Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

BACKGROUND: Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP. PROCEDURE: We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Interviews sought to elicit perceived communication gaps regarding cancer care and inform D100 development. Following qualitative analysis of interview responses, we developed a three-part D100 conversation tool consisting of a preparatory family worksheet, a conversation guide, and a family summary sheet. We presented the tool during interviews and a focus group with pediatric oncology providers and revised it to incorporate provider input. RESULTS: Twenty-two stakeholders (six parents, five adolescents, and 11 providers) participated in interviews or a focus group. Parents and patients perceived insufficient anticipatory guidance as the most important communication gap. They also reported sometimes withholding worries and cancer-related beliefs. Meanwhile, oncology providers worried about "opening Pandora's Box" and limited clinical time. Additionally, providers reported employing indirect methods such as surmising to determine families' needs and relying on psychosocial clinicians to engage families around potentially "taboo" issues of emotional coping and spirituality. CONCLUSION: Creating a communication occasion (D100), ensuring complementary disciplinary expertise through joint participation by oncologists and psychosocial clinicians, and providing a conversation tool to prompt disclosure by families and facilitate anticipatory guidance may ameliorate existing communication gaps during the ECTP.

Communication preferences of pediatric cancer patients: talking about prognosis and their future life.

PURPOSE: The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However, there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment. METHODS: Participants included young people ages 8 to under 18 years with cancer (N = 16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting. RESULTS: Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life. CONCLUSIONS: While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.

Preparing youth with cancer for amputation: A systematic review.

Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and postoperative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.

Communication Skills Training in Pediatric Oncology: Moving Beyond Role Modeling.

Communication is central to pediatric oncology care. Pediatric oncologists disclose life-threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment-related or disease-related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology.

Screening for fatigue in adolescent and young adult pediatric brain tumor survivors: accuracy of a single-item screening measure.

PURPOSE: Cancer-related fatigue (CRF) is one of the most commonly reported and distressing symptoms experienced by adolescent and young adult (AYA) cancer survivors. While national guidelines have recommended screening for CRF during routine follow-up appointments, the validity of using a one-item screening measure for fatigue has not been examined with AYA brain tumor survivors. The purpose of this study is to assess how well a single-item fatigue screen could identify clinically significant fatigue in childhood brain tumor survivors. METHODS: A single-item measure, the Fatigue Thermometer (FT), was compared with a more in-depth measure, the Multidimensional Fatigue Scale (MFS), in a cohort of AYA pediatric brain tumor survivors. One hundred and forty-two survivors (aged 12-32 years) completed the two instruments. RESULTS: Forty-two survivors were identified on the MFS as having clinically significant fatigue, but the FT was not found to be an accurate tool for identifying these cases. Although receiver operating characteristic curve analysis of FT ratings against the MFS criterion indicated good concordance between measures, no cutoff score on the FT was identified that resulted in acceptable sensitivity and specificity. CONCLUSIONS: Results from this study suggest that a single-item screening measure for fatigue is not able to reliably identify clinically significant fatigue in AYA brain tumor survivors.

Sleep in children with cancer: case review of 70 children evaluated in a comprehensive pediatric sleep center.

GOAL: The goal of this study was to characterize the sleep problems of children with cancer who were referred for a comprehensive sleep evaluation. MATERIALS AND METHODS: A retrospective case series review was conducted of all children with cancer referred to the pediatric sleep clinic from 1994 to 2009 for evaluation of a sleep problem. Seventy children were seen and evaluated during this interval; all had a complete sleep history taken, and further objective sleep evaluations were performed as part of their evaluation only when clinically indicated. An overnight polysomnogram was performed in 53 children. In 36 children with a history of excessive daytime sleepiness (EDS), a multiple sleep latency study was performed the following day. Seven children had a 3-4-week actigraphic study. RESULTS: Children with neoplasms of central nervous system (CNS) involving the hypothalamus, thalamus, and brainstem were the most commonly referred children and had the most frequent and severe sleep problems. Excessive daytime sleepiness was the most common sleep problem, seen in 60% of children with cancer and in 80% of children with CNS neoplasms involving the hypothalamus, thalamus, and brainstem. Sleep disordered breathing (SDB) was present in 40% of the entire group of children with cancer and 46% of children with neoplasms involving the hypothalamus, thalamus, and brainstem. Children with CNS neoplasms often had more than one sleep problem, most commonly EDS and SDB. In these children, correction of the SDB often did not eliminate the EDS. In children with leukemia, insomnia was the most common sleep problem identified, present in 39%. The causes of the sleep problems were varied and included neurologic injury caused by the neoplasm and/or the CNS-directed treatments; seizures, adenotonsillar hypertrophy, medication side effects, obesity, pain, anxiety, and drug abuse. Some of the sleep problems were present before the diagnosis of cancer, though most developed after treatment was begun. A wide range of intervention strategies were utilized to address the sleep problems and included sleep hygiene/sleep restriction, behavioral counseling, continuous positive airway pressure, bilevel positive airway pressure, tracheotomy with and without a ventilator, diaphragmatic pacers, sedative hypnotics, stimulants, anticonvulsants, and antidepressants. When the sleep problems and their causes were correctly identified and treatments were directed to the specific cause of the problem, the treatments were generally successful. CONCLUSIONS: The sleep problems of children with cancer span the full spectrum of clinical sleep disorders (hypersomnia, sleep disordered breathing, insomnia, parasomnias, and circadian rhythm disorders) and are often present in combinations. Children with neoplasms involving the brainstem, thalamus, and hypothalamus were the most frequently referred for a sleep evaluation, and their sleep problems were most commonly EDS or SDB. Expertise in pediatric sleep disorders can be a valuable resource in the ongoing care of children with cancer.

Do adolescent offspring of women with PTSD experience higher levels of chronic and episodic stress?

Offspring of mothers with posttraumatic stress disorder (PTSD) are at higher risk for a range of negative developmental outcomes, including differing forms of psychopathology. This study suggests that the multigenerational impact of trauma may be partially attributed to increased levels of stress experienced by these offspring during childhood and adolescence. Diagnostic interviews were conducted with over 800 women and their offspring. Experiences of stress were assessed using multiple measures. Results indicate that offspring of mothers with PTSD or high levels of PTSD symptoms experienced higher levels of lifetime exposure to major stress, η(2) = .02, current chronic stress due to family relations, η(2) = .01, and a higher level of objectively rated recent episodic life stress, η(2) = .01, compared to offspring of women without PTSD. These findings remained significant after controlling for maternal history of depression.

Deconstructing antenatal depression: What is it that matters for neonatal behavioral functioning?

This prospective study examined the variability within clinical characteristics of antenatal maternal depression and cortisol levels for associations with newborn infant behavior using the Neonatal Behavioral Assessment Scale (NBAS; T.B. Brazelton, 1984). Participants were 81 pregnant women at risk for perinatal depression given their histories of depression prior to pregnancy. We took into consideration not only whether the woman experienced antenatal depression but also whether the depression met diagnostic criteria and variability in timing (onset and occurrence) of antenatal depression and symptom severity. Infants of mothers who became depressed during pregnancy scored less optimally on a subset of the NBAS scales, specifically those scales related to infant neuroregulation. Among the clinical characteristics of depression, the fetus' overall exposure to mothers' depression (reflected in the mean) was most often and most strongly associated with NBAS scales. In terms of timing, third-trimester exposure was significantly related to newborn behavior. The findings are discussed within the S.H. Goodman and I.H. Gotlib (1999) model for transmission of psychopathology to offspring of depressed mothers.

Impact of antenatal and postpartum maternal mental illness: how are the children?

Prospective studies that begin during pregnancy and follow the mothers and children into adolescence have shown that maternal mental illness during the antenatal and postpartum period can have long-lasting negative consequences on the developing child. The findings from these prospective studies and a discussion of the consistencies and inconsistencies in the current literature are presented. The effects of maternal anxiety and depression during the perinatal period on cognitive, behavioral, and psychologic development from infancy through adolescence are examined.

Longitudinal assessment of cognitive performance in Holocaust survivors with and without PTSD.

BACKGROUND: There are currently no longitudinal studies of cognitive performance in older patients with Posttraumatic Stress Disorder (PTSD). It is therefore unclear whether relationships between memory and symptoms differ over time among older persons with and without PTSD. METHODS: Twenty-eight Holocaust survivors and nineteen comparison subjects were evaluated 5 years after they had received a memory assessment including paired-associates learning and the California Verbal Learning Test (CVLT). RESULTS: While Holocaust survivors with PTSD showed a diminution in symptom severity (t = 2.99, df = 12, p = .011), they still manifested a decline in paired associates learning, suggesting an acceleration in age-related memory impairment (related word pairs: t = 2.87, df = 13, p = .013; unrelated word pairs: t = 2.06, df = 13, p = .060). The survivors with PTSD showed improvements on several CVLT measures over time. These improvements correlated with symptom improvements, such that group differences at the follow-up were no longer detected. CONCLUSIONS: The discrepancy in the pattern of performance on these two tests of memory following symptom improvement suggests possible differentiation between of aspects of memory functions associated with aging and trauma exposure and those associated with the severity of PTSD symptoms. Performance on the CVLT appeared related to clinical symptom severity while paired associate learning worsened over time in Holocaust survivors with PTSD, consistent with earlier cross-sectional findings.

The effect of maternal PTSD following in utero trauma exposure on behavior and temperament in the 9-month-old infant.

UNLABELLED: In view of evidence of in utero glucocorticoid programming, and our prior observation of lower cortisol levels in 9-month-old infants of mothers with posttraumatic stress disorder (PTSD) compared to mothers without PTSD, we undertook an examination of the effect of in utero maternal stress, as determined by PTSD symptom severity, and maternal cortisol levels on behavioral outcomes in the infant. METHODS: Ninety-eight pregnant women directly exposed to the World Trade Center (WTC) collapse on 9/11 provided salivary cortisol samples and completed a PTSD symptom questionnaire and a behavior rating scale to measure infant temperament, including distress to limitations, and response to novelty. RESULTS: Mothers who developed PTSD in response to 9/11 had lower morning and evening salivary cortisol levels, compared to mothers who did not develop PTSD. Maternal morning cortisol levels were inversely related to their rating of infant distress and response to novelty (i.e., loud noises, new foods, unfamiliar people). Also, mothers who had PTSD rated their infants as having greater distress to novelty than did mothers without PTSD (t = 2.77, df = 61, P = 0.007). CONCLUSION: Longitudinal studies are needed to determine how the association between maternal PTSD symptoms and cortisol levels and infant temperament reflect genetic and/or epigenetic mechanisms of intergenerational transmission.

The relationship between hippocampal volume and declarative memory in a population of combat veterans with and without PTSD.

Both reduced hippocampal volume and cognitive alterations have been found in posttraumatic stress disorder (PTSD). The purpose of this article was to examine the relationship between hippocampal volume, combat exposure, symptom severity, and memory performance in a sample of combat veterans with and without a history of PTSD. Subjects were 33 male veteran volunteers (16 PTSD+, 17 PTSD-) who underwent an MRI and neuropsychological testing with the California Verbal Learning Test (CVLT), a measure of declarative memory. Relationships between hippocampal volume (i.e., right + left hippocampal volume/whole brain volume) and performance on the CVLT were determined using partial correlational analysis controlled for age and Wechsler Adult Intelligence Scale, Third Edition (WAIS-III) vocabulary scores. Percent hippocampal volume for the entire sample was positively associated with several aspects of memory performance as reflected by the CVLT. In the PTSD+ group, CVLT performance was negatively correlated with lifetime, but not current CAPS symptoms. CVLT performance appears to be strongly correlated with hippocampal volume in a group of trauma survivors with and without PTSD. Insofar as CVLT performance in the PTSD group was negatively associated with worst episode, but not to current PTSD symptoms, memory performance in combat veterans may reflect some aspect of risk related to the magnitude of the psychological response to trauma, rather than current symptoms that may be interfering with cognitive performance. It will be of interest to study cognitive abilities that may relate to the likelihood of specific PTSD symptoms and to track changes in CVLT performance and hippocampal volume over time in persons with and without a history of trauma exposure.

Are adult offspring reliable informants about parental PTSD? A validation study.

We developed a short questionnaire--Parental PTSD Questionnaire--(PPQ), designed to assess the presence of posttraumatic stress disorder (PTSD) symptoms in parents. Fifty-eight adult offspring of Holocaust survivors (23 men and 35 women) completed the questionnaire about a parent who was independently evaluated by a trained clinician using the Clinician Administered PTSD Scale (CAPS). Only 5.2% of the offspring reported, "not knowing" if their parent had experienced 10 or fewer symptoms, while 56.9% provided estimates for all 17 items. There were no significant differences between lifetime frequencies of the individual symptoms as endorsed on the PPQ compared to the CAPS when subjects with completed PPQs were compared with CAPS. Interrater reliability between offspring and clinician was highly significant for each of the items when evaluated separately so as to include data for subjects who endorsed not knowing if a certain symptom had been present. Further studies are warranted to examine the psychometric properties of this measure.

Transgenerational effects of posttraumatic stress disorder in babies of mothers exposed to the World Trade Center attacks during pregnancy.

CONTEXT: Reduced cortisol levels have been linked with vulnerability to posttraumatic stress disorder (PTSD) and the risk factor of parental PTSD in adult offspring of Holocaust survivors. OBJECTIVE: The purpose of this study was to report on the relationship between maternal PTSD symptoms and salivary cortisol levels in infants of mothers directly exposed to the World Trade Center collapse on September 11, 2001 during pregnancy. DESIGN: Mothers (n = 38) collected salivary cortisol samples from themselves and their 1-yr-old babies at awakening and at bedtime. RESULTS: Lower cortisol levels were observed in both mothers (F = 5.15, df = 1, 34; P = 0.030) and babies of mothers (F = 8.0, df = 1, 29; P = 0.008) who developed PTSD in response to September 11 compared with mothers who did not develop PTSD and their babies. Lower cortisol levels were most apparent in babies born to mothers with PTSD exposed in their third trimesters. CONCLUSIONS: The data suggest that effects of maternal PTSD related to cortisol can be observed very early in the life of the offspring and underscore the relevance of in utero contributors to putative biological risk for PTSD.

The impact of maternal childhood abuse on maternal and infant HPA axis function in the postpartum period.

BACKGROUND: Early life trauma, particularly child abuse, has been associated with aberrations in hypothalamic-pituitary-adrenal (HPA) axis functioning in adulthood. However, the relationship of early abuse and later adult neuroendocrine changes may be moderated by additional factors such as comorbid psychopathology and recent life stress. Parental exposure to child abuse may have transgenerational effects, with offspring of abuse victims showing similar neuroendocrine profiles as their mothers. The majority of previous studies in this area focus on adult offspring, and the degree to which the effects of parental child abuse can be detected earlier in the development of the offspring remains obscure. METHODS: The current study utilized a clinical sample of women with a history of MDD (N=126), to examine the effects of maternal early life sexual and physical abuse (Childhood Trauma Questionnaire (CTQ)) on both maternal and infant salivary cortisol levels during a laboratory stress paradigm at 6 months postpartum. RESULTS: Maternal child abuse was associated with steeper declines in cortisol in the mothers and lower baseline cortisol in their infants. Comorbid maternal PTSD, current maternal depressive symptoms, and recent life stressors were significant moderators of maternal cortisol change. Maternal abuse history was associated with increases in cortisol levels in those mothers who experienced these additional stressors. Similarly, a history of early maternal abuse and comorbid PTSD was associated with greater increases in infant cortisol levels. CONCLUSIONS: Maternal childhood abuse was associated with HPA axis function in both the mother and the infant during the postpartum period.