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1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care A high proportion of adolescents and young adults (AYAs) with cancer (ages 15-39 years) receive high-intensity (HI) medical care at the end of life (EOL). We have previously shown that palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized or general PC (SPC, GPC) is unknown. To evaluate the prevalence and predictors of SPC in AYAs with cancer and to evaluate the impact of SPC versus GPC on the intensity of EOL care for AYAs. A decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada was assembled from registries and linked to population-based healthcare data. Based on prior studies, the primary composite measure HI-EOL care included any of intravenous chemotherapy <14 days from death, >1 ED visit, and >1 hospitalization or ICU admission <30 days from death. SPC and GPC were defined via previously validated algorithms based on physician billing codes (SPC if practice consisted of ≥50% PC-specific billing codes and GPC if PC-specific billing codes were between 10% and 50%). Of 7,122 AYAs, 2,140 (30%) received SPC and 942 (13.2%) received GPC. AYAs with hematologic malignancies, male AYAs, and rural AYAs were least likely to have access to SPC. No PC involvement compared to GPC was associated with higher odds of receiving HI-EOL care (OR 1.5; 95% CI, 1.3-1.8; P <.001). However, SPC was associated with the lowest risk of HI-EOL care (OR vs GPC 0.8; 95% CI, 0.7-0.9; P = 0.007). SPC was also associated with decreased odds of ICU admission compared with GPC (OR 0.7; 95% CI, 0.5-0.9; P = 0.006). SPC is associated with a lower risk of HI-EOL care in AYAs with cancer as compared to GPC. However, access to SPC remains a challenge. Our study supports the widespread provision of SPC to AYAs with cancer. [ABSTRACT FROM AUTHOR]

Context: Many adolescents and young adults (AYAs; 15-39 years) with cancer receive high intensity (HI) care at the end of life (EOL). Palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized versus generalist PC (SPC, GPC) is unknown.Objectives: (1) To evaluate whether SPC had an impact on the intensity of EOL care received by AYAs with cancer; (2) to determine which subpopulations are at highest risk for reduced access to SPC.Methods: A decedent cohort of AYAs with cancer who died between 2000-2017 in Ontario, Canada was identified using registry and population-based data. The primary composite measure of HI-EOL care included any of: intravenous chemotherapy <14 days from death; more than one ED visit, more than one hospitalization or any ICU admission <30 days from death. Physician's billing codes were used to define SPC and GPC involvement.Results: Of 7,122 AYA decedents, 2,140 (30%) received SPC and 943 (13%) received GPC. AYAs who died in earlier years, those with hematologic malignancies, males and rural AYAs were least likely to receive SPC. No PC involvement was associated with higher odds of receiving HI-EOL care (odds ratio (OR) 1.5; p<0.0001). However, SPC was associated with the lowest risk of HI-EOL care (OR SPC versus GPC 0.8; p=0.007) and decreased odds of ICU admission (OR 0.7; p=0.006).Conclusion: SPC involvement was associated with the lowest risk of HI-EOL care in AYAs with cancer. However, access to SPC remains a challenge. [ABSTRACT FROM AUTHOR]

Background: Location of cancer care (LOC; pediatric vs. adult center) impacts outcomes in adolescents and young adults (AYA) with some cancer types. Data on the impact of LOC on survival in AYA with osteosarcoma (OSS) and Ewing sarcoma (EWS) are limited OBJECTIVES: To compare differences in demographics, disease/treatment characteristics, and survival in a population-based cohort of AYA with OSS or EWS treated at pediatric versus adult centers METHODS: The Initiative to Maximize Progress in Adolescent Cancer Therapy (IMPACT) cohort captured demographic, disease, and treatment data for all AYA (15-21 years old) diagnosed with OSS and EWS in Ontario, Canada between 1992 and 2012. Patients were linked to provincial administrative health care databases. Outcomes were compared between patients treated in pediatric versus adult centers., Results: One hundred thirty-seven AYA were diagnosed with OSS (LOC: 47 pediatric, 90 adult) and 84 with EWS (38 pediatric, 46 adult). AYA treated at pediatric centers were more likely to be enrolled in a clinical trial (OSS 55% vs. 1%, p < .001; EWS 53% vs. 2%, p < .001) and received higher cumulative chemotherapy doses. Five-year event-free survival (EFS ± standard error) in OSS and EWS were 47% ± 4% and 43% ± 5%, respectively. In multivariable analysis, the impact of LOC (pediatric vs. adult center) on EFS in OSS (adjusted hazard ratio [HR] 1.15, 95% confidence interval [CI]: 0.58-2.27, p = .69) and EWS (adjusted HR 1.82, 95% CI: 0.97-3.43, p = .06) was not statistically significant., Conclusion: Despite disparities in trial participation and chemotherapy doses, outcomes did not differ by LOC suggesting that AYA with bone tumors can be treated at either pediatric or adult centers., (© 2022 Wiley Periodicals LLC.)

Purpose: Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs., Methods: A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models., Results: Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43)., Conclusion: A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer., Competing Interests: Adam RapoportStock and Other Ownership Interests: MedCurrentPatents, Royalties, Other Intellectual Property: I have intellectual property in a software called KidList. This software, which helps create patient lists, has been sold to a small health care institution in Vancouver, BC, Canada Sumit GuptaConsulting or Advisory Role: Jazz PharmaceuticalsNo other potential conflicts of interest were reported.

Survivors of adolescent and young adult cancers (AYAs) often live 50 to 60 years beyond their diagnosis. This rapidly growing cohort is at increased risk for cancer- and treatment-related 'late effects' that persist for decades into survivorship. Recognition of similar issues in pediatric cancer survivors has prompted the development of evidence-based guidelines for late effects screening and care. However, corresponding evidence-based guidelines for AYAs have not been developed. We hosted an AYA survivorship symposium for a large group of multidisciplinary AYA stakeholders (approximately 200 were in attendance) at Princess Margaret Cancer Centre (Toronto, Ontario, Canada) to begin addressing this disparity. The following overview briefly summarizes and discusses the symposium's stakeholder-identified high-priority targets for late effects screening and care and highlights knowledge gaps to direct future research in the field of AYA survivorship. This overview, although not exhaustive, is intended to stimulate clinicians to consider these high-priority screening and care targets when seeing survivors in clinical settings and, ultimately, to support the development of evidence-based late effects screening and care guidelines for AYAs., (© The Author(s) 2020. Published by Oxford University Press.)

Background: The physical function of children with sarcoma after surgery has not been studied explicitly. This paucity of research is partly because of the lack of a sufficiently sensitive pediatric functional measure. The goal of this study was to establish and validate a standardized measure of physical function in pediatric patients with extremity tumors., Questions/purposes: (1) What is the best format and content for new upper- and lower-extremity measures of physical function in the pediatric population? (2) Do the new measures exhibit floor and/or ceiling effects, internal consistency, and test-retest reliability? (3) Are the new measures valid?, Methods: In Phase 1, interviews with 17 consecutive children and adolescents with bone tumors were conducted to modify the format and content of draft versions of the pediatric Toronto Extremity Salvage Score (pTESS). In Phase 2, the pTESS was formally translated into French. In Phase 3, 122 participants between 7 and 17.9 years old with malignant or benign-aggressive bone tumors completed the limb-specific measure on two occasions. Older adolescents also completed the adult TESS. Floor and ceiling effects, internal consistency, test-retest reliability, and validity were evaluated., Results: Feedback from interviews resulted in the removal, addition, and modification of draft items, and the pTESS-Leg and pTESS-Arm questionnaires were finalized. Both versions exhibited no floor or ceiling effects and high internal consistency (α > 0.92). The test-retest reliability was excellent for the pTESS-Leg (intraclass correlation coefficient [ICC] = 0.94; 95% CI, 0.90-0.97) and good for the pTESS-Arm (ICC = 0.86; 95% CI, 0.61-0.96). Known-group validity (ability to discriminate between groups) was demonstrated by lower mean pTESS-Leg scores for participants using gait aids or braces (mean = 68; SD = 21) than for those who did not (mean = 87; SD = 11; p < 0.001). There was no significant difference between pTESS arm scores among respondents using a brace (n = 5; mean = 73; SD = 11) and those without (n = 22; mean = 83; SD = 19; p = 0.13). To evaluate construct validity, we tested a priori hypotheses. The duration since chemotherapy correlated moderately with higher pTESS-Leg scores (r = 0.4; p < 0.001) but not with pTESS-Arm scores (r = 0.1; p = 0.80), and the duration since tumor resection correlated moderately with higher pTESS-Leg scores (r = 0.4; p < 0.001) but not pTESS-Arm scores (r = 0.2; p = 0.4). Higher VAS scores (that is, it was harder to do things) antecorrelated with both pTESS versions (pTESS-Leg: r = -0.7; p < 0.001; pTESS-Arm: r = -0.8; p < 0.001). To assess criterion validity, we compared the pTESS with the current "gold standard" (adult TESS). Among adolescents, strong correlations were observed between the TESS and pTESS-Leg (r = 0.97, p < 0.001) and pTESS-Arm (r = 0.9, p = 0.007)., Conclusions: Both pTESS versions exhibited no floor or ceiling effects and had high internal consistency. The pTESS-Leg demonstrated excellent reliability and validity, and the pTESS-Arm demonstrated good reliability and reasonable validity. The pTESS is recommended for cross-sectional evaluation of self-reported physical function in pediatric patients with bone tumors., Level of Evidence: Level II, outcome measurement development.

By surveying men who are currently infertile ( N = 251) and men who are potentially infertile (i.e., men with cancer; N = 195), the mental health consequences of reproductive masculinity, or the cultural assumption that men are virile and should be fathers, were investigated. There was no difference in depression levels between these two groups when controlling for demographic variables, suggesting that both groups of men have similar mental health needs. Since gendered notions of masculinity also suggest that men do not want to discuss their fertility health, their desire for online fertility-related social support was assessed. These findings suggest that most men do want to talk to others about fertility, which indicates that there is a need for more fertility-related social support. This research challenges some conceptions regarding masculinity, as men revealed an interest in accessing online social support related to fertility.