Initial validation of a needs instrument for young people bereaved by familial cancer.

OBJECTIVE: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer. METHODS: In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI. RESULTS: Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation. CONCLUSIONS: The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.

An invisible patient: Healthcare professionals' perspectives on caring for adolescents and young adults who have a sibling with cancer.

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25 years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.

General practitioners' management of cancers in Australian adolescents and young adults.

General practitioners (GPs) are often the first point of contact adolescents and young adults (AYAs, aged 10-29) with cancer have with the health system, and they are well-placed to coordinate their complex medical and psychosocial care. This study is the first to report characteristics of patients, GPs and cancers involved in AYA cancer management consultations in Australia, using data from a nationally representative sample of 972,100 patient-GP encounters in 2006-2016. AYA cancers were managed in 212 encounters, equating to approximately 137 per 100,000 AYA consultations. This rate was higher in older AYAs (25-29 years) and those who held a concession card. Approximately 30% of cancers managed were classified as "new", with GPs primarily providing counselling, education, and referrals to specialist care, imaging and pathology. This suggests that GPs are involved in the ongoing care of AYAs with cancer from diagnosis, in conjunction with other healthcare professionals. This is an encouraging indication of the potential for integrated multidisciplinary care extending from active treatment into survivorship; however, further work is needed to explore the changing role of GPs across the cancer trajectory.

Evaluating Maybe Later Baby, a Fertility Information Resource for Adolescents and Young Adults Diagnosed with Cancer: A Randomized, Controlled Pilot Study.

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583.

Interventions available to adolescents and young adults bereaved by familial cancer: a systematic literature review.

OBJECTIVES: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent's or sibling's cancer. METHODS: A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent's or sibling's cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection). RESULTS: Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants' self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline). CONCLUSIONS: Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.

What helps distressed Australian adolescents impacted by cancer? Mechanisms of improvement of the PEER program.

PEER is a four-day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self-compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated by improvements in processes targeted by psychotherapeutic elements of the program (psychological flexibility, mindfulness, self-compassion, peer support, distress). Adolescents attending PEER completed surveys assessing the quality of life and proposed mediator variables at pre-program, post-program and two-month follow-up. Adolescents experiencing high/very high levels of baseline distress (n = 52; 5 patients/survivors, 31 siblings/offspring, 13 bereaved siblings/offspring) were previously identified as experiencing clinically significant improvements in psychosocial well-being; here, mediation analyses explored whether these improvements were associated with improvements in process variables. Findings evidenced improvements in quality of life amongst distressed PEER participants, mediated by increases in psychological flexibility and self-compassion, and reductions in distress. Peer support and mindfulness were not significant mediators. Together, this suggests that the psychosocial benefits of PEER observed for highly distressed adolescents are linked to the specific therapeutic approaches used in the program, rather than being non-specific effects of peer connection or recreation. Findings from this evaluation provide further evidence for the efficacy and mechanisms of the effect of PEER for supporting distressed adolescents impacted by cancer. The study also demonstrates the viability and utility of the therapeutic approaches (acceptance and commitment therapy, self-compassion) used, showing that they have psychosocial benefits for this population.

The Clinical Utility of the Adolescent and Young Adult Psycho-Oncology Screening Tool (AYA-POST): Perspectives of AYA Cancer Patients and Healthcare Professionals.

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15-29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Understanding and Improving Survivorship Care for Adolescents and Young Adults with Cancer.

Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interviews. Results: Four themes were identified using thematic analysis: adjusting to life after cancer, transition to community-based care, ongoing change and reform of health care, and supporting survivorship services. Adolescents and young adults (AYAs) and their families struggled with the transition from active treatment, which was complicated by ongoing disease/treatment impacts and a collective dearth of knowledge and resources on how to support AYAs during this time. Limited confidence and communication in patient-general practitioner relationships complicated the transition to community-based care, with treatment summaries and survivorship care plans an underused resource. A growing movement toward integrated, holistic, and equitable survivorship care was identified, but progress has been fragmented and under-resourced. Further research, funding, and advocacy are needed to support ongoing survivorship initiatives. Conclusions: Although some survivorship concerns are common across age groups, others are specific to AYAs' developmental stage, emphasizing the need for integrated, age-appropriate, and targeted survivorship services for AYAs. The transition from active treatment to longer term survivorship presents challenges for ongoing clinical care and support; change is needed at individual, service, and system levels to provide quality, sustainable, and integrated care to AYA cancer survivors.

Australian Adolescents and Young Adults-Trends in Cancer Incidence, Mortality, and Survival Over Three Decades.

PURPOSE: Cancer is a significant health concern for adolescents and young adults (AYAs; aged 15-24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. METHODS: National data were extracted for 1980-2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. RESULTS: In 2000-2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. CONCLUSIONS: Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future.