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.

Early Results of an Innovative Scalable Digital Treatment for Diabetes Distress in Families of School-Age Children with Type 1 Diabetes.

Objective: This paper reports on the initial outcomes of a new mHealth intervention to reduce diabetes distress (DD) in families of school-age children living with type 1 diabetes (T1D) entitled, 'Remedy to Diabetes Distress' (R2D2).

Methods: We randomized 34 families (mean child age = 10 ± 1.4 years; 53% male, 85% White, mean HbA1c = 7.

Parent and adolescent perspectives on a novel transdisciplinary model of healthcare delivery for type 1 diabetes.

Objective: We aimed to obtain pre-adolescent/adolescent and parent input on a proposed transdisciplinary model for routine type 1 diabetes (T1D) healthcare in which an advanced practice nurse, dietitian, and psychologist with expertise in T1D and extensive cross-discipline training co-deliver care during quarterly T1D care visits using a family-focused approach.

Methods: Participants were 17 parent-youth dyads plus one additional adolescent who responded to open-ended questions about the structure and format of the proposed transdisciplinary care model via an online, private social network. A six-member coding team developed and revised a codebook, coded question responses through iterative cycles of inductive coding, and distilled major recurring themes to obtain perspectives on the transdisciplinary care model and feedback on improving the model.

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.

Parental diabetes distress is a stronger predictor of child HbA1c than diabetes device use in school-age children with type 1 diabetes.

Introduction: Diabetes distress (DD) describes the unrelenting emotional and behavioral challenges of living with, and caring for someone living with, type 1 diabetes (T1D). We investigated associations between parent-reported and child-reported DD, T1D device use, and child glycated hemoglobin (HbA1c) in 157 families of school-age children.

Research Design And Methods: Parents completed the Parent Problem Areas in Diabetes-Child (PPAID-C) and children completed the Problem Areas in Diabetes-Child (PAID-C) to assess for DD levels.

Psychosocial Staffing and Implementation of the International Society for Pediatric and Adolescent Diabetes Psychological Care Guidelines in U.S. Pediatric Diabetes Clinics.

Background: Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes.

Objective: To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S.

Remedy to Diabetes Distress (R2D2): Development protocol for a scalable screen-to-treat program for families of school-age children.

Background: School-age children with type 1 diabetes (T1D) need help from parents or other adult caregivers (caregivers) to effectively manage T1D, resulting in greater vulnerability to Diabetes Distress (DD) for both children and caregivers. Unfortunately, there are no scalable screen-to-treat programs for clinics to adopt to identify and treat DD in school-age families.

Methods And Analyses: We aim to design a scalable, clinic-based screen-to-treat program for DD in families of school-age children and to test whether our new program to reduce caregiver and child DD also reduces child glycemic levels.

Development and Evaluation of the Pediatric Diabetes Routine Questionnaire for Parents of Young Children with Type 1 Diabetes.

This study describes the development and psychometric evaluation of the Pediatric Diabetes Routines Questionnaire for Parents of Young Children (PDRQ-PYC) with type 1 diabetes, a measure adapted from the school-age and adolescent versions of the PDRQ, to measure diabetes-specific routines in families with children under age 6 years with type 1 diabetes. Participants included 173 parents of young children with type 1 diabetes (YC-T1D) who completed measures of diabetes-specific routines, diabetes adjustment, self-efficacy, benefit finding, depression, child behavior problems, spousal support, and T1D treatment engagement. Exploratory factor analysis supported a one-factor model consisting of a unidimensional PDRQ-PYC total score.

The association between pediatric mental health disorders and type 1 diabetes-related outcomes.

Objective: Transition from pediatric to adult healthcare systems is a difficult process for young adults with Type 1 Diabetes (T1D) and most patients experience a deterioration in disease control. Mental health (MH) disorders are common in individuals with T1D and are believed to play a role in disease control and transition of care. We evaluated the association between the presence of pediatric MH disorder and measures of success in diabetes care in young adults who recently transitioned to adult care.

Erratum: Feasibility of Implementing a Pediatric Diabetes Clinic via Telehealth. Diabetes Spectrum 2021;34:190-197 (https://doi.org/10.2337/ds20-0060).

[This corrects the article on p. 190 in vol. 34, PMID: 34149260.

Feasibility of Implementing a Pediatric Diabetes Clinic via Telehealth.

Objective: In response to the coronavirus disease 2019 (COVID-19) pandemic and social distancing guidelines, our pediatric diabetes team rapidly changed the format of conducting diabetes clinic from in person to telehealth. We compared the actual number and rate of completed, canceled, and no-show visits between an 8-week period in 2019, when we exclusively conducted visits in person and the same 8-week period in 2020, during the COVID-19 quarantine, when we exclusively conducted visits via telehealth.

Methods: We used electronic health record data for all patients, as well as Dexcom continuous glucose monitoring data collected for a subset of youths during the COVID-19 quarantine and the immediate pre-COVID-19 period.

Benefit finding among parents of young children with type 1 diabetes.

Benefit finding, perceived positive effects of adversity, has been associated with psychological well-being in people with chronic illnesses and with better adherence for adolescents with type 1 diabetes (T1D). Our qualitative research with parents of young children (< 6 years old) with T1D indicated that benefit finding (BF) is a common parental coping mechanism, but no tools exist to measure BF in parents. We determined psychometric properties of the Diabetes Benefit Finding Scale for Parents (DBFS-P), a 16-item questionnaire adapted from the validated adolescent version.

Development and Validation of the Pediatric Diabetes Routines Questionnaire for Adolescents.

This study describes the development and psychometric evaluation of an adolescent self-report version of the Pediatric Diabetes Routines Questionnaire (PDRQ:A), a measure of diabetes-specific routines for youth with type 1 diabetes, and further validation of the parent-version (PDRQ:P) in an adolescent sample. Participants included 120 parent-adolescent dyads (ages 12-17) and an additional 24 parents who completed measures of diabetes-specific adolescent routines, general adolescent routines, diabetes self-care, and family support of youth diabetes care. The PDRQ:P/A demonstrated good internal consistency, test-retest reliability, and parent-child agreement, and adequate validity coefficients.

Health Care Transition for Young Adults With Type 1 Diabetes: Stakeholder Engagement for Defining Optimal Outcomes.

Objectives: Research on the transition to adult care for young adults with type 1 diabetes (T1D) emphasizes transition readiness, with less emphasis on transition outcomes. The relatively few studies that focus on outcomes use a wide variety of measures with little reliance on stakeholder engagement for measure selection.

Methods: This study engaged multiple stakeholders (i.

The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study.

Objectives: Parenting young children with type 1 diabetes (YC-T1D) entails pervasive challenges; parental coping may influence child and parent outcomes. This study used a qualitative descriptive design to describe these challenges comprehensively to inform the user-centered design of an Internet coping resource for parents.

Methods: A "Parent Crowd" of 153 parents of children with T1D onset at ≤ 5 years old submitted textual responses online to open-ended questions about parenting YC-T1D.

School-based Screening to Identify Children At Risk for Attention-Deficit/Hyperactivity Disorder: Barriers and Implications.

This report describes a school-based screening project to improve early identification of children at risk for attention-deficit/hyperactivity disorder (ADHD) and communicate these concerns to parents, recommending that they contact their child's primary care provider (PCP). Of 17,440 eligible children in first through fifth grades in five school districts, 47.0% of parents provided required written consent, and teachers completed 70.

Type 1 diabetes in very young children: a model of parent and child influences on management and outcomes.

The incidence of type 1 diabetes (T1D) in very young children (YC-T1D) is increasing globally. Managing YC-T1D is challenging from both a medical and psychosocial perspective during this vulnerable developmental period when complete dependence upon parental caretaking is normative and child behavior is unpredictable. The consequences of suboptimal glycemic control during this age range are substantial since these children will have T1D for many years and they are prone to adverse neuropsychological sequelae.

Topical Review: Advancing Research on the Transition to Adult Care for Type 1 Diabetes.

Objective: To acknowledge and address the gaps in health care transition (HCT) in type 1 diabetes (T1D) literature by proposing an expanded model that could guide future research.

Method: Topical literature review.

Results: Empirical research examining the outcomes of HCT in T1D is limited by methodological and interpretive problems.