Journal of Pediatrics最新文献

Objective: To evaluate psychosocial functioning among youth with hereditary polyposis syndromes (HPS) and their caregivers.

Study design: Data on health-related quality of life (HRQOL), illness uncertainty (CIUS/PIUS), caregiver psychological distress, and caregiver-perceived blame/fault were collected as part of standard care visits to a multidisciplinary polyposis clinic.

Results: Psychosocial data were obtained from 33 youth ages 8-18 and 63 caregivers. About 15% of youth and 13% of caregivers endorsed elevated illness uncertainty. HRQOL was poorest in emotional and school functioning. Mean (± SD) caregiver distress scores were 1.03 ± 1.59 and mean blame/fault scores were 2.56 ± 2.53, with 21% of caregivers feeling at fault for their child's HPS. Significant correlations were found between child- and caregiver-reported illness uncertainty (r = 0.52, p < 0.01) and caregiver perceived fault was significantly correlated with caregiver distress (r = 0.26, p = 0.04). Caregivers with a shared diagnosis endorsed feeling at fault for their child's HPS diagnosis and endorsed significantly greater distress. Caregivers of youth with minority status endorsed significantly greater distress (H(4) = 10.54, p = 0.03) and caregiver perceived fault was higher for male youth.

Conclusions: Findings suggest that youth with HPS are at risk of poor HRQOL and elevated illness uncertainty, and caregivers similarly show elevated risk for psychological distress, perceived fault for the youth's HPS diagnosis, and elevated illness uncertainty. Some socioeconomic factors also have significant implications for caregiver's overall functioning. These findings highlight the need for psychosocial functioning to be a primary target and consideration in HPS care.

Objective: To determine the impact of different feeding strategies in children born moderate-and-late preterm (MLPT) on later neurosensory impairment.

Study design: Children born MLPT (32⁺⁰-35⁺⁶ weeks) recruited to the DIAMOND factorial randomized trial from New Zealand neonatal units were randomized to intravenous amino acids vs intravenous dextrose, exclusive maternal breastmilk vs milk supplement, and taste/smell of milk before gastric tube feeds or not. Neurosensory impairment (blindness, deafness, cerebral palsy or developmental delay [Bayley III composite cognitive/language/motor scores < 85]) was assessed at 2 years of corrected age. Outcomes were compared using generalized linear mixed models.

Results: Of 529 eligible children, 425 were assessed at mean (SD) 25.6 (1.9) months. Rates of neurosensory impairment or developmental delay were similar in amino acids vs dextrose and in milk supplement vs maternal breastmilk only groups, but impairments were less frequent in children randomized to taste/smell of milk (43/203 [21%] vs 68/220 [31%]; aRR 0·7; 95% CI 0·5 to 0·9; P=0·02). This difference was primarily due to mild developmental delay, particularly language delay (35/199 [18%] vs 61/218 [28%]; aRR 0.6; 95% CI 0.4 to 0.9; P=0.01). Growth, general health and behavior were similar between groups.

Conclusions: Early parenteral and enteral nutrition strategies in children born MLPT did not alter outcomes at 2 years. However, exposure to taste/smell of milk before gastric tube feeds was associated with a lower risk of neurosensory impairment. Further investigation to confirm these findings is necessary.