Belinda Mandrell - Academia.edu (original) (raw)
Papers by Belinda Mandrell
Sleep, Apr 1, 2018
Introduction: Sleep disorders and short sleep duration have been associated with 25-hydroxyvitami... more Introduction: Sleep disorders and short sleep duration have been associated with 25-hydroxyvitamin D (25OHD) deficiency in adults and short sleep duration in the elderly has been improved by supplementation. Only two cross-sectional studies have been performed among children and showed a positive association between 25OHD deficiency, obstructive sleep apnea and primary snoring. No longitudinal studies have been performed in children from the general population. Methods: A total of 259 children from the French EDEN mother-child birth cohort with available data for both blood cord 25OHD dosage (measured by radioimmunoassay), and night-sleep duration trajectories between 2 and 5-6 years old (previously obtained by group-based trajectory modeling), were included in the study. Association between 25OHD dosage and night-sleep duration trajectories was investigated using multinomial logistic model adjusting for gender, birth season and recruitment center. Results: In the study sample, 4.9% of the children belonged to the persistent short (≈10h/night), 47.9% to the persistent medium-low (≈11h/night,), 37.2% to the persistent medium-high (≈11h30/night), 4.6% to the long (>11h30/night) and 5.4% to the changing (>11h30 then at ≈11h/night) night-sleep trajectories. The mean blood cord 25OHD level was 18.9 ng/ml (from 3.0 to 62.7 ng/ml). The 25OHD level was <10 ng/ml, 10-21 ng/ml, 21-30 ng/ml and ≥30 ng/ml in 22.1%, 36.7%, 25.1% and 16.1% of the children, respectively. Multivariable analysis showed that lower 25OHD was associated with an increased risk for children to belong to the persistent short sleep compared to medium-low sleep trajectory [OR=1.15 (1.04-1.27) per 1 ng/ml 25OHD, p=0.007]. No significant relationship was observed with other trajectories. Conclusion: Lower blood cord vitamin D levels are associated with an increased probability of belonging to the persistent short-nightsleep trajectory between 2 and 5-6 years of age, which suggests that prenatal vitamin D exposure has an impact on subsequent night-sleep duration.
Journal of Psychosomatic Research, Sep 1, 2023
JCO oncology practice, Jun 1, 2021
PURPOSE: Cancer patients' belief about prognosis can heavily influence medical decision makin... more PURPOSE: Cancer patients' belief about prognosis can heavily influence medical decision making and goals of care. It is known that parents of children with cancer tend to be optimistic regarding their child's prognosis; however, little is known about pediatric patients' prognostic beliefs, how physicians' prognostic communication is perceived, and how these perceptions are compared with actual prognoses. PATIENTS AND METHODS: An original survey was administered to 100 pediatric oncology patients, age 10-18 years, and their parents from 2013 to 2015, at St Jude Children's Research Hospital. Patients were eligible for inclusion if they had an oncologic diagnosis, were between 1 month and 1 year from diagnosis, and were English speaking. Survey responses regarding perceived prognosis were compared with actual prognoses as determined from the medical record review and published literature. Analysis included descriptive statistics and association tests. RESULTS: Nearly half of participants (patients = 48.9%, parents = 50.5%) displayed prognostic optimism as compared with the determined objective estimate of curative potential. The majority of both patients (78%) and parents (85%) reported belief in a very high chance of cure, although fewer reported that their physician communicated a very high chance for cure (patients = 57%, parents = 70%), and only 43% were determined to have a very high probability of cure. Significant differences were noted in prognostic optimism by cancer type ( P < .0001); patients with solid tumor were more often optimistic (n = 25, 83.3% optimistic; n = 5, 16.7% accurate), and patients with lymphoma were most often accurate (n = 2, 8.7% optimistic; n = 21, 91.3% accurate). CONCLUSION: Pediatric oncology patients and parents tend to be optimistic about their chance of cure, as compared to both perceived prognostic communication from physicians and objective estimated prognosis. Understanding the nature of prognostic optimism among patients with cancer and caregivers may empower clinicians to guide realistic decision making while supporting hope.
Pediatric Physical Therapy, 2017
Cambridge University Press eBooks, Dec 22, 2009
Pediatric oncology, 2020
The completion of the Human Genome Project revolutionized our understanding of precision health c... more The completion of the Human Genome Project revolutionized our understanding of precision health care. Currently, patients have numerous genetic and genomic testing options including predictive and diagnostic screening. Genetic/genomic screening provides precision medical care based on patient classification, such as disease susceptibility to understanding of disease etiology, as well as understanding an individual response to treatment. This chapter describes genetic and genomic precision health care, as well as the interaction of the individual’s environment, family, and lifestyle. This vastly changing care environment has a significant impact on nursing practice, as nurses promote potential benefit while respecting the patient and family decision-making process. Within the precision health care environment, we, as nurses, must take responsibility in supporting the well-being of our patients and families, while fostering new knowledge.
Pediatric Blood & Cancer, Apr 6, 2021
BackgroundTo examine associations between phenotypes of short sleep duration and clinically asses... more BackgroundTo examine associations between phenotypes of short sleep duration and clinically assessed health conditions in long‐term survivors of childhood cancer.MethodsSurvivors recruited from the St. Jude Lifetime Cohort (n = 911; 52% female; mean age 34 years; 26 years postdiagnosis) completed behavioral health surveys and underwent comprehensive physical examinations. Sleep was assessed with the Pittsburgh Sleep Quality Index. Short sleep was defined as ≤6 h per night with phenotypes of short sleep including poor sleep efficiency (<85%), prolonged sleep onset latency (SOL; ≥30 min), and wake after sleep onset (≥3 times per week). Covariates included childhood cancer treatment exposures, demographics, body mass index, and physical inactivity. Separate modified Poisson regression models were computed for each health category to estimate relative risks (RR) and 95% confidence intervals (CI). Multinomial logistic regression models examined associations between sleep and an aggregated burden of chronic health conditions.ResultsShort sleep duration was reported among 44% (95% CI 41%–47%) of survivors. In multivariable models, short sleep duration alone was associated with pulmonary (RR = 1.35, 95% CI 1.08–1.69), endocrine (RR = 1.22, 95% CI 1.06–1.39) and gastrointestinal/hepatic conditions (RR = 1.46, 95% CI 1.18–1.79), and anxiety (RR 3.24, 95% CI 1.64–6.41) and depression (RR = 2.33, 95% CI 1.27–4.27). Short sleep with prolonged SOL was associated with a high/severe burden of health conditions (OR = 2.35, 95% CI 1.12–4.94).ConclusionsShort sleep duration was associated with multiple clinically ascertained adverse health conditions. Although the temporality of these associations cannot be determined in this cross‐sectional study, sleep is modifiable and improving sleep may improve long‐term health in survivors.
Cancer, Mar 22, 2019
Patients with cancer are increasingly offered genomic sequencing, including germline testing for ... more Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information. METHODS: Parents of children with cancer were offered the opportunity to have their children's tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2-visit informed consent model. Baseline genetic knowledge and self-reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered. RESULTS: As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one-third of the parents. No relation was identified between the change in the overall percentage of correct answers and self-reported literacy, numeracy, or demographics. CONCLUSIONS: The use of a 2-visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding. Cancer 2019;0:1-10.
Aids Education and Prevention, Aug 1, 2013
Sleep, Apr 1, 2020
Introduction Sleep disturbances are prevalent among adult survivors of childhood cancer, though l... more Introduction Sleep disturbances are prevalent among adult survivors of childhood cancer, though little is known about associations between sleep and health in this vulnerable population. Methods Survivors recruited from the St. Jude Lifetime Cohort (n=911; 52% female; mean age 34 years; 26 years post-diagnosis) completed surveys assessing habitual sleep patterns and mental health and underwent comprehensive physical examinations. A subset of survivors (n=491) completed sleep actigraphy. Short sleep duration was defined as sleeping &amp;lt;7 hours per night, assessed via self-report or actigraphy. Clinically-assessed health outcomes were defined as grade ≥2 using modified CTCAE criteria for cardiac, pulmonary, and renal conditions. Anxiety and depression were defined as scores ≥90th percentile on the Brief Symptom Inventory-18. Covariates included childhood cancer treatment exposures, demographics, body mass index, and physical inactivity. Separate logistic or modified Poisson (common outcomes) regression models were computed for each health category to estimate odds ratios (OR) or relative risks (RR) and 95% confidence intervals (CI). Results Self-report and actigraphy-assessed short sleep was identified in 44% and 42% of survivors, respectively. However, these measures were weakly correlated (r=0.23). In adjusted multivariable models, self-reported short sleep was associated with higher risk of pulmonary conditions (RR=1.3, 95% CI=1.1-1.7), depression (OR=2.6, 95% CI=1.4-5.1) and anxiety (OR=3.4, 95% CI=1.6-6.8), while associations with cardiac (RR=1.10, 95% CI=0.94-1.30) and renal conditions (OR=1.30, 95% CI=0.79-2.13) were not significant. There were no significant associations between actigraphy-assessed short sleep and any of the health outcomes. Conclusion Habitual self-reported short sleep was associated with clinically ascertained adverse health outcomes. Although the temporality of these associations cannot be determined in this cross-sectional study, sleep is a modifiable health behavior and improving sleep may improve health in survivors. Measures of self-reported sleep may have unique value when assessing the relationship between sleep and health. Support CA225590, K. Krull Principal Investigator; CA195547, M. Hudson and L. Robison Principal Investigators; CA21765, C. Roberts, Principal Investigator
Behavioral Sleep Medicine, Jul 14, 2019
Objective/Background: Youth with craniopharyngioma are at increased risk for excessive daytime sl... more Objective/Background: Youth with craniopharyngioma are at increased risk for excessive daytime sleepiness and narcolepsy. Polysomnography (PSG) is the gold standard for diagnosing sleep disorders, but is time-intensive, costly, and does not offer an in vivo measure of typical sleep routine. We determined the sensitivity, specificity, and accuracy of actigraphy compared with PSG in measuring nocturnal sleep in pediatric craniopharyngioma. Participants: Fifty youth with craniopharyngioma (age 3-20 years) were assessed by overnight PSG and concurrent actigraphy after surgical resection and before proton therapy. Methods: PSG and actigraphy data were synchronized utilizing an epochby-epoch comparison method. Sensitivity, specificity, and accuracy were calculated using measures of true wake, true sleep, false wake, and false sleep. Bland-Altman plots were conducted to further assess level of agreement. Results: Actigraphy was 93% sensitive (true sleep [TS]) and 87% accurate (ability to detect TS and true wake) in measuring sleep versus wakefulness and was a reliable measure of sleep efficiency (SE) and sleep latency (SL). Specificity (true wake) was poor (55%) and total sleep time (TST) was underestimated by an average of 15.1 min. Wake after sleep onset (WASO) was overestimated by an average of 14.7 min. Conclusions: Actigraphy was highly sensitive and accurate and was a reliable measure of SE and SL. Although there were differences in TST and WASO measurements by actigraphy and PSG, our findings provide the basis for future studies on the use of actigraphy to monitor treatment response to wakefulness-promoting medications in youth with craniopharyngioma who demonstrate excessive daytime sleepiness.
Sleep, May 1, 2023
understood. New wearable or minimally invasive technologies facilitate the recording of electroen... more understood. New wearable or minimally invasive technologies facilitate the recording of electroencephalography (EEG) with lower spatial resolution than standard EEG but much greater longitudinal dispersion. This enables investigation of day-today variation in sleep measured directly with EEG. This study will compare EEG-derived sleep parameters with covariates such as sustained attention and subjective sleep quality. Methods: Twenty-five healthy adults were implanted with a two-channel subcutaneous EEG (sqEEG) lead. Twenty subjects completed the 1-year protocol (average 32±13 years of age). Their sqEEG signals were recorded each night for 1 year alongside a morning 3-minute Psychomotor Vigilance Task (PVT) and self-reported sleep quality, which included Karolinska Sleepiness Scale (KSS). A deep learning model, U-Sleep, was fine-tuned on sqEEG with synchronized gold standard polysomnography used as ground truth. Hypnograms and sleep parameters were thus automatically calculated. Results: Subjective sleep quality measured by KSS revealed a moderate negative correlation with rapid-eye-movement (REM) duration (r=-0.31, 95% CI=(-0.31, -0.31)), and total sleep time (TST) (r=-0.31, 95% CI=(-0.31, -0.31)). There was a moderate correlation between KSS and mean PVT reaction time (r=0.21, 95% CI=(0.21, 0.22)). There was a low negative correlation between PVT and TST (r=-0.1). Preliminary results indicate a moderate correlation between sleep parameters and subjective sleep quality. The correlations with PVT were lower, which suggests that 3-minute PVT is not sensitive to TST in normal sleep. However, the correlation between PVT and KSS suggests that PVT does predict subjective sleep quality, but to a smaller degree than standard sleep parameters. Measuring day-to-day variation in high-quality EEG-based sleep recordings has the potential of creating a new branch in sleep medicine. Patients can be evaluated not only by findings in a single recording but the stability and variation of all findings can be analyzed. Preliminary results suggest that subjective sleep quality can be predicted directly from sqEEG and potentially be explained by behavioral factors in a subsequent cause-effect analysis. The project is supported by Innovation Fund Denmark, UNEEG medical, and T&W Engineering.
JCO precision oncology, Oct 1, 2022
PURPOSE Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many... more PURPOSE Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many centers are interested in offering testing of tumors and paired germline tissues at or near the time of cancer diagnosis. We conducted this study to better understand parent preferences surrounding timing and content of consent conversations for clinical germline genetic testing of their children with cancer as a part of real-time cancer care. PATIENTS AND METHODS A seven-question survey developed by the Division of Cancer Predisposition and collaborators at St Jude Children's Research Hospital (St Jude) was distributed to members of the St Jude Patient Family Advisory Council, which included parents of childhood cancer survivors and bereaved parents whose children with cancer had died. Parents were asked to provide free text comments after each question. Qualitative methods were used to derive codes from parent comments, and survey results were depicted using descriptive statistics. RESULTS The survey was completed by 172 parents. Ninety-three (54%) endorsed an approach for consent conversations ≥ 1 month after cancer diagnosis, whereas 58 (34%) endorsed an approach at 1-2 weeks and 21 (12%) at 1-2 days. Needing time to adjust to a new or relapsed cancer diagnosis and feeling overwhelmed were frequent themes; however, parents acknowledged the urgency and importance of testing. Parents desired testing of as many cancer-related genes as possible, with clinical utility the most important factor for proceeding with testing. Most parents (75%) desired germline results to be disclosed in person, preferably by a genetic counselor. CONCLUSION Parents described urgency and benefits associated with germline testing, but desired flexibility in timing to allow for initial adjustment after their child's cancer diagnosis.
Journal of Nursing Administration, Aug 17, 2022
Clinical advancement programs (CAPs) benefit direct care nursing staff, patients, and healthcare ... more Clinical advancement programs (CAPs) benefit direct care nursing staff, patients, and healthcare institutions. As standards in nursing practice and workforce evolve, changes in CAPs are necessary. In this quality improvement project, nursing leadership and a 15-member nurse committee redesigned a CAP using Benner's Novice to Expert Model. Changes included self-selection of specialty tracks by shadowing senior nurses in direct patient care, education, and leadership. CAPs increase satisfaction, collaboration, and generation of innovative knowledge.
Journal of Clinical Oncology, May 20, 2019
e21527 Background: Survivors of childhood Hodgkin lymphoma (HL) often report fatigue and daytime ... more e21527 Background: Survivors of childhood Hodgkin lymphoma (HL) often report fatigue and daytime sleepiness. The presence of sleep disorders, such as obstructive sleep apnea (OSA), could further increase cardiovascular and cerebrovascular morbidity and mortality in these patients. The purpose of this pilot study was to assess for the presence of sleep-related breathing disorders and hypersomnia in adult survivors of childhood HL treated with thoracic radiation. Methods: Survivors, ≥18 years of age and ≥10 years from diagnosis, were randomly selected from the St. Jude Lifetime Cohort (SJLIFE) study and assessed with nocturnal polysomnography (PSG) and the multiple sleep latency test (MSLT). Enrollment was stratified by body mass index (BMI) to include an equal number of normal weight and overweight/obese survivors. Survivors with a history of neurotoxicity related to cancer therapies, and neurological, genetic, or neurodevelopmental conditions associated with neurocognitive impairment were excluded. Results: Thirty adult survivors of childhood HL (60% male; 73% white; mean age 35.8 years [range,19.9-52.8]; BMI 28.6 [range, 18.2-43.5]) enrolled, and 14 (47%) met PSG criteria for mild or moderate OSA (OSA; apnea-hypopnea index 5-30). Of those with OSA, 11 had concurrent hypersomnia using the MSLT criteria and 3 of these 11 met diagnostic criteria for narcolepsy. Twelve (40%) had hypersomnia without OSA and 3 of these 12 met diagnostic criteria for narcolepsy. Within the cohort, 86% had objective evidence of OSA and/or hypersomnia/narcolepsy. Conclusions: Findings suggest adult survivors of childhood HL may be at increased risk for OSA, which when concurrent with treatment-related cardiopulmonary and cerebrovascular risk may further increase morbidity and mortality. Future studies are warranted to compare the prevalence of OSA in this population with a matched community control group and examine whether and how the mechanism for OSA might differ from that in the general population.
Journal of Clinical Oncology, May 20, 2016
10575Background: Adult survivors of childhood cancer are at-risk of developing sleep and cognitiv... more 10575Background: Adult survivors of childhood cancer are at-risk of developing sleep and cognitive problems. No studies have examined the contribution of insomnia symptoms to cognitive function in ...
Neurology, Apr 18, 2017
Objective: Describe the risk factors for hypersomnia/narcolepsy and response to stimulant therapy... more Objective: Describe the risk factors for hypersomnia/narcolepsy and response to stimulant therapy in childhood brain tumor survivors. Background: Idiopathic hypersomnia and narcolepsy are diagnosed by mean sleep onset latency and numbers of sleep onset REM sleep episodes during multiple sleep latency testing (MSLT). Daytime sleepiness is recognized in brain tumor survivors but few studies have reported risk factors or response to therapy. Design/Methods: Institutional medical records were reviewed for all brain tumor survivors coded as having sleep disorder, hypersomnia or narcolepsy. Hypersomnia/narcolepsy were diagnosed according to International Headache Society classification based on overnight polysomnogram/MSLT. Each affected survivor was matched by gender, and age and time from tumor diagnosis to 2–3 survivors without daytime sleepiness. Study variables included tumor location, radiation dose, number of surgeries, ventricular shunt, and BMI. Treatment response was obtained by parent report. Results: The 39 survivors with hypersomnia (n=13) and narcolepsy (n=26) were matched with 110 controls. A total of 2336 brain tumor patients were treated during the study period, translating to an estimated hypersomnia/narcolepsy prevalence of 1670/100,000. Median time from tumor diagnosis to hypersomnia/narcolepsy was 6.1 years (range 0.4 – 13.2), and 4.7 years (range −1.5 – 10.4) from radiation. Only midline tumor location (OR 5.3, CI 2.2 – 12.7, p = 30 Gray (p = Conclusions: Hypersomnia/narcolepsy prevalence of 1670/100,000 among childhood brain tumor survivors is much higher than 20–50/100,000 reported in general population. Midline tumor location and >30 gray radiation to the brain strongly correlated with hypersomnia/narcolepsy. Stimulant therapy is beneficial in this population. Disclosure: Dr. Khan has nothing to disclose. Dr. Merchant has nothing to disclose. Dr. Sadighi has nothing to disclose. Dr. Crabtree has nothing to disclose. Dr. Bello has nothing to disclose. Dr. Sykes has nothing to disclose. Dr. Lu has nothing to disclose. Dr. Zabrowski has nothing to disclose. Dr. Simmons has nothing to disclose. Dr. mandrell has nothing to disclose.
Oncology, Oct 1, 2007
Overall survival of Hodgkin lymphoma (HL) is 90%; however, survival decreases with time owing to ... more Overall survival of Hodgkin lymphoma (HL) is 90%; however, survival decreases with time owing to late complications, including subsequent malignancy. Female survivors of pediatric HL have increased morbidity and mortality associated with secondary effects of radiation therapy, most specifically the development of secondary breast cancer. It is estimated that female HL survivors have a 35- to 75-fold excess risk of developing breast cancer, with the greatest risk occurring 15 to 20 years after initial diagnosis. This risk time frame is more than 20 years before the median age (61 years) of breast cancer diagnosis among the general population. This equates to an HL survivor reaching the cumulative lifetime incidence of breast cancer by 40 years of age when compared with the general population.
Nursing & Health Sciences, Jun 1, 2006
Pediatric Blood & Cancer, Mar 28, 2023
Sleep, Apr 1, 2018
Introduction: Sleep disorders and short sleep duration have been associated with 25-hydroxyvitami... more Introduction: Sleep disorders and short sleep duration have been associated with 25-hydroxyvitamin D (25OHD) deficiency in adults and short sleep duration in the elderly has been improved by supplementation. Only two cross-sectional studies have been performed among children and showed a positive association between 25OHD deficiency, obstructive sleep apnea and primary snoring. No longitudinal studies have been performed in children from the general population. Methods: A total of 259 children from the French EDEN mother-child birth cohort with available data for both blood cord 25OHD dosage (measured by radioimmunoassay), and night-sleep duration trajectories between 2 and 5-6 years old (previously obtained by group-based trajectory modeling), were included in the study. Association between 25OHD dosage and night-sleep duration trajectories was investigated using multinomial logistic model adjusting for gender, birth season and recruitment center. Results: In the study sample, 4.9% of the children belonged to the persistent short (≈10h/night), 47.9% to the persistent medium-low (≈11h/night,), 37.2% to the persistent medium-high (≈11h30/night), 4.6% to the long (>11h30/night) and 5.4% to the changing (>11h30 then at ≈11h/night) night-sleep trajectories. The mean blood cord 25OHD level was 18.9 ng/ml (from 3.0 to 62.7 ng/ml). The 25OHD level was <10 ng/ml, 10-21 ng/ml, 21-30 ng/ml and ≥30 ng/ml in 22.1%, 36.7%, 25.1% and 16.1% of the children, respectively. Multivariable analysis showed that lower 25OHD was associated with an increased risk for children to belong to the persistent short sleep compared to medium-low sleep trajectory [OR=1.15 (1.04-1.27) per 1 ng/ml 25OHD, p=0.007]. No significant relationship was observed with other trajectories. Conclusion: Lower blood cord vitamin D levels are associated with an increased probability of belonging to the persistent short-nightsleep trajectory between 2 and 5-6 years of age, which suggests that prenatal vitamin D exposure has an impact on subsequent night-sleep duration.
Journal of Psychosomatic Research, Sep 1, 2023
JCO oncology practice, Jun 1, 2021
PURPOSE: Cancer patients' belief about prognosis can heavily influence medical decision makin... more PURPOSE: Cancer patients' belief about prognosis can heavily influence medical decision making and goals of care. It is known that parents of children with cancer tend to be optimistic regarding their child's prognosis; however, little is known about pediatric patients' prognostic beliefs, how physicians' prognostic communication is perceived, and how these perceptions are compared with actual prognoses. PATIENTS AND METHODS: An original survey was administered to 100 pediatric oncology patients, age 10-18 years, and their parents from 2013 to 2015, at St Jude Children's Research Hospital. Patients were eligible for inclusion if they had an oncologic diagnosis, were between 1 month and 1 year from diagnosis, and were English speaking. Survey responses regarding perceived prognosis were compared with actual prognoses as determined from the medical record review and published literature. Analysis included descriptive statistics and association tests. RESULTS: Nearly half of participants (patients = 48.9%, parents = 50.5%) displayed prognostic optimism as compared with the determined objective estimate of curative potential. The majority of both patients (78%) and parents (85%) reported belief in a very high chance of cure, although fewer reported that their physician communicated a very high chance for cure (patients = 57%, parents = 70%), and only 43% were determined to have a very high probability of cure. Significant differences were noted in prognostic optimism by cancer type ( P < .0001); patients with solid tumor were more often optimistic (n = 25, 83.3% optimistic; n = 5, 16.7% accurate), and patients with lymphoma were most often accurate (n = 2, 8.7% optimistic; n = 21, 91.3% accurate). CONCLUSION: Pediatric oncology patients and parents tend to be optimistic about their chance of cure, as compared to both perceived prognostic communication from physicians and objective estimated prognosis. Understanding the nature of prognostic optimism among patients with cancer and caregivers may empower clinicians to guide realistic decision making while supporting hope.
Pediatric Physical Therapy, 2017
Cambridge University Press eBooks, Dec 22, 2009
Pediatric oncology, 2020
The completion of the Human Genome Project revolutionized our understanding of precision health c... more The completion of the Human Genome Project revolutionized our understanding of precision health care. Currently, patients have numerous genetic and genomic testing options including predictive and diagnostic screening. Genetic/genomic screening provides precision medical care based on patient classification, such as disease susceptibility to understanding of disease etiology, as well as understanding an individual response to treatment. This chapter describes genetic and genomic precision health care, as well as the interaction of the individual’s environment, family, and lifestyle. This vastly changing care environment has a significant impact on nursing practice, as nurses promote potential benefit while respecting the patient and family decision-making process. Within the precision health care environment, we, as nurses, must take responsibility in supporting the well-being of our patients and families, while fostering new knowledge.
Pediatric Blood & Cancer, Apr 6, 2021
BackgroundTo examine associations between phenotypes of short sleep duration and clinically asses... more BackgroundTo examine associations between phenotypes of short sleep duration and clinically assessed health conditions in long‐term survivors of childhood cancer.MethodsSurvivors recruited from the St. Jude Lifetime Cohort (n = 911; 52% female; mean age 34 years; 26 years postdiagnosis) completed behavioral health surveys and underwent comprehensive physical examinations. Sleep was assessed with the Pittsburgh Sleep Quality Index. Short sleep was defined as ≤6 h per night with phenotypes of short sleep including poor sleep efficiency (<85%), prolonged sleep onset latency (SOL; ≥30 min), and wake after sleep onset (≥3 times per week). Covariates included childhood cancer treatment exposures, demographics, body mass index, and physical inactivity. Separate modified Poisson regression models were computed for each health category to estimate relative risks (RR) and 95% confidence intervals (CI). Multinomial logistic regression models examined associations between sleep and an aggregated burden of chronic health conditions.ResultsShort sleep duration was reported among 44% (95% CI 41%–47%) of survivors. In multivariable models, short sleep duration alone was associated with pulmonary (RR = 1.35, 95% CI 1.08–1.69), endocrine (RR = 1.22, 95% CI 1.06–1.39) and gastrointestinal/hepatic conditions (RR = 1.46, 95% CI 1.18–1.79), and anxiety (RR 3.24, 95% CI 1.64–6.41) and depression (RR = 2.33, 95% CI 1.27–4.27). Short sleep with prolonged SOL was associated with a high/severe burden of health conditions (OR = 2.35, 95% CI 1.12–4.94).ConclusionsShort sleep duration was associated with multiple clinically ascertained adverse health conditions. Although the temporality of these associations cannot be determined in this cross‐sectional study, sleep is modifiable and improving sleep may improve long‐term health in survivors.
Cancer, Mar 22, 2019
Patients with cancer are increasingly offered genomic sequencing, including germline testing for ... more Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information. METHODS: Parents of children with cancer were offered the opportunity to have their children's tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2-visit informed consent model. Baseline genetic knowledge and self-reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered. RESULTS: As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one-third of the parents. No relation was identified between the change in the overall percentage of correct answers and self-reported literacy, numeracy, or demographics. CONCLUSIONS: The use of a 2-visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding. Cancer 2019;0:1-10.
Aids Education and Prevention, Aug 1, 2013
Sleep, Apr 1, 2020
Introduction Sleep disturbances are prevalent among adult survivors of childhood cancer, though l... more Introduction Sleep disturbances are prevalent among adult survivors of childhood cancer, though little is known about associations between sleep and health in this vulnerable population. Methods Survivors recruited from the St. Jude Lifetime Cohort (n=911; 52% female; mean age 34 years; 26 years post-diagnosis) completed surveys assessing habitual sleep patterns and mental health and underwent comprehensive physical examinations. A subset of survivors (n=491) completed sleep actigraphy. Short sleep duration was defined as sleeping &amp;lt;7 hours per night, assessed via self-report or actigraphy. Clinically-assessed health outcomes were defined as grade ≥2 using modified CTCAE criteria for cardiac, pulmonary, and renal conditions. Anxiety and depression were defined as scores ≥90th percentile on the Brief Symptom Inventory-18. Covariates included childhood cancer treatment exposures, demographics, body mass index, and physical inactivity. Separate logistic or modified Poisson (common outcomes) regression models were computed for each health category to estimate odds ratios (OR) or relative risks (RR) and 95% confidence intervals (CI). Results Self-report and actigraphy-assessed short sleep was identified in 44% and 42% of survivors, respectively. However, these measures were weakly correlated (r=0.23). In adjusted multivariable models, self-reported short sleep was associated with higher risk of pulmonary conditions (RR=1.3, 95% CI=1.1-1.7), depression (OR=2.6, 95% CI=1.4-5.1) and anxiety (OR=3.4, 95% CI=1.6-6.8), while associations with cardiac (RR=1.10, 95% CI=0.94-1.30) and renal conditions (OR=1.30, 95% CI=0.79-2.13) were not significant. There were no significant associations between actigraphy-assessed short sleep and any of the health outcomes. Conclusion Habitual self-reported short sleep was associated with clinically ascertained adverse health outcomes. Although the temporality of these associations cannot be determined in this cross-sectional study, sleep is a modifiable health behavior and improving sleep may improve health in survivors. Measures of self-reported sleep may have unique value when assessing the relationship between sleep and health. Support CA225590, K. Krull Principal Investigator; CA195547, M. Hudson and L. Robison Principal Investigators; CA21765, C. Roberts, Principal Investigator
Behavioral Sleep Medicine, Jul 14, 2019
Objective/Background: Youth with craniopharyngioma are at increased risk for excessive daytime sl... more Objective/Background: Youth with craniopharyngioma are at increased risk for excessive daytime sleepiness and narcolepsy. Polysomnography (PSG) is the gold standard for diagnosing sleep disorders, but is time-intensive, costly, and does not offer an in vivo measure of typical sleep routine. We determined the sensitivity, specificity, and accuracy of actigraphy compared with PSG in measuring nocturnal sleep in pediatric craniopharyngioma. Participants: Fifty youth with craniopharyngioma (age 3-20 years) were assessed by overnight PSG and concurrent actigraphy after surgical resection and before proton therapy. Methods: PSG and actigraphy data were synchronized utilizing an epochby-epoch comparison method. Sensitivity, specificity, and accuracy were calculated using measures of true wake, true sleep, false wake, and false sleep. Bland-Altman plots were conducted to further assess level of agreement. Results: Actigraphy was 93% sensitive (true sleep [TS]) and 87% accurate (ability to detect TS and true wake) in measuring sleep versus wakefulness and was a reliable measure of sleep efficiency (SE) and sleep latency (SL). Specificity (true wake) was poor (55%) and total sleep time (TST) was underestimated by an average of 15.1 min. Wake after sleep onset (WASO) was overestimated by an average of 14.7 min. Conclusions: Actigraphy was highly sensitive and accurate and was a reliable measure of SE and SL. Although there were differences in TST and WASO measurements by actigraphy and PSG, our findings provide the basis for future studies on the use of actigraphy to monitor treatment response to wakefulness-promoting medications in youth with craniopharyngioma who demonstrate excessive daytime sleepiness.
Sleep, May 1, 2023
understood. New wearable or minimally invasive technologies facilitate the recording of electroen... more understood. New wearable or minimally invasive technologies facilitate the recording of electroencephalography (EEG) with lower spatial resolution than standard EEG but much greater longitudinal dispersion. This enables investigation of day-today variation in sleep measured directly with EEG. This study will compare EEG-derived sleep parameters with covariates such as sustained attention and subjective sleep quality. Methods: Twenty-five healthy adults were implanted with a two-channel subcutaneous EEG (sqEEG) lead. Twenty subjects completed the 1-year protocol (average 32±13 years of age). Their sqEEG signals were recorded each night for 1 year alongside a morning 3-minute Psychomotor Vigilance Task (PVT) and self-reported sleep quality, which included Karolinska Sleepiness Scale (KSS). A deep learning model, U-Sleep, was fine-tuned on sqEEG with synchronized gold standard polysomnography used as ground truth. Hypnograms and sleep parameters were thus automatically calculated. Results: Subjective sleep quality measured by KSS revealed a moderate negative correlation with rapid-eye-movement (REM) duration (r=-0.31, 95% CI=(-0.31, -0.31)), and total sleep time (TST) (r=-0.31, 95% CI=(-0.31, -0.31)). There was a moderate correlation between KSS and mean PVT reaction time (r=0.21, 95% CI=(0.21, 0.22)). There was a low negative correlation between PVT and TST (r=-0.1). Preliminary results indicate a moderate correlation between sleep parameters and subjective sleep quality. The correlations with PVT were lower, which suggests that 3-minute PVT is not sensitive to TST in normal sleep. However, the correlation between PVT and KSS suggests that PVT does predict subjective sleep quality, but to a smaller degree than standard sleep parameters. Measuring day-to-day variation in high-quality EEG-based sleep recordings has the potential of creating a new branch in sleep medicine. Patients can be evaluated not only by findings in a single recording but the stability and variation of all findings can be analyzed. Preliminary results suggest that subjective sleep quality can be predicted directly from sqEEG and potentially be explained by behavioral factors in a subsequent cause-effect analysis. The project is supported by Innovation Fund Denmark, UNEEG medical, and T&W Engineering.
JCO precision oncology, Oct 1, 2022
PURPOSE Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many... more PURPOSE Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many centers are interested in offering testing of tumors and paired germline tissues at or near the time of cancer diagnosis. We conducted this study to better understand parent preferences surrounding timing and content of consent conversations for clinical germline genetic testing of their children with cancer as a part of real-time cancer care. PATIENTS AND METHODS A seven-question survey developed by the Division of Cancer Predisposition and collaborators at St Jude Children's Research Hospital (St Jude) was distributed to members of the St Jude Patient Family Advisory Council, which included parents of childhood cancer survivors and bereaved parents whose children with cancer had died. Parents were asked to provide free text comments after each question. Qualitative methods were used to derive codes from parent comments, and survey results were depicted using descriptive statistics. RESULTS The survey was completed by 172 parents. Ninety-three (54%) endorsed an approach for consent conversations ≥ 1 month after cancer diagnosis, whereas 58 (34%) endorsed an approach at 1-2 weeks and 21 (12%) at 1-2 days. Needing time to adjust to a new or relapsed cancer diagnosis and feeling overwhelmed were frequent themes; however, parents acknowledged the urgency and importance of testing. Parents desired testing of as many cancer-related genes as possible, with clinical utility the most important factor for proceeding with testing. Most parents (75%) desired germline results to be disclosed in person, preferably by a genetic counselor. CONCLUSION Parents described urgency and benefits associated with germline testing, but desired flexibility in timing to allow for initial adjustment after their child's cancer diagnosis.
Journal of Nursing Administration, Aug 17, 2022
Clinical advancement programs (CAPs) benefit direct care nursing staff, patients, and healthcare ... more Clinical advancement programs (CAPs) benefit direct care nursing staff, patients, and healthcare institutions. As standards in nursing practice and workforce evolve, changes in CAPs are necessary. In this quality improvement project, nursing leadership and a 15-member nurse committee redesigned a CAP using Benner's Novice to Expert Model. Changes included self-selection of specialty tracks by shadowing senior nurses in direct patient care, education, and leadership. CAPs increase satisfaction, collaboration, and generation of innovative knowledge.
Journal of Clinical Oncology, May 20, 2019
e21527 Background: Survivors of childhood Hodgkin lymphoma (HL) often report fatigue and daytime ... more e21527 Background: Survivors of childhood Hodgkin lymphoma (HL) often report fatigue and daytime sleepiness. The presence of sleep disorders, such as obstructive sleep apnea (OSA), could further increase cardiovascular and cerebrovascular morbidity and mortality in these patients. The purpose of this pilot study was to assess for the presence of sleep-related breathing disorders and hypersomnia in adult survivors of childhood HL treated with thoracic radiation. Methods: Survivors, ≥18 years of age and ≥10 years from diagnosis, were randomly selected from the St. Jude Lifetime Cohort (SJLIFE) study and assessed with nocturnal polysomnography (PSG) and the multiple sleep latency test (MSLT). Enrollment was stratified by body mass index (BMI) to include an equal number of normal weight and overweight/obese survivors. Survivors with a history of neurotoxicity related to cancer therapies, and neurological, genetic, or neurodevelopmental conditions associated with neurocognitive impairment were excluded. Results: Thirty adult survivors of childhood HL (60% male; 73% white; mean age 35.8 years [range,19.9-52.8]; BMI 28.6 [range, 18.2-43.5]) enrolled, and 14 (47%) met PSG criteria for mild or moderate OSA (OSA; apnea-hypopnea index 5-30). Of those with OSA, 11 had concurrent hypersomnia using the MSLT criteria and 3 of these 11 met diagnostic criteria for narcolepsy. Twelve (40%) had hypersomnia without OSA and 3 of these 12 met diagnostic criteria for narcolepsy. Within the cohort, 86% had objective evidence of OSA and/or hypersomnia/narcolepsy. Conclusions: Findings suggest adult survivors of childhood HL may be at increased risk for OSA, which when concurrent with treatment-related cardiopulmonary and cerebrovascular risk may further increase morbidity and mortality. Future studies are warranted to compare the prevalence of OSA in this population with a matched community control group and examine whether and how the mechanism for OSA might differ from that in the general population.
Journal of Clinical Oncology, May 20, 2016
10575Background: Adult survivors of childhood cancer are at-risk of developing sleep and cognitiv... more 10575Background: Adult survivors of childhood cancer are at-risk of developing sleep and cognitive problems. No studies have examined the contribution of insomnia symptoms to cognitive function in ...
Neurology, Apr 18, 2017
Objective: Describe the risk factors for hypersomnia/narcolepsy and response to stimulant therapy... more Objective: Describe the risk factors for hypersomnia/narcolepsy and response to stimulant therapy in childhood brain tumor survivors. Background: Idiopathic hypersomnia and narcolepsy are diagnosed by mean sleep onset latency and numbers of sleep onset REM sleep episodes during multiple sleep latency testing (MSLT). Daytime sleepiness is recognized in brain tumor survivors but few studies have reported risk factors or response to therapy. Design/Methods: Institutional medical records were reviewed for all brain tumor survivors coded as having sleep disorder, hypersomnia or narcolepsy. Hypersomnia/narcolepsy were diagnosed according to International Headache Society classification based on overnight polysomnogram/MSLT. Each affected survivor was matched by gender, and age and time from tumor diagnosis to 2–3 survivors without daytime sleepiness. Study variables included tumor location, radiation dose, number of surgeries, ventricular shunt, and BMI. Treatment response was obtained by parent report. Results: The 39 survivors with hypersomnia (n=13) and narcolepsy (n=26) were matched with 110 controls. A total of 2336 brain tumor patients were treated during the study period, translating to an estimated hypersomnia/narcolepsy prevalence of 1670/100,000. Median time from tumor diagnosis to hypersomnia/narcolepsy was 6.1 years (range 0.4 – 13.2), and 4.7 years (range −1.5 – 10.4) from radiation. Only midline tumor location (OR 5.3, CI 2.2 – 12.7, p = 30 Gray (p = Conclusions: Hypersomnia/narcolepsy prevalence of 1670/100,000 among childhood brain tumor survivors is much higher than 20–50/100,000 reported in general population. Midline tumor location and >30 gray radiation to the brain strongly correlated with hypersomnia/narcolepsy. Stimulant therapy is beneficial in this population. Disclosure: Dr. Khan has nothing to disclose. Dr. Merchant has nothing to disclose. Dr. Sadighi has nothing to disclose. Dr. Crabtree has nothing to disclose. Dr. Bello has nothing to disclose. Dr. Sykes has nothing to disclose. Dr. Lu has nothing to disclose. Dr. Zabrowski has nothing to disclose. Dr. Simmons has nothing to disclose. Dr. mandrell has nothing to disclose.
Oncology, Oct 1, 2007
Overall survival of Hodgkin lymphoma (HL) is 90%; however, survival decreases with time owing to ... more Overall survival of Hodgkin lymphoma (HL) is 90%; however, survival decreases with time owing to late complications, including subsequent malignancy. Female survivors of pediatric HL have increased morbidity and mortality associated with secondary effects of radiation therapy, most specifically the development of secondary breast cancer. It is estimated that female HL survivors have a 35- to 75-fold excess risk of developing breast cancer, with the greatest risk occurring 15 to 20 years after initial diagnosis. This risk time frame is more than 20 years before the median age (61 years) of breast cancer diagnosis among the general population. This equates to an HL survivor reaching the cumulative lifetime incidence of breast cancer by 40 years of age when compared with the general population.
Nursing & Health Sciences, Jun 1, 2006
Pediatric Blood & Cancer, Mar 28, 2023