years in disability pension, but there were no significant differences in the other WYL estimates. CONCLUSIONS: The WYL among people with diabetes is substantial and characterized by social disparities. The WYL help identify intervention targets at different ages, types of diabetes, sex, educational and cohabitant status.

BACKGROUND Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular. OBJECTIVE This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID. METHODS A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes. RESULTS Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child’s sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child’s life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; PP CONCLUSIONS These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems. CLINICALTRIAL INTERNATIONAL REGISTERED REPORT RR2-10.2196/15368

Background Although diabetes is among the most common causes of lifelong disability, no studies have yet outlined work disability from a life course perspective. This study estimated the number of years people with type 1 and type 2 diabetes lost in a work life span compared to people without diabetes Methods Individuals aged 18-65 years, diagnosed with type 1 (n = 33,188) or type 2 diabetes (n = 81,930) were identified from national registers from the entire Danish population and age and gender matched with controls without diabetes (n = 663,656), for period 2000-2017. WLE in years were estimated as time in employment from age 35 to 65. We used a life table approach with multi-state Cox proportional hazard modelling (95% Confidence Intervals: CI). Age was the underlying time-axis. Inverse probability weights accounted for differences between populations. Analyses were performed separately for sex, educational status, and types of diabetes in 5-year age intervals. Results Individuals with type 1 diabetes and type 2 diabetes had significantly shorter WLE compared to people without diabetes in the 30-year span. Type 1 diabetes: WLE ranged from 8 years shorter among women with short education [-8.0; CI:-11/-5.0] to 4 years shorter [-4.4; CI:-6.6/-2.3] with high education; WLE in men ranged from -6.4 [CI:-8.7/-4.0] with short education to -3.0 [CI:-4.5/-1.5] with high education. Type 2 diabetes: WLE ranged from -6.5 [CI: -8.9/-4.0] in women with short education to -2.9 [CI: -4.5/-1.3] with high education. WLE in men ranged from -7.0 [CI: -9.4/-4.5] with short education to -3.7 [CI: -5.4/-2.0] with high education. Conclusions The substantial number of years lost in a work life span for individuals with type 1 or type 2 diabetes, highlight need for new strategies that prevent work disability, particularly for individuals with short education. Key messages Individuals with type 1 diabetes and type 2 diabetes had between 9 and 3 years shorter work life expectancies compared to people without diabetes in a 30-year span. The work life spans are substantial shorter for individuals with type 1 or type 2 diabetes with short educations.

BACKGROUND There is a growing focus on the potential uses, benefits, and limitations of social media in the context of health care communication. In this study, we have sought to evaluate an initiative pioneered at a hospital in Denmark that uses Facebook to support and enhance patient-provider communication about diabetes. OBJECTIVE This paper aims to evaluate the success of the trial according to its initial objectives and to assess its potential scalability. METHODS The study was undertaken in a clinic for diabetes and hormonal diseases at a large regional hospital in Denmark. Using a realist evaluation approach, we identified 4 key components in the program theory of the initiative, which we formulated as context-mechanism-outcome configurations (eg, complex and iterative chains of causality). These configurations informed data gathering and analysis. Primary data sources were the activity and content in the Facebook group, in the form of posts, likes, and comments, and interviews with patients (n=26) and staff (n=6) at the clinic. RESULTS New developments in diabetes technology were the most popular posts in the forum, judged by number of likes and comments. Otherwise, information specific to the clinic received the most attention. All 4 components of the program theory were compromised to varying degrees, either as a result of failings in the anticipated mechanisms of change or contextual factors derived from the mode of implementation. CONCLUSIONS Social media serves well as a conduit for imagining positive change, but this can be a strength and weakness when attempting to enact change via concrete interventions, where stakeholder expectations may be unreasonably high or incompatible. Nonetheless, such initiatives may possess intangible benefits difficult to measure in terms of cost-effectiveness.

Background: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyper- and hypoglycaemia, but are not universally available, accessible, and affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular. Methods: This study investigated motivations why people with diabetes or their caregivers decide to build and use a personalised open-source AID. A cross-sectional online survey was conducted to assess personal motivations and associated self-reported clinical outcomes. Findings: Of 897 participants from 35 countries, 80·4% were adults with diabetes and 19·6% were caregivers of children with diabetes. Primary motivations to commence open-source AID included: improving glycaemic outcomes (94% of adults, 95% of caregivers), reducing acute (87%/96%) and long-term (83%/91%) complication risk, interacting less frequently with diabetes technology (81%/76%), improving their/child’s sleep quality (72%/80%), increasing their/child’s life expectancy (72%/85%), lack of commercially available AID systems (71%/70%), and unachieved therapy goals with available therapy options (68%/69%). Improving their own sleep quality was an almost universal motivator for caregivers (94%). Significant improvements, independent of age and gender, were observed in self-reported HbA1C, 7·14±1·13% (54·5±12·4 mmol/mol) to 6·24±0·64% (44·7±7·0 mmol/mol; p

Objective To examine the prospective relation between effort-reward imbalance at work and risk of type 2 diabetes. Methods We included 50,552 individuals from a national survey of the working population in Denmark, aged 30–64 years and diabetes-free at baseline. Effort-reward imbalance was defined, in accordance with the literature, as a mismatch between high efforts at work (e.g. high work pace, time pressure), and low rewards received in return (e.g. low recognition, job insecurity) and assessed as a continuous and a categorical variable. Incident type 2 diabetes was identified in national health registers. Using Cox regression we calculated hazard ratios (HR) and 95% confidence intervals (95% CI) for estimating the association between effort-reward imbalance at baseline and risk of onset of type 2 diabetes during follow-up, adjusted for sex, age, socioeconomic status, cohabitation, children at home, migration background, survey year and sample method. Results During 136,239 person-years of follow-up (mean = 2.7 years) we identified 347 type 2 diabetes cases (25.5 cases per 10,000 person-years). For each one standard deviation increase of the effort-reward imbalance score at baseline, the fully adjusted risk of type 2 diabetes during follow-up increased by 9% (HR: 1.09, 95% CI: 0.98–1.21). When we used effort-reward imbalance as a dichotomous variable, exposure to effort-reward imbalance was associated with an increased risk of type 2 diabetes with a HR of 1.27 (95% CI: 1.02–1.58). Conclusion The results of this nationwide study of the Danish workforce suggest that effort-reward imbalance at work may be a risk factor for type 2 diabetes.

Aim To evaluate labour market outcomes in type 1 or type 2 diabetes. Methods Individuals with type 1 (n = 431) and type 2 diabetes (n = 4047) were identified in Danish national registers from 1994 to 2011 and compared with individuals without diabetes (n = 101 295). Multi-state Cox proportional hazards analyses estimated hazard ratios (HR) with 95% confidence intervals (CI) for transitions between work, sickness absence, unemployment and disability pension. Results We observed significantly higher HR of sickness absence in type 1 diabetes (women: 1.34, 95% CI 1.12-1.62; men: 1.43, 1.01-2.03) and type 2 diabetes (women: 1.46, 95% CI 1.35-1.58; men: 1.64, 1.46-1.85) compared with people without diabetes. HR of unemployment was higher for men with type 1 diabetes (1.25, 95% CI 1.01-1.53) and women with type 2 diabetes (1.09, 95% CI 1.03-1.16) and men with type 2 diabetes (1.17, 95% CI 1.08-1.27). HR of disability pension was higher in type 1 diabetes (women: 1.90, 95% CI 1.46-2.46; men: 2.09, 1.38-3.18) and type 2 diabetes (women: 1.78, 95% CI 1.62-1.96; men: 2.11, 1.86-2.40). Only women with type 2 diabetes were less likely to return to work from sickness absence (HR 0.91, 95% CI 0.86-0.98) or unemployment (0.89, 95% CI 0.85-0.94). We found no significant difference between the two types of diabetes. Hazard ratios for diabetes regarding unemployment, sickness absence while unemployed and disability pension were significantly higher for men than for women. Conclusions Both type 1 and type 2 diabetes affect labour market outcomes, but future studies should also consider comorbidity and social gradient.

Objective To investigate the relation between effort‐reward imbalance (ERI) at work and subsequent weight changes. Methods We included participants from a population‐based cohort of workers in Denmark (mean age = 47 years, 54% women) with two (n = 9005) or three repeated measurements (n = 5710). We investigated the association between (a) ERI (ie, the mismatch between high efforts spent and low rewards received at work) at baseline and weight changes after a 2‐year follow‐up (defined as ≥5% increase or decrease in body mass index (BMI) vs stable), and (b) onset and remission of ERI and subsequent changes in BMI. Using multinomial logistic regression we calculated risk ratios (RR) and 95% confidence intervals (CI), adjusted for sex, age, education, cohabitation, migration background, and follow‐up time. Results After 2 years, 15% had an increase and 13% a decrease in BMI. Exposure to ERI at baseline yielded RRs of 1.09 (95% CI: 0.95‐1.25) and 1.04 (95% CI: 0.90‐1.20) for the increase and decrease in BMI, respectively. There were no differences between sex and baseline BMI in stratified analyses. The onset of ERI yielded RRs of 1.04 (95% CI: 0.82‐1.31) and 1.15 (95% CI: 0.84‐1.57) for subsequent increase and decrease in BMI. The RRs for the remission of ERI and subsequent increase and decrease in BMI were 0.92 (95% CI: 0.71‐1.20) and 0.78 (95% CI: 0.53‐1.13), respectively. Of the ERI components, high rewards were associated with a lower risk of BMI increase. Conclusion ERI was not a risk factor for weight changes. Future studies may investigate whether this result is generalizable to other occupational cohorts and settings.

Aim To explore factors associated with non-disclosure of Type 2 diabetes to employers among Danish workers with Type 2 diabetes. Methods A total of 705 workers with Type 2 diabetes completed a Danish cross-sectional survey. Logistic regression models were used to estimate the associations between background characteristics and probability of non-disclosure of diabetes to the employer. The models were mutually adjusted for background characteristics, socioeconomic-, diabetes- and work-related factors. Results Among the participants, 23% had not disclosed their Type 2 diabetes to their current employer. Non-disclosure was associated with more sickness absence, more years with diabetes, greater use of diabetic medication, higher educational level and a perception of not being respected by superior. Personal traits such as gender, age and well-being were not associated with disclosure. Conclusions Among the feasible targets for interventions, good psychosocial work environment was associated with disclosure. This article is protected by copyright. All rights reserved.

BACKGROUND Digital innovations in health care have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end product. However, user-driven open-source initiatives in health care are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own “Do-It-Yourself Artificial Pancreas Systems” (DIYAPS). OBJECTIVE The overall aim of this study is to establish the empirical evidence base for the clinical effectiveness and quality-of-life benefits of DIYAPS and identify the challenges and possible solutions to enable their wider diffusion. METHODS A research program comprising 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used to examine clinical and self-reported outcome measures of DIYAPS users. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users, making Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology (OPEN) a unique, user-driven research project. RESULTS This project has received funding from the European Commission’s Horizon 2020 Research and Innovation Program, under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange. Researchers with both academic and nonacademic backgrounds have been recruited to formulate research questions, drive the research process, and disseminate ongoing findings back to the DIYAPS community and other stakeholders. CONCLUSIONS The OPEN project is unique in that it is a truly patient- and user-led research project, which brings together an international, interdisciplinary, and intersectoral research group, comprising health care professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus, it directly addresses the core research and user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry, and the patient community can create patient-centric innovation and reduce disease burden together. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/15368

Objective: Little is known about why PwD leave traditional pathways and turn to DIY technology. This study aims to examine the motivations of Do-it-Yourself Artificial Pancreas System (DIYAPS) users and caregivers to build and maintain these systems. Methods: An online survey with 34 items was distributed to DIYAPS users and caregivers of children with DIYAPS through Facebook (“Looped” and regional subgroups) and Twitter (Diabetes Online Community). Results: 1058 participants from 34 countries responded to the survey. The majority were adult users (80.2%; 43% female; median age 41 years) with T1D (98.9%) for 25.2 years ±13.3. 19.8% were caregivers of children (47.4% female; median age 10 years) with T1D (99.4%) for 5.1 years ±3.9. With 10.1m ±17.6 on DIYAPS, HbA1c improved from 7.07% ±1.07 to 6.24% ±0.68 %. Time in Range improved from 63.21% ±16.27 to 83.07% ±10.11. Additional out-of-pocket costs of 712 USD/year were spent. Motivations to build a DIYAPS are shown in Fig.1. Conclusions: Improved glycemic control, need for an ‘autopilot’ and less acute and long-term complications were key motivations in both groups; as well as better sleep for caregivers. Users were also able to access and afford the required tools. These results may provide a better understanding of unmet needs of PwD and current challenges to uptake, in order to facilitate the involvement of patient-led and open source approaches in healthcare. Disclosure K. Braune: Advisory Panel; Self; Medtronic MiniMed, Inc. Speaker’s Bureau; Self; Dexcom, Inc. S. O’Donnell: None. B. Cleal: None. D.M. Lewis: Consultant; Self; Diabeloop SA, Roche Diabetes Care. A. Tappe: Consultant; Self; IME-DC GmbH. Employee; Self; Hi.health, Gruber-Debong GmbH. Speaker’s Bureau; Self; Dexcom, Inc., Roche Diabetes Care, Ypsomed AG. Other Relationship; Self; SOOIL Developments Co., Ltd. B. Hauck: Consultant; Self; Bayer AG, Eli Lilly and Company, LifeScan, Inc., Novo Nordisk A/S, Roche Diabetes Care, Roche Pharma. I. Willaing: None. R. Scibilia: Speaker’s Bureau; Self; Roche Diabetes Care. E. Rowley: None. W. Ko: None. G. Doyle: None. T.C. Skinner: None. K. Raile: Advisory Panel; Self; Abbott, Lilly Diabetes. Funding European Union

Background and Aim: Diabetes has been associated with considerable work disability, but different risks of disability have not been assessed systematically among people with type 1 (T1D) and type 2 diabetes mellitus (T2D). This study evaluated risks of long-term sickness absence (LTSA), unemployment, return to work and disability pension in individuals with T1D or T2D. Method: We observed individuals with T1D (n=431), T2D (n=4,047) and without diabetes (n=101,295) in Danish national registers of health, work and social benefits from 1994 -2011. In a multi-state model, Cox proportional analyses estimated hazard ratios (95% Confidence Intervals) of each transition between work, LTSA, unemployment and disability pension. Analyses were performed separately for men and women. Results: Compared to people without diabetes, women and men with T1D and T2D had significantly higher hazard ratios of LTSA and disability pension (Table 1). Except for women with T1D we observed significantly higher risks of unemployment. Women with T2D had significantly lower chances of returning to work from LTSA or unemployment. Conclusions: People with T1D and T2D have elevated risks of temporary and permanent work disability. Future studies should include all work-related outcomes to avoid underestimating the burden of living with T1D and T2D. Disclosure M.A. Nexo: None. J. Pedersen: None. B. Cleal: None. J.B. Bjorner: Employee; Self; Optum Patient Insights.

There is currently a wave of interest in Do-it-Yourself Artificial Pancreas Systems (DIYAPS) but knowledge about how the use of these systems impacts on the lives of those that develop and use them remains limited. Until now, only a select few have been able to give voice to their experiences in a research context. In this study we present data that addresses this shortcoming, detailing the lived experiences of people using DIYAPS in an extensive and diverse way. An online survey with 34 items was distributed to DIYAPS users recruited through the Facebook groups “Looped” (and regional sub-groups) and Twitter pages of the Diabetes Online Community (DOC). Participants were posed two open-ended questions in the survey, where personal DIY APS stories were garnered; including knowledge acquisition, decision-making, support and emotional aspects in the initiation of DIY APS, perceived changes in clinical and quality of life (QoL) outcomes after initiation and difficulties encountered in the process. All answers were analysed using thematic content analysis. In total, 886 adults responded to the survey and there were a combined 656 responses to the two open-ended items. Knowledge of DIYAPS was largely obtained via exposure to the communication fora that constitute the DOC. The DOC was also a primary source of practical and emotional support. Dramatic improvements in clinical and QoL outcomes were consistently reported. The emotional impact on everyday life was overwhelmingly positive. Acquisition of the requisite devices to initiate DIYAPS was sometimes problematic. The extensive testimony from users of DIYAPS acquired in this study provides new insights regarding the contours of this evolving phenomenon, highlighting factors inspiring people to adopt such solutions and underlining the transformative impact effective closed-loop systems bring to bear on the everyday lives of people with diabetes. Disclosure B. Cleal: None. K. Braune: Advisory Panel; Self; Medtronic MiniMed, Inc. Speaker’s Bureau; Self; Dexcom, Inc. S. O’Donnell: None. B. Hauck: Consultant; Self; Bayer AG, Eli Lilly and Company, LifeScan, Inc., Novo Nordisk A/S, Roche Diabetes Care, Roche Pharma. D.M. Lewis: Consultant; Self; Diabeloop SA, Roche Diabetes Care. T.C. Skinner: None. K. Raile: Advisory Panel; Self; Abbott, Lilly Diabetes.

BACKGROUND Patient-driven initiatives have made uptake of Do-it-Yourself Artificial Pancreas Systems (DIYAPS) increasingly popular amongst people with diabetes of all ages. Observational studies show improvements in glycemic control and quality of life amongst adults. However, there remains a lack of research examining experiences of children and adolescents with DIYAPS in everyday life and their social context. OBJECTIVE This study assesses self-reported clinical outcomes of the pediatric population using DIYAPS in real-world use. METHODS An online survey was distributed to caregivers, assessing HbA1c and Time in Range (TIR) before and after, and problems during DIYAPS use. RESULTS 209 caregivers from 21 countries responded. Children were 47.4% female with a median age of 10y; a mean diabetes duration of 5.1y ±3.9 and 10.3m ±10.0 experience with DIYAPS. Clinical outcomes improved significantly, including HbA1c (from 6.91% ±0.88 to 6.27% ±0.67; P CONCLUSIONS Improved glycemic outcomes were found across all pediatric age groups including adolescents and very young children. These findings are in line with clinical trial results from commercially developed closed-loop systems. CLINICALTRIAL The study was approved by the Charité ethics committee (EA2/140/18).

For people with type 1 diabetes, extensive tasks involved in diabetes self-management have a significant impact on overall care and quality of life. Members of the working population with type 1 diabetes spend one third of their time at work, yet little attention has been paid to challenges specific to balancing diabetes management and work life. Diabetes is associated with increased absenteeism and presenteeism, as well as disability retirement and lower lifetime income. These quantitative outcomes are corroborated by qualitative studies highlighting some of the challenges of reconciling diabetes self-management with work life. This qualitative study expands on previous research by examining illness behavior in work life using Alonzo's concept of containment. Forty in-depth interviews with Danish people with type 1 diabetes were conducted from May to December 2016 and analyzed using abductive reasoning. We found that working people with type 1 diabetes live in tension between competing logics linked to diabetes and to work life. We illustrate how diabetes management can be articulated as a matter of containment, which refers to the assemblage of practices and mental and emotional work required to keep diabetes at the level of a side-involvement and maintain proper situational involvement in work life. The containment framework illuminates and characterizes diabetes management in the context of work life and reveals a hidden burden of disease carried by working people with type 1 diabetes. Further research is needed to advance the theory of containment.

AimsTo assess the socio-economic distribution of comorbid depression and diabetes among the Danish workforce using national registry data.MethodsUsing national registers, all eligible Danish adults aged 18–59 years on 1 January 1996 were followed until 31 December 2010. Diabetes status was obtained from the Danish National Diabetes Register and information on purchase of prescription antidepressants from the Register of Medicinal Product Statistics. Data were also obtained on people's occupational status and gross annual income. The people included in the study were stratified according to their highest occupational group during the study period. Annual incomes were adjusted to 2013 levels and, using the distribution of the study population's incomes, we stratified participants into income quintiles.ResultsA total of 3 434 420 individuals met the inclusion criteria at baseline, with 98 006 developing diabetes during follow-up. There were 603 498 new prescriptions of antidepressants during follow-up; 19 849 (20.3%) among people with diabetes and 583 649 (17.5%) among those without. People with diabetes in all income quintiles (risk ratio 1.65; 95% CI 1.62–1.67) and all occupational groups (risk ratio 1.70; 95% CI 1.68– 1.73) had a significantly elevated risk compared with the general population. Risk ratios were significantly higher among the lowest occupational groups and income quintiles.ConclusionOur results provide robust data underlining the associations between diabetes, depression and socio-economic status. They highlight and encourage further focus on the issue of comorbid diabetes and depression, particularly among the most disadvantaged.

Background There is a growing focus on the potential uses, benefits, and limitations of social media in the context of health care communication. In this study, we have sought to evaluate an initiative pioneered at a hospital in Denmark that uses Facebook to support and enhance patient-provider communication about diabetes. Objective This paper aims to evaluate the success of the trial according to its initial objectives and to assess its potential scalability. Methods The study was undertaken in a clinic for diabetes and hormonal diseases at a large regional hospital in Denmark. Using a realist evaluation approach, we identified 4 key components in the program theory of the initiative, which we formulated as context-mechanism-outcome configurations (eg, complex and iterative chains of causality). These configurations informed data gathering and analysis. Primary data sources were the activity and content in the Facebook group, in the form of posts, likes, and comments, and interviews with patients (n=26) and staff (n=6) at the clinic. Results New developments in diabetes technology were the most popular posts in the forum, judged by number of likes and comments. Otherwise, information specific to the clinic received the most attention. All 4 components of the program theory were compromised to varying degrees, either as a result of failings in the anticipated mechanisms of change or contextual factors derived from the mode of implementation. Conclusions Social media serves well as a conduit for imagining positive change, but this can be a strength and weakness when attempting to enact change via concrete interventions, where stakeholder expectations may be unreasonably high or incompatible. Nonetheless, such initiatives may possess intangible benefits difficult to measure in terms of cost-effectiveness.

Objective: The psychological dimension of hyperglycemia is poorly investigated. This study explored how individuals with type 2 diabetes (T2D) experienced and responded psychologically to hyperglycemia. Method: From a larger study investigating T2D and work life we purposely selected 7 individual interviews eligible for Interpretative Phenomenological Analysis (IPA). Interviews providing rich and detailed data regarding the subjective experience of hyperglycemia were included. Participants were recruited from a Danish diabetes clinic and had at least 2 years duration of T2D and minimum 1 documented complication. Two researchers independently analyzed each individual case. Contradictions and variations of the analyses were then compared at three levels of analysis: Experiential, linguistic and interpretative. Superordinate themes were developed, if the essence of themes were generalizable across accounts. Results: Three superordinate themes emerged: Theme 1 ’High blood sugar shuts the body down’. Experiences attributed to hyperglycemia were exemplified by body-machine metaphors and conceptualized as recognizable signs of illness inflicting a complete loss of energy, motivation and willpower. Theme 2 ’Cognitive reactions: High blood sugar is my own fault’. The causes of high blood sugar were ascribed negative personality characteristics or poor self-care abilities and threatened the conception of self. Theme 3 ’Emotional distress’. The cognitive reactions triggered a wide range of distressing emotions; mainly shame, guilt and sadness. Conclusion: These results are the first to document the cognitive and emotional responses to hyperglycemia and can potentially inform psychological interventions targeting people with T2D. However, IPA is an idiographic approach generating theory from few homogenous cases and further studies are needed to generalize beyond the individual level. Disclosure M.A. Nexo: None. B. Cleal: None. I. Willaing: None.

AIMS: While workplace wellness services are proactively established to improve well-being and reduce sickness absence, knowledge of reasons for using these services remains sparse. This study investigates which factors determine use of an in-house wellness service at a large organization (the Danish Police) with several departments in different geographical locations.METHODS: All potential users of the Wellness service ( n = 15,284) were invited to respond to a cross-sectional questionnaire. Of 6060 eligible respondents, 58% had used the service at least once (any use) and 17% had used the service at least three times (frequent users). Two items assessed the frequency of statements of justifications for using or not using the Wellness service. Associations between 32 demographic and psychosocial variables and use of the Wellness service were evaluated with unadjusted bivariate logistic regression analyses.RESULTS: The two primary justifications for using the Wellness service were: to get a blood pressure assessment (37%) and to rehabilitate injury (26%). The two most common justifications for not using the Wellness service were: no perceived need (44%) and already physically active (34%). Of the 32 demographical and psychosocial variables included, 28 were associated with any use and 24 with frequent use.CONCLUSIONS: Use of the Wellness service appears to be driven by a complex configuration of factors that resist easy translation into practical advice. Non-participation was accounted for in terms of both positive and negative barriers. Use of the service for purposes of primary prevention and health promotion was, relatively speaking, lagging behind.

Background The increasing number of people with chronic diseases challenges workforce capacity. Type 2 diabetes (T2D) can have work-related consequences, such as early retirement. Laws of most high-income countries require workplaces to provide accommodations to enable people with chronic disabilities to manage their condition at work. A barrier to successful implementation of such accommodations can be lack of co-workers’ willingness to support people with T2D. This study aimed to examine the willingness to pay (WTP) of people with and without T2D for five workplace initiatives that help individuals with type 2 diabetes manage their diabetes at work. Methods Three samples with employed Danish participants were drawn from existing online panels: a general population sample (n = 600), a T2D sample (n = 693), and a matched sample of people without diabetes (n = 539). Participants completed discrete choice experiments eliciting their WTP (reduction in monthly salary, €/month) for five hypothetical workplace initiatives: part-time job, customized work, extra breaks with pay, and time off for medical consultations with and without pay. WTP was estimated by conditional logits models. Bootstrapping was used to estimate confidence intervals for WTP. Results There was an overall WTP for all initiatives. Average WTP for all attributes was 34 €/month (95% confidence interval [CI]: 27–43] in the general population sample, 32 €/month (95% CI: 26–38) in the T2D sample, and 55 €/month (95% CI: 43–71) in the matched sample. WTP for additional breaks with pay was considerably lower than for the other initiatives in all samples. People with T2D had significantly lower WTP than people without diabetes for part-time work, customized work, and time off without pay, but not for extra breaks or time off with pay. Conclusions For people with and without T2D, WTP was present for initiatives that could improve management of diabetes at the workplace. WTP was lowest among people with T2D. Implementation of these initiatives seems feasible and may help unnecessary exclusion of people with T2D from work.

Objective: With previous studies indicating that diabetes affects employment status and life-time earnings, the aim of this study was to determine the impact on earnings in the immediate period after diagnosis. Recognising that earnings and employment status are dynamic over the life course, we matched people with diabetes to counterparts in the general population and compared nominal growth in earned income five calendar years after diagnosis. Research Design and Methods: The study draws upon Danish population registers. Residents aged 25-62 years between 1996 and 2007 were included in the study. We identified an indi-vidually matched control group from approximately 2,800,000 ‘diabetes-free’ Danish adults using propensity score matching. Matching was based on age, gender, residence, earned in-come, growth in earned income, and unemployment in the calendar year before diagnosis.Results: 91,090 people with diabetes were included in the study and matched to 91,090 con-trols in the general population. The analysis revealed highly significant loss of earnings for people with diabetes when compared with people without diabetes, with an overall relative loss of US $ 3,694 (8.01%) among men and US $ 924 (3.03%) among women. The effect was generally largest in the youngest age-group, in lower earners and among men.Conclusions: The results clearly indicate that a diagnosis of diabetes has a significant impact on earnings. Age and earnings at the time of diagnosis appear to play a moderating role.

AimsPeople with diabetes have heightened levels of depressive symptoms, but less is known about the development of these symptoms in relation to diabetes duration. In this study, we examined the use of prescribed antidepressants in the first five years after diagnosis of diabetes among the working-age population in Denmark.MethodsAll Danish adults aged 18–54 years, diagnosed with diabetes in the study period were included. Diabetes status and purchase of prescription antidepressants were obtained from validated population registers. Data analysis focused on filled antidepressant prescriptions at ≤1 and ≤5 years from diagnosis with diabetes.Results35,677 people diagnosed with diabetes were included in the study. At ≤1 year post-diagnosis, 2.6% had filled antidepressant prescriptions. At ≤5 years, this figure rose to 10.4%. Overall, both female gender and lower socioeconomic status were associated with higher incidence of filled antidepressant prescriptions. Diabetes duration modified the degree of differences between men and women and socioeconomic strata.ConclusionDiagnosis with diabetes immediately impacts mental wellbeing, with higher rates of filled antidepressant prescriptions in the first year after diagnosis. People of working age diagnosed with diabetes face specific challenges and addressing such challenges would enhance patient experiences. Focus on mental health in the clinical encounter with people newly diagnosed with diabetes is warranted and important.

Thyroid diseases evoke a complex range of psychological and physical symptoms. The psychosocial aspects of living with diseases causing hypo- or hyperthyroidism are poorly understood. In this article, we report the findings of a qualitative interview study in which we explored the lived experiences of 16 people with hypo- or hyperthyroidism. We purposefully selected participants from Danish outpatient clinics according to their diagnosis (Hashimoto’s thyroiditis or Graves’ disease with or without orbitopathy), age (18 to 65 years), and duration of treatment (more than 6 months). We used interpretative phenomenological analysis (IPA) as a theoretical frame and analytical approach and identified three superordinate themes: losing control over mental and physical states, ambiguous signs of disease, and negotiating sickness. We discuss the findings in the context of the recent literature on chronic illness and argue that these themes play an important role in the conceptualization and management of thyroid diseases.

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient–doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns.