Towards standardization of person-reported outcomes (PROs) in pediatric diabetes research: A consensus report.

Background: Diabetes ranks among the most common chronic conditions in childhood and adolescence. It is unique among chronic conditions, in that clinical outcomes are intimately tied to how the child or adolescent living with diabetes and their parents or carers react to and implement good clinical practice guidance. It is widely recognized that the individual's perspective about the impact of trying to manage the disease together with the burden of self-management should be addressed to achieve optimal health outcomes.

Diagnosis, treatment, management and monitoring of patients with tyrosinaemia type 1: Consensus group recommendations from the German-speaking countries.

Hepatorenal tyrosinaemia (HT1) is an autosomal recessive disorder of tyrosine degradation resulting in hepatic and renal dysfunction, neurological sequelae may occur in some patients. The use of nitisinone (NTBC) has revolutionised treatment and outcome of this disorder. NTBC has to be combined with a low protein diet.

ISPAD Clinical Practice Consensus Guidelines 2024: Screening, Staging, and Strategies to Preserve Beta-Cell Function in Children and Adolescents with Type 1 Diabetes.

The International Society for Pediatric and Adolescent Diabetes (ISPAD) guidelines represent a rich repository that serves as the only comprehensive set of clinical recommendations for children, adolescents, and young adults living with diabetes worldwide. This guideline serves as an update to the 2022 ISPAD consensus guideline on staging for type 1 diabetes (T1D). Key additions include an evidence-based summary of recommendations for screening for risk of T1D and monitoring those with early-stage T1D.

Psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) with Type 1 Diabetes and Their Parents (P-PAID-C).

Children with Type 1 diabetes (T1D) and their parent-caregivers often experience diabetes distress due to the daily demands of diabetes management. Regular screening for diabetes distress is needed to prevent the deterioration of metabolic control and the development of mental health disorders. The aim of this analysis was to examine the psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) and for caregiver burden in Parents (P-PAID-C).

Navigating the Unique Challenges of Automated Insulin Delivery Systems to Facilitate Effective Uptake, Onboarding, and Continued Use.

Advances in diabetes technologies have enabled automated insulin delivery (AID) systems, which have demonstrated benefits to glycemia, psychosocial outcomes, and quality of life for people with type 1 diabetes (T1D). Despite the many demonstrated benefits, AID systems come with their own unique challenges: continued user attention and effort, barriers to equitable access, personal costs vs benefits, and integration of the system into daily life. The purpose of this narrative review is to identify challenges and opportunities for supporting uptake and onboarding of AID systems to ultimately support sustained AID use.

Consensus Guidance for Monitoring Individuals With Islet Autoantibody-Positive Pre-Stage 3 Type 1 Diabetes.

Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programs are being increasingly emphasized. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb+) children and adults who are at risk for (confirmed single IAb+) or living with (multiple IAb+) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in nonspecialized settings.

Consensus guidance for monitoring individuals with islet autoantibody-positive pre-stage 3 type 1 diabetes.

Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programmes are being increasingly emphasised. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb) children and adults who are at risk of (confirmed single IAb) or living with (multiple IAb) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in non-specialised settings.

Towards the standardisation of adult person-reported outcome domains in diabetes research: A Consensus Statement development panel.

Diabetes is unique among chronic diseases because clinical outcomes are intimately tied to how the person living with diabetes reacts to and implements treatment recommendations. It is further characterised by widespread social stigma, judgement and paternalism. This physical, social and psychological burden collectively influences self-management behaviours.

Using person reported outcomes: Psychometric properties of the German diabetes treatment satisfaction questionnaire (DTSQ) for teens and parents.

Aims: To examine psychometric properties including the factor structure of the German versions of the Diabetes Treatment Satisfaction Questionnaire for teens and parents (DTSQ-T/-P).

Methods: Linguistically validated questionnaires were completed by 363 adolescents with type 1 diabetes and 655 parent-caregivers in a multicenter study. Confirmatory factor analysis (CFA), reliability, and correlations were examined.

Health-related quality of life among adolescents with type 1 diabetes since the second wave of the COVID-19 pandemic in Germany.

Objective: The COVID-19 pandemic had an impact on everyday life and in general, reduced the health-related quality of life (HRQoL) of adolescents. In this study, we assess the HRQoL of adolescents with type 1 diabetes (T1D) in Germany since the second wave of the COVID-19 pandemic by using self-report and parent-proxy reports, to identify risk factors, to compare to peers and to examine the agreement of HRQoL between parents and their children.

Methods: A total of 445 adolescents (12-18 years) and 413 parents participated in an anonymous cross-sectional survey conducted at three German diabetes centres from January 2021 to June 2022.

Socioeconomic inequalities in type 2 diabetes comorbidities in different population subgroups: trend analyses using German health insurance data.

While socioeconomic inequalities in the prevalence and management of type 2 diabetes (T2D) are well established, little is known about whether inequalities exist in the prevalence and the temporal development of T2D comorbidities. Previous research points towards expansion of morbidity in T2D as depicted mainly by a rising trend of T2D comorbidities. Against this background, and using German claims data, this study aims to examine whether socioeconomic status (SES) inequalities exist in the rates and the temporal development of T2D comorbidities.

Prevalence of LDL-hypercholesterolemia and other cardiovascular risk factors in young people with type 1 diabetes.

Background: Mortality and morbidity in people with Type 1 diabetes (T1D) is mainly caused by cardiovascular disease (CVD). Early treatment of cardiovascular risk factors (CVRFs) is of great importance.

Objective: To analyze the prevalence of LDL-hypercholesterolemia and other CVRFs in youth with T1D.

Psychometric properties of the German teen and parent versions of the Problem Areas in Diabetes Scale (PAID).

The negative impact of psychosocial burden in connection with the treatment of Type 1 diabetes (T1D) indicates the need for regular screening of diabetes distress in adolescents with T1D and their parents. Psychometric properties of the German versions of Problem Areas in Diabetes scale-Teen (PAID-T) and Parent (P-PAID-T) are examined in order to provide a clinical screening tool. Linguistically translated questionnaires were used in a multicenter study with 459 families.

Trends of Antidiabetic and Cardiovascular Diseases Medication Prescriptions in Type 2 Diabetes between 2005 and 2017-A German Longitudinal Study Based on Claims Data.

Background: With an attempt to understand possible mechanisms behind the severity-dependent development of type 2 diabetes (T2D) comorbidities, this study examines the trends of antidiabetic and cardiovascular diseases (CVD) medication prescriptions in individuals with T2D.

Methods: The study is based on claims data from a statutory health insurance provider in Lower Saxony, Germany. The period prevalence of antidiabetic and CVD medication prescriptions was examined for the periods 2005-2007, 2010-2012, and 2015-2017 in 240,241, 295,868, and 308,134 individuals with T2D, respectively.

Direct LDL-C estimation in preschoolers: Practicable first step for FH screening.

Background: Individuals with FH develop cardiovascular disease due to lifelong cumulative exposure to elevated LDL-C. Effective screening for FH is not yet established.

Objective: To evaluate the practicability of a FH screening by measuring directly the LDL-C in preschoolers.

Comparison of diabetes distress and depression screening results of emerging adults with type 1 diabetes onset at different ages: findings from the German early-onset T1D study and the German Diabetes Study (GDS).

Background: Diabetes distress is increasingly considered one of the most important psychosocial issues in the care of people with type 1 diabetes (T1D). We analyse whether diabetes distress and depression screening results of emerging adults are associated with the age at T1D onset.

Methods: Data were taken from two cohort studies conducted at the German Diabetes Center, Düsseldorf, Germany.

Understanding Daily, Emotional, and Physical Burdens and Needs of Parents Caring for Children with Type 1 Diabetes.

Aims: To investigate (1) daily, emotional, and physical caregiving burdens in parents of children with type 1 diabetes, (2) the sociodemographic and clinical predictors of three burdens, and (3) support measures that parents wish to receive.

Methods: The study was a multicenter cross-sectional survey conducted in nine German pediatric diabetes centers. A questionnaire assessing three types of burdens and wishes for support was distributed to parents with a child with type 1 diabetes visiting one of the pediatric centers for a routine check-up.