Guideline for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients: 2023 update.

Objective was to update a clinical practice guideline (CPG) for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients. We reconvened a multi-disciplinary and multi-national panel. While the previous 2018 CPG evaluated adult and pediatric randomized controlled trials (RCTs) to manage fatigue, this 2023 update revised previous recommendations based only on pediatric RCTs. Twenty RCTs were included in the updated systematic review. Physical activity significantly reduced fatigue (standardized mean difference -0.44, 95% confidence interval -0.64 to -0.24; n = 8 RCTs). Using the 2018 recommendations as a basis, the panel continued to make strong recommendations to use physical activity, and to offer relaxation, mindfulness or both, to manage fatigue in pediatric patients. Cognitive or cognitive behavioral therapies may be offered. Pharmacological approaches should not be routinely used. The panel made a new good practice statement to routinely assess for fatigue, ideally using a validated scale.

Executive functions and social skills in pediatric brain tumor survivors.

Pediatric brain tumor survivors (PBTSs) may experience impairment in executive functions and social competence, but their interrelation is not well understood. This study aimed to address the specificity of this relationship. PBTSs (n = 91) were on average 11.21 years old, 5 years from diagnosis, and 48.4% female. One parent and PBTS completed the Social Skills Rating System (subscales: Cooperation, Assertiveness, Empathy, Self-Control, and Total), and parents also completed the Behavior Rating Inventory of Executive Function (General Executive Composite [GEC], Metacognition [MI], and Behavioral Regulation [BRI] indices) and the (Withdrawal scale). Based on proxy reports, more PBTSs had deficits in Cooperation, Assertiveness and Responsibility skills relative to normative data. MI was more consistently associated with parent reported social skills deficits than BRI. PBTSs reported fewer deficits in social skills relative to normative data across all scales; none of the correlations between PBTSs reported social skills and executive functions were significant. Time since diagnosis and proxy reported lower total social skills predicted greater withdrawal. These findings highlight the importance of assessing differential perspectives of PBTSs social competence, and that metacognitive strategies may bear particular importance for the social skills of PBTSs.

Are we friends? Best friend nominations in pediatric brain tumor survivors and associated factors.

BACKGROUND: Pediatric brain tumor survivors (PBTSs) are at risk of impairments in social competence. Limited information is available regarding nominations and reciprocated nominations of PBTSs as best friends and factors which may predict these. PROCEDURE: Caregivers of children (n = 32) aged 8-16 (38% low-grade glioma, 34% medulloblastoma, 28% other) completed ratings of child adjustment at baseline (T1) and PBTSs and classmates completed the Three Best Friends measure approximately 12 months later (T2). Sociometric data yielded ratings of best friend nominations and reciprocated best friend nominations. RESULTS: Nominations of PBTSs as best friends were not significantly different than controls, but PBTSs had fewer reciprocated best friend nominations than controls. Approximately half of PBTSs in this study did not have any reciprocated best friend nominations and 25% were not nominated by any peer as a best friend. Greater symptoms of depression and lower social skills in PBTSs were associated with fewer nominations as a best friend by peers and a greater likelihood of no reciprocal best friend nominations. Greater difficulties in emotional control were associated with fewer nominations as a best friend by peers. CONCLUSIONS: The discrepancy between reciprocated best friend nominations and best friend nominations highlights a need to attend to reciprocal friendships in PBTSs and further understand social information processes in this population. Longitudinal analyses illustrate the impact of emotional adjustment on PBTS friendships.

Predicting social withdrawal, anxiety and depression symptoms in pediatric brain tumor survivors.

OBJECTIVE: Pediatric brain tumor survivors (PBTSs) are at risk for impairments in social adjustment and psychological distress. This study investigated longitudinal associations between symptoms of social withdrawal and anxiety/depression in PBTS, as well as medical, demographic, and personal characteristics that may also influence reports of social withdrawal and anxiety/depression. METHOD: About 91 PBTS (51% male, mean age 11.21 years, off-treatment) participated. At baseline and 8 months follow-up, primary caregivers of PBTS completed measures of social withdrawal, anxiety, and depression symptoms. Medical information (e.g. tumor type and location, cranial irradiation therapy) and child personal characteristics (e.g. child's age and gender, executive function, social skills) were obtained at baseline. RESULTS: Baseline reports of depression symptoms and social skills predicted social withdrawal 8 months later. Social withdrawal at baseline predicted greater combined anxiety and depression symptoms 8 months later. Depression alone predicted greater anxiety symptoms at follow-up. Anxiety symptoms and poor global executive functioning predicted greater depression symptoms at follow-up. CONCLUSIONS: The social adjustment and psychological distress of PBTSs are interrelated and can influence each other across time. These findings support the importance of multifaceted interventions targeting both psychological distress and social adjustment, in order to support the optimal psychosocial adjustment of PBTSs.

Management of fatigue in children and adolescents with cancer and in paediatric recipients of haemopoietic stem-cell transplants: a clinical practice guideline.

Fatigue is a prevalent and distressing symptom in children and adolescents with cancer and in those who have undergone haemopoietic stem-cell transplantation. A multidisciplinary and multinational group of experts in paediatric oncology and fatigue, together with patient advocates, developed a clinical practice guideline for management of fatigue on the basis of systematic reviews that included six paediatric and 456 adult randomised studies. We used the Grading of Recommendations Assessment, Development and Evaluation approach to generate recommendations, and made strong recommendations, supported by evidence of moderate quality, for use of physical activity, relaxation, and mindfulness to reduce fatigue. When these approaches are unsuccessful or not feasible, cognitive or cognitive behavioural therapies may be offered (weak recommendation supported by evidence of moderate quality). Maturity and cognitive ability of individual patients will affect the feasibility of interventions. Systemic pharmacological approaches should not be routinely used to manage fatigue in children. Apart from identification of optimal approaches to implement recommended interventions in clinical practice, future research should also address knowledge gaps, including establishment of minimum age thresholds for interventions and inclusion of paediatric patients in randomised trials of fatigue management.

Physical activity reduces fatigue in patients with cancer and hematopoietic stem cell transplant recipients: A systematic review and meta-analysis of randomized trials.

PURPOSE: Objective was to determine whether physical activity reduces the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients. METHODS: We conducted a meta-analysis of randomized trials comparing physical activity with control interventions for the management of fatigue in patients with cancer or HSCT recipients. RESULTS: There were 170 trials included. Physical activity reduced the severity of fatigue when compared to all control groups (standardized mean difference -0.49, 95% confidence interval -0.60 to -0.37; P < 0.00001). Aerobic, neuromotor, resistance and combination exercises were all effective in reducing fatigue although smaller effects were observed with resistance exercises (P interaction = 0.01). Other intervention and patient characteristics did not influence the effect of physical activity on the severity of fatigue. CONCLUSIONS: Physical activity was effective at reducing fatigue in patients with cancer and HSCT recipients across patient sub-groups. Determining the best approaches for safe implementation should be a priority.

A randomized control intervention trial to improve social skills and quality of life in pediatric brain tumor survivors.

BACKGROUND: To determine if a group social skills intervention program improves social competence and quality of life (QOL) in pediatric brain tumor survivors (PBTS). METHODS: We conducted a randomized control trial in which PBTS (8-16 years old, off therapy for over 3 months) were allocated to receive social skills training (eg, cooperation, assertion, using social cognitive problem solving strategies, role playing, games, and arts and crafts) in 8 weekly 2-hour sessions, or an attention placebo control (games and arts and crafts only). Outcomes were self-reported, proxy-reported (caregiver), and teacher-reported using the Social Skills Rating System (SSRS), to measure social competence, and the Pediatric Quality of Life (PedsQL4.0, generic) to measure QOL at baseline, after intervention, and at 6 months follow-up. At baseline, SSRS were stratified into low and high scores and included as a covariate in the analysis. RESULTS: Compared to controls (n = 48), PBTS in the intervention group (n = 43) reported significantly better total and empathy SSRS scores, with improvements persisting at follow-up. The PBTS in the intervention group who had low scores at baseline reported the greatest improvements. Proxy and teacher reports showed no intervention effect. CONCLUSIONS: Participating in group social skills intervention can improve self-reported social competence that persisted to follow up. The PBTS should be given the opportunity to participate in social skills groups to improve social competence.

Mind and body practices for fatigue reduction in patients with cancer and hematopoietic stem cell transplant recipients: A systematic review and meta-analysis.

PURPOSE: To determine whether non-physical activity mind and body practices reduce the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients compared to control interventions. METHODS: We included randomized trials which compared non-physical activity mind and body practices compared with control interventions for the management of fatigue in cancer and HSCT patients. RESULTS: Among 55 trials (4975 patients), interventions were acupuncture or acupressure (n=12), mindfulness (n=11), relaxation techniques (n=10), massage (n=6), energy therapy (n=5), energizing yogic breathing (n=3) and others (n=8). When combined, all interventions significantly reduced fatigue severity compared to all controls (standardized mean difference -0.51, 95% confidence interval -0.73 to -0.29). More specifically, mindfulness and relaxation significantly reduced fatigue severity. CONCLUSIONS: Mindfulness and relaxation were effective at reducing fatigue severity in patients with cancer and HSCT recipients. Future studies should evaluate how to translate these findings into clinical practice across different patient groups.

Determinants of social competence in pediatric brain tumor survivors who participated in an intervention study.

PURPOSE: This prospective study describes disease/treatment, personal characteristics, and social/family contextual variables as risk and resilience factors that predict social competence in pediatric brain tumor survivors (PBTS). METHODS: Ninety-one PBTS (51% male, mean age 11.21 years, off-treatment, attending a regular classroom >50% of the time) participated. PBTS and their primary caregivers (proxy) completed the Social Skills Rating System (SSRS) to assess social competence at baseline, 2, and 8 months follow-up. At baseline, medical information (e.g., tumor type and location, cranial irradiation therapy (CIT)), personal characteristics (e.g., child's age and gender, intelligence, executive function, attention, and memory), and social/family factors (family income and ethnicity) were obtained. RESULTS: Using mixed model multivariable analyses with a longitudinal component, tumor type (medulloblastoma) (p < 0.01) and poor executive function, specifically, emotional control, were the best predictors of low total and assertion self-reported SSRS scores (p < 0.02). Receiving CIT was associated with low proxy-reported assertion (p = 0.035), and cooperation score (p = 0.02). Poor emotional control was associated with low proxy-reported total (p = 0.032), assertion (p = 0.023), and self-control scores (p = 0.007). Being non-White was associated with low proxy-reported total (p = 0.016), self-control (p = 0.040), responsibility (p = 0.035), and cooperation scores (p = 0.002). There were no significant changes over time. CONCLUSIONS: This study supports a multifactorial model of insult and non-insult factors (medical, personal, and social context) as determinants of social competence in PBTS. Data from both informants identify determinants of social competence. These factors need to be considered in future interventions to help children better improve their social competence.

Determinants of quality of life outcomes for survivors of pediatric brain tumors.

INTRODUCTION: To describe the quality of life (QOL) of pediatric brain tumor survivors (PBTSs) prospectively and to identify potential medical, personal and family contextual factors associated with QOL. METHODS: Ninety-one PBTSs (8-16 years) who were off treatment and attending a regular classroom participated. Self- and caregiver-proxy-reported on QOL at baseline, 2 and 8 months. At baseline, cognitive, executive function, attention and memory, medical and demographics information were attained. RESULTS: Significant improvements over time in PBTS's emotional QOL were self- and proxy-reported (P < 0.01) and global QOL proxy-reported (P = 0.04). Receiving cranial irradiation therapy (CIT) and poor behavioral regulation predicted poor global QOL scores reported by both informants (P < 0.017). Poor behavioral regulation also predicted poor self-reported school functioning, and poor proxy-reported emotional and social QOL (P < 0.037). Boys reported better emotional QOL (P = 0.029), and PBTSs over 11 years old were reported to have better emotion and school-related QOL. Finally, being non-White and having low income predicted poor self-reported global and emotional QOL (P = 0.041). CONCLUSIONS: Receiving CIT, having poor behavioral regulation, being a female, under 11 years old and coming from low-income, non-White families place PBTSs at risk for poor QOL.

Healthcare Professionals' Knowledge of Family Psychosocial Problems in Pediatric Cancer: A Pilot Study.

BACKGROUND: Best practice guidelines for the treatment of cancer now advocate for a child- and family-centered model of care and a psychosocial model of risk prevention. However, healthcare professionals (HCPs) report a number of barriers preventing the implementation of psychosocial care, including an absence of tools to help identify psychosocial problems within the family. OBJECTIVES: The aims of this study are to (1) explore the psychometric properties of the Psychosocial Care Checklist (PCCL) and (2) test if the PCCL can differentiate the degree to which HCPs are aware of psychosocial problems within the family (patient, siblings, parents) of a child with cancer. METHODS: Thirty-seven HCPs caring for a child with cancer completed the PCCL at time 1 (2-4 weeks after diagnosis) and 29 HCPs completed the PCCL at time 2 (2-3 weeks after). RESULTS: The PCCL had strong test-retest reliability for all domains (α > .60) and strong internal consistency for the total PCCL (α = .91). Interrater reliability was moderate for the oncologist-nurse dyad with regard to sibling knowledge (r = 0.56) and total psychosocial knowledge (r = 0.65). Social workers were significantly more knowledgeable than both nurses and oncologists about total family problems (P = .01) and sibling problems (P = .03). CONCLUSIONS: Preliminary findings suggest that the PCCL has adequate test-retest reliability and validity and is useful in differentiating the degree to which HCPs are aware of psychosocial problems within the family, with social workers being the most knowledgeable. IMPLICATIONS FOR PRACTICE: Using the PCCL may help HCPs to identify psychosocial problems within the family and appropriately allocate psychosocial resources.

Psychological Functioning, Post-Traumatic Growth, and Coping in Parents and Siblings of Adolescent Cancer Survivors.

PURPOSE/OBJECTIVES: To examine psychological functioning, post-traumatic growth (PTG), coping, and cancer-related characteristics of adolescent cancer survivors' parents and siblings.
. DESIGN: Descriptive, correlational.
. SETTING: Children's Hospital of Western Ontario in London, Ontario, Canada.
. SAMPLE: Adolescents who finished cancer treatment 2-10 years prior (n = 31), as well as their parents (n = 30) and siblings (n = 18). 
. METHODS: Participants completed self-report measures of psychological distress, PTG, life satisfaction, coping, and cancer-related characteristics.
. MAIN RESEARCH VARIABLES: Psychological functioning, PTG, and coping.
. FINDINGS: Parents' and siblings' PTG levels were similar to survivors' PTG levels; however, parents reported higher PTG than siblings. Parents who used less avoidant coping, were younger, and had higher life satisfaction experienced less psychological distress. Parents whose survivor children used more active coping reported less psychological distress. Siblings who were older used more active coping, and the longer it had been since their brother or sister was diagnosed, the less avoidant coping they used. 
. CONCLUSIONS: Childhood and adolescent cancer affects survivors' siblings and parents in unique ways.
. IMPLICATIONS FOR NURSING: Relationship to the survivor, use of coping strategies, life satisfaction, and time since diagnosis affect family members' postcancer experiences.

Healthcare Providers' Perceptions of the Utility of Psychosocial Screening Tools in Childhood Cancer: A Pilot Study.

PURPOSE/OBJECTIVES: To examine the perceptions of healthcare providers (HCPs) regarding the utility of two psychosocial screening tools designed for pediatric oncology, the Psychosocial Assessment Tool-Revised (PATrev) and the Psychosocial Care Checklist (PCCL). DESIGN: Repeated measures comparative study. SETTING: Four pediatric health centers in Ontario, Canada. SAMPLE: 15 oncologists, 14 nurses, and 8 social workers. METHODS: Using a visual analog scale (VAS), participants were asked to rate how useful they found (a) the psychosocial summary derived from the parent-completed PATrev, used to assess family psychosocial risk, and (b) the HCP-completed PCCL, used to identify family psychosocial needs. Measures were completed soon after diagnosis and six months later. Mann-Whitney U tests were used for analyses. MAIN RESEARCH VARIABLE: VAS scores. FINDINGS: Pediatric oncology HCPs differ in their acceptance of the psychosocial screening tools tested. The highest utility ratings for both instruments were from nurses, and the lowest utility ratings were from social workers; moderate ratings were obtained from oncologists. CONCLUSIONS: Psychosocial screening tools can identify the psychosocial needs of children with cancer and their families throughout the cancer trajectory. Consequently, these tools could foster communication among colleagues (medical and nonmedical) who are caring for children with cancer about the psychosocial needs of this population and the allocation of resources to address those needs. IMPLICATIONS FOR NURSING: Nurses seem to value these tools more than other HCPs, which may have positive implications for their clinical practice.

Development of the Pediatric Advanced Care Quality of Life Scale (PAC-QoL): evaluating comprehension of items and response options.

BACKGROUND: Validated tools that measure quality of life (QOL) for children with poor prognosis malignancies are not available. We are developing a novel instrument, The Pediatric Advanced Care-Quality of Life Scale (PAC-QoL), in order to address this gap. Instrument development requires a phase of item reduction and assessment of item comprehension in the target population. This manuscript provides a report on this phase in the development of the PAC-QoL. PROCEDURE: Children with poor prognosis cancer and/or their parents were invited to participate in cognitive probing interviews. Participants' understanding of each item was rated from 0 (did not understand) to 4 (completely understood). To evaluate the response scale, an overall percentage of respondents' ability to accurately distinguish between the four response options was calculated. RESULTS: Four age- and reporter-specific versions of the PAC-QoL were tested with 74 participants. Mean (±SD) comprehension scores across versions ranged from 3.40 ± .0.30 (child self-report) to 3.69 ± 0.23 (parent of toddler report). The number of items deleted or modified to improve understandability ranged from 46% of all items on the parent-of-child report to 56% for the child and adolescent self-reports. Respondent's abilities to accurately distinguish between response-scale options ranged from 84% (child-report) to 98% (parent-toddler report). CONCLUSIONS: We demonstrate a high degree item understandability and response-scale separation in the current version of the PAC-QoL. The scale is ready for psychometric evaluation in its target population.

Development of a quality of life instrument for children with advanced cancer: the pediatric advanced care quality of life scale (PAC-QoL).

BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation.

Psychological experiences of children with brain tumors at end of life: parental perspectives.

OBJECTIVE: To explore the psychological experiences of children with brain tumors at the end of life. DESIGN: This is a qualitative, retrospective study from a Canadian tertiary level pediatric institution. A subset of parent-report data obtained from three semistructured focus group interviews was used to explore children's experiences during their last month of life. PARTICIPANTS: Twenty-four parents of children diagnosed at less than 18 years of age with a brain tumor, and who died between 2 and 12 years prior, were approached for this study. RESULTS: Three main domains were identified that describe parents' perceptions of their child's psychological experiences: (1) intrapsychic changes--those processes within oneself, and encompassing internal aspects of a person such as cognitive and emotional variables; (2) interpersonal interactions--those interactions between oneself and others, including being treated like their same aged healthy peers and maintaining relationships with others; and (3) posttraumatic growth--those positive personal changes that can occur as the result of a significant struggle or hardship. DISCUSSION: Children who die from brain tumors experience a distinct set of progressive neurologic deteriorations that invariably impact psychological status both positively and negatively. Informed treatments that build on positive growth and minimize negative symptoms are required in order to reduce the suffering incurred to the child and family and to optimize quality of life.

Posttraumatic growth, coping strategies, and psychological distress in adolescent survivors of cancer.

Only recently have researchers begun to empirically examine positive outcomes such as posttraumatic growth in adolescent cancer. This article examines associations between posttraumatic growth, coping strategies, and psychological distress in adolescent cancer survivors. Adolescents who finished cancer treatment 2 to 10 years prior (N = 31) completed self-report measures of posttraumatic growth, coping, symptomatology, and disease-related characteristics. Younger age at diagnosis and less use of avoidant coping strategies predicted lower levels of psychological distress. Adolescents' beliefs that they were more likely to relapse and the use of more acceptance coping strategies predicted higher levels of posttraumatic growth. Adolescent cancer survivors may be capable of experiencing posttraumatic growth. Those who believe they are more prone to relapse and use more acceptance coping strategies are likely to have higher levels of posttraumatic growth. As health care professionals encourage adolescent cancer survivors to use fewer avoidant coping strategies, they can also encourage survivors to use more acceptance coping strategies.

Palliative care of children with brain tumors: a parental perspective.

OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.