Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes.

PURPOSE: This study aimed to systematically map elements of care and respective outcomes described in the literature for different models of post-treatment care for survivors of childhood cancer. METHODS: MEDLINE, CINAHL, and Embase were searched with combinations of free text terms, synonyms, and MeSH terms using Boolean operators and are current to January 2024. We included studies that described post-treatment cancer survivorship models of care and reported patient or service level elements of care or outcomes, which we mapped to the Quality of Cancer Survivorship Care Framework domains. RESULTS: Thirty-eight studies with diverse designs were included representing 6101 childhood cancer survivors (or their parent/caregiver) and 14 healthcare professionals. A diverse range of models of care were reported, including paediatric oncologist-led long-term follow-up, multi-disciplinary survivorship clinics, shared-care, and primary care-led follow-up. Elements of care at the individual level most commonly included surveillance for cancer recurrence as well as assessment of physical and psychological effects. At the service level, satisfaction with care was frequently reported but few studies reported how treatment-related-late effects were managed. The evidence does not support one model of care over another. CONCLUSIONS: Gaps in evidence exist regarding distal outcomes such as costs, health care utilization, and mortality, as well as understanding outcomes of managing chronic disease and physical or psychological effects. The findings synthesized in this review provide a valuable reference point for future service planning and evaluation. IMPLICATIONS FOR CANCER SURVIVORS: Decades of research highlight the importance of survivorship care for childhood cancer survivors who are at risk of serious treatment-related late effects. This review emphasizes there is no single, 'one-size fits all' approach for delivering such care to this vulnerable population.

Quality of life and family functioning soon after paediatric brain tumour diagnosis: A cross-sectional observational study.

PURPOSE: There is scant scholarly exploration of quality of life in families with a child who has a brain tumour early after diagnosis, despite this being a pivotal point in their illness trajectory. We aimed to describe quality of life in children and their parents, and family functioning, within six months of diagnosis; and to examine if this differed for various subpopulations. METHOD: This is a cross-sectional analysis of baseline data of an ongoing longitudinal survey. Parents/carers of a child who had a diagnosis of a malignant or non-malignant brain tumour and were receiving care at the Queensland Children's Hospital were invited to complete an electronic survey. Univariate analyses were conducted with potential covariates and each dependent variable (child quality of life, caregiver quality of life, family functioning). Potential relationships between the outcome variables were explored through Pearson's correlation coefficient. RESULTS: Seventy-nine diverse families completed the survey between August 2020 and September 2022. Caregiver quality of life did not differ by the child's tumour risk grade. It was lowest for those with a child who had undergone chemotherapy and/or radiation compared to surgery only, and for those with a child who had been diagnosed 6 months prior to survey completion compared to more recent diagnoses. A third of families reported problematic family functioning. Lower levels of problematic family functioning were associated with higher caregiver quality of life (r = -.49, p < .001). CONCLUSIONS: Our findings suggest caregivers need greater psychosocial support early after diagnosis, and supports the need for family-centred care that fosters communication and cohesiveness.

Associations between Health Behaviors, Health Self-Efficacy, and Long-Term Outcomes in Survivors of Childhood Cancer: A Cross-Sectional Study.

OBJECTIVES: Many survivors of childhood cancer experience multiple long-term chronic health conditions. Health behaviors are important because they contribute to chronic disease yet are highly modifiable. With growing pressure on cancer services, alternative models of care are required to address survivorship care needs. The authors sought to inform the development of a community-based model of cancer survivorship care for young people. This exploratory cross-sectional study aimed to assess the feasibility of study measures and processes, as well as investigate associations between various modifiable health behaviors, health self-efficacy, quality of life, and persistent symptoms. DATA SOURCES: Participants were recruited from a long-term follow-up clinic for childhood cancer survivors. A self-report survey was completed, and participants received an activity tracker. Bivariate regression analyses were used to explore the relationship between variables. CONCLUSIONS: The study measures and processes were deemed feasible with >70% of eligible survivors enrolling in the study and completing >70% of study measures. Thirty participants (mean age 22 ± 4.4 years) were enrolled; 83.3% finished treatment ≥5 years previously and 36.7% were overweight or obese. Bivariate regression identified those with higher scores of health self-efficacy were more likely to meet physical activity guidelines, as were those who achieved more sleep and consumed greater servings of vegetables. Meeting the physical activity guidelines, was significantly positively associated with higher quality of life and self-efficacy. IMPLICATIONS FOR NURSING PRACTICE: Interventions that target health self-efficacy have the potential to improve a range of health behaviors and long-term outcomes for survivors of childhood cancer. Nurses are ideally placed to use this knowledge to support patients with recommendations to optimise their recovery and rehabilitation.

Supporting families through paediatric brain tumour: Unmet needs and suggestions for change.

OBJECTIVE: From diagnosis and beyond, a paediatric brain tumour and its treatment impact the child and their family in a myriad of ways. While it is considered best practice to offer ongoing psychosocial support for all family members, there is little scholarly investigation of both families' experiences and the practical implications of offering such care. We aimed to explore families' experiences of paediatric brain tumour and their associated psychosocial health service needs. METHODS: Families receiving care at the Queensland Children's Hospital in Brisbane, Australia, for a child (0-18 years) who had been diagnosed with a brain tumour between 2019 and 2022 were invited to be interviewed about their experiences. Using qualitative description, we analysed these interviews to identify families' unmet psychosocial health service needs and their suggestions for improvement. RESULTS: Twenty-three clinically and socially diverse families were represented. While parents/carers expressed gratitude for the care their child had received, most also described unmet needs for the broader family. We identified three primary needs to be addressed: (1) parents want accessible psychological/emotional support for themselves; (2) parents/carers want additional guidance to navigate the hospital setting to reduce uncertainty and loss of control; and (3) parents want support to minimise treatment-associated trauma for their child. CONCLUSIONS: Our findings evidence the need for improved family-centred psychosocial care within paediatric brain tumour care in Queensland, Australia. We propose a counselling and care coordination intervention to support parents/carers to care for themselves, their child, and their family through an extremely challenging experience.

Persistent Symptoms, Quality of Life, and Correlates with Health Self-Efficacy in Adolescent and Young Adult Survivors of Childhood Cancer.

Purpose: The numbers of adolescent and young adult (AYA) survivors of childhood cancer are exponentially growing. To ensure suitable services are available to meet the needs of this growing population, understanding the experience of late effects, quality of life, and potentially modifiable factors, such as self-efficacy, is required. Methods: AYA survivors of childhood cancer recruited through an After Cancer Therapy Service at a Children's Hospital rated their symptoms experience, quality of life, and self-efficacy using the Patient Reported Outcome Common Terminology Criteria for Adverse Events, Functional Assessment of Cancer Therapy-General (FACT-G), and Patient-Reported Outcomes Measurement Information System (PROMIS®), respectively. Descriptive statistics were used to characterize the sample. Quality-of-life scores were compared with population norms. Regression analyses were used to explore the relationships between symptom experience, quality of life, and self-efficacy. Results: Thirty participants (mean age 22 ± 4.4 years) reported an average of nine symptoms as persistently experienced at moderate or higher rated intensity among participants (standard deviation ±8.7; range: 0-32; interquartile range: 2-16); over half (n = 17, 56.7%) had finished treatment 10 or more years ago. Participants scored lower on the FACT-G Physical Well-being and Emotional Well-being, and higher on Social Well-being subscales than the general population. Around two-thirds of participants were confident in their ability to self-manage their health based on their health self-efficacy score. Bivariate linear regression identified a statistically significant increase in the overall quality of life with increased self-efficacy, adjusted for age and sex (0.60, 95% confidence interval [CI] 0.30-0.90, p < 0.01). Higher symptom burden was associated with a lower overall quality of life after adjusting for age and sex (-0.95, 95% CI: -1.35 to -0.54, p < 0.001). Conclusion: Young cancer survivors experience a substantial number of persistent symptoms related to their cancer treatment that may negatively impact aspects of their quality of life. Health self-efficacy is a potential target for future interventions.

Coping with cancer: A qualitative study of adolescent and young adult perspectives.

OBJECTIVES: Cancer can have long-term biopsychological impacts for young people that persist for years. To promote adjustment, it is essential to understand how young people cope, yet this is relatively understudied. METHODS: This study explored the coping strategies using semi-structured interviews with 16 young people with cancer aged 15-24 years. Eligible participants were diagnosed within the previous 24 months and recruited through Australian Youth Cancer Services. Transcribed interviews were analysed using content analysis. RESULTS: Coping strategies included: seeking support; controlling the focus; avoiding negatives and staying positive; meaning making and; changes with time. During treatment, seeking support, focussing on the present, distraction and avoidance were commonly applied. Following treatment, planning for the future, avoidance of re-traumatising situations and meaning making were used. CONCLUSION: Findings support the concept of coping as a dynamic process where different strategies are used depending on the stressor, available resources and previous experiences. PRACTICE IMPLICATIONS: Comprehensive, developmentally appropriate psychosocial assessments, open communication, education and information provision, as well as appropriate referral for support are essential, particularly for young cancer survivors identified at risk.

Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

BACKGROUND: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. OBJECTIVE: The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. METHODS: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. RESULTS: One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. CONCLUSION: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. IMPLICATIONS FOR PRACTICE: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Recruitment principles and strategies for supportive care research in pediatric oncology.

BACKGROUND: Variations in clinical practice contribute to negative outcomes for children with cancer. Research in this area is imperative to standardise practice, yet such research is challenging to undertake, and a significant proportion of studies fail. A common reason for failure is poor recruitment, yet little information is available to support researchers and clinicians planning such research. METHODS: Our primary aim was to describe the recruitment strategies and outcomes in a tertiary children's hospital across multiple observational supportive care studies. Secondary aims were to establish principles to improve both recruitment strategies and the reporting of recruitment. We undertook a retrospective descriptive analysis of the recruitment logs and data from three studies in pediatric oncology. The mean time to recruit one participant was calculated. Common reasons for not approaching eligible participants and reasons potential participants declined are described. RESULTS: Of the 235 potential candidates across all studies, 186 (79%) were approached and of these 125 (67%) provided consent, with 117 (63%) completing baseline measures. We estimated recruitment per participant required an average 98 min of experienced research nurse time. Four factors are described that influence recruitment and six principles are outlined to maximise recruitment and the generalisability of research findings. CONCLUSIONS: We highlight the recruitment experiences across three different projects in children's cancer supportive care research and provide a roadmap for other researchers planning to undertake clinical research in pediatrics.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

Do specialist youth cancer services meet the physical, psychological and social needs of adolescents and young adults? A cross sectional study.

PURPOSE: To assess unmet information and service needs in adolescent and young adult cancer survivors (15-29 years) who access specialist Youth Cancer Services in Queensland, Australia. METHODS: Participants were recruited through Youth Cancer Services across Queensland and completed validated Patient Reported Outcome Measures and Patient Reported Experience Measures to assess unmet needs, symptoms and wellbeing and quality of life (QoL) through an online survey. Analysis included Spearman's correlation and t-tests. RESULTS: The sample (N = 42) was representative in terms of gender, cancer type, location of residence and types of treatment. Total QoL varied substantially within the sample, and 56% of total scores were lower than population norms. QoL was inversely correlated with unmet needs (r = -0.64, p=<0.001). There were no explanatory variables identified associated with higher or lower needs or QoL. Young people reported high needs regarding information and support at diagnosis, and for managing side effects and decision making. Most (61-82%) reported these needs were met. At cancer treatment centres, 42% of young people perceived needs were not met regarding talking to other young people, having access to leisure spaces and relevant supportive information. Participants reported low symptom burden and worry about the future but were concerned about their ability to connect with peers and participate in activities. CONCLUSIONS: While service and information needs are generally met, young people with cancer who reported higher needs also report substantially lower QoL compared to population norms. Addressing these needs may improve QoL. A continued focus on providing support and services to this population is warranted.