Neuroblastoma survivors' self-reported late effects, quality of life, health-care use, and risk perceptions.

BACKGROUND: Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care. METHODS: Young neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors' late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants' experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data. RESULTS: Thirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2-1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%, χ2 = 13, p < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects. CONCLUSION: Many neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.

A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.

Prospective assessment of vincristine-induced peripheral neuropathy in paediatric acute lymphoblastic leukemia.

OBJECTIVE: Vincristine is a mainstay treatment for paediatric cancers, particularly acute lymphoblastic leukemia (ALL), with common toxicity including vincristine-induced peripheral neuropathy (VIPN). The present study comprehensively assessed VIPN outcomes in patients receiving vincristine treatment for ALL. METHODS: Children diagnosed with ALL commencing vincristine treatment were prospectively evaluated (baseline, post-induction, pre-reinduction, post-reinduction, follow-up). VIPN was examined clinically using the Balis sensory/motor scale, neurophysiologically using axonal excitability techniques and quality-of-life using Pediatric Quality of Life Inventory. RESULTS: Thirty-one patients were recruited to this study (age = 6.8 ± 4.4; 61.3% female). Incidence of motor VIPN (motor Balis grade > 0) symptoms were higher than sensory VIPN (sensory Balis grade > 0) at post-induction (92.0% vs 36.0%) and post-reinduction (81.8% vs 22.7%) vincristine treatment. Neurophysiological assessment also demonstrated greater change in motor axonal excitability parameters compared to sensory parameters including changes in depolarising threshold electrotonus (P < 0.0125), superexcitability and subexcitability parameters (all P < 0.0125). Follow-up assessment demonstrated persisting VIPN symptoms with reduced quality-of-life scores compared to baseline. CONCLUSIONS: Clinical and neurophysiological evaluation of VIPN suggests vincristine produces a motor-prominent sensorimotor neuropathy in children which persisted at follow-up. SIGNIFICANCE: VIPN signs and symptoms develop early in the treatment course, in line with axonal excitability profiles. Early detection of significant nerve changes may support timely implementation of neuroprotection strategies.

sPinal cOrd neUromodulatioN to treat Cerebral palsy in pEdiatrics: POUNCE Multisite Randomized Clinical Trial.

Introduction: Cerebral palsy (CP) affects up to 4 children in 1,000 live births, making it the most common motor disorder in children. It impairs the child's ability to move voluntarily and maintain balance and posture, and results in a wide range of other functional disorders during early development impairments in various sensory modalities, e.g., vision, hearing ability and proprioception. Current standard of care therapy focuses on symptom management and does not mitigate the progression of many of these underlying neurological impairments. The goal of this trial is to conduct a prospective multicenter, double-blinded, sham-controlled, crossover, randomized control trial to demonstrate the safety and efficacy of noninvasive spinal cord neuromodulation (SCiP™, SpineX Inc.) in conjunction with activity-based neurorehabilitation therapy (ABNT) to improve voluntary sensorimotor function in children with cerebral palsy. Methods and analysis: Sixty participants (aged 2-13 years) diagnosed with CP classified as Gross Motor Function Classification Scale Levels I-V will be recruited and divided equally into two groups (G1 and G2). Both groups will receive identical ABNT 2 days/wk. G1 will initially receive sham stimulation, whereas G2 will receive therapeutic SCiP™ therapy for 8 weeks. After 8 weeks, G1 will cross over and receive therapeutic SCiP™ therapy for 8 weeks, whereas G2 will continue to receive SCiP™ therapy for another 8 weeks, for a total of 16 weeks. Primary and secondary outcome measures will include Gross Motor Function Measure-88 and Modified Ashworth Scale, respectively. Frequency and severity of adverse events will be established by safety analyses. Ethics and dissemination: The trial is registered on clinicaltrials.gov (NCT05720208). The results from this trial will be reported on clinicaltrials.gov, published in peer-reviewed journals and presented at scientific and clinical conferences.

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.

Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice.

Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness-yes/no, helpfulness and whether content caused stress-1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested.

Childhood Cancer Survivors' Reported Late Effects, Motivations for Seeking Survivorship Care, and Patterns of Attendance.

BACKGROUND: Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics. METHODS: This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care. RESULTS: A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P < .001), less time had elapsed since their diagnosis (P < .001), or they reported a higher number of motivating factors (P = .016). CONCLUSION: Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care.

Sexual and reproductive complications and concerns of survivors of childhood, adolescent and adult cancer.

PURPOSE: Cancer survivors may experience infertility and sexual dysfunction following cancer treatment. Survivors report significant gaps in oncofertility care and consider these issues important, yet they are rarely discussed. The aims of this study were to evaluate survivors' sexual and reproductive complications across age groups and to identify specific groups of survivors at risk for sexual and reproductive complications. METHOD: We report data collected from survivors of cancers diagnosed in childhood, adolescence and adulthood following the development and piloting of a reproductive survivorship patient reported outcome measure (RS-PROM). RESULTS: One hundred and fifty survivors participated in the study (mean age at cancer diagnosis was 23.2 years [SD, 10.3 years]). About 68% of participants expressed concerns about their sexual health and function. Survivors (50%) expressed at least one body image concern, with the female gender the most common risk factor for all subgroups. A total of 36% of participants reported at least one concern regarding their fertility, with more male than female survivors reporting fertility preservation prior to treatment. Females compared with male participants were more likely to feel less physically attractive after treatment (OR = 3.83, 95% CI = 1.84-7.95, p < 0.001). More females than males were also more likely to feel dissatisfied with the appearance of a scar(s) after treatment (OR = 2.36, 95% CI = 1.13-4.91, p = 0.02). CONCLUSION: The RS-PROM identified multiple reproductive complications and concerns for cancer survivors in the survivorship period. IMPLICATIONS FOR CANCER SURVIVORS: Utilising the RS-PROM in conjunction with a clinic appointment could help identify and address cancer patients' concerns and symptoms.

'Like ships in the night': A qualitative investigation of the impact of childhood cancer on parents' emotional and sexual intimacy.

BACKGROUND: Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy. METHODS: We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis. RESULTS: At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience. CONCLUSIONS: Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.

Childhood cancer survivorship care: A qualitative study of healthcare providers' professional preferences.

Purpose: Childhood cancer survivorship care is a complex specialty, though it is increasingly being integrated into the general practitioner's (GP) remit. Establishing the essential components of tertiary- and primary-led care, to maximize the benefits and overcome the challenges inherent to each, is essential to inform the development of survivor-centered, sustainable care models. Methods: We used the qualitative principles of semi-structured interviewing, verbatim transcription, coding (supported by NVivo12) and thematic analysis, to collect and evaluate the views and preferences of pediatric oncologists, survivorship nurse coordinators, and GPs currently caring for childhood cancer survivors. Results: Seventy healthcare providers (19 oncology staff and 51 GPs) from 11 tertiary hospitals and 51 primary practices across Australia and New Zealand participated. Participants reported specialist expertise and holistic family-centered care as the key benefits of tertiary and primary care respectively. Participants reported that tertiary-led survivorship care was significantly challenged by a lack of dedicated funding and costs/travel burden incurred by the survivor, whereas primary-led survivorship care was challenged by insufficient GP training and GPs' reliance on oncologist-developed action plans to deliver guideline-based care. GPs also reported a need for ongoing access to survivorship expertise/consultants to support care decisions at critical times. The discharge of survivors into primary care limited late-effects data collection and the rapid implementation of novel research findings. Conclusions: Healthcare professionals report that while a risk-stratified, collaborative model of survivor-centered care is optimal, to be implemented successfully, greater provisions for the ongoing engagement of GPs and further access to GP education/training are needed.

"It just never ends": Childhood cancer survivors' perceived psychosocial impacts of recurrence and second cancer.

OBJECTIVES: Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors' engagement with survivorship care. METHODS: We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12. RESULTS: We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care. SIGNIFICANCE OF RESULTS: Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors' anxieties about their future health.

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.

A Digital Educational Intervention With Wearable Activity Trackers to Support Health Behaviors Among Childhood Cancer Survivors: Pilot Feasibility and Acceptability Study.

BACKGROUND: Childhood cancer survivors are at increased risk of cardiometabolic complications that are exacerbated by poor health behaviors. Critically, many survivors do not meet physical activity guidelines. OBJECTIVE: The primary aim was to evaluate the feasibility and acceptability of iBounce, a digital health intervention for educating and engaging survivors in physical activity. Our secondary aims were to assess the change in survivors' physical activity levels and behaviors, aerobic fitness, and health-related quality of life (HRQoL) after participating in the iBounce program. METHODS: We recruited survivors aged 8 to 13 years who were ≥12 months post cancer treatment completion. The app-based program involved 10 educational modules, goal setting, and home-based physical activities monitored using an activity tracker. We assessed objective physical activity levels and behaviors using cluster analysis, aerobic fitness, and HRQoL at baseline and after the intervention (week 12). Parents were trained to reassess aerobic fitness at home at follow-up (week 24). RESULTS: In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments, and 23 (77%) commenced iBounce. Our opt-in rate was 59% (30/51), and most (19/23, 83%) of the survivors completed the intervention. More than half (13/23, 57%) of the survivors completed all 10 modules (median 10, IQR 4-10). We achieved a high retention rate (19/27, 70%) and activity tracker compliance (15/19, 79%), and there were no intervention-related adverse events. Survivors reported high satisfaction with iBounce (median enjoyment score 75%; ease-of-use score 86%), but lower satisfaction with the activity tracker (median enjoyment score 60%). Parents reported the program activities to be acceptable (median score 70%), and their overall satisfaction was 60%, potentially because of technological difficulties that resulted in the program becoming disjointed. We did not observe any significant changes in physical activity levels or HRQoL at week 12. Our subgroup analysis for changes in physical activity behaviors in participants (n=11) revealed five cluster groups: most active, active, moderately active, occasionally active, and least active. Of these 11 survivors, 3 (27%) moved to a more active cluster group, highlighting their engagement in more frequent and sustained bouts of moderate-to-vigorous physical activity; 6 (56%) stayed in the same cluster; and 2 (18%) moved to a less active cluster. The survivors' mean aerobic fitness percentiles increased after completing iBounce (change +17, 95% CI 1.7-32.1; P=.03) but not at follow-up (P=.39). CONCLUSIONS: We demonstrated iBounce to be feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity to engage survivors in physical activity at home and may address barriers to care, particularly for regional or remote families. We will use these pilot findings to evaluate an updated version of iBounce. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621000259842; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=ACTRN12621000259842.

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.

Long-term care for people treated for cancer during childhood and adolescence.

Worldwide advances in treatment and supportive care for children and adolescents with cancer have resulted in a increasing population of survivors growing into adulthood. Yet, this population is at very high risk of late occurring health problems, including significant morbidity and early mortality. Unique barriers to high-quality care for this group include knowledge gaps among both providers and survivors as well as fragmented health-care delivery during the transition from paediatric to adult care settings. Survivors of childhood and adolescent cancer are at risk for a range of late-occuring side-effects from treatment, including cardiac, endocrine, pulmonary, fertility, renal, psychological, cognitive, and socio-developmental impairments. Care coordination and transition to adult care are substantial challenges, but can be empowering for survivors and improve outcomes, and could be facilitated by clear, effective communication and support for self-management. Resources for adult clinical care teams and primary care providers include late-effects surveillance guidelines and web-based support services.

eHealth tools for childhood cancer survivorship care: A qualitative analysis of survivors', parents', and general practitioners' views.

Objective: We assessed the acceptability of, and perceived benefits/barriers to, using Electronic health (eHealth) technology for childhood cancer survivorship care. Methods: We interviewed survivors, their parents, and their nominated GP. We described a hypothetical eHealth tool to manage survivorship care and asked their likely use of, and perceived benefits/concerns for, the use of the tool. Results: 31 survivors (mean age = 27.0), 29 parents (survivors' mean age = 12.6), and 51 GPs (mean years practising = 28.2) participated. Most survivors/parents (85%) and GPs (75%) indicated that they would be willing to use an eHealth tool. Survivors/parents reported that an eHealth tool would increase their confidence in their ability, and their GP's ability, to manage their survivorship care. GPs agreed that an eHealth tool would provide easier access to survivors' medical information and increase their capacity to provide support during survivorship. Some GPs (7%) and survivors (43%) reported being hesitant to use eHealth tools due to privacy/security concerns. Conclusion: Overall, eHealth tools appear acceptable and may help to improve the management of late effects for childhood cancer survivors and assist their GPs to coordinate their care. Innovation: Concerns raised by key stakeholders should be addressed in the design of eHealth technologies to optimise their uptake and effectiveness.

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.

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.