Mechanisms of sleep disturbances in long-term cancer survivors: a childhood cancer survivor study report.

BACKGROUND: Sleep problems following childhood cancer treatment may persist into adulthood, exacerbating cancer-related late effects and putting survivors at risk for poor physical and psychosocial functioning. This study examines sleep in long-term survivors and their siblings to identify risk factors and disease correlates. METHODS: Childhood cancer survivors (≥5 years from diagnosis; n = 12 340; 51.5% female; mean [SD] age = 39.4 [9.6] years) and siblings (n = 2395; 57.1% female; age = 44.6 [10.5] years) participating in the Childhood Cancer Survivor Study completed the Pittsburgh Sleep Quality Index (PSQI). Multivariable Poisson-error generalized estimating equation compared prevalence of binary sleep outcomes between survivors and siblings and evaluated cancer history and chronic health conditions (CHC) for associations with sleep outcomes, adjusting for age (at diagnosis and current), sex, race/ethnicity, and body mass index. RESULTS: Survivors were more likely to report clinically elevated composite PSQI scores (>5; 45.1% vs 40.0%, adjusted prevalence ratio [PR] = 1.20, 95% CI = 1.13 to 1.27), symptoms of insomnia (38.8% vs 32.0%, PR = 1.26, 95% CI = 1.18 to 1.35), snoring (18.0% vs 17.4%, PR = 1.11, 95% CI = 1.01 to 1.23), and sleep medication use (13.2% vs 11.5%, PR = 1.28, 95% CI = 1.12 to 1.45) compared with siblings. Within cancer survivors, PSQI scores were similar across diagnoses. Anthracycline exposure (PR = 1.13, 95% CI = 1.03 to 1.25), abdominal radiation (PR = 1.16, 95% CI = 1.04 to 1.29), and increasing CHC burden were associated with elevated PSQI scores (PRs = 1.21-1.48). CONCLUSIONS: Among survivors, sleep problems were more closely related to CHC than diagnosis or treatment history, although longitudinal research is needed to determine the direction of this association. Frequent sleep-promoting medication use suggests interest in managing sleep problems; behavioral sleep intervention is advised for long-term management.

Can extending time between vital sign checks improve sleep in hematopoietic stem cell transplant patients? Testing feasibility, acceptability, and preliminary efficacy.

BACKGROUND: Patients undergoing hematopoietic stem cell transplant (HSCT) experience barriers to quality sleep. Frequent vital sign checks are necessary early posttransplant given risk of complications but can disrupt sleep. This study tested feasibility and acceptability of extending time between checking vitals (EVs) from every 4 to every 6 h to improve sleep. PROCEDURE: HSCT patients ages 8-21 years (N = 50, mean age = 14.06, SD = 3.58) and their caregivers were enrolled 1-2 days prior to transplant, and 40 patients completed the 15-day study (NCT04106089). Patients wore an actigraph to estimate sleep and provided self- and caregiver-report of sleep. Sleep was observed for nights 0 to +4 posttransplant, and patients were then randomized to EVs either Days +5 to +9 or +10 to +14. Patients were assessed daily for medical eligibility to receive EVs; on days patients were eligible, nightshift nurses (N = 79) reported EV acceptability. RESULTS: Of 200 potential nights for EVs (5 nights x 40 patients), patients were eligible for EVs on 126 nights (63% of eligible nights), and patients received EVs on 116 (92%) of eligible nights. Most patients received EVs ≥3 nights (n = 26, 65%, median = 3 nights). Most patients (85%), caregivers (80%), and nurses (84%) reported that patients used the additional 2 h during EVs for sleep, with reporters indicating moderate to high acceptability. There was preliminary evidence of efficacy indicated by caregiver-reported sleep disturbance and actigraphy-estimated improvements in sleep efficiency during EVs. CONCLUSION: Extending time between vitals checks is highly acceptable to patients, caregivers, and nurses, and may offer a feasible approach to improve sleep in pediatric HSCT.

Maternal Perceptions of Evidence-Based Early Childhood Sleep Health Promotion Recommendations: An Explanatory Sequential Study.

OBJECTIVES: The purpose of this explanatory sequential design study was to better understand caregivers' perceptions about and interest in evidence-based early childhood sleep health promotion recommendations. METHOD: A purposeful sample of mothers of 20 1-5-year-old children (10 children exhibiting optimal sleep and 10 children exhibiting insufficient/fragmented sleep) attending a preschool serving a low socio-economic (SES) status metropolitan community were invited to participate in qualitative interviews. Data were coded according to a grounded theory approach and themes were identified within the optimal and suboptimal sleeper groups. RESULTS: Mothers reported different approaches to managing electronics by optimal/suboptimal sleeper group, with mothers of optimal sleepers limiting access to electronics more than mothers in the suboptimal sleep group. Other themes of sleep health practices did not differ meaningfully between groups. CONCLUSIONS: Maternal perspectives about early childhood sleep health were similar across optimal and suboptimal sleepers on most elements of child sleep health. Managing child sleep was contextually influenced and these results highlight the complexities of how families living in lower SES environments perceive common sleep recommendations. Thus, sleep health education efforts should be tailored to the needs and values of specific families and communities.

Variation in Caregiver-Reported Child Sleep Patterns and Problems by Family Socioeconomic Indicators.

OBJECTIVE: Previous studies of sleep patterns, as well as rates and correlates of perceived problems in early childhood, indicate variation by neighborhood-level socioeconomic indicators. The purpose of this study was to examine variation in (1) sleep patterns, behaviors, and problems by family-based socioeconomic indicators (income-to-needs ratio and caregiver education level) and (2) sociodemographic and sleep correlates of a caregiver-endorsed child sleep problem across and within socioeconomic indicator groups in a diverse sample. METHODS: Two hundred eighty-three caregiver-child dyads (ages 1-5 years) completed the Brief Child Sleep Questionnaire. Family-level socioeconomic indicators included income-to-needs ratio and caregiver educational level. RESULTS: Sleep patterns varied based on income-to-needs ratio, with children living in poverty experiencing the longest sleep onset latencies and night awakening durations and shortest nighttime sleep durations. Rates of an endorsed child sleep problem were similar across income-to-needs groups. Although sleep patterns did not vary by caregiver education level, caregivers with an education beyond high school were more likely to endorse a child sleep problem; later bedtimes, more frequent night awakenings, and greater bedtime difficulties were the strongest correlates of a perceived sleep problem in this subgroup. No specific correlates of a child sleep problem emerged for those with a high school education or less. CONCLUSION: Sleep patterns may be more robustly linked to family income-to-needs ratio, whereas perceptions of a child sleep problem may be more linked to caregiver education level. Clinicians should consider expanding sleep screening questions to include specific sleep outcomes to effectively assess child sleep and guide intervention.

Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study.

PURPOSE: A cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality. METHODS: Canadian YAs (n = 359) diagnosed with cancer between ages 15-39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use. RESULTS: Participants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04). CONCLUSION: Psychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery.

Sleep problems during and after paediatric brain tumours.

Brain tumours are among the most common cancer diagnoses in paediatrics. Children with brain tumours are at risk of developing sleep problems because of direct and indirect effects of the tumour and its treatment, in addition to psychosocial and environmental factors. Sleep has an important role in physical and psychological wellbeing, and sleep problems are associated with many adverse outcomes. In this Review, we describe the state of the evidence regarding sleep in people with paediatric brain tumours, prevalence and types of sleep problems, risk factors, and effectiveness of interventions. Evidence shows that sleep problems, particularly excessive daytime sleepiness, are common in people with paediatric brain tumours, with high BMI emerging as a consistent predictor of sleep disruption. Further intervention studies are needed, and clinical evaluation of sleep is warranted for people with paediatric brain tumours.

Sleep practices in pediatric cancer patients: Indirect effects on sleep disturbances and symptom burden.

OBJECTIVE: Sleep hygiene recommendations are commonly given to address patient-reported concerns about sleep, yet few studies have examined the relationship between sleep hygiene and sleep disturbances in the context of pediatric oncology. Because poor sleep may affect the patient's experience of cancer-related symptoms, understanding whether sleep hygiene practices influence sleep disturbances and symptoms may be important to improving symptom burden. METHODS: One hundred and two caregivers of children ages 5-17 and 59 patients ages 8-17 receiving treatment for cancer completed parallel measures of child sleep, sleep hygiene, pain, fatigue, and nausea. Sleep hygiene practices were described, correlates between measures were examined, and the indirect relationship of sleep hygiene on symptom burden through sleep disturbances was tested using PROCESS. RESULTS: Patients received adequate sleep for age but sleep timing was later than recommended for more than half of the sample and consistency in sleep times was poor. Sleep disturbances were moderately related to all symptoms, with the exception of patient-reported fatigue. Consistent sleep habits were indirectly related to fewer cancer-related symptoms of pain, fatigue, and nausea through sleep disturbances by caregiver report but not patient report. CONCLUSION: Sleep disturbances are closely related to pain, fatigue, and nausea in pediatric cancer. Consistency in sleep/wake routines and schedules may be important to experiencing fewer sleep disturbances and lower symptom burden. Providing recommendations supporting consistent sleep habits broadly across pediatric oncology may be more effective than only presenting sleep hygiene recommendations to patients experiencing poor sleep.

Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer.

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.

Fertility Preservation in Young Adults: Prevalence, Correlates, and Relationship with Post-Traumatic Growth.

Purpose: This study describes the prevalence of fertility preservation (FP) knowledge, discussions, and engagement in a heterogeneous sample of Canadians diagnosed with cancer in young adulthood and tests the relationship of these variables with later post-traumatic growth (PTG). Methods: Data were taken from the Young Adults with Cancer in their Prime (YACPRIME) study, a national cross-sectional survey of Canadians diagnosed with cancer as young adults. This subanalysis included 463 individuals, ages 20-39 years (mean = 30.28, standard deviation = 4.68, 88% female), diagnosed after 2006. Participants self-reported demographics, responded to questions regarding their experience with FP, and completed the PTG inventory. Results: In total, 81% reported awareness of risk, 52% discussed FP, and 13% pursued FP. PTG was higher for those with knowledge of fertility risk [F (3, 455) = 3.26, p = 0.021], when controlling for sex and on treatment status, but did not differ between those who discussed FP versus not, or made arrangements versus not. Those who reported not engaging in FP because of their own choice [F(3, 402) = 5.98; p = 0.001] or their doctor's recommendation not to delay treatment [F(3, 402) = 3.25; p = 0.022] reported significantly higher PTG, when controlling for sex and on-treatment status. Financial reasons, lack of knowledge about FP, and age were not related to PTG. Conclusions: This study demonstrates that FP discussions and uptake remain low, highlighting the need for continued education and efforts to improve access to intervention. Knowledge of risk, along with making the choice to prioritize treatment over FP, was related to higher PTG, suggesting informed decisions made early in treatment may support positive psychosocial outcomes.

Clinical validity of the PROMIS pediatric sleep short forms in children receiving treatment for cancer.

BACKGROUND: Rates of sleep disturbances vary widely across pediatric cancer studies, partly due to differences in measurement tools. Patient-reported outcomes measurement information system (PROMIS) offers a rigorously developed, well-validated pair of pediatric sleep health instruments needed to advance sleep research and clinical practice in pediatric cancer. The current study evaluated the clinical validity of PROMIS pediatric sleep scales (sleep disturbances [SD] and sleep-related impairment [SRI]) among children in active cancer treatment. PROCEDURE: Caregiver-patient dyads were enrolled during cancer treatment in 2-12 months after diagnosis: 45 children (ages 8-17 years) and 102 caregivers of children (ages 5-17 years) completed PROMIS SD and SRI 8-item short form self-report or caregiver-proxy scales, and caregivers reported the prior week's cancer treatments and blood counts. RESULTS: Both scales demonstrated strong internal consistency reliability across reporters. SD and SRI were higher than the PROMIS general population calibration sample for caregivers and patients. Oncology caregivers reported lower SD and SRI than sleep clinic caregivers, but oncology patients were similar to sleep clinic patients. Convergent validity was evidenced through moderate correlations between scales by reporter and both scales being significantly higher in patients taking medications for sleep. There were no significant differences in SD or SRI by diagnostic group, receiving radiation, or having low blood counts. CONCLUSION: The PROMIS SD and SRI short forms are promising measures for pediatric oncology, demonstrating strong internal consistency reliability and multiple indications of clinical validity. Although groups did not differ based on treatment variables, results suggest the need for universal screening for sleep problems during pediatric cancer treatment.

Identifying Modifiable Factors Linking Parenting and Sleep in Racial/Ethnic Minority Children.

BACKGROUND: Young children from racial and ethnic minority backgrounds are at risk for poor sleep, yet few studies have tested behavioral interventions in diverse samples. This study tests factors that could contribute to associations between parenting skills and child sleep to inform interventions for children at risk of poor sleep outcomes. Specifically, we examined household chaos, caregiver sleep knowledge, and caregiver sleep quality as putative mediators that may be relevant to interventions seeking to improve child sleep. METHODS: Caregivers (M age 31.83 years; 46.2% African American; 52.1% Hispanic/Latinx, 95% female) of 119 1- to 5-year-old children (M age 3.99 years; 43.7% African American; 42.0% Hispanic/Latinx, 14.3% biracial; 51.3% female) completed measures of parenting practices, child and caregiver sleep, household chaos, and sleep knowledge. Indices of pediatric insomnia symptoms (difficulty falling/remaining asleep) and sleep health (sleep duration/hygiene) were constructed based on previous research. Parallel mediation models were conducted using ordinary least squares path analysis. RESULTS: Lower household chaos significantly attenuated the relationship between positive parenting skills and better child sleep health, suggesting chaos may serve as a potential mediator. There were no significant contributing factors in the pediatric insomnia model. Sleep knowledge was related to sleep health and caregiver sleep quality was related to pediatric insomnia, independent of parenting skills. CONCLUSION: Interventions to improve sleep in early childhood may be enhanced by targeting parenting skills and household routines to reduce chaos. Future longitudinal research is needed to test household chaos and other potential mediators of child sleep outcomes over time.

A call to action for expanded sleep research in pediatric oncology: A position paper on behalf of the International Psycho-Oncology Society Pediatrics Special Interest Group.

Sleep and circadian rhythms are closely related to physical and psychosocial well-being. However, sleep and circadian rhythm disruptions are often overlooked in children with cancer, as they are frequently considered temporary side effects of therapy that resolve when treatment ends. Yet, evidence from adult oncology suggests a bidirectional relationship wherein cancer and its treatment disrupt sleep and circadian rhythms, which are associated with negative health outcomes such as poor immune functioning and lower survival rates. A growing body of research demonstrates that sleep problems are prevalent among children with cancer and can persist into survivorship. However, medical and psychosocial outcomes of poor sleep and circadian rhythmicity have not been explored in this context. It is essential to increase our understanding because sleep and circadian rhythms are vital components of health and quality of life. In children without cancer, sleep and circadian disturbances respond well to intervention, suggesting that they may also be modifiable in children with cancer. We present this paper as a call to (a) incorporate sleep or circadian rhythm assessment into pediatric cancer clinical trials, (b) address gaps in understanding the bidirectional relationship between sleep or circadian rhythms and health throughout the cancer trajectory, and (c) integrate sleep and circadian science into oncologic treatment.

Feasibility and acceptability of a pilot tailored text messaging intervention for adolescents and young adults completing cancer treatment.

PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.

Text Message Responsivity in a 2-Way Short Message Service Pilot Intervention With Adolescent and Young Adult Survivors of Cancer.

OBJECTIVE: Within a 2-way text messaging study in AYAs who recently completed treatment for cancer, we sought to evaluate text message responsivity across different types of text messages. METHODS: AYAs who recently completed treatment for cancer (n=26; mean age=16 years; 62% female, 16/26 participants) received 2-way text messages about survivorship health topics over a 16-week period. Using participants' text message log data, we coded responsivity to text messages and evaluated trends in responsivity to unprompted text messages and prompted text messages of varying content (eg, medication reminders, appointment reminders, and texts about personal experiences as a cancer survivor). RESULTS: Across prompted and unprompted text messages, responsivity rapidly decreased (P ≤.001 and =.01, respectively) and plateaued by the third week of the intervention. However, participants were more responsive to prompted text messages (mean responsivity=46% by week 16) than unprompted messages (mean responsivity=10% by week 16). They also demonstrated stable responsivity to certain prompted content: medication reminders, appointment reminders, goal motivation, goal progress, and patient experience texts. CONCLUSIONS: Our methodology of evaluating text message responsivity revealed important patterns of engagement in a 2-way text message intervention for AYA cancer survivors.

Sleep, emotional distress, and physical health in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

OBJECTIVE: Sleep disorders are associated with psychological and physical health, although reports in long-term survivors of childhood cancer are limited. We characterized the prevalence and risk factors for behaviors consistent with sleep disorders in survivors and examined longitudinal associations with emotional distress and physical health outcomes. METHODS: Survivors (n = 1933; median [IQR] age = 35 [30, 41]) and siblings (n = 380; age = 33 [27, 40]) from the Childhood Cancer Survivor Study completed measures of sleep quality, fatigue, and sleepiness. Emotional distress and physical health outcomes were assessed approximately 5 years before and after the sleep survey. Multivariable logistic or modified Poisson regression models examined associations with cancer diagnosis, treatment exposures, and emotional and physical health outcomes. RESULTS: Survivors were more likely to report poor sleep efficiency (30.8% vs 24.7%; prevalence ratio [PR] = 1.26; 95% confidence interval, 1.04-1.53), daytime sleepiness (18.7% vs 14.2%; PR = 1.31 [1.01-1.71]), and sleep supplement use (13.5% vs 8.3%; PR = 1.56 [1.09-2.22]) than siblings. Survivors who developed emotional distress were more likely to report poor sleep efficiency (PR = 1.70 [1.40-2.07]), restricted sleep time (PR = 1.35 [1.12-1.62]), fatigue (PR = 2.11 [1.92-2.32]), daytime sleepiness (PR = 2.19 [1.71-2.82]), snoring (PR = 1.85 [1.08-3.16]), and more sleep medication (PR = 2.86 [2.00-4.09]) and supplement use (PR = 1.89[1.33-2.69]). Survivors reporting symptoms of insomnia (PR = 1.46 [1.02-2.08]), fatigue (PR = 1.31 [1.01-1.72]), and using sleep medications (PR = 2.16 [1.13-4.12]) were more likely to develop migraines/headaches. CONCLUSIONS: Survivors report more sleep difficulties and efforts to manage sleep than siblings. These sleep behaviors are related to worsening or persistently elevated emotional distress and may result in increased risk for migraines. Behavioral interventions targeting sleep may be important for improving health outcomes.

The relationship between child and caregiver sleep in acute lymphoblastic leukemia maintenance.

PURPOSE: The purposes of this study are to describe sleep quality and sleep disturbance among caregivers of children in the maintenance phase of acute lymphoblastic leukemia (ALL) and to examine the relationship between sleep quality, child sleep disturbance, and caregiver guilt and worry. METHODS: Caregivers of 68 children with ALL, ages 3 to 12 years old, completed measures of caregiver guilt and worry, caregiver sleep quality, and child's developmental history and sleep habits. Demographic and treatment correlates of poor caregiver sleep were examined, and caregiver guilt and worry was tested as a moderator between child and caregiver sleep. RESULTS: More than half of caregivers (55.9%) reported clinically significant poor sleep and less than 40% were obtaining adequate sleep durations. Caregiver sleep was significantly related to child age at diagnosis, child sleep, and caregiver guilt and worry. Caregiver guilt and worry did not moderate the relationship between child sleep and caregiver sleep. CONCLUSIONS: Poor sleep is common in caregivers of children with cancer. Further research on the timing of sleep interventions and the most effective intervention targets are needed to maximize caregiver functioning during a child's cancer treatment. Targeted interventions seeking to improve caregiver sleep should be directed towards caregivers of children diagnosed in early childhood, caregivers of children with poor sleep, and caregivers with high guilt and worry.

Family Functioning, Medical Self-Management, and Health Outcomes Among School-Aged Children With Sickle Cell Disease: A Mediation Model.

Background: Informed by the Pediatric Self-Management Model, the present study tested relationships between parent and family functioning, sickle cell disease (SCD) self-management, and health outcomes for children with SCD. Method: 83 children with SCD and a parent completed baseline data as part of a larger investigation of a family-based, problem-solving intervention for children with SCD (M age = 8.47). Youth and parents completed a measure of child health-related quality of life (HRQOL), and parents completed measures of family efficacy, parenting stress, and SCD self-management. SCD pain episodes and urgent health utilization information over the past year were obtained via medical chart review. Results: SCD self-management mediated the relationship between parent-reported family efficacy and parent proxy HRQOL, as well as the relationship between parenting stress and child and parent proxy HRQOL. Mediation models were nonsignificant for outcomes beyond HRQOL, including SCD pain episodes and urgent health utilization. Conclusion: Fostering family efficacy and reducing parenting stress may be meaningful intervention targets for improving SCD self-management and child HRQOL among school-aged children. Although findings were consistent with the Pediatric Self-Management Model in terms of HRQOL, the model was not supported for pain episodes or urgent health utilization, highlighting the need for multi-method, longitudinal research on the SCD self-management behaviors that are linked to preventable health outcomes.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Sleep in Adolescents and Young Adults in the Year After Cancer Treatment.

PURPOSE: Adolescents and young adults (AYA) with cancer are a vulnerable group facing more intense treatments, higher symptom burden, and poorer treatment outcomes relative to younger children. Sleep disruption is common during cancer treatment and sleep problems persist into adulthood for some survivors of AYA cancer. The developmental period of adolescence/emerging adulthood confers greater biological and behavioral risk for insufficient sleep relative to older or younger ages. Thus, understanding AYA sleep disturbances shortly after completing treatment can inform interventions to manage cancer-related symptoms and improve quality of life. METHODS: Sixty-one AYA (ages 12-25) within 1 year of finishing cancer treatment completed the Pittsburgh Sleep Quality Index (PSQI) and the Minneapolis-Manchester Quality of Life Instrument-Adolescent Form. Treatment variables were extracted from electronic medical records. RESULTS: Forty-seven percent of participants were classified as "poor sleepers," 41% reported prolonged sleep onset latency (>30 minutes), 31% reported sleep efficiency suggestive of insomnia, and 33% slept <8 hours nightly. Age moderated the relationship between time off treatment and PSQI total score: for younger AYA the relationship was positive and for older AYA the relationship was negative. Better sleep and higher quality of life were strongly related (r = -0.57, p < 0.001). CONCLUSIONS: For almost half of AYA cancer survivors studied, sleep is disrupted as indicated by long sleep-onset latencies, sleep efficiency suggestive of insomnia, and inadequate total sleep time. Screening for sleep disturbances after AYA complete cancer therapy may reduce the impact of sleep on quality of life and identify those at risk for insomnia.

The impact of dexamethasone and prednisone on sleep in children with acute lymphoblastic leukemia.

PURPOSE: Corticosteroids can affect sleep patterns, mood, and behavior. Two of the most commonly prescribed corticosteroids in acute lymphoblastic leukemia (ALL), dexamethasone and prednisone, may impact sleep differently, but no research has compared these medications in children. The current study tested the hypothesis that dexamethasone and prednisone differentially affect sleep in children with ALL to understand how these medications contribute to health-related quality of life (HRQL). METHODS: Parents of 81 children 3-12 years old in maintenance therapy for ALL completed a baseline measure of child sleep (dexamethasone n = 55, prednisone n = 26), and 61 parents returned 28 days of child sleep diaries starting the first day of a 5-day steroid course (dexamethasone n = 43, prednisone n = 18). Parents also completed measures of HRQL and fatigue on the last day of steroids and the last day of the month. RESULTS: At baseline, parents reported more sleep disturbances in children taking dexamethasone than prednisone. Across the month, children taking dexamethasone experienced poorer sleep quality compared to children taking prednisone. During corticosteroid treatment, children taking dexamethasone also experienced more night awakenings than children taking prednisone. Sleep variables accounted for almost half of the variance in HRQL during time off steroids and also significantly contributed to fatigue during the corticosteroids course and time off corticosteroids. CONCLUSIONS: Sleep is an essential component of HRQL in children taking corticosteroids, and the impact on sleep is more pronounced in children taking dexamethasone compared to prednisone. Screening for sleep disturbances and offering brief interventions to manage steroid-related sleep disruptions may improve HRQL.