AIMS:This narrative review synthesizes current knowledge on the psychological dimensions of diabetes care, identifies gaps in evidence and practice and proposes innovative pathways for embedding psychological care into routine diabetes services. METHODS:Drawing on the authors' expertise in diabetes and behavioral science, complemented by a semi-structured literature search, the review integrates findings from quantitative studies, qualitative research, clinical experience and lived experience perspectives. Evidence was analyzed across domains of care models, research and evaluation, implementation and policy and advances in person-reported outcome measurement. RESULTS:Psychological care in diabetes appears most effective when delivered through layered models: routine distress assessment, frontline psycho-education and access to specialist therapies when needed. Evidence suggests such approaches reduce distress and depressive symptoms, though glycaemic effects remain variable. Integration is constrained by structural barriers such as fragmented health systems, limited reimbursement and shortages of trained professionals. Scientific gaps include underrepresentation of older adults, migrant populations and rare diabetes subtypes, as well as a lack of longitudinal studies. Practical challenges (time pressures in clinics, digital inequality, stigma) further hinder uptake. Assessment issues also persist, with lengthy tools limiting routine use. Moving forward requires interdisciplinary and stepped/matched care models, inclusive and participatory research and policy frameworks that support reimbursement and workforce development. Advances in adaptive, streamlined and culturally sensitive measurement tools are essential to ensure psychological needs are systematically identified and addressed. CONCLUSIONS:Psychological care is not a luxury in diabetes care but a core component of effective, person-centred practice, critical to achieving holistic, equitable and sustainable services.

BackgroundPsychosocial person-reported outcome measurements (PROMs) may assist monitoring, screening and support in routine care for people with type 1 diabetes (PWDs). However, recommended PROM sets are either too limited in covered domains, too time-consuming, or too general to fit type 1 diabetes (T1D) clinical practice. We propose an alternative approach to PROM assessment in routine daily T1D care (Diabeter-PROM study) that is maximally relevant and minimally burdensome for PWDs and healthcare professionals (HCPs). We identify single index questions indicating the need for more in-depth assessment, thereby aligning total assessment length more closely with individual needs.MethodsScientist-practitioners identified twelve key psychosocial domains based on literature review, clinical experience and discussion with PWDs: general quality of life, mood, anxiety, diabetes-specific worries, impact, disturbed eating behaviour, self-efficacy, self-esteem, social support/interaction, resiliency, stigma and satisfaction with care. These domains will be divided over three observational mixed-method sub-studies. Through purposive-sampled interviews and panels, HCPs and PWDs (> 10 per sub study) co-determine candidate index questions for each domain. These are then included in three separate cross sectional questionnaire batteries with existing PROMs. Each will be completed by ≥200 PWDs from our clinic. Per domain, the optimal index question and most informative in-depth item set are determined using statistics (test characteristics, item response) and clinical interpretation.DiscussionWe describe the exploration of an alternative way of PROM assessments, adapted to use in regular T1D care. After determining the most suitable index questions, we will apply this system in our daily diabetes practice, taking end-user needs into account and facilitating sustainable PROM implementation in routine care.

AIM:The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person-centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support. METHODS:A semi-structured narrative review was conducted using PubMed-indexed international peer-reviewed literature, complemented by experiential insights from an interdisciplinary authorship team. RESULTS:Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person-reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma-free communication and psychosocial support delivered by family-oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity. CONCLUSION:Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co-designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.

Diabetes is an increasingly common, long-term condition, requiring 24/7 self-care and constituting one of the greatest health challenges of our time. As with all ‘wicked problems’, a one-size-fits-all approach to care is doomed to fail. In 2020, we welcomed the first international consensus report on precision diabetes medicine, which included a section on patient-centred mental health and quality of life outcomes.1 This included the recommendation that, ‘in the setting of precision diabetes medicine, providers should assess symptoms of diabetes distress, depression, anxiety, disordered eating and cognitive capacities using appropriate standardized and validated tools at the initial visit, at periodic intervals and when there is a change in disease, treatment or life circumstance (..), information that, when combined with other data, are likely to improve the precision of clinical decision making’.1 In 2023, the Precision Medicine in Diabetes Initiative (PMDI) published the second international consensus report, on gaps and opportunities for the clinical translation of precision diabetes medicine.2 This report focused on results ‘from a systematic evidence review across the key pillars of precision medicine (prevention, diagnosis, treatment, prognosis) in four recognized forms of diabetes (monogenic, gestational, type 1, type 2)’, to inform the translation of precision medicine research into practice.2 Regrettably, the second consensus omits any such recommendation or discussion of mental health issues. Furthermore, among the ‘key sources of heterogeneity in diabetes’, only ‘behaviour’ was included, while among the ‘pillars of precision medicine’, only ‘lifestyle interventions’ were included.2 The first consensus called for ‘a rigorous review elucidating effective precision medicine strategies, areas of promise and notable gaps across …[diabetes]… to inform an evidence-based road map to optimize the integration of precision medicine into the global response to the diabetes crisis’.1 Of the 15 new systematic reviews conducted to inform the second consensus report, none includes the psychosocial aspects of diabetes.1 Yet, there is a robust evidence base demonstrating the crucial role of psychosocial factors for people living with, or at risk of, diabetes; and this evidence has only strengthened since the first consensus. For example, a recent umbrella review of 25 systematic reviews of longitudinal studies concluded that common mental disorders, such as depression, anxiety disorders, sleep disorders and schizophrenia, are associated with increased risks for developing type 2 diabetes.3 Various psychotropic medications can increase weight, and people living with mental disorders often face additional challenges, such as high stress, lowered self-esteem, lack of energy, as well as socioeconomic disadvantage, all of which may compromise health and healthy behaviours, and need to be considered when managing risk for type 2 diabetes.3 Furthermore, in 2020, a special issue of Diabetic Medicine, commemorating the 25th anniversary of the PsychoSocial Aspects of Diabetes (PSAD) study group, included 14 commissioned reviews of behavioural, psychological and social aspects of diabetes.4 These included diabetes and depression,5 diabetes distress,6 fear of hypoglycaemia,7 disordered eating,8 and disordered sleep,9 other reviews focused on psychological factors related to the use of medications and diabetes technologies, motivation for self-care, importance of social support, the quality of the patient-clinician communication and the impact of diabetes and its management on quality of life.4 These reviews summarized the state-of-the-science regarding the inseparable role of psychology in diabetes, including several effective (and cost-effective) interventions based on psychological and behavioural science, none of which are mentioned in the second international consensus report.1 The systematic removal of essential psychosocial factors from a report focused on the ‘gaps and opportunities for the clinical translation’ of precision diabetes medicine, without any clarification, appears to be a step backwards, creating rather than recognising a gap. Given that approximately one in two people will experience mental health problems at some point in their life, and the crucial role that psychology plays in all self-management behaviours and clinician-patient communications, how can any of the four pillars—prevention, diagnosis, treatment or prognosis—be considered precise without recognizing these issues? The PMDI did not consider these omissions among the potential liabilities of a precision medicine approach. The PMDI statement is also out-of-step with other international consensus reports, which recognize the essential role of psychology in diabetes care, such as that published by the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD) focused on the management of type 1 diabetes in adults.10 Section 10 describes psychosocial care, providing an overview of psychological comorbidities that can have a negative impact on diabetes outcomes, and explaining how monitoring of these problems should be integrated in diabetes care.10 Consistent with the studies described above, the ADA/EASD consensus statement not only discusses depression, anxiety, anorexia nervosa, bulimia nervosa, binge eating and intentional insulin omission for weight loss, but also different forms of diabetes-specific emotional distress, such as feeling powerless and overwhelmed by the daily self-care demands, fear of hypoglycaemia, worries about complications, a lack of social support or feeling ‘policed’ by family, friends or co-workers.10 Moreover, the ADA/EASD consensus statement explains how validated questionnaires can be used to ‘flag’ these psychological problems that may require psychological support. It is also emphasized that ‘members of the team have a responsibility for providing psychosocial care as an integral component of diabetes care. Preferably, the diabetes care team should include a mental health professional (psychiatrist, psychologist and/or social worker) to advise the team and consult with people with diabetes in need of psychosocial support’.10 Effective psychological therapies are available, including (online) cognitive behavioural therapy (CBT), mindfulness and interpersonal therapies.10 Thus, it is our consensus that psychosocial factors not only affect risks for and the course of diabetes, but that mental health is as important a goal of precision diabetes medicine as physical health. Nearly every mental disorder has a higher prevalence among people with diabetes. Thus, we contend that precision diabetes medicine must also entail precision mental health care. We therefore encourage the PMDI to incorporate phenotypic psychosocial factors into the next revision of the international consensus report, and everyone to recognise that precision diabetes medicine must include precision mental health care.

People with diabetes often encounter stigma (ie, negative social judgments, stereotypes, prejudice), which can adversely affect emotional, mental, and physical health; self-care, access to optimal health care; and social and professional opportunities. To accelerate an end to diabetes stigma and discrimination, an international multidisciplinary expert panel (n=51 members, from 18 countries) conducted rapid reviews and participated in a three-round Delphi survey process. We achieved consensus on 25 statements of evidence and 24 statements of recommendations. The consensus is that diabetes stigma is driven primarily by blame, perceptions of burden or sickness, invisibility, and fear or disgust. On average, four in five adults with diabetes experience diabetes stigma and one in five experience discrimination (ie, unfair and prejudicial treatment) due to diabetes, such as in health care, education, and employment. Diabetes stigma and discrimination are harmful, unacceptable, unethical, and counterproductive. Collective leadership is needed to proactively challenge, and bring an end to, diabetes stigma and discrimination. Consequently, we achieved unanimous consensus on a pledge to end diabetes stigma and discrimination.

Aims: To examine the impact of real-time continuous glucose monitoring (RT-CGM) on quality of life in Dutch adults with type 1 diabetes, inside/outside automated insulin delivery (AID) systems. Methods: In this cross-sectional retrospective observational study, RT-CGM users completed an online survey including (adapted) validated questionnaires, study-specific items and open-ended questions.Results: Of 893 participating adults, 69% used the RT-CGM as part of AID. The overall sample reported improvements in quality of life related to RT-CGM use (irrespective of initial indication), particularly with respect to physical health, emotional wellbeing and energy. Merits for sleep, intimacy and cognitive diabetes load lagged somewhat behind, mostly when RT-CGM was not integrated in AID. Users of AID had significantly larger improvements in overall quality of life, fatigue and diabetes-specific distress than users of sensor-augmented pump or Open Loop treatment. In regression analyses, user evaluations were associated with perceptions of benefit and burden. In qualitative content analysis, benefits (e.g. life 'normalization', increased perceptions of control) outweighed burdens (e.g. technology frustrations, confrontation with diabetes). Conclusions: RT-CGM positively impacted the quality of life of adults with type 1 diabetes. This justifies a (re-) consideration of broader access. Increased support to maximize device benefits and minimize burdens is also warranted.

Background: The division of care responsibilities between parents and children with type 1 diabetes, and an optimal transfer of responsibilities from parent to child over time are assumed to be key for optimal diabetes outcomes during childhood and adolescence. However, an overview of instruments assessing this division as well as their psychometric qualities is currently lacking. Objective: The study aims to 1) identify all existing instruments, 2) evaluate their psychometric properties, and 3) provide an overview of scoring methods. Methods: Pubmed and PsycINFO were searched using a priori-defined search string. Peerreviewed studies in English using an instrument assessing the division of diabetes care responsibilities between children (6-18 years) and parents were included. In total, 84 of 725 articles qualified, covering 62 unique samples. Results: Thirteen questionnaires were identified. The Diabetes Family Responsibility Questionnaire (DFRQ) was most frequently used across studies. Instructions, content and number of tasks, response options, and scoring methods varied across questionnaires. Recent studies often adapted questionnaires, contributing to the heterogeneity across measures. Overall, reporting and quality of psychometric properties was suboptimal. Conclusion: The division of diabetes care responsibilities can be operationalized with various instruments, each having its strengths and weaknesses but all with limited psychometric support. To measure the division of diabetes care responsibilities more adequately, an updated version of the popular DFRQ or a new scale needs to be developed and evaluated.

Open-source automated insulin delivery systems, commonly referred to as do-it-yourself automated insulin delivery systems, are examples of user-driven innovations that were co-created and supported by an online community who were directly affected by diabetes. Their uptake continues to increase globally, with current estimates suggesting several thousand active users worldwide. Real-world user-driven evidence is growing and provides insights into safety and effectiveness of these systems. The aim of this consensus statement is two-fold. Firstly, it provides a review of the current evidence, description of the technologies, and discusses the ethics and legal considerations for these systems from an international perspective. Secondly, it provides a much-needed international health-care consensus supporting the implementation of open-source systems in clinical settings, with detailed clinical guidance. This consensus also provides important recommendations for key stakeholders that are involved in diabetes technologies, including developers, regulators, and industry, and provides medico-legal and ethical support for patient-driven, open-source innovations.

Background: Longitudinal studies including parental distress when examining adverse health outcomes in adolescents with type 1 diabetes are lacking. This study examined whether parental depression and anxiety predict adolescent emotional distress and glycated hemoglobin A(1c) (HbA(1c)) 1 year later and whether a relation between parental distress and HbA(1c) is mediated by the level of parental involvement in diabetes care and by treatment behaviors. Methods: Longitudinal path modeling was applied to data from 154 adolescents and parents from diabetes centers participating in the Longitudinal study of Emotional problems in Adolescents with type 1 diabetes and their Parents/caregivers (Diabetes LEAP). At baseline and 1-year follow-up, participants completed measures of depression and anxiety. HbA(1c) was extracted from medical charts. Responsibility and treatment behavior questionnaires were completed by adolescents at baseline. Results: Baseline parental depressive and anxiety symptoms were not associated with 1-year adolescent depressive symptoms, anxiety symptoms, and HbA(1c). Responsibility division and treatment behaviors did not mediate associations between parental emotional distress and 1-year HbA(1c). Conclusions: Parental depressive and anxiety symptoms did not predict adolescent health outcomes 1 year later. Future studies may determine whether the link is present in case of mood/anxiety disorders or severe diabetes-specific distress, or whether adolescents are resilient in the face of parental distress. Impact: Adolescents with T1D are a vulnerable group in terms of psychological and health outcomes. Whether parental emotional distress (i.e., depressive and anxiety symptoms) is prospectively associated with adolescent emotional distress and/or HbA1c has been understudied. Our results show that parental distress was not related to adolescent distress or HbA1c 1 year later. Responsibility division and treatment behaviors did not mediate associations between parental emotional distress and 1-year HbA1c. Future studies could determine whether these links are present in case of mood/anxiety disorders or severe diabetes-specific distress, or whether adolescents are resilient in the face of parental distress.

Background: Despite observational evidence for the efficacy and safety of open-source automated insulin delivery (OS-AID) there is a lack of guidance for healthcare providers. The ethics of providing care for those using unregulated technology is a concern. Methods: Consensus guidelines are in development, through the OPEN project, by an experienced multi-disciplinary group of endocrinologists, diabetes care and education specialists, exercise physiologists and psychologists. Results: The principles of biomedical ethics - autonomy, justice, beneficence and non-maleficence - provide a framework for analysis. Autonomy requires that the user understands system risks and benefits. OS-AID provides complete transparency and customization, facilitating understanding and control. Algorithms used in commercial systems are proprietary, impeding the ability to discuss and personalize operation. Justice requires burdens and benefits be distributed fairly. Commercial systems are not uniformly accessible. OS-AID provides freely available software and allows the mixing and matching of compatible CGMs and pumps, supporting equity. Beneficence means doing good for the individual. In real-world observational trials both open-source (OpenAPS: n=34, mean TIR 71->80% at max 2.5 years; Loop: n=558, mean TIR 67->73% at 6 months) and commercial AID systems (670G: n=3141, mean TIR 66->73% at 3 months; Control-IQ: n=1659, median TIR: 68->78% at 1 month) provide a statistically significant and clinically meaningful increase in TIR at the population level. Non-maleficence requires treatment does not harm the individual. AID systems can reduce burden, hypoglycemia and hyperglycemia. Conclusions: The international consensus group concludes OS-AID is ethical, but unregulated. We recommend legal interpretations and frameworks be clarified and updated so that individuals are not deprived of beneficial therapy. Commercial AID systems may benefit from transparency and equity offered by OS-AID systems. Disclosure K. Braune: None. M. Riddell: Advisory Panel; Self; Zealand Pharma A/S, Consultant; Self; Lilly Diabetes, Research Support; Self; Dexcom, Inc., Insulet Corporation, Speaker’s Bureau; Self; Novo Nordisk Inc., Sanofi, Stock/Shareholder; Self; Zucara Therapeutics Inc. T. C. Skinner: Advisory Panel; Self; Liva Health Care, Novo Nordisk. K. Raile: Advisory Panel; Self; Abbott Diabetes, Lilly Diabetes, Research Support; Self; Dexcom, Inc. C. Johnston: None. R. Lal: Consultant; Self; Abbott Diabetes, Biolinq, Capillary Biomedical, Inc., Morgan Stanley, Tidepool. S. Hussain: Speaker’s Bureau; Self; Novo Nordisk. M. Quigley: None. L. Petruzelkova: None. G. Scheiner: Advisory Panel; Self; Capillary Biomedical, Inc., Companion Medical, Eli Lilly and Company, Consultant; Self; ADOCIA, Ascensia Diabetes Care, mySugr, Triple Jump, Ypsomed, Speaker’s Bureau; Self; Dexcom, Inc., Xeris Pharmaceuticals, Inc. P. Winterdijk: None. S. Schmidt: None. L. H. Raimond: None. K. K. Hood: Consultant; Self; Cecelia Health, Cercacor, LifeScan Diabetes Institute. Funding National Institute of Diabetes and Digestive and Kidney Diseases (T32DK007217, 1K12DK122550, 1K23DK122017, P30DK116074); European Commission’s Horizon 2020 Research and Innovation Programme/Marie Sklodowska-Curie Action Research and Innovation Staff Exchange (RISE) grant agreement number 823902

We aim to determine the prevalence and the course of anxiety and mood disorders in Dutch adolescents (12–18 years old) with type 1 diabetes, and to examine correlates of symptom severity, including parental emotional distress.

Abstract Aim To determine which factors other than child age play a role in the division and transfer of diabetes care responsibilities between parents and children with type 1 diabetes. Design Qualitative focus group study. Methods Across four sites in the Netherlands, 18 parents (13 mothers) of children (9–14 years) with type 1 diabetes participated in four focus groups in 2015–2016, as part of the research project 'Whose diabetes is it anyway?'. Qualitative content analysis and the constant comparison method were used to analyse the data. Results According to parents, the transfer process included both direct and indirect tasks, had different levels (remembering, deciding, performing), was at times a difficult and stressful process, and showed large variation between families. A large number of child, parent and context factors were identified that affected the division and transfer of diabetes care responsibilities according to parents. Both positive and negative consequences of the transfer process were described for parental and child health, behaviour and well‐being. Parental final evaluations of the division and transfer of diabetes care responsibilities appeared to be dependent on parenting values. Conclusion How families divide and transfer diabetes care tasks appeared to be affected by a complex interplay of child, parent and context characteristics, which had an impact on several parent and child domains. Impact Parents struggle with the right timing of transfer, which calls for more support from diabetes nurses. The identified factors can be used as input for integrating a more family‐based approach into current age‐based guidelines, to improve regular care.

Background Type 1 diabetes (T1D) is a chronic metabolic condition requiring intensive daily self-care to avoid both high and low blood glucose levels. Self-care and glycemic outcomes are particularly problematic in adolescence, a period known for its increased risk of emotional problems. However, the true scope of mood and anxiety disorders in adolescents with T1D is unknown. Earlier studies are limited by a small sample size, lack of diagnostic interview data, a focus on depression only, non-adolescent specific estimates, lack of information about parental emotional problems and/or a cross-sectional design. Diabetes LEAP is a two-year prospective observational cohort study examining (a) the prevalence and course of depression and anxiety in adolescents with T1D and their parents/caregivers, (b) the risk factors predicting the presence of these emotional problems, (c) their longitudinal relation with diabetes outcomes, and (d) the psychosocial care currently in place. Methods Adolescents (12–18 years) from 8 Dutch pediatric diabetes clinics are interviewed using the DISC-IV to establish the presence of mood and anxiety disorders in the previous 4 weeks, the previous 12 months, and lifetime. They also complete questionnaires, including CDI-2, GAD-7, and PAID-T. Parents/caregivers complete PHQ-9, GAD-7, and PAID-PR. Follow-up assessments take place after 1 and 2 years. Discussion This longitudinal study with diagnostic interviews in a large cohort of adolescents with T1D in the Netherlands will provide much needed information regarding the prevalence and course of depression and anxiety in this group, thereby opening avenues for proper recognition, prevention and timely treatment.

OBJECTIVE Successful self-management of type 1 diabetes requires cognitive skills such as executive functioning (EF). In the transition to adolescence, youth take over responsibility for diabetes management. We set out to test: 1) the association between EF and glycemic control over time and 2) whether this association was moderated by: a) youth, shared, or parent responsibility for diabetes management and b) youth’s age. RESEARCH DESIGN AND METHODS Within the Diabetes IN DevelOpment study (DINO), parents of youth with type 1 diabetes (8–15 years at baseline; N = 174) completed a yearly assessment over 4 years. Glycemic control (HbA1c) was derived from hospital charts. Youth’s EF was measured using the Behavior Rating Inventory of Executive Functioning (BRIEF)-parent report. The Diabetes Family Responsibility Questionnaire (DFRQ)-parent report was used to assess diabetes responsibility (youth, shared, and parent). Linear generalized estimating equations were used to analyze data including youth’s sex, age, and age of diabetes onset as covariates. RESULTS Relatively more EF problems are significantly associated with higher HbA1c over time (β = 0.190; P = 0.002). More EF problems in combination with less youth responsibility (β = 0.501; P = 0.048) or more parental responsibility (β = −0.767; P = 0.006) are significantly associated with better glycemic control over time. Only age significantly moderates the relationship among EF problems, shared responsibility, and glycemic control (β = −0.024; P = 0.019). CONCLUSIONS Poorer EF is associated with worse glycemic control over time, and this association is moderated by responsibility for diabetes management tasks. This points to the importance of EF when youth take over responsibility for diabetes management in order to achieve glycemic control.

Adolescents with type 1 diabetes are at an increased risk of disturbed eating behaviors (DEBs).

Objective. To evaluate (1) the longitudinal relationship between parental well-being and glycemic control in youth with type 1 diabetes and (2) if youth’s problem behavior, diabetes parenting behavior, and parental diabetes-distress influence this relationship. Research Design and Methods. Parents of youth 8–15 yrs (at baseline) (N=174) participating in the DINO study completed questionnaires at three time waves (1 yr interval). Using generalized estimating equations, the relationship between parental well-being (WHO-5) and youth’s HbA1c was examined. Second, relationships between WHO-5, Strength and Difficulties Questionnaire (SDQ), Diabetes Family Behavior Checklist (DFBC), Problem Areas In Diabetes-Parent Revised (PAID-Pr) scores, and HbA1c were analyzed. Results. Low well-being was reported by 32% of parents. No relationship was found between parents’ WHO-5 scores and youth’s HbA1c (β=−0.052, p=0.650). WHO-5 related to SDQ (β=−0.219, p<0.01), DFBC unsupportive scale (β=−0.174, p<0.01), and PAID-Pr (β=−0.666, p<0.01). Both DFBC scales (supportive β=−0.259, p=0.01; unsupportive β=0.383, p=0.017), PAID-Pr (β=0.276, p<0.01), and SDQ (β=0.424, p<0.01) related to HbA1c. Conclusions. Over time, reduced parental well-being relates to increased problem behavior in youth, unsupportive parenting, and parental distress, which negatively associate with HbA1c. More unsupportive diabetes parenting and distress relate to youth’s problem behavior.

BACKGROUND:Strict glycemic control during adolescence decreases the risk of developing complications later in life, even if this level of control is not maintained afterwards. However, the majority of adolescents with type 1 diabetes (T1D) are in poor control and so far medical or psychological interventions have shown limited success. Adolescence is characterized by major biological, psychosocial, cognitive and parent-child relationship changes and the complex interaction between these developmental trajectories, and its impact on health outcomes is still poorly understood. A specific topic of interest in this context is the timing of diagnosis. The longitudinal study DINO (Diabetes IN develOpment) aims to examine: 1) If and how the onset of T1D before vs. during puberty results in different outcomes of glycemic control, self-management, psychological functioning and diabetes-related quality of life. 2) The timing of onset of disturbed eating behavior, its risk factors and its prospective course in relation to glycemic and psychological consequences. 3) If and how the onset of T1D before vs. during puberty results in different family functioning and parental well-being. 4) If and how the cognitive development of youth with T1D relates to glycemic control and diabetes self-management.METHODS/DESIGN:DINO, a longitudinal multi-center cohort study is conducted in youth with T1D in the age range 8-15 years at baseline. Participants will be divided into two subgroups: pre-pubertal and pubertal. Both groups will be followed for 3 years with assessments based on a bio-psychosocial model of diabetes, scheduled at baseline, 12 months, 24 months and 36 months examining the biological, psychosocial -including disturbed eating behaviors- and cognitive development, family functioning and parental well-being.DISCUSSION:A better understanding of how the different trajectories affect one another will help to gain insight in the protective and risk factors for glycemic outcomes and in who needs which support at what moment in time. First results are expected in 2016.

Background: Patients with type 1 diabetes mellitus (T1DM) are more prone to develop other auto-immune diseases, including coeliac disease (CD). Paediatric patients with T1DM are screened for CD, whereas in adult T1DM patients screening programs for CD are not standardised. The aim of this study was to investigate clinical and genetic characteristics of patients with both diagnoses so as to lead to better detection of CD in adult patients with T1DM.Methods: We studied 118 patients with both T1DM and CD identified in The Netherlands. We retrospectively collected data on sex distribution, age of onset of T1DM, age of CD diagnosis, CD complaints, duration of CD complaints before CD diagnosis, family history of CD or T1DM, comorbidity and HLA-DQ type.Results: Thirty-three percent of T1DM+CD patients reported CD related complaints for at least 5 years before CD diagnosis. Two peaks in the age of CD diagnosis in T1DM patients were observed: around 10 and 45 years of age. Women were diagnosed with CD at a younger age than men (median 25 years (IQR 9-38) versus 39 (12-55) years, respectively, P<0.05).Conclusion: A delay of CD diagnosis is frequently found in adult T1DM patients and two peaks in the age of CD diagnosis are present in T1DM patients. This observational study emphasises that more frequent screening for CD in particularly adult T1DM patients is required, preferably by a 5 years interval. (C) 2013 European Federation of Internal Medicine. Published by Elsevier B. V. All rights reserved.

Aim It is recommended to assess health-related quality of life (HRQoL) in teenagers with diabetes as part of their ongoing medical care. Here, we describe the development and psychometric evaluation of the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY-Q), a multi-dimensional self-report HRQoL questionnaire designed for use in pediatric diabetes care. Design and methods In expert meetings, characteristics and domains of interest were defined. Existing questionnaires were reviewed, topics selected, and new items added, resulting in the 36-item MY-Q. To test face validity, we interviewed 22 teenagers. In addition, 84 teenagers with type 1 diabetes (age 1018?yr) completed the MY-Q and Pediatric Quality of Life Inventory (PedsQL) generic and diabetes-modules to examine psychometric properties. Hemoglobin A1c (HbA1c) values were obtained by chart audit. Results The MY-Q consists of seven subscales (social impact, parents, diabetes control perceptions, responsibility, worries, treatment satisfaction, and body image and eating behavior) as well as general HRQoL and emotional well-being. Cronbach's alpha for the total scale was 0.80. Strong correlations between MY-Q total and PedsQL generic and diabetes-module scores (r?=?0.58 and r?=?0.71, p?<?0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r?= -0.35, p?=?0.001), worries (r?= -0.24, p?=?0.029), and body image and eating behavior (r?= -0.26, p?=?0.019) scores. Younger age was associated with higher diabetes control perceptions (r?= -0.26, p?=?0.020) and body image and eating behavior (r?= -0.23, p?=?.038), and lower responsibility (r?=?0.25, p?=?0.027) scores. Conclusion The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.