Children and Youth with Special Health Care Needs: Progress Towards More Family-Centered Systems of Care.

Children and youth with special health care needs have increasingly been included in community and society over the past 50 years. Changing definitions and programs in the education, health, and public health/Title V sectors document this greater inclusion. The most profound change was in the education system, with the passage of legislative mandates for inclusion and parental rights. Although the health system has no similar universal mandate, the sequential passage of Medicaid, Children's Health Insurance Plan, and the Patient Protection and Affordable Care Act led to expanded health care coverage with no pre-existing conditions and lifetime caps. Title V of the Social Security Act, originally passed in 1935, evolved from a focus on individual medical services to a public health systems approach focusing on building family-centered, coordinated, comprehensive care in community settings. Most of the changes in all the sectors are the result of the advocacy and engagement of parents and families; the Maternal and Child Health Bureau was a supportive and innovative leader for family-professional partnerships. Much work on understanding disparities across the sectors has led to more recent focus on equity.

Impact of continuous glucose monitoring in youth with type 1 diabetes aged 15-21 years.

BACKGROUND: People with type 1 diabetes (T1D) aged <21 years are eligible for subsidised continuous glucose monitoring (CGM) products under the Australian National Diabetes Services Scheme. There are few real-world published studies to evaluate the benefits of CGM in young adults. AIMS: To perform a real-world observation study among youth with T1D to evaluate CGM use and benefits of CGM. METHODS: Patients at the Westmead Hospital Young Adult Diabetes Clinic aged 15-21 years who commenced CGM before July 2018 were followed for 6 months post commencement of CGM. Differences in HbA1c and glucose metrics at baseline and follow up are compared between those commencing CGM and those that did not. RESULTS: Forty-four (38%) of 115 eligible patients commenced CGM. Demographic characteristics and baseline HbA1c did not differ significantly between those started on CGM and those that did not. At 6 months, 18 (41%) of 44 patients still used CGM, with discomfort and inconvenience the most common reasons for dropout. In CGM continuers, at 6 months compared with baseline, there was no change in HbA1c (8.2% vs 8.0%; P = 0.8), coefficient of variation of glucose (38% vs 39%; P = 0.5) or percentage time in range (52% vs 58%; P = 0.3). Six-month follow-up HbA1c in CGM non-users deteriorated significantly compared with users. Mean hypoglycaemia fear scores (worry scale) were significantly decreased from baseline at 6 months (33 vs 18; P < 0.01). CONCLUSION: There are high rates of discontinuation in CGM use among youth with T1D. At 6 months of CGM use, there was no significant change in glycaemic control, although HbA1c in non-users deteriorated significantly. Worry of hypoglycaemia was significantly decreased among those who continued CGM.

Use of continuous subcutaneous insulin infusion versus multiple daily injections in emerging adults with type 1 diabetes is associated with better clinical engagement but not glycaemic control.

BACKGROUND: Limited studies have compared outcomes between emerging adults with type 1 diabetes mellitus (T1D) attending a diabetes transition support programme using multiple daily injections (MDI) or continuous subcutaneous insulin infusion (CSII). AIMS: To assess glycaemic control and service utilisation in emerging adults with T1D on MDI or CSII attending a young adult diabetes clinic (YAC). METHODS: A retrospective cohort analysis was conducted from January 2013 to December 2015. Data collected included clinic visits per year, after-hours mobile telephone use, diabetic ketoacidosis (DKA) admissions and all HbA1c levels. Independent t-test was used to compare continuous variables whilst Pearson's Chi-squared test was used for categorical variables. Linear mixed effects models explored mean changes in HbA1c levels over time. RESULTS: Over 3 years, 318 youth with T1D (176 MDI, 121 CSII, 21 switched from MDI to CSII) attended our YAC. Aggregated mean HbA1c levels remained similar between modalities (CSII 9.1% vs MDI 9.3%; P = 0.23); however, mean change in HbA1c at 3 years was significantly increased in CSII users at 0.55% (95% CI 0.15-0.95; P < 0.01) compared with no significant change in MDI users. Clinic visits per year were improved in CSII users (CSII 2.8 vs MDI 2.5; P = 0.02), while DKA admissions remained similar between MDI and CSII users (3.6 admissions per 100 patient-years). CONCLUSION: In our YAC cohort, glycaemic control in CSII and MDI users was similar but well below recommended international glycaemic targets (HbA1c level < 7.0%). Despite increased clinical engagement occurring in CSII users, glycaemic deterioration was observed over the 3 years.

Family Engagement at the Systems Level: A Framework for Action.

While family engagement at the individual level of health care, such as families partnering with providers in decision-making about health care for an individual child has been well studied, family engagement in systems-level activities (e.g., participation in advisory and other decision-making groups, or creation and revision of policies) that impact the health services families and children receive has not. This note from the field presents a framework that describes the information and supports that help families partner with professionals and contribute to systems-level activities. Without attention to these components of family engagement, family presence and participation may be only token. We engaged an expert Family/Professional Workgroup whose members represented key constituencies and diverse geography, race/ethnicity, and areas of expertise; conducted a review of peer-reviewed publications and grey literature; and conducted a series of key informant interviews to identify best practices for supporting meaningful family engagement at the systems level. Based on an analysis of the findings, the authors identified four action-oriented domains of family engagement and key criteria that support and strengthen meaningful family engagement in systems-level initiatives. Child- and family-serving serving organizations can use this Family Engagement in Systems framework to support meaningful family engagement in the design of policies, practices, services, supports, quality improvement projects, research, and other systems-level activities.

Clinical and Radiologic Response of Central Giant Cell Granuloma to Denosumab: A 6-Year Prospective Observational Study.

Central giant cell granuloma (CGCG) is a rare lesion of the jaw occurring in young adults and adolescents. Surgery, the traditional mainstay of therapy, is associated with significant morbidity. Denosumab, a humanised monoclonal antibody to RANKL, is effective in a related entity, giant cell tumour of bone (GCTB), but experience in the more indolent CGCG is limited. This prospective observational study of all denosumab-treated CGCG at a tertiary referral centre (2015-2021) aimed to evaluate the safety, efficacy and recurrence risk using denosumab in CGCG at lower-frequency dosing than used for GCTB. All received standardised, time-limited courses of denosumab 120 mg with stepwise increase in dosing interval based on response. They were followed for up to 75 months using a radiation-minimising protocol: 3-monthly clinical, biochemical and radiological assessment (orthopantomograms, cone beam CT). Eight patients, median age 20.5 years [IQR 6], received 13 initial doses [IQR 10] of denosumab 120 mg. Radiologic response was seen after 5.5 doses [IQR 4.5]: ossification in all and size reduction in three. Recurrence occurred in four of seven completing therapy, observed 12 months post-cessation [IQR 6.5]. Larger baseline size, aggressive subtype and fewer than 12 initial doses were more common in the recurrence group. There was no osteonecrosis of the jaw. Hypocalcaemia occurred in one receiving modified dosing. This study represents the largest, most diverse cohort of denosumab-treated CGCG with the longest follow-up in literature. It demonstrates the efficacy of lower-frequency, time-restricted course of denosumab but highlights the risk of recurrence. Long-term follow-up is critical.

A Review of the Maternal and Child Health APHA Policy Statements, 1970-2019.

INTRODUCTION: The American Public Health Association (APHA) policy statements are written by members and approved by the APHA Governing Council. Policy statements inform APHA's position on key public health issues. Maternal and child health (MCH) is a broad discipline focused on health issues concerning women, children, youth, and families. APHA's MCH policies from the last 50 years were reviewed in celebration of the 100th anniversary of the MCH Section of APHA. METHODS: A cross-sectional design was utilized to identify MCH-related statements within the larger APHA policy statement database from 1970 to 2019 (N = 1,110). The policy statements were coded as primary MCH (main focus was MCH) or secondary MCH (mentioned MCH subpopulations as vulnerable population). The primary MCH themes were also identified. RESULTS: 545 (49%) of the APHA policy statements were related to MCH, including 226 (20%) coded as primary MCH and 319 (29%) secondary MCH. The primary MCH policy statements had a main focus on the following subpopulations: women (44%), children (33%), adolescents/young adults (15%), infants (12%), families (5%), and men (2%). Major themes included reproductive health/family planning, school health, children's health, pregnancy/childbirth, and breastfeeding/nutrition. CONCLUSIONS: MCH policy statements remained an important part of APHA's policy and advocacy focus over time as indicated through the continuous high number and proportion of MCH policy statements. The historical overview of MCH policy provides insight into critical policy issues confronting the MCH field over the decades and provides guidance for future policy initiatives including a need for increased emphasis on diverse MCH populations. SIGNIFICANCE: This analysis provides a 50 year overview of MCH themes as viewed by the policy statements published by APHA, the largest public health professional organization in the United States. These policy statements represent the cutting edge of MCH policy efforts and were written to influence national, state, and local public health policy. APHA policy statements should continue to address these important MCH topics in the future with an increased emphasis on diverse MCH populations. APHA policy making is a valuable national professional activity for the MCH field with the goal of improving the health for MCH communities.

Insulin resistance in type 1 diabetes managed with metformin (INTIMET): Study protocol of a double-blind placebo-controlled, randomised trial.

BACKGROUND: Insulin resistance is an under-recognised metabolic defect and cardiovascular risk factor in Type 1 diabetes. Whether metformin improves hepatic, muscle or adipose tissue insulin sensitivity has not been studied in adults with Type 1 diabetes. We initiated the INTIMET study (INsulin resistance in Type 1 diabetes managed with METformin), a double-blind randomised, placebo-controlled trial to measure the effect of metformin on tissue-specific insulin resistance in adults with Type 1 diabetes. METHODS: We will study 40 adults aged 20-55 years with Type 1 diabetes (HbA1c ≤ 80 mmol/mol [9.5%], fasting C-peptide <0.3 nmol/L) and 20 age-, gender- and body mass index (BMI)-matched controls. Insulin sensitivity will be determined by the two-step hyperinsulinaemic-euglycaemic clamp method with deuterated glucose to document liver, muscle and adipose insulin sensitivity. Subjects with Type 1 diabetes will be randomised to metformin extended-release 1500 mg daily or matched placebo for 26 weeks. The primary outcome is change in hepatic insulin sensitivity, assessed by change in basal rate of appearance (Ra) of glucose and suppression of endogenous glucose production (EGP) during the low-dose stage of the clamp. CONCLUSION: The INTIMET study is the first clinical trial to quantify the impact of metformin on liver, muscle and adipose insulin resistance in adults with Type 1 diabetes. This study may identify factors that predict an individual's response to metformin in Type 1 diabetes. TRIAL REGISTRATION: ACTRN12619001440112.

Parenting and social determinants of health.

Social determinants of health is a concept relevant to parenting in two ways. First, parenting behavior is a social determinant for child health and development; effective parenting is essential for successful emotional, physical and cognitive development. Second, social determinants of health are critical to the development and sustainability of adequate parenting behaviors, which, in term, are a social determinant of child health. Key social determinants related to parenting include economic stability, education, social and community context, neighborhood and built environment, access to health care and parenting interventions, and racism.

Prenatal cigarette smoking as a mediator between racism and depressive symptoms: The Biosocial Impact on Black Births Study.

OBJECTIVE: This study examined whether cigarette smoking mediated the association of racial discrimination with depressive symptoms among pregnant Black women. DESIGN: Cross-sectional. SAMPLE: Two hundred Black women at 8-29 weeks gestation. MEASUREMENTS: Women completed questionnaires including the Experiences of Discrimination and the Center for Epidemiologic Studies-Depression (CES-D) scales, as well as questions about sociodemographic characteristics and cigarette smoking. RESULTS: The mean age of the sample was 26.9 ± 5.7 years and the mean gestational age at data collection was 15.6 ± 5.7 weeks. Approximately 17% of women reported prenatal cigarette smoking; 27% had prenatal CES-D scores ≥23, which have been correlated with depression diagnoses; and 59% reported ever (lifetime) experiencing discrimination in at least one situation (e.g., at work). Path analysis results indicated that the standardized indirect effect of experiences of racial discrimination on CES-D scores through prenatal smoking was statistically significant (standardized indirect effect = 0.03; 95% CI: 0.001, 0.094; p = .042). CONCLUSION: Cigarette smoking during pregnancy partially mediated the association between lifetime experiences of racial discrimination and prenatal depressive symptoms among pregnant Black women. Smoking cessation programs should focus on identifying and treating depressive symptoms among pregnant Black women.

Scaling up Evidence-Based Interventions in US Public Systems to Prevent Behavioral Health Problems: Challenges and Opportunities.

A number of programs, policies, and practices have been tested using rigorous scientific methods and shown to prevent behavioral health problems (Catalano et al., Lancet 379:1653-1664, 2012; National Research Council and Institute of Medicine, 2009). Yet these evidence-based interventions (EBIs) are not widely used in public systems, and they have limited reach (Glasgow et al., American Journal of Public Health 102:1274-1281, 2012; National Research Council and Institute of Medicine 2009; Prinz and Sanders, Clinical Psychology Review 27:739-749, 2007). To address this challenge and improve public health and well-being at a population level, the Society for Prevention Research (SPR) formed the Mapping Advances in Prevention Science (MAPS) IV Translation Research Task Force, which considered ways to scale up EBIs in five public systems: behavioral health, child welfare, education, juvenile justice, and public health. After reviewing other efforts to scale up EBIs in public systems, a common set of factors were identified as affecting scale-up in all five systems. The most important factor was the degree to which these systems enacted public policies (i.e., statutes, regulations, and guidance) requiring or recommending EBIs and provided public funds for EBIs. Across systems, other facilitators of scale-up were creating EBIs that are ready for scale-up, public awareness of and support for EBIs, community engagement and capacity to implement EBIs, leadership support for EBIs, a skilled workforce capable of delivering EBIs, and data monitoring and evaluation capacity. It was concluded that the following actions are needed to significantly increase EBI scale-up in public systems: (1) provide more public policies and funding to support the creation, testing, and scaling up of EBIs; (2) develop and evaluate specific frameworks that address systems level barriers impeding EBI scale-up; and (3) promote public support for EBIs, community capacity to implement EBIs at scale, and partnerships between community stakeholders, policy makers, practitioners, and scientists within and across systems.

Attitudes towards mental health, mental health research and digital interventions by young adults with type 1 diabetes: A qualitative analysis.

BACKGROUND: Young people with type 1 diabetes are at increased risk of mental disorders. Whereas treatment need is high, difficulty recruiting young people with type 1 diabetes into psychosocial studies complicates development, testing and dissemination of these interventions. OBJECTIVE: Interviews with young adults with type 1 diabetes were conducted to examine attitudes towards mental health and mental health research, including barriers and motivators to participation in mental health studies and preferred sources of mental health support. The interviews were audio-taped, transcribed and evaluated via thematic analysis. SETTING AND PARTICIPANTS: Young adults with type 1 diabetes were recruited via social media channels of 3 advocacy organizations. A total of 31 young adults (26 females and 5 males) with an average age of 22 years were interviewed between October 2015 and January 2016. RESULTS: Participants were largely unaware of their increased vulnerability to common mental health problems and knew little about mental health research. Major barriers to participation included perceived stigma and lifestyle issues and low levels of trust in researchers. Opportunities to connect with peers and help others were described as key motivators. Psychological distress was considered normal within the context of diabetes. A need for some level of human contact in receiving psychosocial support was expressed. DISCUSSION AND CONCLUSION: Findings provide valuable insights into the complex dynamics of engaging young adults with type 1 diabetes in mental health studies. Interviewees provided practical suggestions to assist investigation and delivery of psychosocial interventions for this vulnerable group.

The effectiveness of a monetary incentive offer on survey response rates and response completeness in a longitudinal study.

BACKGROUND: Achieving adequate response rates is an ongoing challenge for longitudinal studies. The World Trade Center Health Registry is a longitudinal health study that periodically surveys a cohort of ~71,000 people exposed to the 9/11 terrorist attacks in New York City. Since Wave 1, the Registry has conducted three follow-up surveys (Waves 2-4) every 3-4 years and utilized various strategies to increase survey participation. A promised monetary incentive was offered for the first time to survey non-respondents in the recent Wave 4 survey, conducted 13-14 years after 9/11. METHODS: We evaluated the effectiveness of a monetary incentive in improving the response rate five months after survey launch, and assessed whether or not response completeness was compromised due to incentive use. The study compared the likelihood of returning a survey for those who received an incentive offer to those who did not, using logistic regression models. Among those who returned surveys, we also examined whether those receiving an incentive notification had higher rate of response completeness than those who did not, using negative binomial regression models and logistic regression models. RESULTS: We found that a $10 monetary incentive offer was effective in increasing Wave 4 response rates. Specifically, the $10 incentive offer was useful in encouraging initially reluctant participants to respond to the survey. The likelihood of returning a survey increased by 30% for those who received an incentive offer (AOR = 1.3, 95% CI: 1.1, 1.4), and the incentive increased the number of returned surveys by 18%. Moreover, our results did not reveal any significant differences on response completeness between those who received an incentive offer and those who did not. CONCLUSIONS: In the face of the growing challenge of maintaining a high response rate for the World Trade Center Health Registry follow-up surveys, this study showed the value of offering a monetary incentive as an additional refusal conversion strategy. Our findings also suggest that an incentive offer could be particularly useful near the end of data collection period when an immediate boost in response rate is needed.