Alberta Childhood Cancer Survivorship Research Program.

Adverse outcomes after childhood cancer have been assessed in a range of settings, but most existing studies are historical and ascertain outcomes only after 5-year survival. Here, we describe the Alberta Childhood Cancer Survivorship Research Program and its foundational retrospective, population-based cohort of Albertan residents diagnosed with a first primary neoplasm between the ages of 0 and 17 years from 1 January 2001 to 31 December 2018. The cohort was established in collaboration with the Alberta Cancer Registry and Cancer in Young People in Canada program and has been linked to existing administrative health databases and patient-reported outcome questionnaires. The cohort comprised 2580 survivors of childhood cancer, 1379 (53.4%) of whom were 5-year survivors. Approximately 48% of the cohort was female, 47% of the cohort was diagnosed between 0 and 4 years of age, and the most frequent diagnoses were leukemias (25.4%), central nervous system tumors (24.0%), and lymphomas (14.9%). Detailed treatment information was available for 1741 survivors (67.5%), with manual abstraction ongoing for those with missing data. By the study exit date, the median time since diagnosis was 5.5 years overall and 10.4 years for 5-year survivors. During the follow-up time, 82 subsequent primary cancers were diagnosed, 20,355 inpatient and 555,425 ambulatory/outpatient events occurred, 606,773 claims were reported, and 437 survivors died. The results from this research program seek to inform and improve clinical care and reduce cancer-related sequelae via tertiary prevention strategies.

Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth's and their caregiver's experiences with, and perspectives of, pain in the context of pediatric cancer treatment. METHODS: Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me. CONCLUSIONS: Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.

Bedtime digital media use, sleep and fatigue among survivors of childhood cancer, their siblings and healthy control sibling pairs.

Bedtime digital media use (BDM) is linked to poor sleep and fatigue in many populations. Pediatric cancer patients have been observed to engage in BDM in clinical settings, but it is unknown whether BDM rates are higher in this population or how this impacts their sleep and fatigue during treatment and into survivorship. The goal of this study was to evaluate patterns of BDM and its relationship with sleep and fatigue in a sample of pediatric cancer survivors and to compare these patterns with children from their own family (i.e. siblings) and children from unaffected families (i.e. healthy matched controls and siblings of controls). Ninety-nine children (4 groups: 24 acute lymphoblastic leukemia survivors, 13 survivor siblings, 33 controls, 29 control siblings) ages 8-18 were recruited from a long-term survivor clinic at a large children's hospital and via community advertisements. Survivors were 2-7 years post-treatment (M = 4.80 years). Children's BDM was parent-reported. Children completed 7 consecutive days of sleep actigraphy and the PedsQL Multidimensional Fatigue Scale. Most survivors (66.67%) engaged in BDM; smartphones were the most common medium. BDM patterns were equivalent across survivors, their siblings, controls, and control siblings. Statistical trends suggested that BDM was associated with fewer minutes of sleep and greater fatigue for all children; these relationships were equivalent across groups. BDM was common among survivors, but usage was not different from their own siblings or compared to healthy control children and sibling pairs. This study underscores the importance of assessing bedtime digital media use in childhood cancer survivors, although other factors impacting sleep should be explored. Clinicians should emphasize established recommendations for healthy media use and sleep habits in pediatric oncology settings.

The Impact of the Early COVID-19 Global Pandemic on Children Undergoing Active Cancer Treatment and Their Parents.

(1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment completed an online survey regarding the impact of COVID-19 on their child's cancer care, perceived utility of telemedicine, and child and parent mental health status. (3) Results: Most participants (87%) reported that they did not experience any changes to major cancer treatments. Among those who reported using telemedicine, 78% reported this to be beneficial. Over half of the participants reported that their child's mental health status was worse now than prior to the COVID-19 global pandemic. Parent-reported child anxiety scores were significantly higher for those who reported changes to mental health care for their child compared to those who did not report the same, t(25.99) = -3.04, p = 0.005. (4) Conclusion: Child and parent mental health status were affected when compared to pre-pandemic. Telemedicine appears to be a promising complement to face-to-face meetings for some families and warrants further exploration.

Social adjustment across the lifespan in survivors of pediatric acute lymphoblastic leukemia (ALL): a systematic review.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. IMPLICATIONS FOR CANCER SURVIVORS: Information on modifiable factors that modulate social adjustment may influence targets of intervention and follow-up guidelines.

The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs.

Background: Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods: Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs. Results: Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed. Discussion: AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

Documenting patients' and providers' preferences when proposing a randomized controlled trial: a qualitative exploration.

BACKGROUND: With advances in cancer diagnosis and treatment, women with early-stage breast cancer (ESBC) are living longer, increasing the number of patients receiving post-treatment follow-up care. Best-practice survivorship models recommend transitioning ESBC patients from oncology-provider (OP) care to community-based care. While developing materials for a future randomized controlled trial (RCT) to test the feasibility of a nurse-led Telephone Survivorship Clinic (TSC) for a smooth transition of ESBC survivors to follow-up care, we explored patients' and OPs' reactions to several of our proposed methods. METHODS: We used a qualitative study design with thematic analysis and a two-pronged approach. We interviewed OPs, seeking feedback on ways to recruit their ESBC patients for the trial, and ESBC patients, seeking input on a questionnaire package assessing outcomes and processes in the trial. RESULTS: OPs identified facilitators and barriers and offered suggestions for study design and recruitment process improvement. Facilitators included the novelty and utility of the study and simplicity of methods; barriers included lack of coordination between treating and discharging clinicians, time constraints, language barriers, motivation, and using a paper-based referral letter. OPs suggested using a combination of electronic and paper referral letters and supporting clinicians to help with recruitment. Patient advisors reported satisfaction with the content and length of the assessment package. However, they questioned the relevance of some questions (childhood trauma) while adding questions about trust in physicians and proximity to primary-care providers. CONCLUSIONS: OPs and patient advisors rated our methods for the proposed trial highly for their simplicity and relevance then suggested changes. These findings document processes that could be effective for cancer-patient recruitment in survivorship clinical trials.

Social adjustment in survivors of acute lymphoblastic leukemia without cranial radiation therapy.

OBJECTIVE: To evaluate group differences in social adjustment in survivors of pediatric acute lymphoblastic leukemia (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. Multilevel modeling and mediation analysis were used to achieve the study aims. 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 nontreatment-related factors contributing to poorer social outcomes.

Characterizing pain in long-term survivors of childhood cancer.

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. RESULTS: 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. RELEVANCE: Findings support regular screening for the presence and magnitude of chronic pain in survivors of childhood cancer in long-term follow-up care.

The pain of survival: Prevalence, patterns, and predictors of pain in survivors of childhood cancer.

OBJECTIVE: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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).

Associations Among Health Behaviors and Psychosocial Outcomes in Adolescent and Young Adult Cancer Survivors.

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 health behaviors in AYA cancer survivors. We examined frequencies of health behaviors and associations between health behaviors, psychosocial, and clinical factors in AYA cancer survivors. Methods: Participants were survivors of AYA cancer (n = 60; 38.3% male; mean age = 25.3 years [standard deviation, SD = 4.6]; mean years since therapy completion = 9.0 [SD = 4.2]) from the Alberta Children's Hospital (ACH). Survivors were 13-21 years old at the time of diagnosis. Measures included demographic and clinical data, and the ACH Long-Term Survivor's Questionnaire. Health behaviors were compared with a control group (n = 600) using data from the 2017 Canadian Community Health Survey. Frequencies, conditional logistic regression, and logistic regression analyses were conducted. Results: Compared with controls, survivors reported engaging in physical activity (91.5% vs. 87.5%; odds ratio [OR] = 0.87, 95% confidence interval [CI] = 0.34-2.24; p = 0.77), smoking tobacco (15.3% vs. 19.7%; OR = 1.85, 95% CI = 0.89-3.85; p = 0.10), and street drug use (27.6% vs. 36.5%; OR = 1.60, 95% CI = 0.88-2.91; p = 0.12) at the same rate. Survivors reported binge drinking significantly less (61.0% vs. 76.6%; OR = 0.53, 95% CI = 0.30-0.92; p = 0.024) than controls. Logistic regression analyses revealed a significant model predicting binge drinking [χ2(5, 58) = 23.17, p < 0.001] with greater time off treatment, fear of another health condition, and higher mean body mass index emerging as significant predictors. Conclusion: AYA cancer survivors engage in risky health behaviors at rates similar to their peers. Further research is needed to understand factors mediating survivors' decision to participate in risky health behaviors.

Perceived Health among Adolescent and Young Adult Survivors of Childhood Cancer.

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 < 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.

The Intergenerational Transmission of Chronic Pain from Parents to Survivors of Childhood Cancer.

BACKGROUND: Among youth with chronic non-cancer pain, 50% have parents with chronic pain. These youth report significantly more pain interference and posttraumatic stress symptoms (PTSS), and worse health-related quality of life (HRQL) than youth whose parents do not have chronic pain. Additionally, parent chronic pain is linked to increased child anxiety and depressive symptoms. Survivors of childhood cancer (SCCs) are at risk of pain and negative psychosocial outcomes and therefore may be especially vulnerable if their parents have chronic pain. Thus, the aims of the current study were to (1) identify rates of chronic pain among parents of SCCs, (2) test group differences in psychological symptoms in parents with chronic pain versus without, and (3) test group differences in pain interference, HRQL, anxiety, depression, and PTSS in SCCs with parents with chronic pain versus without. METHODS: 122 SCCs (Mean age = 15.8, SD = 4.8, 45.7% male, Mean age at diagnosis = 5.9, SD = 4.7) and their parents were recruited from across Canada to complete online questionnaires. Parents were asked if they have had pain for at least three consecutive months and completed the brief symptom inventory (BSI) as a measure of psychological symptomatology. Survivors completed the pain questionnaire, patient reported outcomes measurement information system (PROMIS)-pain interference, anxiety, and depression measures, child posttraumatic stress scale, posttraumatic stress disorder checklist for the Diagnostic and Statistical Manual of Mental Disorders, and the pediatric quality of life inventory. RESULTS: Forty-three (39%) parents of SCCs reported having chronic pain. Of the 29 survivors who had chronic pain, 14 (48%) also had parents with chronic pain. Parents with chronic pain reported significantly higher scores on the BSI than parents without chronic pain, F(1, 116) = 5.07, p = 0.026. SCCs with parents with versus without chronic pain reported significantly higher PTSS F(1, 105) = 10.53, p = 0.002 and depressive symptoms F(1, 102) = 6.68, p = 0.011. No significant differences were found across the other variables tested. CONCLUSIONS: Findings suggest that survivors' parents' own pain is prevalent and is related to survivors' increased depressive symptoms and PTSS, but not anxiety, pain interference, or HRQL. Future research should explore whether parents may benefit from psychological intervention after their child has been diagnosed with cancer and how this could improve outcomes for their child.

Sleep Disturbances in Survivors of Pediatric Acute Lymphoblastic Leukemia and Their Siblings.

OBJECTIVE: Sleep disturbances have been identified by patients with cancer as common and distressing; however, conflicting evidence about the prevalence of these outcomes exists for survivors of childhood cancers. Additionally, little is known about how the experience of cancer might impact survivor siblings' sleep. The current study compared the sleep of survivors of acute lymphoblastic leukemia who were 2-7 years off therapy and their siblings to healthy control/sibling dyads. METHODS: Participants (survivors, n = 45; survivor siblings, n = 27; controls, n = 45; control siblings, n = 41; 58% male) aged 8-18 (m = 11.64) completed a 7-day sleep diary and seven consecutive days of actigraphy. Parents (n = 90) completed the Children's Sleep Habits Questionnaire for each of their children. RESULTS: No between-group differences were found on measures of sleep diaries or actigraphy. Parents reported that survivor siblings had significantly poorer sleep habits than survivors or controls. For survivors, greater time off treatment and younger age at diagnosis were associated with less total sleep time, more wake after sleep onset, and decreased sleep efficiency via actigraphy. CONCLUSION: Sleep across all groups was consistent and below national guidelines. Although the survivor group did not have poorer sleep compared to their siblings or matched controls, within the survivor group, those who were diagnosed at an earlier age and those who were further off treatment had more disrupted sleep. Parent reports suggested that survivor siblings may be at risk for sleep problems.

Fear of cancer recurrence among survivors of childhood cancer.

OBJECTIVES: Fear of cancer recurrence (FCR) has not been widely explored in survivors of childhood cancer. Yet, childhood survivors are at risk of experiencing late effects and may be especially vulnerable. The aims of the current study were to conduct a retrospective chart review to determine the prevalence and persistence of FCR among survivors of childhood cancer and to examine factors that may be related to FCR. METHODS: Survivors of childhood cancer (n = 228, mean attained age = 14.5 years [range = 4.7-21 years]; mean diagnosis age = 4.4 years [range = 0-16.5 years]; mean time off treatment = 8.7 years [range = 2.8-19.3 years]) seen in a Long-Term Survivor Clinic (LTSC) completed questionnaires at each clinic visit detailing their current health. FCR was measured with a single item. Data from questionnaires from 2011 to 2018 were analyzed retrospectively. Descriptive statistics and a random effects model were used to address study aims. RESULTS: FCR was reported in 43% (n = 98) of survivors at least once across all clinic visits. Among survivors reporting FCR at least once, 66% were diagnosed with cancer under the age of 5, and 64% were 13 years or older at their most recent follow-up. Twenty-one percent of survivors (n = 48/224) reported FCR during at least 50% of their visits. Survivors with a higher number of depressive symptoms were more likely to report FCR (OR = 1.66, P = .03). CONCLUSIONS: FCR is prevalent among survivors of childhood cancer and is related to other health concerns. Research is needed to understand who is at risk and how to.

Social adjustment and repressive adaptive style in survivors of pediatric cancer.

PURPOSE: The aim of the study was to explore the relationship between repressive adaptive style and self-reports of social adjustment in survivors of pediatric cancer compared to their siblings. We hypothesized that there would be a greater proportion of repressors among survivors of pediatric cancer compared to siblings, and that repressive adaptive style would be significantly associated with more positive self-reports of social adjustment. METHODS: We utilized a cross-sectional approach. Seventy-seven families participated. Survivors of pediatric cancer (n = 77, 48% male; 8-18 years of age) and one sibling (n = 50, 48% male; 8-18 years of age) completed measures assessing repressive adaptive style and social adjustment. As well, one parent from each family completed a socio-demographic questionnaire. Questionnaire packages were mailed to eligible families who agreed to participate, and were mailed back to investigators in a pre-addressed, pre-stamped envelope. RESULTS: Chi-square analyses revealed there was no significant difference in the proportion of repressors among survivors and siblings. Social adjustment scores were subjected to a two (group: survivor, sibling) by two (repressor, nonrepressor) ANCOVA with gender and age as covariates. There was a significant main effect of repressive adaptive style (F = 5.69, p < .05, η2 = 0.05) with a modest effect. Survivors and siblings with a repressive style reported significantly higher social adjustment scores (M = 106.91, SD = 11.69) compared to nonrepressors (M = 99.57, SD = 13.45). CONCLUSIONS: Repressive adaptive style explains some of the variance in survivors and siblings' self-reports of social adjustment. Future research should aim to better understand the role of the repressive adaptive style in survivors and siblings of children with cancer.

Unmet Needs of Adult Survivors of Childhood Cancers: Associations with Developmental Stage at Diagnosis, Cognitive Impairment, and Time from Diagnosis.

PURPOSE: Adult survivors of childhood cancers (ASCCs) are a unique and growing population. Because these individuals were diagnosed in childhood, their developmental stage at diagnosis may influence medical sequelae and perception of their cancer diagnosis and potentially result in long-term complications and challenges. Our aim was to determine how developmental stage, time since diagnosis, and cognitive impairment relate to Canadian ASCC distress and unmet needs. METHODS: Canadian ASCCs aged 19-77 years (N = 115) diagnosed between ages 0 and 5 (n = 25), 6 and 12 (n = 22), or 13 and 18 (n = 68) completed demographic, neurocognitive self-report, depression, and anxiety and unmet needs questionnaires. RESULTS: The developmental stage predicted distress, ß = -0.29, p = 0.01. Survivors diagnosed in middle childhood reported significantly more distress than those diagnosed in adolescence. Shorter time since diagnosis predicted greater psychosocial needs, ß = -0.24, p = 0.05, and greater distress, ß = -0.22, p = 0.05. Greater memory impairment predicted higher need across outcomes, ß = -0.36-0.61, p < 0.05. In adjusted analyses for unmet needs, endorsement of cancer affecting education and/or work importantly altered outcomes. CONCLUSION: Our results indicate that greater self-reported memory impairment increases childhood cancer survivors' care needs. We additionally suggest that supportive care interventions might best target those reporting work or education interruption due to cancer. Identification of ASCCs who report work/school interruptions may provide a quick screen for health providers to assess possible need for intervention. ASCCs still experience unmet needs long into survivorship.

Quality of Life in Survivors of Pediatric Cancer and Their Siblings: The Consensus Between Parent-Proxy and Self-Reports.

OBJECTIVES: To examine the discrepancy between survivor-parent and sibling-parent reports of health-related quality of life (HRQL) and the level of agreement (i.e., correlation) between child reports (i.e., survivor and sibling) and parent-proxy reports of HRQL. METHODS: Fifty-one families participated. Pediatric cancer survivors (49% male; 6-18 years of age) and one sibling (47% male; 9-18 years of age) completed a measure of their HRQL. As well, one parent (14% male; 27-65 years of age) from each family completed a proxy report of their children's (i.e., survivor and sibling) HRQL. Consensus was determined through discrepancy and agreement scores, between parent-proxy and children's (i.e., survivors and siblings) self-reports of total HRQL, and physical, emotional, social, and school functioning subscales. RESULTS: Repeated-measures analysis of variance (ANOVA) revealed significant group differences for total HRQL (F = 6.79, P ≤ 0.01). Repeated-measure ANOVAs of subscale discrepancy scores revealed significant group differences for physical functioning scores (F = 6.39, P < 0.01). A significant interaction was also found for social functioning when age at diagnosis was considered as a covariate (F = 10.30, P < 0.01). Zero-order and intraclass correlation coefficients revealed different levels of agreement between parent and child reports. Specifically, there was poorer agreement between parent-proxy and sibling's self-reports, particularly on social and emotional subscales. CONCLUSIONS: Discrepancy and agreement are both important indices to consider when examining consensus between parent-proxy and child self-reports. The findings from this study have important implications for future research and suggest that the impact of cancer on siblings should be further investigated.

Efficient method for generating nuclear fractions from marrow stromal cells.

Stem cells have received significant attention for their envisioned potential to treat currently unapproachable diseases. No less important is the utility of stem cells to serve as model systems of differentiation. Analyses at the transcriptome, miRNA and proteome levels have yielded valuable insights into events underlying stem cell differentiation. Proteomic analysis is often cumbersome, detecting changes in hundreds of proteins that require subsequent identification and validation. Targeted analysis of nuclear constituents would simplify proteomic studies, focusing efforts on transcription factor abundance and modification. To facilitate such studies, a simple and efficient methodology to isolate pure nuclear fractions from Marrow Stromal Cells (MSCs), a clinically relevant stem cell population, has been developed. The modified protocol greatly enhances cell disruption, yielding free nuclei without attached cell body remnants. Light and electron microscopic analysis of purified nuclei demonstrated that preparations contained predominantly intact nuclei with minimal cytoplasmic contamination. Western analysis revealed an approximately eightfold enrichment of the transcription factor CREB in the isolated nuclei over that in the starting homogenates. This simple method for isolation of highly purified nuclear fractions from stem cell populations will allow rigorous examination of nuclear proteins critical for differentiation.

Improving integrated general medical and mental health services in community-based practices.

The historical fragmentation of physical and mental health services has impeded efforts to improve quality and outcomes of care for persons with mental disorders. However, there is little information on effective strategies that might reduce fragmentation and improve integrated services within non-academic, community-based healthcare settings. Twenty-three practices from across the U.S. participated in a learning community meeting designed to identify barriers to integrated care and strategies for reducing such barriers. Barriers were initially identified based on a quantitative survey of organizational factors. Focus groups were used to elaborate on barriers to integrated care and to identify strategies for reducing barriers that are feasible in community-based settings. Participants identified key barriers, including administrative (e.g., lack of common medical records for mental health and general medical conditions), financial (e.g., lack of reimbursement codes to bill for mental health and general medical care in the same setting), and clinical (e.g., lack of an integrated care protocol). Top strategies recommended by participants included templates (i.e., for memoranda of understanding) to allow providers to work across practice settings, increased medical record security to enable a common medical record between mental health and general medical care, working with state Medicaid agencies to establish integrated care reimbursement codes, and guidance in establishing workflows between different providers (i.e., avoid duplication of tasks). Strategies to overcome barriers to integrated care may require cooperation across different organizational levels, including administrators, providers, and health care payers in order for integrated care to be established and sustained over time.