Social Anxiety Symptoms in Adolescents and Young Adults Recently Diagnosed with Cancer.

Purpose: Social anxiety disorder (SAD) remains an understudied potential link between the cancer experience and adolescent and young adult (AYA) cancer survivors' poor psychosocial outcomes. We investigated the frequency and duration of, as well as factors associated with, symptoms of SAD among AYAs with cancer. Methods: This longitudinal, mixed-methods study involved online surveys (including a validated screening tool for SAD) at recruitment and 6 months later, and a structured clinical interview. Results: Twenty-eight AYAs (aged 12-30 years, <1-year postdiagnosis, 50% male) completed the first survey (M = 6 months postdiagnosis). About 32% reported clinically significant SAD symptoms. Fourteen completed the follow-up survey (M = 12 months postdiagnosis), of which 9 (62%) reported persistent or worse symptoms of SAD significantly associated with emotional distress, physical appearance concerns, negative social cognitions, and depression. Conclusion: A subset of AYAs with cancer may experience clinically significant SAD symptoms that can affect their psychosocial well-being. Further work on how to best identify and support AYAs with SAD is needed.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia.

More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and Medical Research Council guidance, we formed a multidisciplinary working group (n = 4 psychosocial researchers, n = 4 psychologists, n = 4 AYA cancer survivors, n = 2 oncologists, n = 2 nurses, and n = 2 social workers), defined the scope of the guidelines, gathered evidence via a systematic review, graded the evidence, and surveyed AYA cancer care providers about the feasibility and acceptability of the guidelines. The guidelines recommend which AYAs should have their social well-being assessed, who should lead that assessment, when assessment should occur with which tools/measures, and how clinicians can address AYAs' social well-being concerns. A key clinician, who is knowledgeable about AYAs' developmental needs, should lead the assessment of social well-being during and after cancer treatment. The AYA Psycho-Oncology Screening Tool is recommended to screen for social well-being needs. The HEADSSS Assessment (Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment) can be used for in-depth assessment of social well-being, while the Social Phobia Inventory can be used to assess social anxiety. AYA cancer care providers rated the guidelines as highly acceptable, but discussed many feasibility barriers. These guidelines provide an optimal care pathway for the social well-being of AYAs with cancer. Future research addressing implementation is critical to meet AYAs' social well-being needs.

Symptom Clusters in Survivorship and Their Impact on Ability to Work among Cancer Survivors.

BACKGROUND: Cancer survivors often experience a range of symptoms after treatment which can impact their quality of life. Symptoms may cluster or co-occur. We aimed to investigate how symptoms and symptom clusters impact the ability to work among cancer survivors. METHODS: We used symptom severity data and ability to work data routinely collected from cancer survivors attending a survivorship clinic after primary treatment with curative intent. We defined symptom clusters using single linkage and a threshold on the rescaled distances of <10. We then conducted a logistic regression to examine how symptoms and symptom clusters were related to the ability to work. RESULTS: We analysed data from 561 cancer survivors, mean age 58 years and 1.5 years post diagnosis, with mixed diagnoses including breast (40.5%), colorectal (32.3%), and haematological cancers (15.3%). Limitations to work ability were reported by 34.9% of participants. Survivors experiencing pain, emotional, and cognitive symptom clusters were 14-17% more likely to report limitations in their ability to work. Older survivors and those with a higher stage disease were more likely to report limitations in their ability to work. CONCLUSION: A better understanding and management of symptom severity and symptom clusters may help the sizable proportion of cancer survivors experiencing symptoms to participate in work after treatment.

Relationship between survivorship care plans and unmet information needs, quality of life, satisfaction with care, and propensity to engage with, and attend, follow-up care.

BACKGROUND: The impact of survivorship care plans (SCPs) on the proximal and distal outcomes of adult and childhood cancer survivors, and parent proxies, is unclear. This study aimed to determine the relationship between SCP receipt and these outcomes. METHODS: A cross-sectional survey of adult and childhood cancer survivors (and parent proxies for survivors aged younger than 16 years) across Australia and New Zealand was conducted. Multivariate regression models were fitted to measure the impact of SCP receipt on proximal (unmet information needs and propensity to engage with, and attend, cancer-related follow-up care) and distal outcomes (quality of life and satisfaction with cancer-related follow-up care) with control for cancer history and sociodemographic factors. RESULTS: Of 1123 respondents, 499 were adult cancer survivors and 624 were childhood cancer survivors (including 222 parent proxies). We found that SCP receipt was predictive of greater attendance at, and awareness of, cancer-related follow-up care (adult: odds ratio [OR], 2.46; 95% CI, 1.18-5.12; OR, 2.38; 95% CI, 1.07-5.29; child/parent: OR, 2.61; 95% CI, 1.63-4.17; OR, 1.63; 95% CI, 1.06-2.50; respectively). SCP receipt also predicted fewer unmet information needs related to "follow-up care required" and "possible late effects" (adult: OR, 0.44; 95% CI, 0.20-0.96; OR, 0.29; 95% CI, 0.13-0.64; child/parent: OR, 0.46; 95% CI, 0.30-0.72; OR, 0.57; 95% CI, 0.38-0.85; respectively). In terms of distal outcomes, SCP receipt predicted a better global quality of life for adult cancer survivors (ß, 0.08; 95% CI, -0.01-7.93), proxy-reported health-related quality of life (ß, 0.15; 95% CI, 0.44-7.12), and satisfaction with follow-up care for childhood cancer survivors (OR, 2.93; 95% CI, 1.64-5.23). CONCLUSIONS: Previous studies have shown little impact of SCPs on distal end points. Results suggest that SCPs may be beneficial to cancer survivors' proximal and distal outcomes.

Anxiety, depression, and concentration in cancer survivors: National Health and Nutrition Examination Survey results.

PURPOSE: We report on prevalence of anxiety, depression, and concentration difficulties and their associations in survivors of cancer in a nationally representative sample up to 25 years after diagnosis. METHODS: Using the National Health and Nutrition Examination Survey (NHANES) data from 2015 to 2018, participants between the ages of 18 and 79 self-reported on cancer history, symptoms of anxiety, depression, and difficulties with concentration. RESULTS: Of 10,337 participants, 691 (6.7%) reported a previous diagnosis of cancer; the median time since diagnosis was 8 years. Prevalence was similar between those with and without cancer for anxiety (45.8% versus 46.9%) and depression (19.7% versus 20.0%). Concentration difficulties were more common (11.3% versus 9.0%) for those with a history of cancer compared to those without (adjusted OR = 1.38, 95% CI: 1.00-1.90). Prevalence of mental health symptoms was not related to time since diagnosis. Anxiety and depression were highly correlated (r = 0.81, 95% CI: 0.74-0.86) and moderately correlated with difficulty with concentration (r = 0.52, 95%CI: 0.40-0.64 and r = 0.64, 95% CI: 0.53-0.74 respectively). CONCLUSIONS: Difficulty with concentration was more commonly reported by participants with than without a cancer history. Report of anxiety and depression was no different between participants with and without a history of cancer. Anxiety, depression, and difficulties with concentration were strongly related. Further research is needed to explore if there is a causal association, and if so, the direction of these correlations, so that interventions may be appropriately targeted.

Impact of Hospitalizations due to Chronic Health Conditions on Early Child Development.

OBJECTIVE: To assess the impact of hospitalization for chronic health conditions on early child development and wellbeing at school start. METHODS: We conducted a longitudinal cohort study of children starting school using population-based record linkage of routinely collected admitted hospital data and standardized assessment of early childhood development (Australian Early Developmental Census: AEDC). Developmental vulnerability (DV) was defined as children scoring <10th centile in any one of five developmental domains. Children scoring <10th centile on two or more domains were considered developmentally high-risk (DHR). Children hospitalized with chronic health conditions were compared to children without hospitalizations prior to school start. RESULTS: Among 152,851 children with an AEDC record, 22,271 (14·6%) were hospitalized with a chronic condition. Children hospitalized with chronic health conditions were more likely to be DHR (adjusted odds ratio 1.25, 95% CI: 1.18-1.31) compared to children without hospitalizations. Children hospitalized more frequently (>7 times) or with longer duration (>2 weeks) had a 40% increased risk of being DHR (1.40, 95% CI: 1.05-1.88 and 1.40, 95% CI: 1.13-1.74, respectively). Children hospitalized with mental health/behavioral/developmental conditions had the highest risk of DHR (2.23, 95% CI: 1.72-2.90). Developmental vulnerability was increased for physical health (1.37, 95% CI: 1.30-1.45), language (1.28, 95% CI: 1.19-1.38), social competence (1.22, 95% CI: 1.16-1.29), communication (1.17, 95% CI: 1.10-1.23), and emotional maturity (1.16, 95% CI: 1.09-1.23). CONCLUSIONS: Frequent and longer duration hospitalizations for chronic health conditions can impact early childhood development. Research and interventions are required to support future development and well-being of children with chronic health conditions who are hospitalized.

Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer.

Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program's precision medicine trial for high-risk childhood cancer. We assessed patient QoL via self-report (aged 12-17 years) and parent-proxy (aged 4-17 years) completion of the EQ-5D-Y. We analysed data using descriptive statistics and regression models. Patients (n = 23) and parents (n = 136) provided data after trial enrolment and following receipt of trial results and treatment recommendations (n = 8 patients, n = 84 parents). At enrolment, most patients were experiencing at least some difficulty across more than one QoL domain (81% patient self-report, 83% parent report). We did not find strong evidence of a change in QoL between timepoints, or of demographic or disease factors that predicted parent-reported patient QoL (EQ-VAS) at enrolment. There was strong evidence that receiving a treatment recommendation but not a change in cancer therapy was associated with poorer parent-reported patient QoL (EQ-VAS; Mdiff = -22.5, 95% CI: -36.5 to -8.5, p = 0.006). Future research needs to better understand the relationship between treatment decisions and QoL and would benefit from integrating assessment of QoL into routine clinical care.

Prospective longitudinal evaluation of treatment-related toxicity and health-related quality of life during the first year of treatment for pediatric acute lymphoblastic leukemia.

BACKGROUND: Pediatric acute lymphoblastic leukemia (ALL) therapy is accompanied by treatment-related toxicities (TRTs) and impaired quality of life. In Australia and New Zealand, children with ALL are treated with either Children's Oncology Group (COG) or international Berlin-Frankfurt-Munster (iBFM) Study Group-based therapy. We conducted a prospective registry study to document symptomatic TRTs (venous thrombosis, neurotoxicity, pancreatitis and bone toxicity), compare TRT outcomes to retrospective TRT data, and measure the impact of TRTs on children's general and cancer-related health-related quality of life (HRQoL) and parents' emotional well-being. METHODS: Parents of children with newly diagnosed ALL were invited to participate in the ASSET (Acute Lymphoblastic Leukaemia Subtypes and Side Effects from Treatment) study and a prospective, longitudinal HRQoL study. TRTs were reported prospectively and families completed questionnaires for general (Healthy Utility Index Mark 3) and cancer specific (Pediatric Quality of Life Inventory (PedsQL)-Cancer Module) health related quality of life as well the Emotion Thermometer to assess emotional well-being. RESULTS: Beginning in 2016, 260 pediatric patients with ALL were enrolled on the TRT registry with a median age at diagnosis of 59 months (range 1-213 months), 144 males (55.4%), majority with Pre-B cell immunophenotype, n = 226 (86.9%), 173 patients (66.5%) treated according to COG platform with relatively equal distribution across risk classification sub-groups. From 2018, 79 families participated in the HRQoL study through the first year of treatment. There were 74 TRT recorded, reflecting a 28.5% risk of developing a TRT. Individual TRT incidence was consistent with previous studies, being 7.7% for symptomatic VTE, 11.9% neurotoxicity, 5.4% bone toxicity and 5.0% pancreatitis. Children's HRQoL was significantly lower than population norms throughout the first year of treatment. An improvement in general HRQoL, measured by the HUI3, contrasted with the lack of improvement in cancer-related HRQoL measured by the PedsQL Cancer Module over the first 12 months. There were no persisting differences in the HRQoL impact of COG compared to iBFM therapy. CONCLUSIONS: It is feasible to prospectively monitor TRT incidence and longitudinal HRQoL impacts during ALL therapy. Early phases of ALL therapy, regardless of treatment platform, result in prolonged reductions in cancer-related HRQoL.

Childhood Cancer Survivors' Adherence to Healthcare Recommendations Made Through a Distance-Delivered Survivorship Program.

Purpose: Ongoing survivorship care allows childhood cancer survivors the opportunity to address treatment-related health problems and improve their quality of life. However, many survivors do not adhere to their healthcare professionals' recommendations and the factors supporting their adherence remain unclear. Patients and Methods: Long-term childhood cancer survivors completed the "Re-engage" program, which assessed survivors' heath needs and provided individualised recommendations for health interventions and surveillance developed by an expert multi-disciplinary team (MDT). We measured survivors' recall of, and adherence to, their individualised healthcare recommendations at one and six months post-intervention. We conducted a series of univariate negative binomial regressions to investigate factors associated with the total number of recommendations that were correctly recalled and adhered to. Results: We analysed the data of 25 childhood cancer survivors who participated in Re-engage (mean age = 31.9 years). On average, survivors were provided with 6.6 recommendations (range = 1-11). Survivors accurately recalled receiving 3.0 recommendations at one month post-intervention and 1.9 at six months. Survivors had adhered to an average of 1.3 recommendations by six-month follow-up. In total, 56% of participants reported that they did not adhere to any recommendations. By six-month follow-up, greater adherence to MDT recommendations was associated with having a history of a second cancer (B = 1.391; 95% confidence interval [CI], 0.686 to 2.097; p < 0.001) and reporting a greater level of worry about late effects (B = 1.381; 95% CI, 0.494 to 2.269; p = 0.002). Conclusion: Survivors reported sub-optimal levels of adherence and demonstrated limited recall of their healthcare recommendations. Effective communication of recommendations and clear discussion of barriers limiting adherence, coupled with late effects education, may be critical to ensure that survivors engage with their recommendations, to improve their quality of life and health outcomes. Trial Registration Number: ACTRN12618000194268.

Parent perceptions of their child's and their own physical activity after treatment for childhood cancer.

PURPOSE: Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child's physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors. METHODS: We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment. RESULTS: Parents and survivors self-reported median (range) of 127.5 (0-1260) and 220 (0-1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage. CONCLUSIONS: Physical activity levels varied widely among survivors, reflecting factors including parents' lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors' insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.

Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence.

PURPOSE: Approximately 50% of cancer survivors experience moderate-severe fear of cancer recurrence (FCR). Self-guided digital interventions have potential to address the high level of FCR-related unmet needs at scale, but existing digital interventions have demonstrated variable engagement and efficacy. This study aimed to evaluate the feasibility and preliminary efficacy of iConquerFear, a five-module self-guided digital FCR intervention. METHODS: Eligible curatively treated breast cancer survivors were recruited. Participants reporting clinically significant FCR (≥ 13 on the Fear of Cancer Recurrence Inventory-Short Form; FCRI-SF) were given access to iConquerFear. Feasibility was indicated by > 50% of eligible participants enrolling in iConquerFear and recording moderate (≥ 120 min) or greater usage. Preliminary efficacy was evaluated via changes in self-reported FCR severity, anxiety, depression, intrusions and metacognitions from baseline to immediately and 3 months post-intervention. RESULTS: Fifty-four (83%) of 65 eligible participants enrolled in iConquerFear; six subsequently withdrew. Thirty-nine (83%) participants recorded moderate (n = 24; 120-599 min) or high (n = 15; ≥ 600 min) usage. Engagement levels increased with participant age (p = 0.043), but were lower in participants with higher baseline FCR (p = 0.028). Qualitative feedback indicated engagement was sometimes limited by difficulties with navigation and relating to featured survivors. Participants reported significantly improved FCR (mean reduction (95%CI): baseline to post-intervention - 3.44 (- 5.18, - 1.71), baseline to 3-month follow-up - 4.52 (- 6.25, - 2.78), p = < 0.001). CONCLUSION: iConquerFear is a feasible and potentially efficacious intervention for reducing FCR in breast cancer survivors. Easier navigation and more relatable examples may enhance engagement. IMPLICATIONS FOR CANCER SURVIVORS: iConquerFear may help address moderate but burdensome FCR levels in cancer survivors.

Screening for cognitive symptoms among cancer patients during chemotherapy: Sensitivity and specificity of a single item self-report cognitive change score.

OBJECTIVES: Cognitive symptoms are commonly reported among cancer patients and survivors, yet guidance on when self-reported cognitive symptoms warrant follow-up is lacking. We sought to establish cut-off scores for identifying patients with perceived low cognitive functioning on widely used self-report measures of cognition and a novel single item Cognitive Change Score. METHODS: Adult patients diagnosed with invasive cancer who had completed at least one cycle of chemotherapy completed a questionnaire containing the EORTC-Cognitive Function (CF) subscale, Functional Assessment of Cancer Therapy-Cognitive Function (FACT-COG) Perceived Cognitive Impairment (PCI) and our Cognitive Change Score (CCS). We used receiver operating characteristic analyses to establish the discriminative ability of these measures against the Patient's Assessment of Own Functioning Inventory (PAOFI) as our reference standard. We chose cut-off scores on each measure that maximised both sensitivity and specificity for identifying patients with self-reported low CF. RESULTS: We recruited 294 participants (55.8% women, mean age 56.6 years) with mixed cancer diagnoses (25.5 months since diagnosis). On the CCS, 77.6% reported some cognitive change since starting chemotherapy. On the PAOFI 36% had low CF. The following cut-off scores identified cases of low CF: ≥28.5 on the CCS (75.5% sensitivity, 67.6% specificity); ≤75.0 on the European Organisation for Research and Treatment of Cancer, QLQ-C30 Cognitive Functioning scale (90.9% sensitivity, 57.1% specificity); ≤55.1 on the FACT-COG PCI-18 (84.8% sensitivity, 76.2% specificity), and ≤59.5 on the FACT-COG PCI-20 (78.8% sensitivity, 84.1% specificity). CONCLUSIONS: We found a single item question asking about cognitive change has acceptable discrimination between patients with self-reported normal and low CF when compared to other more comprehensive self-report measures of cognitive symptoms. Further validation work is required.

Childhood cancer survivorship: barriers and preferences.

OBJECTIVE: Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors' barriers to accessing, and preferences for survivorship care. METHODS: We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16-25 years (adolescent and young adults (AYAs)) and >25 years ('older survivors'). Participants completed questionnaires and optional interviews. RESULTS: 633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%-97%). Many (36%-58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors' prevalence of late effects increased. Of those attending a follow-up clinic, 34%-56% were satisfied with their care, compared with 14%-15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers. CONCLUSIONS: Understanding patient-reported barriers, and tailoring care to survivors' follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.

School academic performance of children hospitalised with a chronic condition.

OBJECTIVE: To examine academic outcomes among children hospitalised with a chronic health condition. DESIGN: Population-level birth cohort. SETTING: New South Wales, Australia. PARTICIPANTS: 397 169 children born 2000-2006 followed up to 2014. INTERVENTION/EXPOSURE: Hospitalisations with a chronic condition. MAIN OUTCOME MEASURES: Academic underperformance was identified as 'below the national minimum standard' (BNMS) in five literacy/numeracy domains using the national assessment (National Assessment Program-Literacy and Numeracy) data. Multivariable logistic regression assessed the adjusted ORs (aORs) of children performing BNMS in each domain at each grade (grades 3, 5 and 7, respectively). RESULTS: Of children hospitalised with a chronic condition prior to National Assessment Program-Literacy and Numeracy (NAPLAN) (16%-18%), 9%-12% missed ≥1 test, with a maximum of 37% of those hospitalised ≥7 times, compared with 4%-5% of children not hospitalised. Excluding children who missed a NAPLAN test, more children hospitalised with a chronic condition performed BNMS across all domains and grades, compared with children not hospitalised (eg, for BNMS in reading at grade 3: n=2588, aOR 1.35 (95% CI 1.28 to 1.42); for BNMS in numeracy at grade 3: n=2619, aOR 1.51 (95% CI 1.43 to 1.59)). Increasing frequency and bed-days of hospitalisation were associated with 2-3 fold increased odds of performing BNMS across all domains and grades. Children hospitalised with mental health/behavioural conditions had the highest odds of performing BNMS across all domains at each grade. CONCLUSIONS: Children hospitalised with a chronic condition underperform academically across literacy/numeracy domains at each school grade. Health and educational supports are needed to improve these children's academic outcomes.

"We Have All This Knowledge to Give, So Use Us as a Resource": Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities.

Purpose: Involvement of adolescent and young adult (AYAs) cancer survivors as consumers in research is increasingly encouraged, yet few studies have identified the feasibility and acceptability of methods used to involve them. We aimed to identify: (1) How feasible and acceptable is a consumer-driven, workshop-based research priority-setting approach? And (2) what research priorities do Australian AYA consumers endorse? Methods: AYA cancer survivors diagnosed 15-30 years old and currently younger than 35 years were invited to participate. The AYAs completed a pre-workshop survey to rank their top three priorities from the United Kingdom-based James Lind Alliance list, participated in a 90-minute focus group, and completed a post-workshop evaluation survey. We assessed the workshop feasibility by reviewing considerations, challenges, and enablers of success in the planning and conduct processes. Acceptability was assessed through participants' evaluation surveys and facilitators' informal reflections. The top three priorities were determined from pre-workshop surveys and focus group data. Results: Six survivors participated (M age = 24.2 years, M = 5 years post-treatment, 83% female). All reported that the workshop was an acceptable way to engage with researchers. Costs and recruitment challenges limited the workshop's feasibility. The AYAs' top priority was: What psychological support package improves psychological well-being, social functioning, and mental health during and after treatment?Discussion: The AYA survivors found our workshop to be an acceptable way to engage in research priority-setting. However, the feasibility of this approach depends on the resources available to researchers. Future research is needed to define the optimal method of engagement: What is most acceptable for AYAs and feasible for researchers?

Social Anxiety Symptoms in Survivors of Childhood and Adolescent Cancer.

Purpose: Adolescent and young adult (AYA) cancer survivors may be at risk of developing symptoms of social anxiety disorder (SAD) due to disruptions in social participation and functioning following a cancer diagnosis. This study aimed to explore (1) the proportion of Australian AYA-aged survivors of childhood and adolescent cancer who experience symptoms of SAD, (2) how symptoms of SAD are described by survivors as affecting their daily social functioning. Methods: A mixed-methods cross-sectional design was employed, inviting survivors, aged 13-25 years, who had completed treatment between one and ten years ago. Survivors completed a paper-based questionnaire, containing validated measures of SAD, and an optional semistructured interview assessing current social functioning and social anxiety. Results: Twenty-seven survivors aged 13-25 years participated (M = 19.15, 51.9% male, and 7 years post-treatment). Nine (33%) participants reported clinically significant symptoms of SAD. In interviews, survivors reported worries about how others perceived them and fears around meeting new people. Survivors described that this impacted their daily social functioning, leading them to avoid, or endure with distress, feared social situations. Conclusion: This study shows that clinically significant social anxiety may be a concern for a subset of survivors of childhood/adolescent cancer. Identifying which young people are at risk of SAD after cancer and how best to support this vulnerable cohort is critical.

Long-term health-related quality of life in young childhood cancer survivors and their parents.

PURPOSE: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. METHODS: We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. RESULTS: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. CONCLUSIONS: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.