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  • Author or Editor: Brandon G. Rocque x
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Daxa M. Patel, Brandon G. Rocque, Betsy Hopson, Anastasia Arynchyna, E. Ralee’ Bishop, David Lozano and Jeffrey P. Blount

OBJECT

A paucity of literature examines sleep apnea in patients with myelomeningocele, Chiari malformation Type II (CM-II), and related hydrocephalus. Even less is known about the effect of hydrocephalus treatment or CM-II decompression on sleep hygiene. This study is an exploratory analysis of sleep-disordered breathing in patients with myelomeningocele and the effects of neurosurgical treatments, in particular CM-II decompression and hydrocephalus management, on sleep organization.

METHODS

The authors performed a retrospective review of all patients seen in their multidisciplinary spina bifida clinic (approximately 435 patients with myelomeningocele) to evaluate polysomnographs obtained between March 1999 and July 2013. They analyzed symptoms prompting evaluation, results, and recommended interventions by using descriptive statistics. They also conducted a subset analysis of 9 children who had undergone polysomnography both before and after neurosurgical intervention.

RESULTS

Fifty-two patients had polysomnographs available for review. Sleep apnea was diagnosed in 81% of these patients. The most common presenting symptom was “breathing difficulties” (18 cases [43%]). Mild sleep apnea was present in 26 cases (50%), moderate in 10 (19%), and severe in 6 (12%). Among the 42 patients with abnormal sleep architecture, 30 had predominantly obstructive apneas and 12 had predominantly central apneas. The most common pulmonology-recommended intervention was adjustment of peripheral oxygen supplementation (24 cases [57%]), followed by initiation of peripheral oxygen (10 cases [24%]).

In a subset analysis of 9 patients who had sleep studies before and after neurosurgical intervention, there was a trend toward a decrease in the mean number of respiratory events (from 34.8 to 15.9, p = 0.098), obstructive events (from 14.7 to 13.9, p = 0.85), and central events (from 20.1 to 2.25, p = 0.15) and in the apnea-hypopnea index (from 5.05 to 2.03, p = 0.038, not significant when corrected for multiple measures).

CONCLUSIONS

A large proportion of patients with myelomeningocele who had undergone polysomnography showed evidence of disordered sleep on an initial study. Furthermore, 31% of patients had moderate or severe obstructive sleep apnea. Myelomeningocele patients with an abnormal sleep structure who had undergone nonoperative treatment with peripheral oxygen supplementation showed improvement in the apnea-hypopnea index. Results in this study suggested that polysomnography in patients with myelomeningocele may present an opportunity to detect and classify sleep apnea, identify low-risk interventions, and prevent future implications of sleep-disordered breathing.

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Alexandra Cutillo, Kathrin Zimmerman, Susan Davies, Avi Madan-Swain, Wendy Landier, Anastasia Arynchyna and Brandon G. Rocque

OBJECTIVE

The goal of this study was to determine what strategies caregivers use to cope with the stress of a child who has recently undergone surgical treatment for a newly diagnosed brain tumor. Results will be used to improve psychosocial assessments and treatments provided to these families during initial hospitalization.

METHODS

Caregivers of children with newly diagnosed brain tumors admitted to Children’s of Alabama were enrolled during the child’s initial hospitalization for surgical treatment from April 2016 to August 2017. The single-item, National Comprehensive Cancer Network visual analog Distress Thermometer (DT) was administered. Clinical and demographic variables were collected from the medical record. Approximately 1 month after patients were discharged from the hospital, caregivers participated in a semistructured interview that included questions about parent and family coping strategies. Broad questions about stress management since diagnosis were followed by specific questions about individual coping strategies. Interviews were recorded, transcribed, and coded for common themes. Themes were broadly characterized as adaptive versus maladaptive coping. Analysis was then performed to determine if DT scores or clinical or demographic factors were associated with the presence of maladaptive coping using a concurrent triangulation mixed-methods design.

RESULTS

Caregivers identified several adaptive coping strategies, such as active coping, acceptance coping, emotion-focused coping, spiritual coping, social support, and posttraumatic growth. Maladaptive coping strategies were mostly categorized as avoidant coping. Caregivers endorsed multiple different coping strategies (mean of 4.59 strategies per caregiver). No clinical or demographic variables, whether the tumor was benign or malignant, or the DT score correlated with caregiver endorsement of maladaptive coping strategies.

CONCLUSIONS

Caregivers of children newly diagnosed with brain tumors employ a number of coping strategies, some of which are maladaptive. The authors have not identified any method for predicting who is at risk for maladaptive coping. Assessment of coping skills and education about coping have the potential to improve overall care delivery to these families.

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Brandon G. Rocque, Alexandra Cutillo, Kathrin Zimmerman, Anastasia Arynchyna, Susan Davies, Wendy Landier and Avi Madan-Swain

OBJECTIVE

Hospitalization for a newly diagnosed pediatric brain tumor is an extremely stressful time for a family, but this period has not been the focus of rigorous study. The purpose of this study was to quantify distress and psychosocial risk in this population to improve psychosocial care delivery.

METHODS

The authors administered the National Comprehensive Cancer Network Distress Thermometer (DT) and the Psychosocial Assessment Tool 2.0 (PAT) to primary caregivers of all children admitted to Children’s of Alabama with a new brain tumor between April 2016 and August 2017. The DT is a single-item measure of distress (scale range 0–10). The PAT (range 0–7) stratifies families by risk level: a score less than 1.0 indicates universal risk level (risk typically experienced during hospitalization); a score of 1.0–2.0 indicates targeted risk (specific psychosocial difficulties that impact medical treatment); and a score higher than 2.0 indicates clinically significant risk. Demographic and clinical information was abstracted from each child’s medical record. A correlation matrix using nonparametric statistics was created between abstracted data and the DT and PAT scores.

RESULTS

Forty primary caregivers were enrolled (of 49 eligible), with the patient age ranging from newborn to 17 years (mean 7.7 years). Twenty-five (63%) of the children were male, and 24 (60%) were white, non-Hispanic. Mean and median DT scores were 7.2 (SD 2.6) and 7, respectively. However, 12 (30%) rated their distress 10/10, and 85% rated distress 5 or greater. PAT scores ranged from 0.0 to 2.36 with mean and median scores of 0.89 (SD 0.50) and 0.86, respectively. PAT results for 16 (40%) families were in the targeted or clinical range, indicating psychosocial factors that have the potential to interfere with medical treatment. No clinical or demographic variable correlated significantly with the DT or PAT score.

CONCLUSIONS

Families of children with newly diagnosed brain tumors experience high levels of distress and psychosocial risk. This work will serve as the foundation for efforts to standardize psychosocial evaluation for newly diagnosed pediatric neurosurgical patients, and to create protocols that organize existing hospital-based psychosocial support services. These efforts have the potential to improve patient and family satisfaction as well as treatment outcomes.

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Dagoberto Estevez-Ordonez, Matthew C. Davis, Betsy Hopson, MSHA, Anastasia Arynchyna, Brandon G. Rocque, Graham Fieggen, Gail Rosseau, Godfrey Oakley, MSPM and Jeffrey P. Blount

Neural tube defects (NTDs) are one of the greatest causes of childhood mortality and disability-adjusted life years worldwide. Global prevalence at birth is approximately 18.6 per 10,000 live births, with more than 300,000 infants with NTDs born every year. Substantial strides have been made in understanding the genetics, pathophysiology, and surgical treatment of NTDs, yet the natural history remains one of high morbidity and profound impairment of quality of life. Direct and indirect costs of care are enormous, which ensures profound inequities and disparities in the burden of disease in countries of low and moderate resources. All indices of disease burden are higher for NTDs in developing countries. The great tragedy is that the majority of NTDs can be prevented with folate fortification of commercially produced food. Unequivocal evidence of the effectiveness of folate to reduce the incidence of NTDs has existed for more than 25 years. Yet, the most comprehensive surveys of effectiveness of implementation strategies show that more than 100 countries fail to fortify, and consequently only 13% of folate-preventable spina bifida is actually prevented. Neurosurgeons harbor a disproportionate, central, and fundamental role in the management of NTDs and enjoy high standing in society. No organized group in medicine can speak as authoritatively or convincingly. As a result, neurosurgeons and organized neurosurgery harbor disproportionate potential to advocate for more comprehensive folate fortification, and thereby prevent the most common and severe birth defect to impact the human nervous system. Assertive, proactive, informed advocacy for folate fortification should be a central and integral part of the neurosurgical approach to NTDs. Only by making the prevention of dysraphism a priority can we best address the inequities often observed worldwide.