Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors.

CONTEXT: Craniopharyngioma (CP) is a rare brain tumor associated with severe comorbidities that reduce survivor health-related quality of life (HRQOL). However, CP impact on caregivers is unknown. OBJECTIVE: To measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP. METHODS: Eighty-two participants who self-identified as caregivers of CP survivors responded to an online survey including caregiver-reported Pediatric Quality of Life Inventory (PedsQL), and the Zarit Burden Interview (ZBI). RESULTS: Caregivers reported an average of 13 out of 29 health conditions in survivors following tumor treatment, including excess weight, hypopituitarism, fatigue, mood, cognition, social issues, temperature dysregulation, visual impairment, and sleep problems. Strikingly, 70% of survivors who experienced obesity also experienced hyperphagia. ZBI scores were moderate with a median of 37. PedsQL total scores were poor with a median of 46.2. ZBI scores were independent of caregiver level of education and care duration. Both scores were independent of income, survivor age, gender, age at diagnosis, or tumor recurrence. In contrast, both scores depended on the number (P < .001) and the type of survivor health problems, with significantly worse scores for caregivers or survivors with symptoms of hypothalamic dysfunction (P < .001) including hyperphagia but not obesity. PedsQL total scores significantly predicted ZBI scores (P < .001). CONCLUSION: Survivor poly-symptomatology predicted and incurred significant caregiver burden. Our study separated hyperphagia and obesity and identified hyperphagia and other hypothalamic dysfunction symptoms as understudied issues. Altogether, these findings draw particular attention to the unmet needs of CP survivors and their caregivers.

Telementoring initiative for newborn care providers in Kenya, Pakistan and Tanzania.

OBJECTIVES: To support governments' efforts at neonatal mortality reduction, UNICEF and the American Academy of Pediatrics launched a telementoring project in Kenya, Pakistan and Tanzania. METHODS: In Fall 2019, an individualised 12-session telementoring curriculum was created for East Africa and Pakistan after site visits that included care assessment, patient data review and discussion with faculty and staff. After the programme, participants, administrators and UNICEF staff were surveyed and participated in focus group discussions. RESULTS: Participants felt the programme improved knowledge and newborn care. Qualitative analysis found three common themes of successful telementoring: local buy-in, use of existing training or clinical improvement structures, and consideration of technology needs. CONCLUSIONS: Telementoring has potential as a powerful tool in newborn education. It offers more flexibility and easier access than in-person sessions. This project has the potential for scale-up, particularly when physical distancing and travel restrictions are the norm.

Transcatheter elimination of left-to-right shunts in infants with bronchopulmonary dysplasia is feasible and safe.

OBJECTIVE: To test the hypothesis that transcatheter elimination of left-to-right (L-R) cardiac shunts in former premature infants with bronchopulmonary dysplasia (BPD) is feasible, safe, and is associated with an improvement in respiratory status. DESIGN: Retrospective case review. PATIENTS: Twelve patients with BPD who underwent an attempt at transcatheter closure of an L-R shunt lesion within the first year of life at a single center. Median weight was 5.4 kg and median age was 6 months. Fifteen L-R shunt lesions included patent ductus arteriosus (n = 1), atrial septal defect (ASD) (n = 9), and aortopulmonary collaterals (n = 5). OUTCOME MEASURES: Echocardiographic and clinical markers were collected before and after intervention as well as procedural variables including successful elimination of the shunt and procedural complications. RESULTS: The L-R shunts were successfully occluded in 11/12 (91.6%) patients without any significant procedural adverse event. The ASD closure group demonstrated a decrease in right heart size after the procedure. All patients required respiratory support prior to, and 1 month after, the procedure while only 5/10 (50%) required respiratory support at 12 months of age (P = .0129). There was no change in the median weight percentile over time. CONCLUSION: Transcatheter occlusion of L-R shunts can be performed safely and effectively in children with BPD. Further studies may clarify the role of such therapy in improvement in respiratory physiology over time.

Neonatal resuscitation skills among pediatricians and family physicians: is residency training preparing for postresidency practice?

BACKGROUND: Pediatricians and family physicians are responsible for providing newborn resuscitation, yet Accreditation Council for Graduate Medical Education requirements for training in this area during residency differ markedly for the two specialties. Our objectives were to determine (1) the extent to which neonatal resuscitation training differs for pediatric and family medicine residents; (2) the extent to which general pediatricians and family physicians engage in newborn resuscitation in their practice; and (3) whether use of resuscitation skills differs between urban/suburban and rural providers. METHODS: We surveyed a national cohort of pediatricians and family physicians who obtained board certification between 2001 and 2005. Data were analyzed based on type of physician and setting of current practice. RESULTS: Survey response rate was 22% (382 of 1736). Compared with family medicine physicians, pediatricians received more neonatal resuscitation training during residency. Most members of both groups had attended no deliveries in the year prior to the survey (75% [111 of 148] versus 74% [114 of 154]). In their current practice, the groups were equally likely to have provided a newborn bag and mask ventilation, chest compressions, and resuscitation medications. Pediatricians were more likely than family physicians to have attempted to either intubate a newborn (20% [28 of 148] versus 10% [16 of 153]; P  =  .0495) or insert umbilical catheters (15% [22 of 148] versus 5% [8 of 153]; P  =  .005). Regardless of specialty, rural physicians were much more likely to report that they attended deliveries (61% [41 of 67] versus 15% [36 of 234]; P < .001). Among rural pediatricians attending deliveries, 44% (7 of 16) reported feeling inadequately prepared for at least one delivery in the past year. CONCLUSIONS: Few primary care pediatricians and family physicians provide newborn resuscitation after residency. For those who do attend deliveries, current training 5 provide insufficient preparation. Flexible, individualized residency curricula could target intensive resuscitation training to individuals who plan to practice in rural areas and/or attend deliveries after graduation.