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Background Compassion has received significant scholarly attention over the past decade. Research has been largely theoretical, with interventions focused on self-care practices of healthcare providers (HCPs), rather than implementation at a systems level. This study aimed to identify how compassion can be operationalized within pediatric healthcare. Design and methods Data was analyzed from a secondary dataset of a larger Straussian grounded theory study of perspectives and experiences of compassion in pediatric healthcare. Patients (n = 33); parents (n = 16); and HCPs (n = 17) were asked specifically how compassion could be implemented within the clinical culture and healthcare system. Results 66 participants generated an operational model of compassion indicating how compassion could be implemented across the organization and larger healthcare system. The data revealed four themes and associated subthemes: teach and train; recognize and reward; measure and report; and embed compassion across the healthcare system. Conclusions Improving compassion in pediatric healthcare needs to extend beyond the efforts of individual HCPs. Compassion is the responsibility of the entire healthcare system and needs to traverse the patient and family experience. In addition to embedding compassion in policy, procedures, practice, and education, compassion should be considered a performance indicator that is measured and reported. Practice implications This study provides a preliminary framework for organizational leaders to operationalize compassion across the services, structures, polices, procedures and practices of pediatric healthcare. This includes ongoing compassion training across the organization; assessing compassion, recognizing compassion as a performance indicator, and ensuring that the infrastructure and ancillary services of the organization reflect compassion.

BACKGROUND There are over 500,000 survivors of childhood cancer in North America alone. One in four survivors experiences chronic pain after treatment has completed. Youth with chronic pain report increased anxiety, depression, activity limitations, and sleep disturbances. An 8-week web-based cognitive-behavioral treatment for chronic pain (WebMAP) has demonstrated reduction in pain in youth but has not yet been explored in survivors. OBJECTIVE The objectives of the current study are to (1) test the feasibility and acceptability of WebMAP for a sample of surviors with chronic pain and their parents, (2) assess the acceptability of WebMAP using qualitative interviews, (3) assess WebMAP’s effect on activity limitations, pain intensity, depression and anxiety symptoms, and sleep disturbances, and (4) assess WebMAP’s effect on parent pain catastrophizing and parental response to their child’s pain. METHODS A single-arm mixed-methods pre-post intervention study design will be utilized. Participants will be 34 surviors and at least one of their parents/caregivers. Inclusion criteria are (1) cancer history (2) current age 10-17 years, (3) >2 years post-treatment or >5 years post-diagnosis, (4) pain present over prior 3 months impairing >1 area of daily life and occurring >1/month, (5) computer access with broadband internet. Survivors will complete a pre-treatment questionnaire, which will include: Child Activity Limitations Interview,the pain intensity Numerical Rating Scale, PROMIS –Pain Interference, Anxiety, Depression, Insomnia Severity Index, and Adolescent Sleep Wake Scale. Parents will complete the Pain Catastrophizing Scale – Parent Version and theAdult Responses to Child Symptoms. Upon completion of pre-treatment questionnaires (T0), survivors will begin WebMAP. After the 8 week intervention, survivors will complete the same measures (T1), and at 3 month follow-up (T2). Post-treatment interviews will be conducted to determine acceptability. Feasibility will be assessed via recruitment and retention rates. Treatment engagement will be measured by number of modules completed. Pre-post outcome data will be assessed using Linear Mixed Models. Qualitative data will be analyzed using thematic analysis. Patient partners will be involved in study design, recruitment, interpretation of results, and knowledge translation. RESULTS The current study has been funded in January 2022. Data collection started in June 2022 and is projected to end in August 2023. We have enrolled five participants as of December 2022. CONCLUSIONS Investigating whether WebMAP is useful to survivors will be an important step in improving pain management in this population. CLINICALTRIAL Trial registered at ClinicalTrials.gov: NCT05241717

Purpose: Adolescents and young adults (AYA) experience challenges both during and after their cancer treatment. Health behaviors are important contributors to health, yet little research examines h...

IntroductionPaediatric cancer affects children and families from diverse backgrounds. However, there is a limited understanding of how diversity/cultural factors play a role, especially in survivorship. This protocol outlines a systematic review on the cultural influences in survivors of childhood cancer.Methods and analysisThis protocol is reported based on the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA) guidelines checklist and is registered with PROSPERO. EMBASE, MEDLINE and PsycINFO are searched. Eligibility criteria include original research studies published in English, and an assessment of culture on survivors of childhood cancer. Search terms are developed with a medical librarian. Primary objective will be to describe culture (ethnic and population groups, migration status, acculturation, cultural characteristics) in survivors of paediatric cancer and study characteristics and methods. Secondary objective will be to identify the role of culture in outcomes of survivors of paediatric cancer. Data extraction will include participant characteristics such as the number of participants and/or controls, sex, age at diagnosis. Extraction will also include analytical approaches, type of cultural variables (predictor, moderator, mediator, outcome) and effect measures.Ethics and disseminationEthical approval was not required for this systematic review. Results from this systematic review will be disseminated in line with PRISMA guidelines through peer-reviewed publications and conference presentations. Findings will also be shared with our target communities, including survivors of childhood cancer and their families, through the creation of lay summaries and/or educational workshops in the community. Knowledge gathered from this review may help to identify gaps in knowledge and directions for future research. They may also inform the development of clinical recommendations for healthcare providers of survivors of childhood cancer.PROSPERO registration numberCRD42021234101.

Many long-term survivors of childhood cancer (LTSCC), individuals at least 5 years post-diagnosis or 2 years post-treatment, experience late- and long-term effects from their treatments, including pain. Yet, pain is poorly understood among LTSCC. The current study aimed to (1a) describe rates and multiple dimensions of pain; (1b) identify patterns of chronic pain; and (2) test correlates of chronic pain in LTSCC. Survivors (n = 140; 48.6% male, Mage = 17.3 years (range = 8–25)) were recruited from across Canada. Between 2017 and 2019, participants completed the Pain Questionnaire, Pain Catastrophizing Scale, Pediatric Quality of Life Inventory, Patient-Reported Outcome Measurement Information System (PROMIS)–Pain Interference, Anxiety, and Depression scales, Child Posttraumatic Stress Scale, the Posttraumatic Stress Disorder Checklist for the DSM-V, and the Cancer Worry Scale. Twenty-six percent of LTSCC reported experiencing chronic pain. Exploratory cluster analysis showed 20% of survivors had moderate to severe chronic pain based on measures of pain intensity and interference. The combination of higher posttraumatic stress symptoms, older current age, more pain catastrophizing, and sex (being female) significantly predicted the presence of chronic pain in logistic regression, χ2 (4, N = 107) = 28.10, p < .001. Higher pain catastrophizing (OR = 1.09; 95% CI = 1.02–1.16), older current age (OR = 1.20; 95% CI = 1.07–1.34), and higher posttraumatic stress (OR = 1.92; 95% CI = 1.01–3.63) were significant predictors of chronic pain. LTSCC should be screened for the presence and magnitude of chronic pain during long-term follow-up visits so appropriate interventions can be offered and implemented. Future research should investigate pain interventions tailored for this population. Findings support regular screening for the presence and magnitude of chronic pain in survivors of childhood cancer in long-term follow-up care.

Yoga may offer benefits for children and adolescents affected by cancer or blood disease, yet there are challenges in translating evidence to practice. Yoga instructors are critical for the delivery of yoga. Understanding yoga instructors’ experiences offering yoga to children and adolescents affected by cancer or blood disease could provide information to guide required competencies and training, as well as elucidate factors to consider in future research and programs. Therefore, the present study sought to understand yoga instructors’ lived experiences preparing for and facilitating yoga for children and adolescents affected by cancer or blood disease. Fourteen yoga instructors with experience facilitating yoga for this population participated in semi-structured interviews, which were transcribed verbatim and analyzed using principles of interpretive description and thematic analysis. Five unique themes were identified: (1) “I believe in and see the perceived benefits of yoga on and off the mat”; (2) “I feel equipped to deliver yoga but desire further training”; (3) “what I need to deliver a safe yoga program”; (4) “I must be adaptable to successfully facilitate a yoga program”; and (5) “what I need to ensure yoga is widely available.” Findings highlight the varied and comprehensive training opportunities yoga instructors sought, while elucidating their training limitations. Yoga instructors shared their perspectives on concerted attention to safety, effectiveness, and access when developing research and programs. This study represents a first step toward defining required competencies for delivering yoga to this population and lays the foundation for future research and programs.

Risk prediction models are important to identify survivors of childhood cancer who are at risk of experiencing poor health-related quality of life (HRQOL) as they age.To develop and validate prediction models for a decline in HRQOL among adult survivors of childhood cancer.This prognostic study included 4755 adults from the Childhood Cancer Survivor Study (CCSS) diagnosed between January 5, 1970, and December 31, 1986, who completed baseline (time 0 [November 3, 1992, to August 28, 2003]) and 2 follow-up (time 1 [February 12, 2002, to May 21, 2005] and time 2 [January 6, 2014, to November 30, 2016]) surveys. Data were analyzed from June 19, 2019, to February 2, 2022.Sociodemographic, lifestyle, and emotional factors, and chronic health conditions (CHCs) were assessed at time 0 and time 1, and neurocognitive factors were assessed at time 1 to predict HRQOL at time 2 and a decline in HRQOL between time 1 and time 2. Impaired health states were defined as CHC grades 2 to 4 using the modified Common Terminology Criteria for Adverse Events, version 4.03, and mental and neurocognitive status as 1 SD or more below reference levels.Health-related quality of life was operationalized using the Medical Outcomes Study 36-Item Short Form Health Survey Physical (PCS) and Mental (MCS) Component Summary and classified by optimal (≥40) or suboptimal (40) at each point (main outcome). A decline in HRQOL was defined as a change from optimal to suboptimal between time 1 and time 2. Multivariable logistic regression identified factors associated with HRQOL decline. The cohort was randomly split into training (80%) and test (20%) data sets for model development and validation; the area under the receiver operating characteristic curve was used to evaluate prediction performance.A total of 4755 adults (mean [SD] age at time 0, 24.3 [7.6] years; 2623 [55.2%] women) were included in the analysis. Between time 1 and time 2, 285 of 3294 survivors (8.7%) had declining PCS and 278 of 3294 (8.4%) had declining MCS. Risk factors associated with PCS decline included female sex (odds ratio [OR], 1.67 [95% CI, 1.25-2.24]), family income less than $20 000 vs $80 000 or more (OR, 2.00 [95% CI, 1.21-3.30]), presence of CHCs (OR for neurological, 2.16 [95% CI, 1.51-3.10]; OR for endocrine, 2.25 [95% CI, 1.44-3.52]; OR for gastrointestinal tract, 1.89 [95% CI, 1.32-2.69]; OR for respiratory, 1.66 [95% CI, 1.06-2.59]; OR for cardiovascular, 1.53 [95% CI, 1.14-2.06]), and depression (OR, 1.79 [95% CI, 1.20-2.67]). Risk factors associated with MCS decline included unemployment vs full-time employment (OR, 1.68; [95% CI, 1.19-2.38]), current vs never cigarette smoking (OR, 2.03 [95% CI, 1.37-3.00]), depression (OR, 4.29 [95% CI, 2.44-7.55]), somatization (OR, 1.63 [95% CI, 1.05-2.53]), impaired task efficiency (OR, 1.90 [95% CI, 1.34-2.68]), and impaired organization (OR, 1.67 [95% CI, 1.12-2.48]). The areas under the receiver operating characteristic curve for the test models were 0.74 (95% CI, 0.67-0.81) for declining PCS and 0.68 (95% CI, 0.60-0.75) for declining MCS.In this prognostic study of adult survivors of childhood cancer who experienced declining HRQOL, CHCs were associated with a decline in physical HRQOL, whereas current smoking and emotional and neurocognitive impairment were associated with a decline in mental HRQOL. These findings suggest that interventions targeting modifiable risk factors are needed to prevent poor HRQOL in this population.

Despite advances in the treatment of sickle cell disease (SCD), cerebrovascular and cognitive insults can have lifelong consequences. Hematopoietic cell transplantation (HCT) is an established curative therapy, and recent studies have demonstrated efficacy with reduced toxicity nonmyeloablative (NMA) regimens, but little is known about neuropsychological outcomes. The objective of this study was to describe neuropsychological, behavioral, and quality-of-life outcomes with medical correlates in children with SCD who received an NMA matched sibling donor (MSD) HCT.Retrospective cohort analysis of nine recipients with hemoglobin SS SCD who underwent MSD HCT using the National Institutes of Health (NIH) NMA protocol.Mean full-scale intellectual functioning (FSIQ) was average pre-HCT (FSIQ = 92.1, SD 9.0; n = 8) and 2 years post-HCT (mean FSIQ = 96.6; SD 11.1; N = 9). Neuropsychological functioning was largely average across all cognitive domains, and no pre/post-HCT differences were found to be statistically significant given the small sample size. However, effect sizes revealed moderate improvements in processing speed (Cohen's d = .72) and verbal memory (Cohen's d = .60) post-HCT, and declines in measures of attention (Cohen's d = -.54) and fine motor speed and dexterity (Cohen's d = -.94). Parents endorsed better quality of life (Cohen's d = .91), less impact of SCD on their family, and less worry about their child's future (Cohen's d = 1.44).Neuropsychological functioning in a sample of children and adolescents treated uniformly with NMA MSD HCT remained stable or improved in most cognitive domains, and improvements in quality of life and family functioning were observed.

Objective Compassion has long been considered a cornerstone of quality pediatric healthcare by patients, parents, healthcare providers and systems leaders. However, little dedicated research on the nature, components and delivery of compassion in pediatric settings has been conducted. This study aimed to define and develop a patient, parent, and healthcare provider informed empirical model of compassion in pediatric oncology in order to begin to delineate the key qualities, skills and behaviors of compassion within pediatric healthcare. Methods Data was collected via semi‐structured interviews with pediatric oncology patients (n = 33), parents (n = 16) and healthcare providers (n = 17) from 4 Canadian academic medical centers and was analyzed in accordance with Straussian Grounded Theory. Results Four domains and 13 related themes were identified, generating the Pediatric Compassion Model, that depicts the dimensions of compassion and their relationship to one another. A collective definition of compassion was generated–a beneficent response that seeks to address the suffering and needs of a person and their family through relational understanding, shared humanity, and action. Conclusions A patient, parent, and healthcare provider informed empirical pediatric model of compassion was generated from this study providing insight into compassion from both those who experience it and those who express it. Future research on compassion in pediatric oncology and healthcare should focus on barriers and facilitators of compassion, measure development, and intervention research aimed at equipping healthcare providers and system leaders with tools and training aimed at improving it.

Survivors of childhood cancer (SCCs) are at increased risk of late effects, which are cancer- and treatment-related side-effects that are experienced months to years post-treatment and encapsulate a range of physical, cognitive and emotional problems including secondary malignancies. Perceived health can serve as an indicator of overall health. This study aims to (1) understand how a patient reported outcome (PRO) of perceived health of SCCs compares to controls who have not had a cancer diagnosis and (2) examine the relationships between perceived health and demographic and clinical variables, and health behavior. A total of 209 SCCs (n = 113 (54.10%) males, median age at diagnosis = 6.50 years, median time off treatment = 11.10 years, mean age at study = 19.00 years) were included. SCCs completed annual assessments as part of Long-Term Survivor Clinic appointments, including a question on perceived health answered on a five-point Likert scale. Data were collected retrospectively from medical charts. Perceived health of SCCs was compared to a control group (n = 836) using data from the 2014 Canadian Community Health Survey. Most SCCs (67%) reported excellent or very good health. The mean perceived health of SCCs (2.15 ± 0.91) was not statistically different from population controls (2.10 ± 0.87). Pain (B = 0.35, p &lt, 0.001), physical activity (B = −0.39, p = 0.013) and concerns related to health resources (B = 0.59, p = 0.002) were significant predictors of perceived health. Factors shown to influence SCCs’ perceived health may inform interventions. Exploration into how SCCs develop their conception of health may be warranted.

Pain in children living with and beyond cancer is understudied and undertreated. Pain science education (PSE) is a conceptual change strategy facilitating patients’ understanding of the biopsychosocial aspects of pain. Preliminary studies on the adaptation of PSE interventions to adults with and beyond cancer provide a foundation for pediatric research. PSE could help childhood cancer survivors experiencing persistent pain and pain-related worry after active treatment. PSE may also help children receiving cancer treatment, providing them with a foundation of adaptive pain beliefs and cognitions, and preparing them for procedural and treatment-related pain. We direct this paper towards pediatric oncology clinicians, policy makers and researchers working with children living with and beyond cancer. We aim to; (1) identify challenges in adapting PSE for children living with and beyond cancer, (2) offer possible solutions, and (3) propose research questions to guide the implementation of PSE for children living with and beyond cancer.

BACKGROUND The quality of life (QoL) among survivors of adolescent and young adult (AYA) cancer may be compromised compared with that in the general population. In this study, the authors: 1) assessed for differences in QoL among a national study of AYA cancer survivors compared with the Canadian population and 2) explored the factors associated with poorer QoL in AYA cancer survivors. METHODS For the current research, data from the Young Adults With Cancer in Their Prime study were used. QoL was measured using physical and mental component scores from a 12-item short-form health status measure. A comparison group was derived from the Canadian Community Health Survey. RESULTS AYAs (n = 195; 17.8% male; mean ± SD: 35.62 ± 6.89 years on study, 6.48 ± 5.73 years from treatment) were compared with a comparison sample (n = 665; 21.2% male). Among survivors, 31.8% reported poor physical health, and 49.7% reported poor mental health. Compared with the general population, AYAs had significantly lower physical health (F[1,818] = 52.80; P = .00) and mental health (F[1,818] = 83.54; P = .00), controlling for sex and age. Multivariable logistic regression analyses revealed that an annual income level

Survivors of childhood cancer are at risk of experiencing fatigue, pain, lower levels of physical activity, increased engagement in risky health behavior, and poor social adjustment, after finishing treatment. Risks are more pronounced for survivors of specific diagnoses or receiving specific treatment protocols. Interventions to address these outcomes are in their infancy. Future research should focus on exploring the antecedents and consequences of these outcomes. In the meantime, researchers and cancer centers should attempt to provide high-quality and accessible health information to survivors through various media outlets to encourage healthy behaviors.

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

Youth with chronic pain and their parents face uncertainty regarding their diagnosis, treatment, and prognosis. Given the uncertain nature of chronic pain and high comorbidity of anxiety among youth, intolerance of uncertainty (IU) may be critical to the experience of pediatric chronic pain. This study longitudinally examined major tenets of the Interpersonal Fear Avoidance Model of Pain and included parent and youth IU as key factors in the model. Participants included 152 youth with chronic pain (Mage = 14.23 years; 72% female) and their parents (93% female). At baseline, parents and youth reported on their IU and catastrophic thinking about youth pain; youth reported on their fear of pain, pain intensity, and pain interference; and parents reported on their protective responses to child pain. Youth reported on their pain interference 3 months later. Cross-lagged panel models, controlling for baseline pain interference, showed that greater parent IU predicted greater parent pain catastrophizing, which, in turn, predicted greater parent protectiveness, greater youth fear of pain, and subsequently greater youth 3-month pain interference. Youth IU had a significant indirect effect on 3-month pain interference through youth pain catastrophizing and fear of pain. The results suggest that parent and youth IU contribute to increases in youth pain interference over time through increased pain catastrophizing, parent protectiveness, and youth fear of pain. Thus, parent and youth IU play important roles as risk factors in the maintenance of pediatric chronic pain over time and may be important targets for intervention.

Background The objective of this study was to characterize the prevalence and risk of pain, pain interference, and recurrent pain in adult survivors of childhood cancer in comparison with siblings. Methods This study analyzed longitudinal data from survivors (n = 10,012; 48.7% female; median age, 31 years [range, 17-57 years]; median time since diagnosis, 23 years) and siblings (n = 3173) from the Childhood Cancer Survivor Study. Survivors were diagnosed between 1970 and 1986 at 1 of 26 participating sites. Associations between risk factors (demographics, cancer-related factors, and psychological symptoms) and pain, pain interference, and recurrent pain (5 years apart) were assessed with multinomial logistic regression. Path analyses examined cross-sectional associations between risk factors and pain outcomes. Results Twenty-nine percent of survivors reported moderate to severe pain, 20% reported moderate to extreme pain interference, and 9% reported moderate to severe recurrent pain. Female sex, a sarcoma/bone tumor diagnosis, and severe/life-threatening chronic medical conditions were associated with recurrent pain. Depression and anxiety were associated with increased risk for all pain outcomes. Poor vitality mediated the effects of anxiety on high pain and pain interference (root mean square error of approximation, 0.002). Conclusions A large proportion of adult survivors report moderate to severe pain and pain interference more than 20 years after their diagnosis. Increased screening and early intervention for pain interference and recurrent pain are warranted.

Recent changes to the legal status of marijuana in Canada warrant a review of the information that patients and families are accessing online regarding the role of cannabis in cancer. The aims of the current research were to identify the quality of literature available online as well as the themes, and opinion (i.e., pro-, neutral, or anti-cannabis) of online articles. Searches were conducted using three primary search engines: Google, Yahoo, and DuckDuckGo. Articles were assessed for quality based on a modified scale for evaluating online sources. Content of all unique articles was coded using a qualitative thematic methodology in a line-by-line fashion. Codes were clustered to determine themes within articles. Finally, opinions were determined by examining all articles in a line-by-line fashion. Each statement was coded as either pro-cannabis (positive) or anti-cannabis (negative). We found most articles were authored by journalists (39.4%) and MDs (14.1%) and published as news (35.2%) or web articles (28.2%). The content of articles focused on four themes: the reasons for and against cannabis use; the opinions of health care providers; the restrictions placed by governing bodies and the need for additional research, education, and standardization. Article opinions were neutral-pro-cannabis. Health care providers should be aware that the overall quality of information found online is considered “satisfactory.” The majority of articles present a pro-cannabis opinion.

Contains fulltext : 219064.pdf (Publisher’s version ) (Closed access) Children's experience of chronic pain is influenced by the psychological and behavioural responses of their parents. However, the majority of research has been cross-sectional, precluding examination of how these dynamic relationships unfold over time. This study used a microlongitudinal design to examine the daily relationships between parent mood and protective responses and child chronic pain. We also examined the moderating roles of child and parent pain catastrophizing to determine how the affective-motivational context may alter the influence of parent factors. Participants included 95 youth with idiopathic chronic pain (Mage = 14.08; 71.6% female) and their parents. At baseline, parents and youth reported on their catastrophic thinking about child pain. For 7 consecutive days, parents completed daily assessments of their mood and protective responses, while youth completed assessments of their pain intensity, unpleasantness, and interference. Multilevel path analyses were conducted. At a daily level, greater parent protectiveness significantly predicted higher youth pain unpleasantness, interference, and intensity; more negative parent mood significantly predicted higher youth pain intensity and unpleasantness. Higher baseline youth pain catastrophizing predicted a stronger daily association between parent mood and youth pain unpleasantness and intensity. Higher baseline parent pain catastrophizing predicted a weaker daily association between parent protectiveness and youth pain interference. Findings suggest that parent mood and protective responses are dynamic, daily predictors of child pain. Findings also underscore the importance of addressing parents' daily mental health and protectiveness, among youth with chronic pain, and suggest different intervention targets depending on levels of child and parent catastrophizing. 11 p.

Background/Objectives. Despite advances in the treatment of sickle cell disease (SCD), cerebrovascular and cognitive consequences can be lifelong. Hematopoietic cell transplantation (HCT) is an established curative therapy and recent studies have demonstrated efficacy with reduced toxicity nonmyeloblative (NMA) regimens, but little is known about neuropsychological outcomes. The objective of this study was to describe neuropsychological, behavioral, and quality of life outcomes with medical correlates in children with SCD who received an NMA matched sibling donor (MSD) HCT. Design/Methods. This retrospective cohort analysis of nine patients with hemoglobin SS SCD underwent MSD HCT using the National Institutes of Health (NIH) NMA protocol. Results. Mean full scale intellectual functioning (FSIQ) was average pre-HCT (FSIQ=92.1, SD 9.0; n=8) and 2 years post-HCT (mean FSIQ=96.6; SD 11.1; N=9). Neuropsychological functioning was largely average across all cognitive domains. Moderate improvements were seen in processing speed and verbal memory (Cohen’s d=0.50-0.57) post-HCT, and declines occurred in measures of attention and fine motor speed and dexterity (Cohen’s d=0.70-0.81). Parents reported improved quality of life (Cohen’s d=0.91), less impact of SCD on their family, and less worry about their child’s future (Cohen’s d=1.44). Exploratory analysis showed relationships between pre-HCT hemoglobin (r=0.74, p

There is a growing focus on describing both negative and positive outcomes in the wake of childhood cancer. The purpose of this study was to describe and explore the relationships between posttraumatic stress symptoms (PTSS) and posttraumatic growth (PTG) among children living beyond cancer and one of their parents. As part of a larger online survey, 113 children (Mage at time of study = 15.82 (SD = 4.81); Mage at diagnosis = 5.86 (SD = 4.66)) and one of their parents completed questionnaires assessing PTSS and PTG. Descriptive statistics were used to describe the sample and levels of PTSS and PTG. Data were z-transformed and analyzed using bivariate correlations and t-tests. An actor–partner interdependence model (APIM) was used to test whether children’s and their parents’ PTSS was associated with their own PTG (actor effect) and the others’ PTG (partner effect). PTSS was low and PTG was moderate in this sample relative to scale ranges. There were no significant differences between the children’s and their parents’ PTSS (p = 0.535) or PTG (p = 0.534). Results from the APIM showed no significant actor effects (p = 0.185). A significant overall partner effect (p = 0.020) emerged. Lower PTSS for children was associated with greater PTG for their parents (b = −0.29, p = 0.018), but parent’s PTSS was not associated with children’s PTG (p = 0.434). This sample reported similar levels of PTSS and PTG to that which has been reported in the literature. Children and their parents’ scores on PTSS and PTG measures were not significantly different from one another. Children’s PTSS was negatively associated with their parents PTG, illuminating the ways in which PTSS and PTG may be related in the context of childhood cancer. Exploring family-based strategies to reduce PTSS and enhance PTG may be warranted, though further studies are required.

Survivors of childhood cancer experience late effects as a result of their cancer treatment. Evidence for the prevalence of pain as a late effect has been equivocal. This study aimed to describe the prevalence and patterns of pain and biospsychosocial variables that may be related to pain in this population.Survivors of childhood cancer (n = 299; 52.5% male; median age = 16.1[4.6-32.6] years; years off therapy = 9.1[2.0-23.7]) were included. Survivors completed a health assessment questionnaire as part of their long-term survivor clinic appointment (median = 3.0 appointments, range = 1.0-7.0) annually or biannually between 2014 and 2017 (Time 1-Time 4). Prevalence of pain was examined and latent class analysis (LCA) was used to identify patterns of pain based on longitudinal reports of pain. Binary logistic regression examined biopsychosocial variables at Time 1 (T1) associated with class membership.Forty-seven percent of survivors reported pain during at least one clinic visit. Headaches were the most prevalent type of pain (26.4%). Survivors of Wilms' Tumor and Ewing's Sarcoma reported the highest prevalence of pain (51.5% and 50.0%, respectively). LCA revealed two clinically relevant profiles: "infrequent or no pain" (74.3%) and "persistent pain" (25.7%). Logistic regression showed that female sex (odds ratio, OR = 2.69, 95% confidence interval, CI [.99, 7.31]), depressive symptomatology at T1 (OR = 2.27, 95% CI [1.31, 3.94]), and drinking to intoxication at T1 (OR = 3.07, 95% CI [1.03, 9.15]), were related to persistent pain.Pain is prevalent among survivors of childhood cancer. Future research should characterize the experience of pain in this population so interventions may be developed. Assessment of pain during regular long-term follow-up appointments is warranted. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Purpose The evidence demonstrating the benefits of exercise and PA in patients and survivors of childhood cancer has been translated into a handful of community-based programs, such as the Pediatric cancer patients and survivors Engaging in Exercise for Recovery Program (PEER). In order to support the translation of research to practice, the next step in knowledge translation is to evaluate program effectiveness. An evaluation must consider the goals of the PEER program, feedback from key stakeholders and logistics of this program. Thus, the purpose of this study was to develop an evaluation toolkit with an algorithm for implementation for the PEER program. Methods Semi-structured interviews were conducted with three different groups (stakeholders in pediatric oncology, PEER parents and PEER participants). The interviews were transcribed and coded by two independent reviewers. Results Key themes extracted from the interviews were split into physical and psychosocial themes. The most commonly reported psychosocial themes were QOL, fatigue/energy levels, fun and confidence levels; and physical themes included motor skills, physical literacy and physical activity levels. Tools were compiled into the evaluation based on key themes identified as well as logistics of PEER. An algorithm was developed to tailor the evaluation to participants based on age, cognitive ability and mobility. Conclusion To date, this is the first evaluation toolkit and algorithm developed for a specific community-based PA program, the PEER program. The next step in knowledge-translation will be to implement the evaluation to assess feasibility, and share the evaluation for adoption within other developing programs.

The objectives of this review were to (1) summarize studies that described social adjustment in survivors of pediatric ALL across the lifespan, (2) summarize social adjustment outcomes reported across studies, and (3) examine associations between social adjustment and disease/treatment- and non-treatment-related factors.Searched databases included EMBASE (Ovid), MEDLINE (Ovid), PsycINFO (EBSCO Information Services), and Web of Science (Thomson Reuters). Eligible studies included: (1) original research; (2) published in English; (3) a diagnosis of cancer between 0 and 21 years; (4) survivors at least 5 years from diagnosis and/or 2 years from therapy completion; and (5) quantitative assessment of social adjustment.The literature search yielded 3698 articles of which 43 were included in the final review. Risk of bias was assessed using domains adapted from the Cochrane risk-of-bias tool. Quality of evidence was evaluated following the Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. There was some evidence that school-aged and adolescent/young adult survivors experienced worse social adjustment compared to controls. There was some evidence suggesting cranial radiation therapy (CRT) is associated with social adjustment difficulties among young adult survivors. Inconsistent evidence was found for relapse, age at diagnosis and study, sex, and late effects in relation to social adjustment.Survivors of pediatric ALL were at higher risk of social adjustment difficulties compared to controls. However, evidence for treatment and non-treatment risk and resilience factors require stronger evidence.Information on modifiable factors that modulate social adjustment may influence targets of intervention and follow-up guidelines.

Research on the benefits of physical activity (PA) in childhood cancer has been translated into a handful of community-based programs. However, to foster further translation, an understanding of how to evaluate participant outcomes would be beneficial to provide feedback to participants and stimulate future research. Such a review would provide a summary of acceptable tools for work in this area. The purpose of this scoping review was to identify the evaluation tools that have been used in PA/exercise studies or programs for childhood cancer. This review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies included in the review used physical and psychosocial evaluation tools within PA and exercise programs or research for childhood cancer. In addition, studies with measures of health behavior such as PA levels and activities of daily living were included. Tools that assessed physical fitness and physical performance were excluded. Information on the types of evaluation tools used, mean age of participants, and type of cancer was extracted. Psychometric properties of each evaluation tool are reported. The most commonly assessed patient outcomes were motor performance, fatigue, well-being, functional mobility, and quality of life. Less commonly reported patient outcomes were hope, self-efficacy, and self-perception. None of the evaluation tools reported in the PA/exercise and pediatric oncology literature assess physical literacy. This review was the first step in a knowledge translation process, identifying evaluation tools that have been used in PA/exercise programs in childhood cancer survivors, that will guide the development and evaluation of current and future community-based programs.

PURPOSE: Improved therapies for pediatric central nervous system (CNS) tumors have increased survival rates, however, many survivors experience significant long-term functional limitations. Survivors of pediatric CNS tumors can experience deficits in social attainment. The aim of this review was to systematically amalgamate findings pertaining to social attainment (i.e., educational attainment, marriage, employment outcomes) in survivors of pediatric CNS tumors. METHODS: PubMed(Web-based), PsycINFO(EBSCO), EMBASE(Ovid), and Web of Science(Thomson Reuters) were used to identify articles published between January 2011 and September 2018. Eligible studies reported outcomes for survivors of pediatric CNS tumors diagnosed before age 21 years, and >5 years from diagnosis and/or >2 years off therapy. All data were independently abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0. RESULTS: The search yielded 7,021 unique publications. Forty-six were included in the current review. Meta-analyses revealed survivors of CNS tumors were significantly more likely to have completed compulsory education only (OR = 1.87, 95% CI = 1.66, 2.12, p < 0.00001), less likely to be married (OR = 4.70, 95% CI = 3.89, 5.68, p

Objective Today, more than 80% of children diagnosed with cancer are expected to survive. Despite the high prevalence of pain associated with the diagnosis and treatment of childhood cancer, there is a limited understanding of how having cancer shapes children's experience and meaning of pain after treatment has ended. This study addresses this gap by exploring childhood cancer survivors' (CCS') experiences of pain from their perspective and the perspective of their parents. Methods Twenty semi-structured interviews were completed with CCS (50% female; mean age = 13.20 y, range = 8-17 y) and their parents (90% mothers). Data were analyzed using interpretive phenomenological analysis. Results Analyses revealed three superordinate themes present in the data: (a) pain is a changed experience after childhood cancer; (b) new or ambiguous pains may be interpreted by CCS and parents as a threat of disease recurrence, late effects, or a secondary cancer; and (c) pain interpretation occurs within the broader context of how CCS and parents appraise their cancer experience. Parents generally appraised their child's cancer and pain as more threatening and were influential in guiding their child's interpretations. Conclusions The cancer experience played an important role in shaping CCS' and their parents' experience and interpretation of pain in survivorship. This study provides novel data to inform the development and refinement of new and existing conceptual models of pain and symptom perception after cancer. The results also point to key areas for future investigation and clinical intervention to address the issue of pain in cancer survivorship.

Resilient systems have the capability to survive and recover from seriously affecting events. Resilience engineering already is established for socio-economic organisations and extended network-like structures e. g. supply systems like power grids. Transferring the known principles and concepts used in these disciplines enables engineering resilient load-carrying systems and subsystems, too. Unexpected load conditions or component damages are summarised as disruptions caused by nesciense that may cause damages to the system or even system breakdowns. Disruptions caused by nescience can be controlled by analysing the resilience characteristics and synthesising resilient load-carrying systems. This paper contributes to a development methodology for resilient load-carrying systems by presenting a resilience applications model to support engineers analysing system resilience characteristics and behaviour. Further a concept of a systematically structured solution catalogue is provided that can be used for the classification of measures to realise resilience functions depending on system adaptivity and disruption progress. The resilience characteristics are illustrated by 3 examples.

Few studies have compared follow-up-care models for adult survivors of childhood cancer (ASCCs), though choice of model could impact medical test adherence, and health-related quality of life (QOL). This study compared two follow-up-care models, cancer-center-based versus community-based, for ASCCs in Alberta, Canada, to determine which model would demonstrate greater ASCC adherence to guideline-recommended medical screening tests for late effects, QOL, physical symptoms, and adherence to yearly follow-up. ASCC discharged to a community model (over 15 years) and those with comparable birth years (1973–1993) currently followed in a cancer center model were recruited via direct contact or multimedia campaign. Chart review identified chemotherapeutic and radiation exposures, and required medical late effect screening tests. ASCCs also completed questionnaires assessing QOL, physical symptoms, and follow-up behavior. One hundred fifty-six survivors participated (community (n = 86); cancer center (n = 70)). Primary analysis indicated that cancer center ASCCs guideline-recommended total test adherence percentage (Mdn = 85.4%) was significantly higher than the community model (Mdn = 29.2%, U = 3996.50, p

Head and neck cancer (HNC) patients and survivors are a particularly vulnerable group with disproportionately high levels of psychosocial distress. Untreated psychosocial distress among HNC patients has consistently been associated with poorer health and psychosocial outcomes. Screening for distress (SFD) allows health care providers to identify and monitor patient’s distress, and when needed, to subsequently provide appropriate psychosocial supports that aim to reduce suffering and improve patients’ overall well-being. However, despite mounting evidence for the benefits of SFD some oncology centers continue to neglect SFD in HNC patients and survivors, thereby depriving these patients of the opportunity to have their unmet psychosocial needs appropriately addressed. The present paper reviews SFD literature and explores ethical considerations in screening HNC patients and for distress. Screening HNC patients for distress and facilitating the alleviation of suffering are important steps in providing ethical care. HNC oncology administrators, surgical departments, and clinicians are urged to consider the implementation of SFD for HNC patients and to take the necessary steps in implementing SFD practices and psychosocial care.

Despite the availability of tools to assess psychosocial screening in pediatric oncology, little is known about the feasibility and acceptability of systematic screening. We aimed to assess the feasibility of implementing a tool, or set of tools, capable of screening for psychosocial distress in pediatric cancer patients across the cancer continuum (on treatment, off treatment). Psychometric criteria were also evaluated. Patients 8-18 years were recruited from a pediatric oncology program. Patients completed self-report measures of the Distress Thermometer (DT) and Pediatric Quality of Life Inventory (PedsQL). One parent of each patient completed three screening tools: DT (proxy-report); PedsQL (proxy-report), and the Psychosocial Assessment Tool adapted for the Canadian context (PATrev), as well as a measure of patient psychological functioning (Behavioral Assessment System for Children-2), and an assessment of screening tool acceptability. Recruitment rates and acceptability informed feasibility of implementation. Ninety-five patients (58 men) with a mean age of 11.47 participated in the study (on treatment

Objective: To evaluate group differences in social adjustment in survivors of pediatric ALL compared to survivor siblings, and controls; identify disease-related predictors of social adjustment in survivors; and explore whether executive functioning explained differences in social adjustment across groups and between disease-related predictors. Methods: Survivors of pediatric ALL (n=38, average age at diagnosis=4.27 years [SD=1.97]; average time off treatment=4.83 years [SD=1.52]), one sibling (if available, n=20), and one parent from each family were recruited from a long-term survivor clinic. Healthy age- and sex-matched controls (n=38) and one parent from each family were recruited from the community. Parents completed the Behavioral Assessment System for Children, Parent Rating Scale (BASC-3) Social Withdrawal subscale as a measure of social adjustment and the Behavior Rating Inventory of Executive Functions (BRIEF-2) as a measure of executive function for each of their children. Results: Parents reported that survivors had significantly worse social adjustment compared to controls (b=6.34, p=.004), but not survivor siblings. Among survivors, greater time off treatment (b=2.06, p=.058) and poorer executive functioning (b=0.42, p=.006) were associated with worse social adjustment. Executive function did not mediate differences in social withdrawal between survivors and controls or the relationship between time off treatment and social withdrawal among survivors. Conclusions: Survivors of pediatric ALL presenting to follow-up programs should be screened for difficulties with social adjustment. Future research should examine treatment- and non-treatment-related factors contributing to poorer social outcomes.