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. It is widely recognised that the individual's perspective about the impact of trying to manage the disease and the burden that self-management confers must be addressed to achieve optimal health outcomes. Standardised, rigorous assessment of mental and behavioural health status, in interaction with physical health outcomes is crucial to aid understanding of person-reported outcomes (PROs). Whilst tempting to conceptualise PROs as an issue of perceived quality of life (QoL), in fact health-related QoL is multi-dimensional and covers indicators of physical or functional health status, psychological and social well-being. This complexity is illuminated by the large number of person reported outcome measures (PROMs) that have been developed across multiple psychosocial domains. Often measures are used inappropriately or because they have been used in the scientific literature rather than based on methodological or outcome assessment rigour. Given the broad nature of psychosocial functioning/mental health, it is important to broadly define PROs that are evaluated in the context of therapeutic interventions, real-life and observational studies. This report summarises the central themes and lessons derived in the assessment and use of PROMs amongst adults with diabetes. Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data.

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. pediatric diabetes clinics. Methods: Medical (n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial (n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ2 Tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers. Results: Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by <55% of clinics. Psychosocial, compared with medical, providers were more likely to report frequent implementation of psychosocial assessment and intervention guidelines. Conclusion: Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes.

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 PDRQ-PYC total score demonstrated good internal consistency, convergent validity, and criterion validity. The present study demonstrates that PDRQ-PYC is a valuable and feasible tool for measuring the consistency and regularity with which families of YC-T1D perform T1D management tasks. Along with the school-age and adolescent versions of the PDRQ, the PDRQ-PYC now provides the ability to assess diabetes-specific routines from early childhood through adolescence and findings support the notion that routines are associated with engagement in diabetes tasks.ClinicalTrials.gov Identifier NCT03222180 (first posted July 19, 2017).

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. RESEARCH DESIGN AND METHODS: Retrospective cohort study of young adults in a large adult endocrinology system who transitioned from a pediatric hospital system after 2009. MH disorders were diagnosed by clinical pediatric psychologists during routine care at the pediatric hospital. Measurements of Hemoglobin A1c, diabetes-related emergencies, clinic attendance and intervals in transition were assessed and compared between the pediatric and adult hospital systems. RESULTS: 237 young adults were identified and 100 (42%) of these were diagnosed with a MH disorder during pediatric care. Presence of a MH disorder was associated with higher Hemoglobin A1c levels prior to transition and increased rates of diabetes-related hospitalizations during the transition interval. Patients with a MH disorder were less likely to establish a pattern of consistent follow up after transition (p = 0.021). CONCLUSIONS: MH disorders are common and predict greater challenges with diabetes management and less effective transition into the adult endocrinology system. Early recognition of MH disorders may allow for allocation of more proactive and intensive support for affected patients.

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. RESULTS: Although there was a difference in the absolute number of in-person versus telehealth visits canceled during these two time periods, there was no difference in the rates of completed, canceled, and no-show visits completed in person or via telehealth. This finding suggests that, despite a rapid shift to a completely new health care delivery model, our providers completed a similar rate of patient care via telehealth during the COVID-19 quarantine and that telehealth may be a feasible method for providing diabetes care. However, our results also suggested that youths' glucose management was less optimal during the quarantine period. CONCLUSION: COVID-19 presented an opportunity to adopt and test the feasibility of using a telehealth delivery model for routine diabetes care. Yet, to make telehealth a viable treatment delivery alternative will likely involve the uptake of new clinic procedures, investment in institutional infrastructure, and team-based flexibility.

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. Parents of young children with T1D (n = 172) were participants in a randomized trial of an online intervention. We examined the DBFS-P factor structure through principal component analysis (PCA); internal consistency through Cronbach's alpha; convergent validity via bivariate correlations between the DBFS-P and measures of parental depression, anxiety, T1D self-efficacy, and hypoglycemia fear; and discriminant validity via bivariate correlations between the DBFS-P and measures of parental somatization and child behavior problems. PCA revealed one factor (56.47% variance) with Cronbach's α = 0.95. Convergent validity of the DBFS-P was supported by significant correlations with parental depression (r = -0.35, P < 0.001), anxiety (r = -0.20, P = 0.008), T1D self-efficacy (r = 0.36, P < 0.001), and hypoglycemia fear (r = 0.27, P < 0.001). Non-significant correlations with parental somatization (r = -0.06, P = 0.42) and child behavior problems (r = -0.12, P = 0.14) support its discriminant validity. The DBFS-P demonstrated good psychometric properties as a tool for assessing BF among caregivers.

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. Confirmatory factor analysis supported a one-factor model. Promising results were obtained. The PDRQ:P/A is a clinically feasible parent- and self-report measure that can provide valuable information regarding how frequently adolescents engage in their diabetes management tasks in a consistent manner. Addition of an adolescent report format will enhance the utility of the measure for clinical and research use.

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. Poor adaptation to T1D during these early years may engender a persistent trajectory of negative outcomes that can be very resistant to change. The empirical research on the YC-T1D population (age <6 yr) has indicated multiple mechanisms through which parent characteristics, parent coping skills, and child characteristics interact to yield a pattern of T1D management behaviors that affect T1D outcomes. However, this research has not yet led to a well-conceived conceptual model for identifying and understanding these mechanisms or for specifying research gaps and future research directions. The aim of this review is to propose such a conceptual model linking parent characteristics, parent coping, and child characteristics to T1D management behaviors and outcomes. This article reviews the literature focusing on research pertinent to YC-T1D and elements of our proposed model, identifies and discusses gaps in the literature, offers directions for future research, and considers a range of possible interventions targeting the unique needs of this special population.