Advance Care Planning for Children With Rare Diseases: A Pilot RCT.

BACKGROUND AND OBJECTIVE: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life. METHODS: A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions: (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric Next Steps: Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up. RESULTS: Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 1:1 randomization: 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI]: 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI: 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI: 1.62-7.94), more caregiver strain (1.2, P = .006, CI: 1.07-1.42); and less family well-being (0.8, P = .02, CI: 0.64-0.95). CONCLUSIONS: FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit.

OBJECTIVE: Investigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support. DESIGN: Cross-sectional observation. SETTING: Tertiary referral NICU in Mid-Atlantic USA. PATIENTS: Parents (n=300) in the Giving Parents Support trial at enrolment. MEASURES: Psychometric scales measured general stress, parental stress, NICU stress and social support. Demographic variables included education level, health insurance type, race, relationship status, age and gender. Length of stay was used to control for illness severity. Associations and potential modifying effects were evaluated using linear regression. RESULTS: Having less than a college degree (b=-2.52, SE=0.91) and female parent gender (b=-3.42, SE=1.47) were associated with lower parental stress scores. Older age in years was associated with higher parental stress scores (b=0.21, SE=0.07) but lower NICU stress scores (b=-0.01, SE=0.01). Greater social support scores were associated with lower scores of general (b=-2.76, SE=0.39) and parental stress (b=-1.71, SE=0.47). Less than a college degree (b=-0.26, SE=0.11), Medicaid insurance (b=-0.43, SE=0.11) and black race (b=-0.56, SE=0.12) were associated with decreased social support scores. Level of social support modified the relationship between education and parental stress, with higher social support decreasing education-based differences in parental stress scores (p=0.049). CONCLUSION: Sociodemographic risk factors may not infer stress or risk in the anticipated direction. Practice and future research should focus on identifying and supporting NICU families at high risk for stress and low support. TRIAL REGISTRATION NUMBER: NCT02643472.

Average Daily Risk Range (ADRR) in Young Children With Type 1 Diabetes.

OBJECTIVE: The objective was to examine the utility of the average daily risk range (ADRR) in young children with type 1 diabetes. METHODS: Self-monitored blood glucose (BG) data and A1c values were collected from 134 children (ages 2-6). Other measures of BG variability and diabetes care were calculated using self-monitored BG data. ADRR, A1c, and other glycemic indices were compared to assess their distinctiveness and utility as measures of BG variability and glycemic control. RESULTS: Of young children's ADRR values, 72% were in the "high-risk" range using adult guidelines. ADRR and A1c were highly correlated with indicators of hyperglycemia but only weakly correlated with measures of hypoglycemia. ADRR was moderately correlated with minimum BG value in the past 30 days but not percentage of BG values below 70 mg/dL. A1c was not correlated with either measure of hypoglycemia. CONCLUSIONS: ADRR values confirm the high degree of BG variability present in young children with type 1 diabetes, particularly as compared with adults. New ADRR risk guidelines are needed for pediatric patients. ADRR and A1c are adequate indicators of hyperglycemia in young children. However, both ADRR and A1c failed to effectively capture hypoglycemia risk in this sample, and neither ADRR nor A1c can take the place of review of raw BG data to evaluate BG variability in young children.