Acceptability, feasibility and preliminary effects of an online group psychotherapy intervention for adolescents and young adults with cancer.

BACKGROUND: Adolescents and young adults (AYAs; ages 15-29 years) diagnosed with cancer are increasingly recognized as an oncology population with distinct psychosocial needs. However, few specialized psychosocial interventions for AYAs currently exist. This study reports on the development of a novel group-based psychotherapy intervention to address the psychosocial needs of AYAs. The objective was to evaluate the acceptability, feasibility, and preliminary effects of the intervention. METHODS: The manualized group psychotherapy program is delivered virtually over an 8-week period by registered psychologists. Four groups (n = 5-11 AYAs per group) with a total of N = 33 participants (Mage = 20.97 years, SD = 3.68, range = 15-29 years, 76% women) were conducted. Recruitment and retention data assessed intervention feasibility. Patient-reported psychosocial outcomes were measured at baseline and immediately following the intervention to assess preliminary effects. Acceptability was assessed following the intervention using a self-report measure of participant satisfaction. RESULTS: Overall, the completion rate of the intervention was 85% (n = 28). All participants "strongly agreed" (88%) or "agreed" (13%) that they were satisfied with the group. Meeting, sharing experiences, and expressing feelings with other AYAs were identified as the most helpful aspects. Participants reported significant improvements in emotional (p < 0.05) and functional (p < 0.01) quality of life from baseline to immediately post-intervention with medium effect sizes (d = 0.58-0.70). CONCLUSIONS: Findings suggest that the intervention is feasible, acceptable, and shows promise for improving psychosocial outcomes for AYAs. Further research will refine the intervention and establish efficacy in a randomized trial.

Social adjustment in children diagnosed with sickle cell disease: A retrospective study.

BACKGROUND: Children with sickle cell disease (SCD) are at risk for physical, psychological, and social adjustment challenges. This study sought to investigate social adjustment and related factors in children living with SCD. METHODS: Data from 32 children (50% male, mean age = 10.32 years, SD = 3.27) were retrospectively collected from a neuropsychology clinic at a tertiary care pediatric hospital. Social adjustment was measured using the Behavior Assessment System for Children (BASC-3) parent-proxy, withdrawal subscale, and the Pediatric Quality of Life Inventory (PedsQL) Generic Module Social Functioning self- and parent-proxy subscales. Other measures captured executive functioning (i.e., Behavior Rating Inventory of Executive Function, Second Edition (BRIEF-2) Parent Form) and non-disease-related associations with social adjustment, including number of years in Canada and family functioning (i.e., PedsQL Family Impact Module). RESULTS: Sixteen percent of patients reported elevated social adjustment difficulties. Multiple linear regression found better family functioning [B = .48, t = 2.65, p = .016], and higher executive functioning [B = -.43, t = -2.39, p = .028] were related to higher scores on the PedsQL parent-proxy ratings of social adjustment [F(4,18) = 5.88, p = .003]. Male sex [B = .54, t = 3.08, p = .005], and having lived more years in Canada [B = .55, t = 2.81, p = .009], were related to higher PedsQL self-reported social adjustment [F(4,23) = 3.75, p = .017]. The model examining the BASC-3 withdrawal subscale was not statistically significant [F(4,16) = 1.63, p = .22]. IMPLICATIONS: Social adjustment in children diagnosed with SCD warrants future research to understand the influence of executive function, and non-disease-related factors, particularly focusing on sociocultural factors.

"Uncovering the unspoken": a narrative analysis of patients' experiences with testicular cancer.

BACKGROUND: The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services. METHODS: TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach. RESULTS: A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified. CONCLUSIONS: Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.

Emotional, behavioral, and physical health consequences of loneliness in young adult survivors of childhood cancer: Results from the Childhood Cancer Survivor Study.

BACKGROUND: Young adults in the general population are at risk of experiencing loneliness, which has been associated with physical and mental health morbidities. The prevalence and consequences of loneliness in young adult survivors of childhood cancer remain unknown. METHODS: A total of 9664 young adult survivors of childhood cancer (median age at diagnosis 10.5 years [interquartile range (IQR), 5-15], 27.1 years at baseline [IQR, 23-32]) and 2221 siblings enrolled in the Childhood Cancer Survivor Study completed a self-reported survey question assessing loneliness on the Brief Symptom Inventory-18 at baseline and follow-up (median follow-up, 6.6 years). Multivariable models evaluated the prevalence of loneliness at baseline only, follow-up only, and baseline + follow-up, and its associations with emotional distress, health behaviors, and chronic conditions at follow-up. RESULTS: Survivors were more likely than siblings to report loneliness at baseline + follow-up (prevalence ratio [PR] 2.2; 95% confidence interval [CI], 1.7-3.0) and at follow-up only (PR, 1.4; 95% CI, 1.1-1.7). Loneliness at baseline + follow-up was associated with elevated risk of anxiety (relative risk [RR], 9.8; 95% CI, 7.5-12.7), depression (RR, 17.9; 95% CI, 14.1-22.7), and current smoking (odds ratio [OR], 1.7; 95% CI, 1.3-2.3) at follow-up. Loneliness at follow-up only was associated with suicidal ideation (RR, 1.5; 95% CI, 1.1-2.1), heavy/risky alcohol consumption (RR, 1.3; 95% CI, 1.1-1.5), and new-onset grade 2-4 chronic conditions (RR, 1.3; 95% CI, 1.0-1.7). CONCLUSIONS: Young adult survivors of childhood cancer have elevated risk of experiencing loneliness, which is associated with future emotional distress, risky health behaviors, and new-onset chronic conditions.

Pediatric Hematopoietic Cell Transplantation: A Longitudinal Assessment of Health-Related Quality of Life of Pediatric Donors.

Pediatric donors may be at increased risk of psychological and social challenges following hematopoietic cell transplantation (HCT). Through a retrospective chart review, we evaluated the health-related quality of life (HRQL) of pediatric donors over time and examined facilitators and barriers to implementing a longitudinal psychosocial assessment. Fifty-one pediatric donors (M = 10.7 years, SD = 3.7) completed an HRQL questionnaire across six time points (T1 to T6) from prior to donation to 2 years after. Change in mean scores was assessed using a linear mixed-effect model for repeated measures design. Facilitators and barriers to implementation were examined. HRQL of pediatric donors improved between T1 and T6 with significant change in physical, emotional, and overall functioning. Facilitators to retention included the support of a clinical coordinator. Barriers to implementation included the absence of infrastructure to maintain contact with pediatric and their families. HRQL of pediatric donors of HCT improved steadily over time. Pattern of results suggests a need to further explore factors that contribute to change across time. Development of a longitudinal standardized assessment protocol that can be prospectively and feasibly implemented is integral to supporting the well-being of this group.

Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.

Measuring fear of cancer recurrence in survivors of childhood cancer: Development and preliminary validation of the Fear of Cancer Recurrence Inventory (FCRI)-Child and Parent versions.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common and distressing psychosocial concern for adult cancer survivors. Data on this construct in child survivors is limited and there are no validated measures for this population. This study aimed to adapt the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) for survivors of childhood cancer aged 8-18 years (Fear of Cancer Recurrence Inventory-Child version [FCRI-C]) and their parents (Fear of Cancer Recurrence Inventory-Parent version [FCRI-P]) to self-report on their own FCR and to examine the initial psychometric properties. METHODS: The FCRI-SF was adapted through expert panel input and cognitive interviews with child survivors <18 years. The factor structure, internal consistency and construct and criterion validity of the FCRI-C and FCRI-P were examined in 124 survivors of childhood cancer (43% female; Mage  = 14.58 years, SD = 2.90) and 106 parents (90% mothers). RESULTS: All FCRI-SF items were retained for the FCRI-C with simplified language. The internal consistencies of the FCRI-C (α = 0.88) and FCRI-P (α = 0.83) were good. Exploratory factor analyses yielded one-factor structures for both measures. Higher scores on the FCRI-C and FCRI-P were associated with greater intolerance of uncertainty and pain catastrophizing. Higher child FCR was also related to more hypervigilance to bodily symptoms. Parents with higher FCR reported contacting their child's doctors and nurses and scheduling medical appointments for their child more frequently. Children reported significantly lower FCR compared to parents. CONCLUSIONS: The FCRI-C and FCRI-P demonstrated strong reliability and preliminary validity. This study offers preliminary data to support the use of the FCRI-C and FCRI-P to measure FCR in survivors of childhood cancer aged 8-18 years and their parents.

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.

Quality of life among survivors of adolescent and young adult cancer in Canada: A Young Adults With Cancer in Their Prime (YACPRIME) study.

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 <$40,000 (adjusted odds ratio [AOR], 8.32; 95% CI, 2.85-24.30), poor sleep quality (AOR, 1.19; 95% CI, 1.06-1.33), worse body image (AOR, 1.08; 95% CI, 1.02-1.14), and higher social support (AOR, 1.02; 95% CI, 1.00-1.05) were significantly associated with poor physical health. Poor sleep quality (AOR, 1.22; 95% CI, 1.08-1.38), body image (AOR, 1.06; 95% CI, 1.01-1.12), fear of cancer recurrence (AOR, 1.13; 95% CI, 1.06-1.21) were associated with poor mental health. CONCLUSIONS: The QoL of AYAs requires urgent attention. Sleep, body image, and social support may be important modifiable targets for intervention to improve their QoL.

Pain in long-term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group.

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.

Adverse Childhood Experiences Moderate the Relationship Between Pain and Later Suicidality Severity Among Youth: A Longitudinal High-Risk Cohort Study.

Pain in adolescence can lead to the development of serious mental health issues, including suicidality. This risk may be strengthened among youth exposed to more adverse childhood experiences (ACEs; abuse, neglect, household challenges). This longitudinal study examined the role of ACEs in the relationship between pain and later suicidality onset and severity among a cohort of adolescents at risk for developing mental health problems. Participants were 139 healthy youth (Mage = 13.74 years, standard deviation = 1.56, 64% female) between the ages of 11 to 17 years, recruited based on parental history of depression or anxiety. Youth completed validated measures of internalizing symptoms, ACEs, and pain characteristics at baseline and follow-up diagnostic interviews 9 and/or 18 months later to assess for onset and severity of suicidality. After controlling for demographics, baseline internalizing symptoms, and ACEs, worse pain interference and increased ACEs at baseline predicted increased suicidality severity at follow-up. Moderation analyses revealed that there was a significant interaction between ACEs and pain interference and pain intensity. Increased pain interference (b = 7.65, P < .0001) or intensity (b = 6.96, P = .0003) was only associated with increased suicidality severity at follow-up in youth with high levels of ACEs. This study demonstrates that ACEs strengthen the relationship between pain and later suicidality severity among youth at risk of developing mental health problems. Findings underscore the critical need to adopt a trauma-informed lens to pediatric pain prevention and treatment (eg, screening for ACEs) and for the pain to be on the child's mental health agenda. PERSPECTIVE: This article provides evidence that, while pain is a risk factor for future increased suicidality severity, it is a particularly strong risk factor in youth who experienced increased childhood adversity. These results may help identify youth at greatest risk for suicidality.

Rural-urban differences in distress, quality of life, and social support among Canadian young adult cancer survivors: A Young Adults with Cancer in Their Prime (YACPRIME) study.

PURPOSE: Geographic location plays a significant role in the health and wellbeing of those with cancer. This project explored the impact of rurality and social support on distress and quality of life in young adults (YAs) with cancer in Canada. METHODS: The current research analyzed data from the Young Adults with Cancer in Their Prime (YACPRIME) study. Participants completed measures of emotional distress (10-item Kessler Psychological Distress Scale), quality of life (12-item Short-form Health Survey), and social support (Medical Outcomes Study-Social Support Survey). Rural and urban-dwelling survivors were compared using MANOVAs. Bivariate analyses were conducted to explore associations between distress and social support. FINDINGS: Of the sample (N = 379), 26% identified their location as rural. Rural YA cancer survivors reported higher distress and worse physical health-related quality of life (HRQOL) than survivors from urban areas but similar levels of mental-health-related quality of life. Social support appeared to have a marginally greater effect on psychosocial outcomes for urban participants. All types of social support were associated with lower levels of distress. However, different types of social support were associated more strongly with distress depending on a participant's geography. CONCLUSIONS: Rural-dwelling YA cancer survivors experience significantly more distress and poorer physical HRQOL than urban-dwelling survivors. Different needs and preferences for social support may influence the psychological health of rural cancer survivors. Additional research is needed to determine how best to understand and address distress in rural YAs with cancer.

An Evaluation of Racial and Ethnic Representation in Research Conducted with Young Adults Diagnosed with Cancer: Challenges and Considerations for Building More Equitable and Inclusive Research Practices.

The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as "other," 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the "other" category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study.

PURPOSE: A cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality. METHODS: Canadian YAs (n = 359) diagnosed with cancer between ages 15-39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use. RESULTS: Participants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04). CONCLUSION: Psychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery.

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.

An Investigation of Social Status among Adolescents and Young Adults Who Have Been Diagnosed with Cancer in Canada.

BACKGROUND: Aims were to: (1) compare social status among AYAs diagnosed with cancer to a community population; (2) describe AYAs' change in employment/education status; and (3) examine predictors of social status. METHOD: Social status (i.e., education, employment, relationship status, and living arrangement) was captured from young adults diagnosed with cancer recruited via social media through a community-based organization from across Canada and randomly matched to a community sample by sex, age, province of residence, total household income and race/ethnicity at a ratio of 1:3. RESULTS: AYAs with cancer (N = 622) were an average of 4.45 (SD = 5.42) years from the completion of treatment and were less likely to be employed (χ2 = 96.35, p < 0.001) and more likely to be living at home with parents (χ2 = 17.00, p < 0.001). There were no differences in education or relationship status. Overall, 41% and 45% of AYAs reported quitting school or work, respectively. Non-metastatic disease (AOR 3.23, 95% CI 1.08-9.62), and better physical (AOR 1.07 95% CI 1.04-1.10) and mental quality of life (QOL)(AOR 1.06 95% CI 1.03-1.09), were associated with employment. Worse mental QOL (AOR 1.04 95% CI 1.01-1.07), less post-traumatic growth (AOR 1.01 95% CI 1.00-1.03), and social support (AOR 0.27, 95% CI 0.18-0.41) were associated with being single. Non-White race (AOR 3.19 95% CI 1.02-9.97) and less post-traumatic growth (AOR 0.97 95% CI 0.95-0.99) were associated with living with parents. CONCLUSIONS: AYAs diagnosed with cancer experience differences in attainment of employment and independent living compared to a community sample. These challenges may have implications for physical and mental QOL.

An investigation of cultural influences in survivors of paediatric cancer: a systematic review protocol.

INTRODUCTION: Paediatric 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 ANALYSIS: This 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 DISSEMINATION: Ethical 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 NUMBER: CRD42021234101.

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.

Long-term alterations in somatosensory functioning in survivors of childhood cancer.

ABSTRACT: Cancer and its treatment can have lasting consequences on somatosensation, including pain, which is often underrecognized and undertreated. Research characterizing the impact of cancer on pain and sensory processing in survivors of childhood cancer is scarce. This study aimed to quantify generalized differences in pain and sensory processing in survivors of childhood cancer compared with reference data using a standardized thermal and mechanical quantitative sensory testing (QST) protocol. The association between demographic, clinical (eg, leukemia vs other cancers and treatment exposures), and psychosocial (eg, anxiety and pain catastrophizing) variables and sensitivity to pain and sensory stimuli were also evaluated. Participants were 56 survivors of various types of childhood cancer (52% male, Mage = 13.5 years, SD = 3.2, range = 8-17 years). On average, children were 7 years (SD = 4.1, range = 1.2-16.5) post treatment. Almost all participants (86%) had at least 1 abnormal QST parameter compared with age- and sex-matched reference data; however, few participants self-reported the presence of sensory abnormalities. Generally, participants exhibited reduced sensitivity across the QST parameters examined (Ps < 0.05, ds = 0.40-3.45). A significant minority (45%) also exhibited pain sensitization (P <0.001, d = 0.42). Several risk factors for changes in sensory processing were identified, including current age, history of leukemia, certain treatment exposures (eg, vincristine cumulative dose, major surgery, and bone marrow or stem cell transplant), time off treatment, and higher anxiety and pain catastrophizing scores. Overall, this study demonstrated that somatosensory changes are prevalent in survivors of childhood cancer years after the completion of treatment. Future research is needed to understand long-term implications of altered somatosensation in this complex population.