Feasibility and face validity of two patient reported outcome measures for nausea: Preferences of children with cancer.

PURPOSE: To optimize recognition and management of nausea in children with cancer using patient reported outcome measures (PROMs) and to identify preferences of children with cancer regarding two validated tools: the Baxter Retching Faces (BARF) scale and the Pediatric Nausea Assessment Tool (PeNAT). DESIGN AND METHODS: This quantitative descriptive cross-sectional study (n = 34) used bespoke questionnaires to measure feasibility and face validity of the BARF and the PeNAT. Feasibility included the items: understanding, ease of use, and communication. Face validity was studied in terms of the degree in which the faces of both PROMs corresponded with children's feelings of nausea. A descriptive and comparative analysis of the data was performed. RESULTS: Both the BARF and the PeNAT were rated by the children as feasible, and no significant differences were found. However, regarding the item communication, the PeNAT did not reach the cut-off value (≥80% of all children scored neutral, agree or totally agree on the Likert scale). Regarding face validity, only the BARF reached the cut-off value and corresponded significantly better with children's feelings of nausea than the PeNAT. CONCLUSION: According to children with cancer, only the BARF is both feasible and meets criteria for face validity. Therefore, the BARF is recommended as a PROM for reporting nausea in children with cancer. However, possible differences between age groups should be taken into account for future research. PRACTICE IMPLICATIONS: This study will help health care professionals in making a patient-centered and informed choice when using a PROM for measuring nausea in children with cancer.

Evaluation of chemotherapy-induced nausea and vomiting in pediatric patients with high-grade glioma treated with lomustine-a case series.

PURPOSE: Although lomustine has been used as a chemotherapeutic agent for decades, no recommendation on appropriate chemotherapy-induced nausea and vomiting (CINV) prophylaxis is available. As CINV is considered one of the most bothersome side effects of chemotherapy, adequate prophylaxis is of relevance to improve quality of life during cancer treatment. The aim of this retrospective case series was to report the incidence and severity of CINV in pediatric patients with high-grade glioma treated with lomustine and to formulate recommendations for appropriate CINV prophylaxis. METHODS: Pediatric patients treated with lomustine for high-grade glioma according to the ACNS 0423 protocol were identified retrospectively. Two researchers independently reviewed and classified complaints of CINV and administered CINV prophylaxis. Treatment details, tumor localization, and response to therapy were systematically extracted from the patients' files. RESULTS: Seventeen children aged 8-18 years received a median of four cycles of lomustine. CINV complaints and administered prophylaxis were evaluable in all patients. Moderate or severe CINV was observed in 13/17 (76%) patients. Administered prophylactic CINV regimens varied from no prophylaxis to triple-agent combinations. CONCLUSION: In this case series, we identified lomustine as a highly emetogenic chemotherapeutic agent. According to the current guidelines, CINV prophylaxis with a 5-HT3 receptor antagonist in combination with dexamethasone and (fos)aprepitant is recommended.

Changes in body size and body composition in survivors of childhood cancer: seven years follow-up of a prospective cohort study.

BACKGROUND & AIMS: Cancer treatment is known to have impact on nutritional status, and both underweight and overweight have been reported in several studies in survivors. A limitation of most studies is that they relied on retrospective data or were limited to a subgroup of patients. The current study aims to describe changes in body size and body composition prospectively seven years after diagnosis in a heterogeneous sample of childhood cancer survivors and to evaluate associated factors. METHODS: The study population consisted of children diagnosed with hematological, solid and brain malignancies aged 0-18 years at diagnosis. Data of body size, body composition, and associated factors were collected at diagnosis, one year and seven years after diagnosis. RESULTS: In the total cohort mean BMI z-score increased during treatment. In children with hematological and brain malignancies BMI z-score continued to increase after end of treatment leading to quadrupling of the prevalence of obesity seven years after diagnosis. BMI at diagnosis (ß = -0.34, P = 0.007) and maternal BMI (ß = 0.25, P = 0.046) were associated with the increase in BMI z-score. Mean fat mass (FM) z-score, already high at diagnosis, increased during treatment in children with hematological and brain malignancies and evened out during follow-up. Changes in FM z-score were predicted by type of malignancy (hematologic malignancy versus solid tumor ß = 0.48, P = 0.008; brain tumor versus solid tumor ß = 0.45, P = 0.012). Mean fat free mass (FFM) z-scores started low at diagnosis, particularly in patients with brain tumors, increased during treatment in patients with solid and brain malignancies, though decreased in children with hematological malignancies. At 7 years follow-up a clear increase to normal was seen. Age at diagnosis (ß = 0.43, P = 0.004) and initial FFM (ß = -0.49, P = 0.001) were found to be significant predictors for changes in FFM z-scores. CONCLUSIONS: The finding that the once obtained extra weight and FM during treatment persisted after termination of treatment in children with hematological and brain malignancies, stresses the importance to create awareness about the risk of developing overweight in children during cancer treatment.

Eating and feeding problems in children with cancer: Prevalence, related factors, and consequences.

BACKGROUND & AIMS: During treatment for cancer, children experience many side effects such as lack of appetite, nausea, and vomiting. As a result, ensuring adequate intake puts pressure on both the child and the parent. This study aims to determine the prevalence, causes and consequences of eating and feeding problems in children treated for cancer. METHODS: Parents of 85 children with cancer completed the Behavioral Pediatrics Feeding Assessment Scale (BPFAS) and symptoms, BMI, energy intake, feeding style, and parental distress were measured at 0, 3, 6 and 12 months after diagnosis. RESULTS: Parent-reports revealed that almost a quarter of the children experienced eating disorder: 15.7% experienced problems related to diminished intake and 8.6% related to excessive intake. Prevalence of feeding disorders related to parents' behavior was 21.1%. In children <8 years prevalence of eating and feeding disorders was significantly higher: 31% and 36% for child and parent behavior respectively. Younger age, poor pre-illness eating behavior, increase in symptoms and a demanding feeding style were associated with more eating problems. Excessive eating resulted in higher energy intake, however, no association was found between eating problems and nutritional status. Food refusal resulted in more parental distress. CONCLUSIONS: Especially younger children with cancer are at risk for eating and feeding problems. In addition, poor pre-illness eating behavior, symptoms and a demanding feeding style aggravate eating problems. Therefore, interventions should focus at diminishing side effects of treatment and instructing parents to be less demanding regarding their child's eating behavior.

A longitudinal case-control study on goals in adolescents with cancer.

OBJECTIVE: This study examined whether: (1) the goals of adolescents with cancer at 3 months post-diagnosis (T1) and healthy peers differed in terms of content, valuation, and abstraction level, (2) the content, valuation and abstraction level of the goals of the adolescents with cancer differed between 3 and 12 months post-diagnosis (T2). METHODS: Thirty-three adolescents with cancer and 66 matched controls completed the Personal Project Analysis Inventory. After nine months, the adolescents with cancer completed the measure again. RESULTS: Compared to controls, adolescents with cancer at 3 months post-diagnosis (T1) reported more intrinsic than extrinsic goals, appraised intrinsic goals as more important than extrinsic goals and reported more concrete goals. Within the adolescents with cancer, the content, valuation and abstraction level of the goals did not differ between T1 and T2. CONCLUSIONS: Adolescents recently diagnosed with cancer set different types of goals than healthy peers and continue to set these types of goals until one year post-diagnosis. Future research can help determine how the personal goals of adolescents with cancer develop in the long term and to what extent personal goal setting during cancer influences the attainment of age-graded developmental tasks and well-being.

Malnutrition is associated with worse health-related quality of life in children with cancer.

PURPOSE: Malnutrition in childhood cancer patients has been associated with lower health-related quality of life (HRQOL). However, this association has never actually been tested. Therefore, we aimed to determine the association between nutritional status and HRQOL in children with cancer. METHODS: In 104 children, aged 2-18 years and diagnosed with hematological, solid, or brain malignancies, nutritional status and HRQOL were assessed at diagnosis and at 3, 6, and 12 months using the child- and parent-report versions of the PedsQL 4.0 Generic scale and the PedsQL 3.0 Cancer Module. Scores on both scales range from 0 to 100. RESULTS: Undernourished children (body mass index (BMI) or fat-free mass < -2 standard deviation score (SDS)) reported significantly lower PedsQL scores compared with well-nourished children on the domains physical functioning (-13.3), social functioning (-7.0), cancer summary scale (-5.9), and nausea (-14.7). Overnourished children (BMI or fat mass >2 SDS) reported lower scores on emotional (-8.0) and cognitive functioning (-9.2) and on the cancer summary scale (-6.6), whereas parent-report scores were lower on social functioning (-7.5). Weight loss (>0.5 SDS) was associated with lower scores on physical functioning (-13.9 child-report and -10.7 parent-report), emotional (-7.4) and social functioning (-6.0) (child-report), pain (-11.6), and nausea (-7.8) (parent-report). Parents reported worse social functioning and more pain in children with weight gain (>0.5 SDS) compared with children with stable weight status. CONCLUSIONS: Undernutrition and weight loss were associated with worse physical and social functioning, whereas overnutrition and weight gain affected the emotional and social domains of HRQL. Interventions that improve nutritional status may contribute to enhanced health outcomes in children with cancer.

Weight and height in children newly diagnosed with cancer.

BACKGROUND: Although weight loss and lack of linear growth occur in children with cancer, growth history is not included in research that aims to determine nutritional status in children newly diagnosed with cancer. Therefore, this study aimed to determine weight loss and lack of linear growth in this patient group. PROCEDURE: Weight and height were recorded in 95 children (ages 1.5-10 years) at diagnosis and compared with data predicted from growth curves. Age, gender, type of malignancy, extent of disease, and prior weight and height were tested for their potential relation to differences between actual and predicted data. RESULTS: The incidence of undernutrition, based on z-scores for weight-for-age (WFA), height-for-age (HFA), and weight-for-height (WFH), was 2%, 4%, and 7%, respectively. Actual z-scores were lower than predicted z-scores. Differences between actual and predicted z-scores of <-0.5 standard deviation score (SDS) in WFA, HFA, or WFH were found in 25%, 23%, and 29% of the children, respectively. Children with advanced cancer had the highest risk of significant weight loss (<-0.5 SDS in WFA) (ORWFA = 3.45, P = 0.012) prior to diagnosis. Differences were unrelated to type of malignancy, age, gender, and weight and height prior to diagnosis. CONCLUSIONS: At diagnosis, approximately 25% of the children showed a significant reduction in z-scores for weight-for-age, height-for-age, and weight-for-height. This reduction may indicate a deteriorated nutritional status. Therefore, assessment of growth history should be standard of care to ensure appropriate nutritional interventions and should be included in research that aims to evaluate nutritional status in children newly diagnosed with cancer. Pediatr Blood Cancer 2015;62:269-273. © 2014 Wiley Periodicals, Inc.

Changes in nutritional status in childhood cancer patients: a prospective cohort study.

BACKGROUND & AIMS: Under- and overnutrition are linked to adverse outcomes during and after childhood cancer treatment. Therefore, understanding the timing of weight loss and weight gain and their contributory factors is essential for improving outcomes. We aimed to determine in which period of treatment changes in nutritional status occurred and which factors contributed to these changes. METHODS: A prospective cohort study of 133 newly diagnosed cancer patients with hematological, solid, and brain malignancies was performed. Anthropometric data and related factors were assessed at 0, 3, 6 and 12 months after diagnosis. RESULTS: Despite initial weight loss at the beginning of treatment in patients with hematological and solid malignancies, body mass index (BMI) and fat mass (FM) increased within 3 months with 0.13 SDS (P < 0.001) and 0.05 SDS (P = 0.021) respectively. Increase continued during the following months and resulted in a doubling of the number of overnourished patients. Fat free mass (FFM), which was already low at diagnosis, remained low. During the entire study period about 17% of the patients were undernourished on the basis of low FFM. Tube feeding and diminished activity level were related to increases in BMI and %FM respectively. No relationship was found between energy intake or corticosteroids and increase in BMI or %FM. CONCLUSIONS: BMI and FM increased during and after the period of intensive treatment, while FFM remained low. Improvement of nutritional status might be accomplished by increasing physical activity from the early phase of treatment.

Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis.

OBJECTIVE: This study investigated the course, predictors, and impact of caregiving stress on the functioning of primary caregivers of children with cancer during the first year after a child's cancer diagnosis. METHODS: Primary caregivers (N = 95, 100% mother, 86% response rate) of consecutive newly diagnosed paediatric cancer patients (0-18 years) completed measures of caregiving stress, depressive symptoms, anxiety, and self-reported health at diagnosis, and 3, 6, and 12 months thereafter. RESULTS: Results indicated a significant decrease in caregiving stress (especially during the first 3 months after diagnosis). Caregiving stress was predicted by single marital status and the ill child being the mother's only child. Multilevel analyses, controlled for socio-demographic and medical covariates, showed that, over time, the decline in caregiving stress was accompanied by a reduction in depressive symptoms and anxiety. The amount of variance explained by caregiving stress was 53% for depressive symptoms, 47% for anxiety, and 3% for self-reported health. CONCLUSIONS: The present study suggests that caregiving stress is an important factor in understanding parental adjustment to childhood cancer. This offers possibilities for developing interventions aimed at preventing caregiving stress, and strengthening mothers' confidence in their ability to provide good care.

Finding the right balance: An evaluation of the adequacy of energy and protein intake in childhood cancer patients.

BACKGROUND & AIMS: Despite a widespread belief that adequate dietary intake is needed to maintain weight during childhood cancer treatment, conclusive data about adequacy of intake are lacking. Therefore, we aimed to assess the adequacy of energy and protein intake in a heterogeneous childhood cancer population against 3 different norms. METHODS: We conducted a prospective cohort study of 115 children diagnosed with cancer and assessed dietary intake after diagnosis and at 3, 6, and 12 months. Intake was assessed against recommended daily allowances (RDA), intake in healthy controls, and calculated individual requirements; and subsequently related to changes in nutritional status. RESULTS: Energy intake was lower than RDA and lower than in healthy controls at all measurement points; whereas energy intake matched individual requirements at 2 of the 4 measurement points. Protein intake in childhood cancer patients was lower than in healthy children. However, protein intake was almost twice the RDA and one and a half times the individual requirements. During the study period, weight and fat mass (FM) increased significantly while fat free mass (FFM) remained low. Energy intake was negatively associated with weight and FM, and protein intake was not associated with FFM. CONCLUSIONS: The patients' weight increased; whereas their energy intake was lower than RDA and lower than in healthy controls. This indicates that the average intake was more than adequate. Percentage intake of individual requirements matched with increased weight. Therefore, the use of this norm is preferable to RDA or intake in healthy controls when determining the adequacy of dietary intake in both clinical practice and futures studies.

Exploring the response shift phenomenon in childhood patients with cancer and its effect on health-related quality of life.

PURPOSE/OBJECTIVES: To explore the response shift phenomenon in pediatric patients with cancer and to determine its effects on ratings of health-related quality of life (HRQOL). DESIGN: Retrospective pre- and post-test design. SETTING: Pediatric oncology department in the northern part of the Netherlands. SAMPLE: 37 children newly diagnosed with cancer and 80 parents. METHODS: The then-test method was used to determine response shift. HRQOL was assessed within two weeks postdiagnosis (pretest) and three months later (post-test) using both child and parent reports of PedsQL and Cantril's ladder. The post-test and then-test were administered concurrently. MAIN RESEARCH VARIABLES: Overall and multidimensional HRQOL. FINDINGS: Scores on Cantril's then-test were lower than the pretest in both child and parent reports, indicating response shift in the assessment of overall HRQOL. Children experienced a greater response shift than parents. No differences were found between the PedsQL then- and pretests. CONCLUSIONS: Both child- and parent-report ratings of overall HRQOL were affected by response shift, resulting in an underestimation of the improvement in overall HRQOL between diagnosis and three months postdiagnosis. No response shift was demonstrated in the more specific domains of HRQOL (PedsQL). IMPLICATIONS FOR NURSING: Knowledge of the response shift phenomenon helps nurses to better interpret the outcomes of HRQOL. The use of the PedsQL instrument is recommended in future studies that aim to demonstrate changes in HRQOL.

Dispositional optimism in adolescents with cancer: differential associations of optimism and pessimism with positive and negative aspects of well-being.

OBJECTIVES: Dispositional optimism is often considered to be a unidimensional construct. Recent studies suggest, however, that optimism and pessimism are separate dimensions. In this study we investigated two issues. First, the levels of optimism and pessimism in adolescents with cancer compared with healthy controls and second, the individual effects of optimism and pessimism on concurrent and longitudinal well-being. DESIGN: A matched case-control design was used to examine whether adolescents with cancer and healthy adolescents differed with regard to optimism and pessimism. The second part of the study was employed in a prospective design with assessments in the patient group at 3 and 6 months post-diagnosis. METHODS: Thirty-three adolescents with cancer (3 months post-diagnosis) and 66 matched controls completed a measure on dispositional optimism (i.e., optimism and pessimism). In addition, patients completed measures on positive and negative aspects of well-being at 3 and 6 months post-diagnosis. RESULTS: Although adolescents with cancer were not more optimistic than their healthy peers, they were significantly less pessimistic. Zero order and semi-partial correlations showed that optimism and pessimism are related to different aspects of well-being. Specifically, we found a cohesive pattern in which optimism predicts positive aspects and pessimism negative aspects of well-being. CONCLUSIONS: The high levels of overall optimism often found in patients with cancer might in fact result from low pessimism instead of high optimism. Furthermore, as our study shows that optimism and pessimism are differentially associated with aspects of well-being, it provides strong support for the bidimensionality of dispositional optimism.

Malnutrition in childhood cancer patients: a review on its prevalence and possible causes.

PURPOSE: To perform a systematic literature review for critical evaluation of prevalence and factors contributing to malnutrition in childhood cancer. METHODS: A systematic search resulting in 46 suitable articles. RESULTS: Due to lack of uniform criteria and adequate studies, the prevalence rates of malnutrition can only be estimated. Based on strengths and weaknesses of included references, prevalence rates are estimated to be 0-10% for leukemia, 20-50% for neuroblastoma, and 0-30% for other malignancies. Whether energy deficiency or inflammation contributed to malnutrition could not be confirmed because the occurrence of energy deficit (low energy intake, increased metabolic rate) or inflammation (related to cachexia) was not convincing. Also, a relationship between these factors and malnutrition was not studied. CONCLUSION: Longitudinal studies are needed to determine which children are at risk of malnutrition, and to investigate the impact of energy deficiency and inflammation on the nutritional status and body composition of childhood cancer patients.

A survey of natural protein intake in Dutch phenylketonuria patients: insight into estimation or measurement of dietary intake.

This study investigated which methods patients and parents used to determine phenylalanine (Phe) intake and the relationship between the methods applied, age, and blood Phe concentration, as this practice had not been studied before in relation to metabolic control. A questionnaire was sent to 327 Dutch phenylketonuria patients (age 0-29 years) to investigate the method used to determine Phe intake (either by estimation, exact measurement, or a combination of both). Mean blood Phe concentration of each individual patient was related to the method reported to be used. Three different age groups (<10 years, > or =10-15 years, and > or =16 years) were distinguished. The response rate for the questionnaires was 73%. In these 188 patients, data for both Phe concentrations and questionnaires could be used. Of these, 75 used exact measurement, 75 used estimation, and 38 used both methods. The number of patients that estimated Phe intake clearly increased with age. Whatever method was used, an increase in Phe concentrations was seen with age. During childhood, exact measurement was used more frequently, and from adolescence on estimation was used more frequently. The method (exact measurement and/or estimation) did not result in statistically different Phe concentrations in any of the three age groups, although blood Phe concentration tended to be lower in adolescence using exact measurement. Data suggest that estimation and exact measurement of Phe intake are both reliable methods. Therefore, in addition to exact measurement, patients should be instructed in both methods at an early age, so that both methods can be used adequately.