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Contains fulltext : 204698.pdf (publisher's version ) (Open Access)

Contains fulltext : 191063.pdf (Publisher’s version ) (Open Access)

Study Question: What is the recommended assessment and management of women with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise, and consumer preference?. Summary Answer: International evidence-based guidelines including 166 recommendations and practice points, addressed prioritized questions to promote consistent, evidence-based care and improve the experience and health outcomes of women with PCOS. What is Known Already: Previous guidelines either lacked rigorous evidence-based processes, did not engage consumer and international multidisciplinary perspectives, or were outdated. Diagnosis of PCOS remains controversial and assessment and management are inconsistent. The needs of women with PCOS are not being adequately met and evidence practice gaps persist. Study Design, Size, Duration: International evidence-based guideline development engaged professional societies and consumer organizations with multidisciplinary experts and women with PCOS directly involved at all stages. Appraisal of Guidelines for Research and Evaluation (AGREE) II-compliant processes were followed, with extensive evidence synthesis. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation and ultimately recommendation strength. Participants/Materials, Setting, Methods: Governance included a six continent international advisory and a project board, five guideline development groups (GDGs), and consumer and translation committees. Extensive health professional and consumer engagement informed guideline scope and priorities. Engaged international society-nominated panels included pediatrics, endocrinology, gynecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, public health and other experts, alongside consumers, project management, evidence synthesis, and translation

STUDY QUESTION: What is the recommended assessment and management of women with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise and consumer preference? SUMMARY ANSWER: International evidence-based guidelines, including 166 recommendations and practice points, addressed prioritized questions to promote consistent, evidence-based care and improve the experience and health outcomes of women with PCOS. WHAT IS KNOWN ALREADY: Previous guidelines either lacked rigorous evidence-based processes, did not engage consumer and international multidisciplinary perspectives, or were outdated. Diagnosis of PCOS remains controversial, and assessment and management are inconsistent. The needs of women with PCOS are not being adequately met and evidence practice gaps persist. STUDY DESIGN, SIZE, DURATION: International evidence-based guideline development engaged professional societies and consumer organizations with multidisciplinary experts and women with PCOS directly involved at all stages. Appraisal of Guidelines for Research and Evaluation (AGREE) II-compliant processes were followed, with extensive evidence synthesis. The Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation and ultimately recommendation strength. PARTICIPANTS/MATERIALS, SETTING, METHODS: Governance included a six continent international advisory and a project board, five guideline development groups, and consumer and translation committees. Extensive health professional and consumer engagement informed guideline scope and priorities. Engaged international society-nominated panels included pediatrics, endocrinology, gynecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, public health and other experts, alongside consumers, project management, evidence synthesis and translation experts.

Introduction Automated insulin delivery (also known as closed loop, or artificial pancreas) has shown potential to improve glycaemic control and quality of life in people with type 1 diabetes (T1D). Automated insulin delivery devices incorporate an insulin pump with continuous glucose monitoring(CGM) and an algorithm, and adjust insulin in real time. This study aims to establish the safety and efficacy of a hybrid closed-loop (HCL) system in a long-term outpatient trial in people with T1D aged 12 -<25 years of age, and compare outcomes with standard therapy for T1D as used in the contemporary community. Methods and analysis This is an open-label, multicentre, 6-month, randomised controlled home trial to test the MiniMed Medtronic 670G system (HCL) in people with T1D aged 12 -<25 years, and compare it to standard care (multiple daily injections or continuous subcutaneous insulin infusion (CSII), with or without CGM). Following a run-in period including diabetes and carbohydrate counting education, dosage optimisation and baseline glucose control data collection, participants are randomised to either HCL or to continue on their current treatment regimen. The primary aim of the study is to compare the proportion of time spent in target sensor glucose range (3.9-10.0 mmol/L) on HCL versus standard therapy. Secondary aims include a range of glucose control parameters, psychosocial measures, health economic measures, biomarker status, user/technology interactions and healthcare professional expectations. Analysis will be intention to treat. A study in adults with an aligned design is being conducted in parallel to this trial. Ethics and dissemination Ethics committee permissions were gained from respective institutional review boards. The findings of the study will provide high-quality evidence on the role of HCL in clinical practice.

Aims To identify the sociodemographic and clinical correlates of fear of hypoglycaemia among parents of children (aged 4–18 years) with Type 1 diabetes and to examine the relationships between parental fear of hypoglycaemia, mindfulness and mindful parenting. Methods Sociodemographic, self‐reported clinical and psychological data were extracted from the cross‐sectional Diabetes MILES Youth – The Netherlands dataset. Questionnaires included the Hypoglycaemia Fear Survey – Parent Worry (parental fear of hypoglycaemia), the Freiburg Mindfulness Inventory – Short version (mindfulness) and the Interpersonal Mindfulness in Parenting Scale (mindful parenting). Results A total of 421 parents (359 mothers) participated. Hierarchical linear regression analyses showed that greater parental fear of hypoglycaemia was related to younger parental age, low educational level, non‐Dutch nationality, more frequent blood glucose monitoring, and less general mindfulness. Adding mindful parenting to the model negated the previous contribution of general mindfulness. In this model, lower mindful parenting was related to greater parental fear of hypoglycaemia. In particular, parents with an increased ability to be less judgemental of themselves as parents and less reactive to emotions within parenting interactions reported less fear of hypoglycaemia. In total, 21% of the variance in parental fear of hypoglycaemia was explained. Conclusion Parental fear of hypoglycaemia was associated largely with parental characteristics, including non‐modifiable sociodemographics (i.e. age, education, nationality) and modifiable psychological factors (i.e. mindful parenting). These findings suggest that it is important to further explore mindfulness‐based interventions for parents to reduce fear of hypoglycaemia next to interventions to reduce hypoglycaemia.

This study explores the prevalence of, and factors associated with, likely depression and diabetes distress in adults with type 2 diabetes in a large, national sample. Australian National Diabetes Audit data were analysed from adults with type 2 diabetes attending 50 diabetes centres. The Brief Case find for Depression and Diabetes Distress Score 17 were administered to screen for likely depression and diabetes-related distress, respectively. A total of 2,552 adults with type 2 diabetes participated: (mean ± SD) age was 63 ± 13 years, diabetes duration was 12 ± 10 years, and HbA1c was 8 ± 2%. Twenty-nine percent of patients had likely depression, 7% had high diabetes distress, and 5% had both. Difficulty following dietary recommendations, smoking, forgetting medications, and diabetes distress were all associated with greater odds of depression whereas higher own health rating was associated with lower odds (all p < 0.02). Female gender, increasing HbA1c, insulin use, difficulty following dietary recommendations and depression were all associated with greater odds of diabetes distress & older age, higher own health rating and monitoring blood glucose levels as recommended were associated with lower odds (all p < 0.04). Depression was associated with sub-optimal self-care, while diabetes distress was associated with higher HbA1c and sub-optimal self-care.

INTRODUCTION: Manual determination of insulin dosing largely fails to optimise glucose control in type 1 diabetes. Automated insulin delivery via closed-loop systems has improved glucose control in short-term studies. The objective of the present study is to determine the effectiveness of 6 months' closed-loop compared with manually determined insulin dosing on time-in-target glucose range in adults with type 1 diabetes. METHODS AND ANALYSIS: This open-label, seven-centre, randomised controlled parallel group clinical trial will compare home-based hybrid closed-loop versus standard diabetes therapy in Australia. Adults aged ≥25 years with type 1 diabetes using intensive insulin therapy (via multiple daily injections or insulin pump, total enrolment target n=120) will undertake a run-in period including diabetes and carbohydrate-counting education, clinical optimisation and baseline data collection. Participants will then be randomised 1:1 either to 26 weeks of MiniMed 670G hybrid closed-loop system therapy (Medtronic, Northridge, CA, USA) or continuation of their current diabetes therapy. The hybrid closed-loop system delivers insulin automatically to address basal requirements and correct to target glucose level, while bolus doses for meals require user initiation and carbohydrate estimation. Analysis will be intention to treat, with the primary outcome time in continuous glucose monitoring (CGM) target range (3.9-10.0 mmol/L) during the final 3 weeks of intervention. Secondary outcomes include: other CGM parameters, HbA1c, severe hypoglycaemia, psychosocial well-being, sleep, cognition, electrocardiography, costs, quality of life, biomarkers of vascular health and hybrid closed-loop system performance. Semistructured interviews will assess the expectations and experiences of a subgroup of hybrid closed-loop users. ETHICS AND DISSEMINATION: The study has Human Research Ethics Committee approval. The study will be conducted in accordance with the principles of the D

BACKGROUND: Young adults (18-39 years) with type 2 diabetes are at risk of early development and rapid progression of diabetic retinopathy, a leading cause of vision loss and blindness in working-age adults. Retinal screening is key to the early detection of diabetic retinopathy, with risk of vision loss significantly reduced by timely treatment thereafter. Despite this, retinal screening rates are low among this at-risk group. The objective of this study was to develop a theoretically-grounded, evidence-based retinal screening promotion leaflet, tailored to young adults with type 2 diabetes. METHODS: Utilising the six steps of Intervention Mapping, our multidisciplinary planning team conducted a mixed-methods needs assessment (Step 1); identified modifiable behavioural determinants of screening behaviour and constructed a matrix of change objectives (Step 2); designed, reviewed and debriefed leaflet content with stakeholders (Steps 3 and 4); and developed program implementation and evaluation plans (Steps 5 and 6). RESULTS: Step 1 included in-depth qualitative interviews (N = 10) and an online survey that recruited a nationally-representative sample (N = 227), both informed by literature review. The needs assessment highlighted the crucial roles of knowledge (about diabetic retinopathy and screening), perception of personal risk, awareness of the approval of significant others and engagement with healthcare team, on retinal screening intentions and uptake. In Step 2, we selected five modifiable behavioural determinants to be targeted: knowledge, attitudes, normative beliefs, intention, and behavioural skills. In Steps 3 and 4, the "Who is looking after your eyes?" leaflet was developed, containing persuasive messages targeting each determinant and utilising engaging, cohort-appropriate imagery. In Steps 5 and 6, we planned Statewide implementation and designed a randomised controlled trial to evaluate the leaflet. CONCLUSIONS: This research provides an example of a

PURPOSE OF REVIEW: Young adults with type 2 diabetes (T2D, 18-39 years) experience early-onset and rapid progression of diabetic retinopathy (DR), the leading cause of vision loss for working age adults. Despite this, uptake of retinal screening, the crucial first step in preventing vision loss from DR, is low. The aim of this review is to summarize the clinical and psychosocial factors affecting uptake of retinal screening. RECENT FINDINGS: Barriers include lack of diabetes-related symptoms, low personal DR risk perception, high rates of depression and diabetes-related distress, fatalism about inevitability of complications, time and financial constraints, disengagement with existing diabetes self-management services, and perceived stigma due to having a condition associated with older adults. Young adults with T2D are an under-researched population who face an accumulation of barriers to retinal screening. Tailored interventions that address the needs, characteristics, and priorities of young adults with T2D are warranted.

INTRODUCTION: Optimal glycaemia can reduce type 2 diabetes (T2D) complications. Observing retrospective continuous glucose monitoring (r-CGM) patterns may prompt therapeutic changes but evidence for r-CGM use in T2D is limited. We describe the protocol for a randomised controlled trial (RCT) examining intermittent r-CGM use (up to 14 days every three months) in T2D in general practice (GP). METHODS AND ANALYSIS: General Practice Optimising Structured MOnitoring To achieve Improved Clinical Outcomes is a two-arm RCT asking 'does intermittent r-CGM in adults with T2D in primary care improve HbA1c?' PRIMARY OUTCOME: Absolute difference in mean HbA1c at 12 months follow-up between intervention and control arms. SECONDARY OUTCOMES: (a) r-CGM per cent time in target (4-10 mmol/L) range, at baseline and 12 months; (b) diabetes-specific distress (Problem Areas in Diabetes). ELIGIBILITY: Aged 18-80 years, T2D for ≥1 year, a (past month) HbA1c>5.5 mmol/mol (0.5%) above their individualised target while prescribed at least two non-insulin hypoglycaemic therapies and/or insulin (therapy stable for the last four months). Our general glycaemic target is 53 mmol/mol (7%) (patients with a history of severe hypoglycaemia or a recorded diagnosis of hypoglycaemia unawareness will have a target of 64 mmol/mol (8%)).Our trial compares r-CGM use and usual care. The r-CGM report summarising daily glucose patterns will be reviewed by GP and patient and inform treatment decisions. Participants in both arms are provided with 1 hour education by a specialist diabetes nurse.The sample (n=150/arm) has 80% power to detect a mean HbA1c difference of 5.5 mmol/mol (0.5%) with an SD of 14.2 (1.3%) and alpha of 0.05 (allowing for 10% clinic and 20% patient attrition). ETHICS AND DISSEMINATION: University of Melbourne Human Ethics Sub-Committee (ID 1647151.1). Dissemination will be in peer-reviewed journals, conferences and a plain-language summary for participants. TRIAL REGISTRATION NUMBER: >ACTRN12

Objective To examine whether individual differences in Type D personality (combination of negative affectivity (NA) and social inhibition (SI)) could explain heterogeneity in perceived social support and relationship adjustment (intimate partner relationship) among people living with diabetes. Design In the Diabetes MILES—The Netherlands survey, 621 adults with type 1 or type 2 diabetes (54% female, age: 56 ± 14 years) completed measures of Type D personality (DS14), perceived social support and relationship adjustment. We used established DS14 cut-off scores to indicate Type D personality, high NA only, high SI only and reference groups. Results Participants from the Type D and NA only groups perceived lower levels of social support (Welch[3,259] = 37.27, p < 0.001), and relationship adjustment (Welch[3,191] = 14.74; p < 0.01) than those from the SI only and reference groups. Type D was associated with lower social support (lowest quartile; adjusted OR = 8.73; 95%CI = 5.05 ∼ 15.09; p < 0.001) and lower relationship adjustment (lowest quartile; adjusted OR = 3.70; 95%CI = 2.10 ∼ 6.53; p < 0.001). Type D was also associated with increased levels of loneliness. Conclusion Participants with Type D and participants with high NA only tend to experience less social support and less relationship adjustment. Type D personality was also associated with more loneliness. Experiencing lower social support and relationship adjustment may complicate coping and self-management in people with diabetes.

QC 20180514

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Item does not contain fulltext, AIMS: Screening for depression is recommended internationally. The World Health Organization's 5-item Well-being Index (WHO-5) is used clinically to screen for depression but its empirical suitability for this purpose is not well documented. We investigated the psychometric properties of the WHO-5 and its suitability for identifying likely depression in Australian adults with diabetes. METHODS: The Diabetes MILES - Australia study dataset provided a sample of N=3249 who completed the WHO-5 (positively-worded 5-item measure of emotional well-being) and the PHQ-9 (9-item measure of depressive symptoms). Analyses were conducted for the full sample, and separately by diabetes type and treatment (type 1, non-insulin-treated type 2, and insulin-treated type 2 diabetes). Construct (convergent and factorial) validity and reliability of the WHO-5 were examined. ROC analyses were used to examine the sensitivity and specificity of the WHO-5 as a depression screening instrument, comparing two commonly used WHO-5 cut-off values (

PURPOSE: More research into the psychosocial aspects of diabetes is needed so that the health and quality of life of people with the condition can be improved. To fill this gap, we conducted the second Diabetes MILES-Australia study (MILES-2), a survey focused on psychological, behavioural and social aspects of diabetes. The aim of the MILES-2 study was to provide a (1) longitudinal follow-up of the original MILES 2011 study cohort; (2) cross-sectional assessment of a new cohort. PARTICIPANTS: Eligible participants were English-speaking Australians with type 1 or type 2 diabetes, aged 18-75 years. Longitudinal cohort participants were mailed/emailed study invitations directly by researchers. Random sampling (stratified by diabetes type, insulin use, state) of the National Diabetes Services Scheme (NDSS) database and nationwide advertisements were used to recruit new cohort participants. The final sample included N=2342 eligible respondents (longitudinal cohort: n=504; 2015 new cohort: n=1838); 54% had type 2 diabetes. FINDINGS TO DATE: Survey respondents were from an advantaged socioeconomic background compared to the general population. Respondents with type 1 diabetes were over-represented in the new cohort (45%) relative to the planned stratification (40% type 1 diabetes, 60% type 2 diabetes). Respondents with insulin-treated type 2 diabetes were under-represented in the new cohort relative to the stratified sampling (42% invited vs 50% response). Participants who completed both the 2011 and 2015 surveys were more likely than those completing the 2011 survey only to have type 1 diabetes, report a higher education and annual income, and live in metropolitan areas. Participant feedback indicated that the survey was perceived as relevant and valuable. FUTURE PLANS: The depth and breadth of the data available in this large sample will highlight unmet needs and priority areas for future investigation and, crucially, will inform policy, programme and intervention devel

OBJECTIVE: To provide preliminary evidence for the impact of problem-solving therapy for diabetes (PST-D) in adults with diabetic retinopathy (DR) and diabetes distress. RESEARCH DESIGN AND METHODS: In a pilot randomized controlled trial, 40 participants with DR and diabetes distress were allocated to the PST-D or control groups. Diabetes distress (DDS), depressive symptoms (PHQ-9), self-care activities (SDSCA), and HbA1c were assessed at baseline, and 3 and 6-month follow-ups. RESULTS: At the 6-month follow-up, the PST-D group showed significant improvements relative to the control group, in 'regimen-related distress' (PST-D: -1.3±1.4; control: -0.4±1.1), depressive symptoms (PST-D: -4.3±6.1; control: -0.3±4.6), and HbA1c (PST-D: -1.2%±1.01; control: 0.2%±1.2%) (all p<0.05). In multiple regression analysis, adjusting for baseline values and sociodemographic factors, PST-D was associated with significant improvement in 'regimen-related distress', depressive symptoms, and HbA1c at the 6-month follow-up (p<0.05). CONCLUSIONS: PST-D is a promising intervention for improving psychological outcomes and glycemic control. A fully powered study is required to confirm these findings and examine mechanisms of change in HbA1c. TRIAL REGISTRATION NUMBER: ACTRN12616001010482; results.

OBJECTIVE: Despite the challenges of living with type 1 diabetes, many adolescents achieve "resilient outcomes": high engagement in self-management behaviors such as self-monitoring of blood glucose (SMBG), good quality of life (QOL), and within-target glycemic outcomes (HbA1c). Adaptive diabetes-related behaviors (i.e., "strengths") are associated with resilient outcomes, yet the combination of risks and strengths in relation to resilient outcomes is unclear. The aim of this study was to investigate relations among diabetes strengths and resilient outcomes in the context of psychological and family risk factors. RESEARCH DESIGN AND METHODS: A total of 471 Australian adolescents with type 1 diabetes (mean age 15.7 ± 1.9 years; diabetes duration 6.9 ± 4.2 years; 62% female; 53% using insulin pumps) completed a national cross-sectional survey about their diabetes-related strengths, risk factors (depressive/anxiety symptoms, family conflict), and resilient outcomes (SMBG frequency, general QOL, HbA1c). RESULTS: Greater diabetes strengths were significantly related to resilient outcomes: more frequent SMBG (r = 0.39), lower HbA1c (r = -0.31), and higher general QOL (r = 0.50), as well as to lower risks: fewer depressive (r = -0.45) and anxiety (r = -0.40) symptoms and less conflict (r = 0.28). In multivariate regressions, diabetes strengths consistently related to all resilient outcomes beyond significant risk factors. CONCLUSIONS: In a large sample of Australian adolescents, diabetes strengths were strongly related to key resilient outcomes, even in the presence of well-documented psychological and family risk factors. More research is needed to determine whether strengths reduce or buffer other risks. Given the associations with self-management, HbA1c, and general QOL, monitoring and enhancing diabetes strengths may support resilience promotion during a vulnerable developmental period.

© 2016, © The Author(s) 2016. While there is evidence that spouses can impact the self-management of adults with type 2 diabetes mellitus, less is known about the influence of the wider social network. This qualitative study explored the perceived impact of the family as well as friends and work colleagues on type 2 diabetes mellitus self-management. A total of 25 adults with type 2 diabetes mellitus participated in semi-structured interviews regarding their social experiences of living with diabetes. Deductive thematic analysis was applied to the data. Pre-existing themes of health-related social control and social support were identified in the wider social network, with additional themes of non-involvement and unintentional undermining also emerging.

AIMS: To design and conduct preliminary validation of a measure of hypoglycaemia awareness and problematic hypoglycaemia, the Hypoglycaemia Awareness Questionnaire. METHODS: Exploratory and cognitive debriefing interviews were conducted with 17 adults (nine of whom were women) with Type 1 diabetes (mean ± sd age 48±10 years). Questionnaire items were modified in consultation with diabetologists/psychologists. Psychometric validation was undertaken using data from 120 adults (53 women) with Type 1 diabetes (mean ± sd age 44±16 years; 50% with clinically diagnosed impaired awareness of hypoglycaemia), who completed the following questionnaires: the Hypoglycaemia Awareness Questionnaire, the Gold score, the Clarke questionnaire and the Problem Areas in Diabetes questionnaire. RESULTS: Iterative design resulted in 33 items eliciting answers on awareness of hypoglycaemia when awake/asleep and hypoglycaemia frequency, severity and impact (healthcare utilization). Psychometric analysis identified three subscales reflecting 'impaired awareness', 'symptom level' and 'symptom frequency'. Convergent validity was indicated by strong correlations between the impaired awareness subscale and existing measures of awareness: (Gold: rs =0.75, P<0.01; Clarke: rs =0.76, P<0.01). Divergent validity was indicated by weaker correlations with diabetes-related distress (Problem Areas in Diabetes: rs =0.25, P<0.01) and HbA1c (rs =-0.05, non-significant). The impaired awareness subscale and other items discriminated between those with impaired and intact awareness (Gold score). The impaired awareness subscale and other items contributed significantly to models explaining the occurrence of severe hypoglycaemia and hypoglycaemia when asleep. CONCLUSIONS: This preliminary validation shows the Hypoglycaemia Awareness Questionnaire has robust face and content validity; satisfactory structure; internal reliability; convergent

The objective of this study was to examine associations between the mindful parenting style of parents of adolescents (aged 12-18) with type 1 diabetes mellitus (T1DM), and the glycaemic control and quality of life (QoL) of the adolescents. Chronic health conditions, such as T1DM, that require demanding treatment regimens, can negatively impact adolescents' quality of life. Therefore, it is important to determine whether mindful parenting may have a positive impact in these adolescents. Age, sex and duration of T1DM were examined as potential moderators. Parents (N = 215) reported on their own mindful parenting style (IM-P-NL) and the adolescents' glycaemic control. Parents and the adolescents with T1DM (N = 129) both reported on adolescents' generic and diabetes-specific QoL (PedsQL™). The results showed that a more mindful parenting style was associated with more optimal hemoglobin A1c (HbA1c) values for boys. For girls, a more mindful parenting style was associated with not having been hospitalized for ketoacidosis. For both boys and girls, a more mindful parenting style was associated with better generic and diabetes-specific proxy-reported QoL. In conclusion, mindful parenting style may be a factor in helping adolescents manage their T1DM. Mindful parenting intervention studies for parents of adolescents with T1DM are needed to examine the effects on adolescents' glycaemic control and their quality of life.

BACKGROUND: For selected individuals with type 1 diabetes, pancreatic islet transplantation (IT) prevents recurrent severe hypoglycemia and optimizes glycemia, although ongoing systemic immunosuppression is needed. Our aim was to explore candidates and recipients' expectations of transplantation, their experience of being on the waiting list, and (for recipients) the procedure and life posttransplant. METHODS: Cross-sectional qualitative research design using semistructured interviews with 16 adults (8 pretransplant, 8 posttransplant; from 4 UK centers (n = 13) and 1 Canadian center (n = 3)). Interviews were audio-recorded, transcribed, and underwent inductive thematic analysis. RESULTS: Interviewees were aged (mean ± SD) 52 ± 10 years (range, 30-64); duration of diabetes, 36 ± 9 years (range, 21-56); 12 (75%) were women. Narrative accounts centered on expectations, hopes, and realities; decision-making; waiting and uncertainty; the procedure, hospital stay, and follow-up. Expected benefits included fewer severe hypoglycemic episodes, reduced need for insulin, preventing onset/progression of complications and improved psychological well-being. These were realized for most, at least in the short term. Most interviewees described well-informed, shared decision-making with clinicians and family, and managing their expectations. Although life "on the list" could be stressful, and immunosuppressant side effects were severe, interviewees reported "no regrets." Posttransplant, interviewees experienced increased confidence, through freedom from hypoglycemia and regained glycemic control, which tempered any disappointment about continued reliance on insulin. Most viewed their transplant as a success, though several reflected upon setbacks and hidden hopes for becoming "insulin-free." CONCLUSIONS: Independently undertaken interviews demonstrated realistic and balanced expectations of IT and indicate how to optimize the process and support for future IT candidates.

BACKGROUND: Type 1 diabetes is a complex and demanding condition, which places a substantial behavioural and psychological burden on young people and their families. Around one-third of adolescents with type 1 diabetes need mental health support. Parents of a child with type 1 diabetes are also at increased risk of psychological distress. A better understanding of the motivators, behaviours and psychological well-being of young people with diabetes and their parents will inform improvement of resources for supporting self-management and reducing the burden of diabetes. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Youth-Australia Study is the first large-scale, national survey of the impact of diabetes on the psychosocial outcomes of Australian adolescents with type 1 diabetes and their parents. METHODS/DESIGN: The survey was web-based to enable a large-scale, national survey to be undertaken. Recruitment involved multiple strategies: postal invitations; articles in consumer magazines; advertising in diabetes clinics; social media (e.g. Facebook, Twitter). Recruitment began in August 2014 and the survey was available online for approximately 8 weeks. A total of 781 young people (aged 10-19 years) with type 1 diabetes and 826 parents completed the survey. Both genders, all ages within the relevant range, and all Australian states and territories were represented, although compared to the general Australian population of youth with type 1 diabetes, respondents were from a relatively advantaged socioeconomic background. DISCUSSION: The online survey format was a successful and economical approach for engaging young people with type 1 diabetes and their parents. This rich quantitative and qualitative dataset focuses not only on diabetes management and healthcare access but also on important psychosocial factors (e.g. social support, general emotional well-being, and diabetes distress). Analysis of the Diabetes MILES Youth-Australia Stu

Background Type 1 diabetes is a complex and demanding condition, which places a substantial behavioural and psychological burden on young people and their families. Around one-third of adolescents with type 1 diabetes need mental health support. Parents of a child with type 1 diabetes are also at increased risk of psychological distress. A better understanding of the motivators, behaviours and psychological well-being of young people with diabetes and their parents will inform improvement of resources for supporting self-management and reducing the burden of diabetes. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Youth–Australia Study is the first large-scale, national survey of the impact of diabetes on the psychosocial outcomes of Australian adolescents with type 1 diabetes and their parents. Methods/design The survey was web-based to enable a large-scale, national survey to be undertaken. Recruitment involved multiple strategies: postal invitations; articles in consumer magazines; advertising in diabetes clinics; social media (e.g. Facebook, Twitter). Recruitment began in August 2014 and the survey was available online for approximately 8 weeks. A total of 781 young people (aged 10–19 years) with type 1 diabetes and 826 parents completed the survey. Both genders, all ages within the relevant range, and all Australian states and territories were represented, although compared to the general Australian population of youth with type 1 diabetes, respondents were from a relatively advantaged socioeconomic background. Discussion The online survey format was a successful and economical approach for engaging young people with type 1 diabetes and their parents. This rich quantitative and qualitative dataset focuses not only on diabetes management and healthcare access but also on important psychosocial factors (e.g. social support, general emotional well-being, and diabetes distress). Analysis of the Diabetes MILES Yo