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Childhood cancer incidence is rising, affecting a growing proportion of elementary school students. For most of these children, school attendance can be limited by hospitalisations, treatments and side effects. However, little is yet known about the educational needs and experiences of this population. This phenomenological study explored the school experiences of 10 6- to 12-year-old children with cancer as they underwent chemotherapy. Results revealed perceptions that attending school in the hospital or home during cancer treatment is essentially lonely, confusing and “different”. These perceptions intertwined to illuminate five themes: (1) school should involve fun activities; (2) group educational formats are preferable; (3) old school is the “best school”; (4) being a “good student” is important during treatment; and (5) attending school is complicated during treatment. Therefore, hospital-based and homebound schooling programmes should integrate socially interactive and cognitively engaging ...

To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.

BACKGROUND: End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in pediatric oncology patients to determine whether end-of-life characteristics differed between those who were and were not enrolled in a phase 1 trial. METHODS: The authors reviewed the medical records of 380 pediatric oncology patients (aged

Background Improvements in treatment and management for pediatric central nervous system (CNS) tumors have increased survival rates, allowing clinicians to focus on long-term sequelae, including sleep disorders. The objective of this study was to describe a series of CNS tumor survivors who had sleep evaluations that included polysomnography with attention to sleep disorder in relation to the tumor site.

Purpose When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition. Methods In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent. Results Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer. Conclusion The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.

Parents of terminally ill children with cancer frequently ask clinicians when their child will die. Such information helps parents prepare for the child's death. To identify how parents perceived when their child's cancer-related death would occur, we conducted a secondary analysis of telephone interviews with 49 bereaved parents 6–10 months after their child's death to extract their descriptions of this occurrence. The parents knew in advance that their child was going to die, but they described when their child's death would occur in three different ways: anticipated (parents observed changes that alerted them that death was imminent; n = 22, 52.4%), surprising (parents were surprised that their child died on that particular day; n = 13, 31.0%), and overdue (parents had been waiting for the end of their child's apparent suffering; n = 7, 16.7%). These categories did not differ by patients' diagnosis, sex, or location of death but differed slightly by symptom patterns. Parents who reported the occurrence of their child's death as surprising reported fewer symptom changes on the last day of their child's life, compared with the last week of life, than did the parents in the other two categories. These findings indicate that parents of children with terminal cancer can perceive when their child's death would occur very differently: Some are surprised, whereas others feel they have waited too long for their child's release from suffering. Clinicians can use these descriptions and the associated symptom patterns to help families prepare for their child's last week and last day.

Although measuring health-related quality of life (HRQoL) in adolescents with cancer helps clinicians to personalize care for their patients, no previous studies have included HRQoL measurement at the time of diagnosis of osteosarcoma (OS) or acute myeloid leukemia (AML). The purpose of this study was to evaluate the feasibility of measuring adolescents' HRQoL at the time of their diagnosis of OS or AML, and to compare their ratings with those of their parents and of similarly diagnosed but younger patients aged 8- to 12- years. Participants included 126 patients (79 adolescents) and 130 parents (78 parents of adolescents); most completed the HRQoL instrument/s within 48 hours of the first chemotherapy cycle. Ninety-three percent of adolescents diagnosed with OS and 93% of those diagnosed with AML completed the HRQoL instruments. Agreement between the adolescents and their parents ranged from 0.29 to 0.71 (OS) and 0.44 to 0.62 (AML). In all domains, OS adolescents had significantly lower PedsQL v.4.0 scores than adolescents with AML. Our findings demonstrates the feasibility of measuring HRQoL in adolescents with OS or AML (and their parents) at the time of diagnosis, and thus their HRQoL ratings can be used to inform their cancer care from diagnosis forward.

Background Health-related quality of life (HRQOL) of paediatric patients with osteosarcoma has not been documented longitudinally during treatment. Aims of this prospective study were to assess treatment effects on patients’ HRQOL at diagnosis, during therapy and after completion of therapy, to assess sex- and age-related differences in HRQOL ratings and to assess differences between patients’ and parents’ reports. Patients and methods Sixty-six patients (median age, 13.4 years) with newly diagnosed, localised disease completed three HRQOL instruments, and their parents completed two of the same instruments at diagnosis, before surgery (Week 12), at Week 23 and a median of 20 weeks after treatment completion. Results Significant improvements in most domains and worsening of nausea were reported by patients and parents from diagnosis to Weeks 12 and 23. Symptom distress decreased from diagnosis to Weeks 12 and 23 in 81% and 64% of patients, respectively. There were no sex- and few age-related differences in scores. Scores from patients and parents achieved good agreement. Conclusions The HRQOL of patients improves during aggressive treatment for non-metastatic osteosarcoma, except in the domain of nausea. Clinicians can use these findings to prepare their patients for the distressing symptoms that they will likely experience at certain time points and to provide reassurance that these will significantly improve.

IT is well known that aging is associated with changes in body composition, including an increase of fat mass and a decline in lean mass. Abdominal fat, largely caused by the accumulation of visceral fat, increases proportionally more with age than peripheral fat (1–4). Many epidemiological and clinical studies have shown that excess abdominal visceral fat correlates with increased risk for hypertension, dyslipidemia, and hyperglycemia (5–7). Measurement of body mass index (BMI) in older individuals may not adequately reflect abdominal fat accumulation because of the concurrent decrease in muscle mass. In older individuals particularly, waist circumference is a more accurate indicator of abdominal visceral fat level than BMI, percent body fat, or waist-to-hip ratio (8) and provides good correlation with the gold standard, computed tomography or magnetic resonance imaging (MRI) of the abdomen (9). Because overweight and obesity increase the risk for vascular and metabolic disorders, body fat, particularly central body adiposity, may be a risk factor for age-related cognitive impairment or dementia. Several reports demonstrate an association between high BMI at midlife and increased risk for dementia in older ages (10–12); however, the association between adiposity at older ages and the development of dementia or cognitive impairment is less clear (13–16). The prevalence of central and general obesity is rapidly increasing in the United States, and prevalence of these conditions in Mexican Americans is disproportionately higher than in non-Hispanic whites and other Hispanic groups (17). We prospectively evaluated the associations of waist circumference and BMI with incident dementia or cognitive impairment in a cohort of older Mexican Americans.

End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died.We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white.We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48).When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.

Background Those with an Apolipoprotein APOE4 allele (APOE4) have lower C-reactive protein (CRP) than those without APOE4. Whether APOE4 modifies the effects of CRP on rate of all cause dementia, cognitive impairment or Alzheimer's disease (AD) is not established. Methods All cause dementia and cognitive impairment without dementia (CIND) was determined over five follow up visits from 1998 to 2006 in an ongoing cohort of older Latinos. The association between high sensitivity CRP and dementia/CIND, all cause dementia and Alzheimer's disease by APOE4 status was examined in semi-parametric survival models with covariate adjustments. Results CRP was significantly lower among those with APOE4 than in those without. Among those with APOE4, CRP was associated with lower rates of combined dementia/CIND (HR: 0.60, 95% CL: 0.20–0.91, p = 0.03) from a fully adjusted model. Among those with no APOE4, there was no effect of CRP on dementia/CIND rates (HR: 0.94, 95% CL: 0.67–1.33). Conclusions Lower CRP in those with APOE4 may reflect immune effects of the APOE4 genotype. Higher CRP in those with APOE4 may be a marker of better immune function, leading to lower rate of dementia and AD.

Objective To examine gender differences in sleep, fatigue, and daytime activity in a sample of children with acute lymphoblastic leukemia (ALL). Methods Participants included 88 children in maintenance treatment for ALL (34 girls; 54 boys). Participants wore an actigraph for 10 consecutive days (5 days pre-dexamethasone and 5 days during dexamethasone administration). Fatigue instruments were also administered. Results Girls napped more and had less fragmented night sleep than boys did. Wake time after sleep onset was sensitive to dexamethasone administration, revealing a differential direction of response for girls and boys. No gender differences were observed for subjective fatigue or daytime activity in the total sample. Conclusions Our preliminary findings support gender differences in the sleep of children with cancer after controlling for differences in age, treatment, and risk group. Future research that focuses on the etiology of gender differences and developing interventions will help clarify the clinical application of our findings.

OBJECTIVES: To investigate the effect of metabolic syndrome on cognitive function in an elderly Latino population and to determine whether inflammation modifies this association. DESIGN: A longitudinal cohort study. SETTING: Sacramento area and the surrounding California counties from 1998 to 1999. PARTICIPANTS: One thousand six hundred twenty-four Latinos aged 60 and older who participated in the Sacramento Area Latino Study of Aging. MEASUREMENTS: Baseline metabolic syndrome was calculated using the Third Adult Treatment Panel of the National Cholesterol Education Program. Cognitive function was measured using the Modified Mini-Mental State Examination (3MS) and the Delayed Word-List Recall (DelRec), a verbal memory test. The effect of metabolic syndrome on cognitive change scores was examined using random effects models; in addition, the effect of the individual components of the syndrome on cognitive change was examined. RESULTS: Of the 1,624 participants, 718 (44%) had metabolic syndrome at baseline. Those with metabolic syndrome had worse 3-year change scores on 3MS (P 5.04) and DelRec (P 5.03). Multivariate adjustment attenuated the results for DelRec but not for 3MS. This association was especially pronounced in participants with a high serum level of inflammation, resulting in an average 3MS score 0.64 points lower per year (P 5.03) for those with metabolic syndrome. Individual components of metabolic syndrome were not associated with cognitive decline except for elevated glucose on the DelRec (P 5.02) and high blood pressure on 3MS (P 5.05). CONCLUSION: Metabolic syndrome and inflammation may both contribute to cognitive decline in older people of diverse backgrounds. The results also suggest that, in elderly Latinos, the composite measure of metabolic syndrome is a greater risk for cognitive decline than its individual components. J Am Geriatr Soc 55:758–762, 2007.

BACKGROUND. Dexamethasone improves the cure rate of childhood acute lymphoblastic leukemia (ALL) but causes physical and behavioral adverse events. The objective of the current study was to determine the effect of dexamethasone exposure on sleep and fatigue in pediatric patients with ALL. METHODS. One hundred pediatric patients with low-risk or standard-risk ALL were enrolled on 1 of 3 protocols (St. Jude Total XV, Children's Oncology Group [COG] 9904, or COG 9905) at 3 institutions. The mean age of the cohort was 9.24 ± 3.23 years (range, 5.03-18.14 years). The majority of patients were white (79%) males (62%) with standard-risk ALL (63%). The cohort was divided into 4 subgroups: St. Jude low-risk, St. Jude standard-risk, COG low-risk, and COG standard-risk. Patients wore a wrist actigraph to monitor sleep activity during 2 consecutive 5-day periods: During the first period, they did not receive dexamethasone; and, during the second period, they did. Patients and their parents completed fatigue instruments on Days 2 and 5 of each period, and parents completed sleep diaries. RESULTS. Actual sleep minutes, sleep duration, total daily nap minutes, and fatigue increased significantly during the dexamethasone treatment for 3 to 4 of the subgroups. Total daily nap minutes increased significantly for both standard-risk groups during the dexamethasone treatment. Parents reported significant increases in their child's nighttime awakenings, restless sleep, and nap time during dexamethasone treatment. CONCLUSIONS. Dexamethasone treatment during continuation therapy for childhood ALL significantly and adversely altered sleep and fatigue, confirming that sleep and fatigue are behavioral responses to dexamethasone. 2007. © 2007 American Cancer Society.

BACKGROUND Qualitative research provides insight into the cancer experience through the perspective of the pediatric patient. However, somewhat small sample sizes can hinder full discovery of new knowledge and limit interpretation of data. OBJECTIVE The objective of this study was to describe health-related quality of life (HRQOL) reported by children and adolescents in responses to 2 interview questions during treatment for acute lymphoblastic leukemia (ALL) and compare their responses by age, gender, risk group, and time in treatment through a quantitative content analysis approach. METHODS Children and adolescents (N = 150) were asked 2 validated questions in pediatric patients receiving treatment for ALL: "What makes a good day for you?" and "How has being sick been for you?" over 6 treatment time points. Interview data were coded analyzed quantitatively. RESULTS Code frequencies differed significantly by age, gender, risk group, and time in treatment. Adolescents had a greater focus on being with friends, and females generally reported more codes representing negative experiences. Children and adolescents reported being affected by symptoms resulting from cancer treatment. Some adolescents described that being sick positively changed their lives and viewed their illness as a new life experience. CONCLUSION The 2 proposed questions are feasible to use clinically to assess HRQOL in children and adolescents with ALL, and the qualitative codes from their descriptions can be used to identify factors affecting HRQOL of children and adolescents with leukemia. IMPLICATIONS FOR PRACTICE Nurses can use these 2 questions to assess the HRQOL of children and adolescents during and following treatment for ALL.

Objective To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. Study design A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses. Results Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again. Conclusion Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.

Background/Aims: While social factors may influence the trajectories of cognitive aging, the influence of spousal characteristics (i.e. health or mental health) on cognitive decline has received little attention. This study examined the influence of baseline depressive symptoms in one spouse on cognitive functioning in the other. Methods: We conducted a longitudinal study of 279 Latino spousal pairs (558 people) taken from a cohort study (n = 1,789) in California’s central valley with assessments every 12–18 months. Results: Higher husband baseline depression was significantly associated with lower cognitive scores maintained across time for both husbands (p < 0.001) and wives (p = 0.01). Wives with higher baseline depression scores showed significantly worse cognitive function over time (p = 0.007). Conclusions: Husbands’ cognitive function was more strongly linked to their own level of depression, whereas wives’ cognitive function was influenced by both their own and their partners’ level of baseline depression. Our study further documents the public health significance of depression and our need to look beyond the individual to the reverberating effects of depression on the family.

The Pro12Ala polymorphism in the PPAR-γ gene has been associated with reduced incidence of type 2 diabetes. Although diabetes has been implicated as a risk factor for dementia, the association of Pro12Ala with cognitive impairment is unclear. Dementia and cognitive impairment without dementia (CIND) were determined during six annual follow-up evaluations in a cohort of 929 older Latinos. Among those with diabetes at baseline, there was an increased rate of dementia/CIND for Ala carriers compared to non-carriers (adjusted hazard ratio (HR) = 2.5, 95% confidence interval (CI): 1.3–4.9) but not among non-diabetic participants (adjusted HR = 0.94; 95% CI: 0.49–1.8). Among males, there was also an increased rate for Ala carriers (adjusted HR = 2.7, 95% CI: 1.4–5.2) but not among female carriers (adjusted HR = 0.88; 95% CI: 0.47–1.6). The rate of dementia/CIND was highest in diabetic male Ala carriers (adjusted HR = 4.2; 95% CI: 1.5–11) compared to non-diabetic male carriers (adjusted HR = 2.9; 95% CI: 1.1–7.4), diabetic female carriers (HR = 1.6; 95% CI: 0.66–4.1), and non-diabetic female carriers (HR = 0.52; 95% CI: 0.21–1.3). These data suggest that although the Ala variant is associated with a reduced risk of type 2 diabetes, it may increase the risk of cognitive impairment in individuals once diabetes has developed. Male Ala carriers may also have a greater risk of dementia/CIND.

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.

Dyspnoea, also referred to as breathlessness, is a concern of nurses in most clinical settings. Nursing interventions are directed toward preventing or treating dyspnoea in a timely manner. Even though dyspnoea is a common phenomenon found in clinical settings and discussed in the literature, it has not been added formally to the list of diagnoses developed by the North American Nursing Diagnosis Association, most likely because it is an isolated, observable sign. However, breathlessness, the related construct, is a distinctly different phenomenon from dyspnoea. The terms dyspnoea and breathlessness are used interchangeably in the literature. Traditionally, dyspnoea is defined as difficult or laboured breathing observable to another person. Breathlessness is the subjective feeling of laboured breathing with and without dyspnoea and/or abnormal pulmonary functions. These authors submit that the nursing diagnosis of breathlessness consists of two essential defining criteria, the subjective feeling of difficulty in breathing and anxiety, in the presence or absence of dyspnoea and/or abnormal pulmonary functions. A biopsychosocial model is presented to guide research and nursing care for individuals who experience breathlessness.

Thirty patients (ages 5 to 13) hospitalized In a pediatric oncology intensive care unit (ICU) rated the presence and severity of their pain on the Faces Pain Scale (FPS) and the Poker Chip Tool (PCT). Parents independently rated the child's pain on these scales and each patient's nurse completed the Objective Pain Scale (OPS). Patients' ratings on the FPS correlated significantly with parents' ratings on this scale (τ = .48, P = .002) but not on the PCT (τ = .23, P = .16). Nurses' ratings on the OPS were moderately correlated with patients' FPS ratings (τ = .37, P = .02) but were only weakly associated with PCT ratings (τ = .27, P = .09). The majority of patients, parents, and nurses eacpressed a preference for the FPS over the PCT. The FPS appears to be a clinically useful and accurate approach for measuring the pain of pediatric oncology patients in an ICU but is limited to those who can participate in a self-report measurement. © 1994 by Association of Pediatric Oncology Nurses.

20004 Background: Clinicians and parents report that end-of-life (EoL) care discussions and decision making are complex, difficult and affected by personal, family, and disease and treatment factors. The influence of race on EoL discussions and decision making has not been carefully examined in a large pediatric oncology study. The purpose of this study was to assess if race (white, black, Hispanic) influenced the quantity or timing of end-of-life care discussions and decisions. Methods: This abstract represents a retrospective chart review leading to the creation of an EoL database of pediatric oncology patients at St Jude Children’s Research Hospital who died during the time period of July 01, 2001 to February 28, 2005. Eligibility criteria were oncologic diagnosis, and patient age less than 21.99 years of age at the time of death. After strict application of the eligibility criteria, a total of 380 patients met study inclusion criteria. The effect of race on the quantity and timing of EoL discussions and decision making was then analyzed from the database. All extracted data were validated by a different team member as was the accuracy of all entered data. The association of race with other factors was assessed using regression analysis and chi-squared testing statistics. Results: None of the following differed by race: the total number of EoL discussions before an EoL decision was made (p=0.58); the total time from the first such discussion to a specific EoL decision (p=0.23–0.68), the total time from the first discussion to the patient’s death (p=0.105), or having a DNR in place at the time of death (p=0.55). Conclusions: In this cohort of patients from a tertiary referral center, race is not a significant factor on the quantity and timing of EoL discussions and decision making in pediatric oncology patients. [Table: see text] No significant financial relationships to disclose.