Exploration of sleep disturbances in children and adolescents with and without autism in a paediatric sample referred for polysomnography.

AIMS: The purpose of the study was to increase the body of knowledge related to sleep in children with autism. The specific aims were to (i) identify the subgroup of children with autism, ages 3-17 years, referred for polysomnography and (ii) describe types and frequency of clinical encounters for sleep problems in a sample of children ages 3-17 with and without the diagnosis of autism. METHODS: The authors performed a secondary data analysis of the de-identified Nationwide Children's Hospital Sleep DataBank, a collection of encounters with children referred for polysomnography. The data were filtered for ages 3-17 years at the time of the participant's first sleep study, and further filtered for the presence of an autism diagnosis. RESULTS: In the sample, there were 2838 unique participants (M = 10.5 years) with a total of 172 167 encounters between 2017 and 2019. Of these, 198 (7%) were diagnosed with Autism Spectrum Disorder, Asperger's Syndrome, or Pervasive Developmental Disorder. Among all participants, the most common sleep problems were apnea, snoring, non-specified sleep disorders (including restless sleeper), circadian rhythm disorder (CRD), and insomnia. The subgroup of patients diagnosed with autism was noted to have higher frequency of several types of sleep problems, especially restless sleep, CRD and insomnia, compared to those without an autism diagnosis. CONCLUSIONS: Findings elucidate the increased presence of sleep problems in paediatric patients with autism, and the need for purposeful sleep evaluation and research given the potential impact on daytime function for these individuals and their families.

Early Nutrition Intervention Attenuates Weight Gain for Pediatric Acute Lymphoblastic Leukemia Patients in Maintenance Therapy.

Obesity following treatment of pediatric acute lymphoblastic leukemia (ALL) has become a significant long-term concern. Excessive weight gain often occurs during treatment, particularly during induction and the first 6 months of maintenance therapy, and it may be potentially modifiable. This retrospective study aimed to evaluate the impact of an early, 3-visit nutrition intervention on weight gain during maintenance therapy in ALL patients. Medical records of the intervention group were compared with historical controls who were treated on the same ALL treatment protocols during an earlier time period. Anthropometrics were collected throughout intensive therapy and at every monthly visit during the first 12 months of maintenance therapy. In total, 67 patients were evaluated (33 in the intervention group and 34 in the control group). After controlling for significant predictors of body mass index (BMI) z-scores in maintenance therapy-including higher BMI at diagnosis and weight gain throughout intensive therapy-the intervention group demonstrated more controlled weight gain during maintenance therapy (P<0.0001). A 3-visit nutrition intervention was effective in attenuating weight gain trends during ALL maintenance therapy.

Benefits of Attending a Weekend Childhood Cancer Survivor Family Retreat.

PURPOSE: To explore the long-term benefits to families of childhood cancer survivors who attended a weekend childhood cancer survivor family retreat. DESIGN: Descriptive-qualitative study including families who had attended the weekend retreat at least once but not in the past 12 months, and who attend a large pediatric hematology and oncology cancer survivorship program in Texas. METHODS: A semistructured interview guide was used during three audio-taped focus groups to explore the benefits of having attended a weekend retreat. Descriptive qualitative analysis was used to analyze the focus groups' transcripts. FINDINGS: Seven families participated in the focus groups, and the themes identified were reconnecting (with others or family), putting life in perspective, and changing outlook on life. CONCLUSIONS: Retreats offer families of cancer survivors opportunities to reconnect with others and their own family members in a therapeutic environment. These reconnections in a therapeutic environment enriched the families' positive outlooks on life and changed their perspectives. CLINICAL RELEVANCE: Families of childhood cancer survivors report a lack of support following the completion of therapy. Retreats in a nonclinical therapeutic setting optimize family-perceived support, relationship building, and reconnecting survivor families.

Subclinical cardiotoxicity in childhood cancer survivors exposed to very low dose anthracycline therapy.

BACKGROUND: Subclinical cardiotoxicity occurs in childhood cancer survivors following moderate and high anthracycline doses. However, less is known about the subclinical changes in left ventricular (LV) structure that occur after very low anthracycline doses of ≤ 100 mg/m(2). This study was designed to assess LV function and key structural parameters following very low doses of anthracycline. PROCEDURE: Conventional 2-dimensional echocardiograms with Doppler were obtained in 91 survivors of childhood cancer exposed to ≤ 100 mg/m(2), an average of 9.8 years from diagnosis. LV structural measurements were converted into Z-scores. The Z-score distributions were compared to those of the normal population. Diastolic and systolic function were quantified. RESULTS: The cohort demonstrated a decreased posterior wall thickness (mean Z-score -1.01) and mildly decreased LV end diastolic (mean Z-score -0.85) and systolic (mean Z-score -0.84) dimensions compared to the normal population (P < 0.001). Further, 28% of patients (n = 25) had abnormal LV posterior wall thickness, ≥ 2 standard deviations below the mean (Z-score ≤ -2). There were no patients with diastolic dysfunction or symptomatic systolic dysfunction, however four patients demonstrated abnormal SF ≤ 28%. CONCLUSIONS: A significant proportion of patients exposed to very low doses of anthracycline demonstrate subclinical abnormalities in LV structure, despite the absence of radiation or other risk factors. While we cannot say whether these structural changes will result in clinically significant cardiac disease, the reported progressive nature of these findings raises concern that there may truly be no safe dose of anthracycline.

Pharmacogenomics and Implications for Nursing Practice.

PURPOSE: This article aims to introduce the nurse to pharmacogenomics and its implications for clinical practice with regard to drug therapy. ORGANIZING CONSTRUCTS: Pharmacogenomics is discussed with regard to the basic tenets, relationships to common health conditions, education and practice resources, and implications for nursing practice. METHODS: Peer-reviewed literature, websites, and expert professional guidelines were reviewed with relation to pharmacogenomics and nursing practice. FINDINGS: The genetic-genomic literature has grown significantly since the completion of the Human Genome Project in 2003. This information is now being translated into practice with regard to the patient's genetic profile and the impact on drug therapy, which is pharmacogenomics. CONCLUSIONS: The utilization of the patient genetic-genomic profile is beginning to have an impact on patient drug therapy in clinical practice. CLINICAL RELEVANCE: Nurses are in the position to make sure, with the increased translation of pharmacogenomics into clinical practice, that adverse drug reactions are avoided and doses are optimized.

Subsequent neoplasms of the CNS among survivors of childhood cancer: a systematic review.

Childhood cancer survivors are at risk for development of subsequent neoplasms of the CNS. Better understanding of the rates, risk factors, and outcomes of subsequent neoplasms of the CNS among survivors of childhood cancer could lead to more informed screening guidelines. Two investigators independently did a systematic search of Medline and Embase (from January, 1966, through March, 2012) for studies examining subsequent neoplasms of the CNS among survivors of childhood cancer. Articles were selected to answer three questions: what is the risk of CNS tumours after radiation to the cranium for a paediatric cancer, compared with the risk in the general population; what are the outcomes in children with subsequent neoplasms of the CNS who received CNS-directed radiation for a paediatric cancer; and, are outcomes of subsequent neoplasms different from primary neoplasms of the same histology? Our search identified 72 reports, of which 18 were included in this Review. These studies reported that childhood cancer survivors have an 8·1-52·3-times higher incidence of subsequent CNS neoplasms compared with the general population. Nearly all cancer survivors who developed a CNS neoplasm had been exposed to cranial radiation, and some studies showed a correlation between radiation dose and risk of subsequent CNS tumours. 5-year survival ranged from 0-19·5% for subsequent high-grade gliomas and 57·3-100% for meningiomas, which are similar rates to those observed in patients with primary gliomas or meningiomas. The quality of evidence was limited by variation in study design, heterogeneity of details regarding treatment and outcomes, limited follow-up, and small sample sizes. We conclude that survivors of childhood cancer who received cranial radiation therapy have an increased risk for subsequent CNS neoplasms. The current literature is insufficient to comment about the potential harms and benefits of routine screening for subsequent CNS neoplasms.

Improving Food Literacy and Access Among Young Adult Cancer Survivors: A Cross-Sectional Descriptive Study.

BACKGROUND: The links between nutrition and chronic disease are well established, but consumption of fruits and vegetables is low among young adult childhood cancer survivors (YACS) worldwide. Ensuring equitable access to fresh produce is a significant, persistent public health challenge. OBJECTIVE: The purposes of this report are to describe patterns of access to fresh produce, daily intake of fruits/vegetables, and nutrition education preferences among a sample of YACS and to highlight early development of a mentored gardening intervention. METHODS: A cross-sectional descriptive study design was used to assess dietary intake, access to fruits/vegetables, and preferences for nutrition education among 124 YACS through a comprehensive cancer survivorship program in a large pediatric cancer center. RESULTS: Most participants (71.8%) live more than 10 minutes' walking distance from a supermarket, and 88.7% do not meet the recommended daily intake of 5 or more servings of fruit and vegetables. A total of 91% of participants express that nutrition is important, and 81.5% desire dietary improvement. Most (78.2%) are likely to use either their computer or cell phone for nutrition content. To establish healthy nutrition habits, many seek the support of a nutritionist (63.7%) or another survivor (41.9%). CONCLUSIONS: Study findings underscore the need for advocacy to support equitable access to fresh produce and technology-enhanced nutrition education among YACS. IMPLICATIONS FOR PRACTICE: To improve access to fresh produce and food literacy among YACS, providers can collaborate with community stakeholders to build capacity for sustainable, technology-enhanced, and mentored gardening interventions at the individual, family, and community level.

Emerging and Ongoing Survivorship Challenges Among Childhood Cancer Survivors and Providing Risk-Based Focused Follow-Up Care.

OBJECTIVES: To provide a summary of the emerging and ongoing survivorship challenges facing childhood, adolescent, and young adult cancer survivors and their families. DATA SOURCES: Research and review articles, websites, and clinical guidelines specific to childhood cancer survivorship were used. CONCLUSION: Many challenges exist in assuring quality long-term follow-up and risk-based screening for childhood cancer survivors. Although many childhood cancer survivors survive well into adulthood, they are at risk for a vast number of later complications of their cancer treatment necessitating annual cancer surveillance. In addition, many childhood cancer survivors are not engaging in long-term follow-up recommendations for clinic attendance, risk-based surveillance, and screening for potentially life-ending events. Pediatric oncology nurses and advanced practice nurses have played an enormous role in the design of childhood cancer survivorship programs and are an integral member of the multidisciplinary health care team who care for this population. Nurses have an obligation to continue to advance the survivorship care of childhood cancer survivors and lead interventional opportunities to improve the lifelong health-related quality of life and overall physical health. IMPLICATIONS FOR NURSING PRACTICE: Pediatric oncology nurses and advanced practice registered nurses must have a working knowledge of the many late effects that childhood cancer treatment has on the long-term health of childhood cancer survivors. Nurses are well-placed in positions to continue the efforts begun more than 2 decades prior by pediatric oncology nurses who saw the value and necessity of designated survivorship programs.

Engagement in Physical Activity Among Young Adult Childhood and Adolescent Cancer Survivors: Integration of Nature Technology.

This report addresses physical activity (PA) levels and education preferences in young adult cancer survivors (YACS) and outlines strategies for the design of successful interventions. A cross-sectional design was used to assess PA in 124 YACS, using the International Physical Activity Questionnaire-Short Form. Recommended levels were reported by 20.2% and 42.5% for high and moderate PA in metabolic equivalent of task (MET) minutes/week, respectively, while 37.3% reported low level PA in MET-minutes/week. Eighty percent reported likely to use technology for education about PA. Prior research supports using technology to administer tailored interventions to promote consistent PA among YACS, ideally in nature-based activities.

Nutrition-Related Clinical Decision Making of Pediatric Oncology Nurses.

Children with a cancer diagnosis have risk factors leading to unique nutritional challenges. Malnutrition in this population is correlated with worse patient outcomes. Nurses are responsible for providing holistic care to their patients; however, the quality of nutritional assessments by pediatric oncology nurses is unknown. The purpose of this study was to investigate staff nurses' clinical decision making regarding nutritional assessment of children with cancer. A web-based survey composed of a demographic form, vignettes of patients with diverse nutritional status and the New General Self-Efficacy Scale, was distributed to members of the Association of Pediatric Hematology Oncology Nurses. Participants were also asked to rate their confidence in responses as well as select key nutritional cues. Nurses were significantly more likely to under-rate the nutritional status and select far fewer cues than the experts. Further research regarding nutritional assessment is warranted. Evidenced-based guidelines for nutritional assessment of children with cancer should be developed to ensure the highest quality of care is provided to this patient population.

Abdominal obesity, liver fat, and muscle composition in survivors of childhood acute lymphoblastic leukemia.

CONTEXT: Survivors of childhood acute lymphoblastic leukemia (ALL) become obese, and are at increased risk for morbidity and mortality post therapy. OBJECTIVE: We determined the association of cranial radiotherapy (CRT) and/or sex with levels of total, regional, and ectopic fat storage, metabolic risk, IGF-I, and leptin in adult ALL survivors. DESIGN, SETTING, PATIENTS: A cross-sectional analysis of 52 male (15 CRT treated) and 62 female (24 CRT treated) young adult ALL survivors was conducted. MAIN OUTCOMES: We assessed levels of visceral fat, sc abdominal and thigh fat, and liver and muscle fat using computed tomography, total fat and lean body mass using dual-energy x-ray absorptiometry, and IGF-I and leptin levels by radioimmunoassay. RESULTS: Controlled for age and race, ALL survivors treated with CRT had higher levels of abdominal and visceral fat, body fat percentage, metabolic risk (insulin resistance and dyslipidemia), and leptin but lower lean mass and IGF-I levels than non-CRT survivors (P 0.1). CONCLUSION: Among young adult ALL survivors, CRT is a risk factor for elevated total, abdominal, and visceral adiposity, a reduced fat-free mass, elevated metabolic risk, and altered IGF-I and leptin levels.

Semen preservation in male adolescents and young adults with cancer: one institution's experience.

Semen preservation is a feasible procedure for male adolescents and young adults who may become infertile as a result of cancer therapy. Treatment for several pediatric malignancies puts adolescents and young adults at a significant risk for fertility dysfunction. Eligible male adolescents and young adults (N = 32) treated from January 2004 to June 2005 at Cook Children's Medical Center were offered semen preservation at the time of diagnosis or presentation to the center for treatment. Fifteen (47%) young men were successful in semen preservation. Two (6%) adolescents did not participate because of parental refusal. Seven (22%) were too ill, and eight (25%) failed to produce an adequate sample. Several patients were not successful because of time constraints, lack of counseling, and parental anxiety. Efforts for success in semen preservation should include private discussions between nurses and adolescents. In addition, information on infertility needs to be given to families early in the diagnostic phase to provide them with an opportunity to ask questions.

Educational and career goal attainments in young adult childhood cancer survivors.

PURPOSE: Examine the educational and career outcomes of young adult childhood cancer survivors. DESIGN AND METHODS: Descriptive study design using a survey sent to 336 survivors. Quantitative and qualitative data were analyzed separately. RESULTS: Only 50 completed surveys were returned. Having a central nervous system tumor and radiation were associated with physical impairments. Four themes also emerged: future as medical professionals, dreams fallen short, peer relationships, and positive outlook on life. PRACTICE IMPLICATIONS: Pediatric nurses caring for survivors should partner with oncology professionals to support survivors to enrich their educational and career opportunities.

Subjective Sleep Measures in Children: Self-Report.

The American Academy of Sleep Medicine (AASM) recently published a consensus statement on the recommended number of hours of sleep in infants and children. The AASM expert panel identified seven health categories in children influenced by sleep duration, a component of sleep quality. For optimal health and general function, children require a certain number of hours of sleep each night. Limited data exist to subjectively assess sleep in this population. Practitioners must evaluate overall sleep quality not simply sleep duration. The purpose of this article is to provide a mini-review of the self-report sleep measures used in children. The authors individually completed a review of the literature for this article via an independent review followed by collaborative discussion. The subjective measures included in this mini-review have been used in children, but not all measures have reported psychometrics. Several tools included in this mini-review measure subjective sleep in children but with limited reliabilities or only preliminary psychometrics. Accurate measurement of self-reported sleep in children is critical to identify sleep problems in this population and further detect associated health problems. Ongoing studies are warranted to establish reliable and valid measures of self-reported sleep in children to accurately detect health problems associated with poor sleep quality. This mini-review of the literature is an important first step to identify the most reliable subjective sleep measures in children.

Improving health in at-risk youth through Photovoice.

Photovoice is a practical method to allow at-risk youth to express the environmental influences in their lives at school, at home, and in their community. This project emerged from an interprofessional collaboration between social work and nursing that focused on school health. The purpose was to explore the factors influencing the mental and emotional health using photographs by students in a largely Hispanic middle school. Ten students were recruited and consented but only eight completed the project. The SHOWeD method was used to assist the students to formally reflect upon their photographs. Data analysis was conducted using content analysis to identify themes presented the students' reflections. The themes were staying healthy, stress dealing with anger/frustration, maintaining friendships and communication, recognizing bullying, and planning for the future. Reflections aided students to provide rich details about how the school environment influences their mental and emotional health. The use of Photovoice is a reasonable method for at-risk youth to explore and describe their environment. Nurses, social workers, parents, and school leaders can use the new knowledge about how the school environment influences the health of students to develop tools to support a healthy school and community environment.

Evaluation of the Utility of a Transition Workbook in Preparing Adolescent and Young Adult Cancer Survivors for Transition to Adult Services: A Pilot Study.

Transition to adult care for adolescent and young adult survivors is challenging and is inclusive of several factors like knowledge and developmental, emotional, and social status of survivors and parents. This pilot study addressed the feasibility of a transition workbook, a method of preparing adolescent and young adults to transition to adult care. Using a mixed methods design, investigators also measured transition worry and readiness in 30 survivors. Support was provided throughout a 6-month period as survivors and parents completed the workbook. The workbook included sections about the treatment history of survivors, when and who to call for worrisome symptoms, prescriptions and insurance, educational goals for health practices and how to get there, and independent living. Twenty survivors completed the study and reported greater worry about leaving pediatric oncology but indicated the need to make changes to transition to adult care. Ambiguity and intimidation about transitioning to adult providers and comfort in pediatric setting were themes expressed by survivors. Results indicate the need for adult/pediatric collaborative transition programs using various standardized methods of addressing transition readiness and evaluation.

Evidence-Based Recommendations for Fertility Preservation Options for Inclusion in Treatment Protocols for Pediatric and Adolescent Patients Diagnosed With Cancer.

As survival rates improve for pediatric cancers, increased attention has been paid to late effects of cancer therapy, in particular, infertility. Fertility preservation options are available for pre- and postpubertal cancer patients; however, many providers lack knowledge regarding options. The aim of this article is to provide a comprehensive synthesis of current evidence and recommendations regarding fertility preservation options for children, adolescents, and young adults undergoing cancer treatment. A systematic search was performed to identify fertility preservation evidence. Fifty-three studies and 4 clinical guidelines were used for the review. Final recommendations consisted of 2 strong and 1 weak recommendation for both female and male fertility preservation options. The treatment team should be knowledgeable about fertility preservation so that they can educate patients and families about available fertility preservation options. It is important to consider and discuss all available fertility options with patients at the time of diagnosis.

Young adults with risk factors for chronic disease: transition needs for survivors of childhood cancer.

This article includes a definition of transition, the current state of transition, a review of transition research, an overview of chronic disease in survivors of childhood cancer (SCC), and the transition of SCC. In addition, models of transition are discussed, and the barriers to transition as well as principles for successful transition are identified.

The Health Utilities Index 3 invalidated when completed by nurses for pediatric oncology patients.

When health-related quality of life instruments developed for and validated in 1 respondent group are completed by a different respondent group, findings could be invalid. The purpose of this study was to summarize the instrument outcomes when a widely used health-related quality of life instrument (the Health Utilities Index 3 [HUI3]) created from a population-based strategy was completed by pediatric oncology nurses for their patients during cancer treatment. Fifty-four nurses completed the HUI3 a total of 261 times at 1 to 3 sequential data points (106, 94, and 61, respectively) for pediatric patients who were enrolled on a frontline therapeutic clinical trial for acute lymphoblastic leukemia. Data were collected at 2 children's hospitals. HUI3 scores could not be calculated for 52% to 61% of the nurse reports at each of the 3 data points because of nurses' use of the "do not know" response option. Missing data of this proportion indicate that the nurse serving as a proxy rater independent of directly soliciting responses from the patient will not be able to rate certain attributes of the HUI3 more than half of the time despite having ongoing familiarity with the patient. Because of this, use of the HUI3 by nurse proxies for patients with pediatric acute lymphoblastic leukemia is not recommended.