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Purpose: The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. Methods: AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent t-tests, and binary logistic regressions were conducted for data analysis. Results: Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. Conclusions: Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.
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BACKGROUND: Neighborhood socioeconomic deprivation has been linked to adverse health outcomes, yet it is unclear whether neighborhood-level social determinants of health (SDOH) measures affect overall survival in adolescent and young adult patients with cancer. METHODS: This study used a diverse cohort of adolescent and young adult patients with cancer (N = 10â261) seen at MD Anderson Cancer Center. Zip codes were linked to Area Deprivation Index (ADI) values, a validated neighborhood-level SDOH measure, with higher ADI values representing worse SDOH. RESULTS: ADI was statistically significantly worse (P < .050) for Black (61.7) and Hispanic (65.3) patients than for White patients (51.2). Analysis of ADI by cancer type showed statistically significant differences, mainly driven by worse ADI in patients with cervical cancer (62.3) than with other cancers. In multivariable models including sex, age at diagnosis, cancer diagnosis, and race and ethnicity, risk of shorter survival for people residing in neighborhoods with the least favorable ADI quartile was greater than for individuals in the most favorable ADI quartile (hazard ratio = 1.09, 95% confidence interval = 1.00 to 1.19, P = .043). CONCLUSION: Adolescent and young adult patients with cancer and the worst ADI values experienced a nearly 10% increase in risk of dying than patients with more favorable ADI values. This effect was strongest among White adolescent and young adult survivors. Although the magnitude of the effect of ADI on survival was moderate, the presence of a relationship between neighborhood-level SDOH and survival among patients who received care at a tertiary cancer center suggests that ADI is a meaningful predictor of survival. These findings provide intriguing evidence for potential interventions aimed at supporting adolescent and young adult patients with cancer from disadvantaged neighborhoods.
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Hispánicos o Latinos , Neoplasias , Determinantes Sociales de la Salud , Humanos , Adolescente , Femenino , Masculino , Adulto Joven , Neoplasias/mortalidad , Hispánicos o Latinos/estadística & datos numéricos , Población Blanca/estadística & datos numéricos , Características del Vecindario , Negro o Afroamericano/estadística & datos numéricos , Adulto , Neoplasias del Cuello Uterino/mortalidad , Neoplasias del Cuello Uterino/etnología , Modelos de Riesgos Proporcionales , Características de la Residencia , Factores SocioeconómicosRESUMEN
GLI1-altered mesenchymal tumor is a recently described distinct pathologic entity with an established risk of malignancy, being defined molecularly by either GLI1 gene fusions or amplifications. The clinicopathologic overlap of tumors driven by the 2 seemingly distinct mechanisms of GLI1 activation is still emerging. Herein, we report the largest series of molecularly confirmed GLI1-altered mesenchymal neoplasms to date, including 23 GLI1-amplified and 15 GLI1-rearranged new cases, and perform a comparative clinicopathologic, genomic, and survival investigation. GLI1-rearranged tumors occurred in younger patients (42 vs. 52 y) and were larger compared with GLI1-amplified tumors (5.6 cm vs. 1.5 cm, respectively). Histologic features were overall similar between the 2 groups, showing a multinodular pattern and a nested architecture of epithelioid, and less commonly spindle cells, surrounded by a rich capillary network. A distinct whorling pattern was noted among 3 GLI1-amplified tumors. Scattered pleomorphic giant cells were rarely seen in both groups. The immunoprofile showed consistent expression of CD56, with variable S100, CD10 and SMA expression. Genomically, both groups had overall low mutation burdens, with rare TP53 mutations seen only in GLI1-amplified tumors. GLI1-amplified mesenchymal tumors exhibit mostly a single amplicon at the 12q13-15 locus, compared with dedifferentiated liposarcoma, which showed a 2-peak amplification centered around CDK4 (12q14.1) and MDM2 (12q15). GLI1-amplified tumors had a significantly higher GLI1 mRNA expression compared with GLI1-rearranged tumors. Survival pooled analysis of current and published cases (n=83) showed a worse overall survival in GLI1-amplified patients, with 16% succumbing to disease compared with 1.7% in the GLI1-rearranged group. Despite comparable progression rates, GLI1-amplified tumors had a shorter median progression-free survival compared with GLI1-rearranged tumors (25 mo vs. 77 mo). Univariate analysis showed that traditional histologic predictors of malignancy (mitotic count ≥4/10 high-power fields, presence of necrosis, and tumor size ≥5 cm) are associated with worse prognosis among GLI1-altered mesenchymal tumors.
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INTRODUCTION: Fertility after cancer is a top concern for adolescents and young adults with cancer (AYAs) (15-39 years old at diagnosis). The authors characterized live births after cancer by race and ethnicity ("race/ethnicity") in a population-based sample of female AYAs. METHODS: This study used Texas Cancer Registry data linked to birth certificates (1995-2016) to estimate cumulative incidence of live birth, based on first live birth after cancer, and compared differences by race/ethnicity. Proportional subdistribution hazards models were used to estimate associations between race/ethnicity and live birth, adjusted for diagnosis age, cancer type, stage, year, and prior live birth, overall and for each cancer type. RESULTS: Among 65,804 AYAs, 10-year cumulative incidence of live birth was lower among non-Hispanic Black AYAs than other racial/ethnic groups: 10.2% (95% confidence interval [CI], 9.4-10.9) compared to 15.9% (95% CI, 14.1-17.9) among Asian or Pacific Islander, 14.7% (95% CI, 14.2-15.3) among Hispanic, and 15.2% (95% CI, 14.8-15.6) among non-Hispanic White AYAs (p < .01). In the adjusted overall model, Black AYAs were less likely to have a live birth after cancer than all other groups. In adjusted models for each cancer type, live birth was significantly less likely for Black AYAs with gynecologic cancers or lymphomas (compared to White AYAs) or thyroid cancers (compared to Hispanic AYAs). CONCLUSION: Black AYAs are less likely than AYAs of other races/ethnicities to have a live birth after cancer, in contrast to patterns of live birth in the general population. Research and action to promote childbearing equity after cancer are imperative.
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Supervivientes de Cáncer , Nacimiento Vivo , Neoplasias , Adolescente , Adulto , Femenino , Humanos , Adulto Joven , Negro o Afroamericano/estadística & datos numéricos , Supervivientes de Cáncer/estadística & datos numéricos , Hispánicos o Latinos/estadística & datos numéricos , Incidencia , Nacimiento Vivo/epidemiología , Neoplasias/epidemiología , Neoplasias/etnología , Sistema de Registros , Texas/epidemiología , Blanco/estadística & datos numéricosRESUMEN
Background: As the majority of pediatric patients with cancer survive their disease, generating a population of over 500,000 childhood cancer survivors in the United States, it is imperative to minimize the lifelong consequences of treatment, which include temporary or permanent infertility caused by certain cancer treatments. A fertility consultation at diagnosis can provide patients and families with the opportunity to be informed regarding the likelihood of gonadal dysfunction and to consider fertility preservation. Method: After our pediatric hospital started to offer tissue cryopreservation, we initiated this evidence-based interventional quality improvement project. Our primary aim was to ensure that all newly diagnosed prepubertal patients with cancer who met the criteria for fertility tissue preservation were correctly identified and offered an educational consultation and preservation. Results: Between July 15, 2022 and October 30, 2022, 54 patients' treatment plans were evaluated to determine treatment-related infertility risk using the Oncofertility Consortium Pediatric Initiative Network's Risk Assessment tool. Fifteen patients were at a high level of significantly increased risk and 13 were eligible for consultation. Seven (46%) patients and their families received a consultation. Initiation of treatment before referral was the primary reason for lack of consultation. Six of seven patients receiving consultation (86%) elected to undergo preservation. Preservation procedures did not cause a delay in starting treatment for those patients. Discussion: A fertility preservation program with established policies and processes can increase the likelihood that prepubertal patients at high risk for infertility are correctly identified, educated, and offered preservation.
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Preservación de la Fertilidad , Hospitales Pediátricos , Neoplasias , Humanos , Preservación de la Fertilidad/métodos , Neoplasias/complicaciones , Niño , Femenino , Masculino , Preescolar , Criopreservación , Supervivientes de Cáncer , AdolescenteRESUMEN
BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life. OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention. METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data collection occurred at baseline, 2 weeks post intervention (T2), and 90 days post intervention (T3). RESULTS: There were no significant between-group differences on primary outcomes for parents or AYAs. We did find significant differences favoring the parent intervention group on parenting confidence at T2 and marginally better outcomes for family adaptability/cohesion at T3. Both groups exhibited significant within-group improvement for parent distress (state anxiety, T3; perceived stress, T2 and T3; mood, T3), state anxiety (T2) intervention only, and family strengths control group only. Qualitative data demonstrate the parent intervention raised self-awareness and parent confidence in the short term. CONCLUSION: Parents found their intervention helpful. Absence of significant results may be due to short intervention duration, need for tailored content, underpowered sample, and potential indirect parent benefit from AYA participation in TMV. The parent intervention did not provide an indirect benefit for AYAs. IMPLICATIONS FOR NURSING: Parents identified their own need for communication and support from nurses. Nurses can optimize AYA care by attending to parent needs through supportive listening and encouraging self-care.
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Neoplasias , Autocuidado , Adolescente , Niño , Comunicación , Humanos , Neoplasias/terapia , Responsabilidad Parental , Padres , Calidad de Vida , Adulto JovenRESUMEN
Disparities in health care have an adverse effect on the outcome of disadvantaged patients with cancer. Patients may be at a disadvantage because of geographic isolation; insurance status; or racial, ethnic, or other factors. In this article, we examine how disparities affect the care of patients with sarcoma in the United States, Canada, and the Asia-Pacific region. Because of the rarity of sarcomas and their challenging diagnosis and complex treatment patterns, some professional or national guidelines stipulate that patients with sarcoma should be treated at centers of expertise by multidisciplinary teams. This recommendation, based on published evidence, is not always applicable because of various sociopolitical or patient-related factors. We are proposing solutions to overcome these obstacles in a practical and patient-centered way while acknowledging that disparities exist among countries as well as within any country.
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Sarcoma , Etnicidad , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Humanos , Grupos Raciales , Sarcoma/diagnóstico , Sarcoma/epidemiología , Sarcoma/terapia , Neoplasias de los Tejidos Blandos , Estados Unidos/epidemiologíaRESUMEN
Axial skeleton primary tumor, metastatic disease at presentation, incomplete surgical resection, and <90% tumor necrosis have all been known to influence prognosis adversely in osteosarcoma. Relapse of osteosarcoma, typically occurring within the first 18 months of therapy, with an incidence rate of 50% is treated with surgery, chemotherapy, and targeted therapy. Here, we discuss 2 patients treated with pazopanib, a multi-tyrosine kinase inhibitor presently approved to treat renal cell carcinoma and soft tissue sarcomas. Case 1 achieved positive response and remains on pazopanib. Case 2 sustained gastrointestinal toxicity requiring suspension of drug, despite achieving stable disease.
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Neoplasias Óseas/tratamiento farmacológico , Recurrencia Local de Neoplasia/tratamiento farmacológico , Osteosarcoma/tratamiento farmacológico , Pirimidinas , Sulfonamidas , Adulto , Neoplasias Óseas/metabolismo , Neoplasias Óseas/patología , Femenino , Humanos , Indazoles , Masculino , Recurrencia Local de Neoplasia/metabolismo , Recurrencia Local de Neoplasia/patología , Osteosarcoma/metabolismo , Osteosarcoma/patología , Pirimidinas/administración & dosificación , Pirimidinas/efectos adversos , Sulfonamidas/administración & dosificación , Sulfonamidas/efectos adversosRESUMEN
This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient- and family-focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.
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Cuidados Posteriores/normas , Supervivientes de Cáncer/estadística & datos numéricos , Prestación Integrada de Atención de Salud/normas , Modelos Estadísticos , Neoplasias/terapia , Guías de Práctica Clínica como Asunto/normas , Garantía de la Calidad de Atención de Salud/normas , Adolescente , Adulto , Humanos , Neoplasias/mortalidad , Pronóstico , Tasa de Supervivencia , Adulto JovenRESUMEN
PURPOSE: The objectives of this study were to determine whether pediatricians are more likely than other primary care physicians (PCPs) to refer newly diagnosed adolescent and young adult patients with cancer to pediatric oncological specialists, and to assess the physician and patient characteristics that affect patterns of referral. METHODS: A cross-sectional vignette survey was mailed to PCPs to examine hypothetical referral decisions as a function of physician characteristics and patient characteristics, including diagnosis, age, gender, race/ethnicity, family support, transportation, insurance, and patient preference for site of care. Pediatrician PCPs and nonpediatrician PCPs (family medicine, internal medicine, and emergency medicine physicians) practicing in North Carolina and in Washington State participated in the study. RESULTS: A total of 406 surveys were completed (35.8% response rate). Sixty percent of pediatric PCPs referred their hypothetical patients with cancer to pediatric specialists (PSs), compared with only 37% of nonpediatric PCPs. Patient age also influenced referral patterns; 89% of 13-year-olds, 74% of 16-year-olds, 25% of 19-year-olds, and only 9% of 22-year-old patients were referred to a PS. Multivariate logistic regression demonstrated that diagnosis and physician practice setting also were associated with referral patterns. CONCLUSIONS: Both patient age and PCP specialty were significant predictors of referral patterns in hypothetical vignettes of newly diagnosed adolescent and young adult patients with cancer. Pediatricians were more likely than nonpediatrician PCPs to refer patients to a PS. Referrals to PSs decreased dramatically between ages 16 and 19. Because the site of oncological care can impact outcomes, these data have the potential to inform awareness and education initiatives directed at PCPs.
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Toma de Decisiones , Neoplasias/terapia , Pediatras/estadística & datos numéricos , Médicos de Atención Primaria/estadística & datos numéricos , Derivación y Consulta/estadística & datos numéricos , Adolescente , Adulto , Factores de Edad , Estudios Transversales , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/diagnóstico , North Carolina , Especialización , Washingtón , Adulto JovenRESUMEN
Many adolescent female cancer patients will survive into their reproductive years. Pediatric oncologists are advised to discuss oncofertility during treatment planning. In this pilot study, 19 adolescent females completed a retrospective survey assessing recall of a fertility discussion, satisfaction with fertility knowledge, and multiple factors that may influence recall, including parental involvement in decision-making. Eleven respondents (58%) remembered a discussion about infertility risk and 9 (47%) about fertility preservation. Most who recalled a discussion were satisfied with their fertility knowledge (10/11, 90.9%). In this study, we validated the feasibility of survey administration and identified trends in oncofertility counseling at our center.
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Toma de Decisiones , Preservación de la Fertilidad/métodos , Infertilidad Femenina/prevención & control , Recuerdo Mental , Neoplasias/terapia , Oncólogos/estadística & datos numéricos , Planificación de Atención al Paciente , Adolescente , Femenino , Estudios de Seguimiento , Humanos , Proyectos Piloto , Pronóstico , Estudios Retrospectivos , Encuestas y CuestionariosRESUMEN
Purpose To estimate the prevalence of sperm banking among adolescent males newly diagnosed with cancer and to identify factors associated with banking outcomes. Patients and Methods A prospective, single-group, observational study design was used to test the contribution of sociodemographic, medical, psychological/health belief, communication, and developmental factors to fertility preservation outcomes. At-risk adolescent males (N = 146; age 13.00 to 21.99 years; Tanner stage ≥ 3), their parents, and medical providers from eight leading pediatric oncology centers across the United States and Canada completed self-report questionnaires within 1 week of treatment initiation. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% CIs for specified banking outcomes (collection attempt v no attempt and successful completion of banking v no banking). Results Among adolescents (mean age, 16.49 years; standard deviation, 2.02 years), 53.4% (78 of 146) made a collection attempt, with 43.8% (64 of 146) successfully banking sperm (82.1% of attempters). The overall attempt model revealed adolescent consultation with a fertility specialist (OR, 29.96; 95% CI, 2.48 to 361.41; P = .007), parent recommendation to bank (OR, 12.30; 95% CI, 2.01 to 75.94; P = .007), and higher Tanner stage (OR, 5.42; 95% CI, 1.75 to 16.78; P = .003) were associated with an increased likelihood of a collection attempt. Adolescent history of masturbation (OR, 5.99; 95% CI, 1.25 to 28.50; P = .025), banking self-efficacy (OR, 1.23; 95% CI, 1.05 to 1.45; P = .012), and parent (OR, 4.62; 95% CI, 1.46 to 14.73; P = .010) or medical team (OR, 4.26; 95% CI, 1.45 to 12.43; P = .008) recommendation to bank were associated with increased likelihood of sperm banking completion. Conclusion Although findings suggest that banking is underutilized, modifiable adolescent, parent, and provider factors associated with banking outcomes were identified and should be targeted in future intervention efforts.
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Actitud Frente a la Salud , Preservación de la Fertilidad/estadística & datos numéricos , Comunicación Interdisciplinaria , Neoplasias/epidemiología , Preservación de Semen/estadística & datos numéricos , Bancos de Esperma/organización & administración , Adolescente , Teorema de Bayes , Canadá , Estudios de Cohortes , Preservación de la Fertilidad/métodos , Personal de Salud/estadística & datos numéricos , Humanos , Modelos Logísticos , Masculino , Cadenas de Markov , Método de Montecarlo , Neoplasias/patología , Neoplasias/terapia , Padres/psicología , Valor Predictivo de las Pruebas , Estudios Prospectivos , Medición de Riesgo , Preservación de Semen/métodos , Factores Socioeconómicos , Sobrevivientes , Estados Unidos , Adulto JovenRESUMEN
Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled "Next Steps in Adolescent and Young Adult Oncology" on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer.
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Oncología Médica/tendencias , Neoplasias , Adolescente , Adulto , Femenino , Humanos , Masculino , National Cancer Institute (U.S.) , Estados Unidos , Adulto JovenRESUMEN
BACKGROUND: Among colorectal carcinoma patients, approximately 150 patients/year are age 25 years old or younger according to Surveillance, Epidemiology, and End Results Program statistics. Because of lack of screening in their age group, they are at risk to have more advanced disease and have been largely unstudied. OBJECTIVE: To determine outcome of colon cancer adolescent and young adult patients. METHODS: Patients under the age of 26 were retrospectively reviewed from a single institution. RESULTS: The 5-year overall survival rate from the time of the first surgery was .45 (95% confidence interval .17 to .70). The median overall survival for the cohort was 2.98 years. Patients aged 15 to 21 years had a poorer overall survival than patients aged 22 to 25 years (82% survival vs 100% at 2 years and zero vs 56% at 5 years). Five patients underwent cytoreductive surgery and hyperthermic intraperitoneal chemotherapy. Three are alive at 82, 36, and 16 weeks after hyperthermic intraperitoneal chemotherapy. CONCLUSIONS: Patients less than 21 years with nonsyndromic colorectal carcinoma may have a poorer outcome. Novel, more aggressive therapy may be necessary in these patients.
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Carcinoma/terapia , Quimioterapia del Cáncer por Perfusión Regional , Neoplasias Colorrectales/terapia , Procedimientos Quirúrgicos de Citorreducción , Hipertermia Inducida , Adolescente , Adulto , Terapia Combinada , Humanos , Estudios Retrospectivos , Adulto JovenRESUMEN
BACKGROUND: There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. METHODS: We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. RESULTS: Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). CONCLUSIONS: Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery.
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Neoplasias/terapia , Adolescente , Adulto , Femenino , Germinoma/terapia , Enfermedad de Hodgkin/terapia , Humanos , Modelos Logísticos , Linfoma no Hodgkin/terapia , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Calidad de la Atención de Salud/normas , Sistema de Registros , Estudios Retrospectivos , Programa de VERF , Sarcoma/terapia , Estados Unidos , Adulto JovenRESUMEN
Adolescents and young adults (AYAs) have lower rates of clinical trial enrollment than younger or older patients with cancer. Multiple approaches to change policy and practice need to be used to improve this statistic. This article examines the option of increasing referral to 3 types of centers that are known to have relatively higher rates of enrollment of AYAs: pediatric cancer centers, AYA oncology programs, and National Cancer Institute-designated cancer centers. There are reasonable challenges to changing referral patterns, and more research, as well as education of those diagnosing AYAs, is required.
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Ensayos Clínicos como Asunto/métodos , Neoplasias/terapia , Derivación y Consulta , Centros de Atención Secundaria , Adolescente , Ensayos Clínicos como Asunto/estadística & datos numéricos , Ensayos Clínicos como Asunto/tendencias , Humanos , Neoplasias/diagnóstico , Derivación y Consulta/estadística & datos numéricos , Derivación y Consulta/tendencias , Centros de Atención Secundaria/estadística & datos numéricos , Centros de Atención Secundaria/tendencias , Adulto JovenRESUMEN
Against a background of poorly coordinated provision of holistic care to the adolescent and young adult (AYA) cancer population, the Canadian National Task Force on Adolescent and Young Adult Oncology, which is supported by the Canadian Partnership Against Cancer and the C17 network, convened a workshop to formulate the components of a systematic approach to care for this age group. Because such a program will deflect scarce resources, it must be validated and justified by reproducible metrics. A subgroup of experts was convened, comprising attendees at the AYA workshop, including AYA cancer survivors. A substantial number of key, feasible, and consistent metrics were identified and are systematized, justified, and presented in this article. Prioritization from within this range will be necessary.
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Servicios de Salud del Adolescente , Atención a la Salud , Neoplasias/terapia , Evaluación de Resultado en la Atención de Salud , Evaluación de Programas y Proyectos de Salud , Adolescente , Canadá , Atención a la Salud/economía , Detección Precoz del Cáncer , Accesibilidad a los Servicios de Salud , Humanos , Salud Mental , Neoplasias/economía , Neoplasias/psicología , Cuidados Paliativos , Calidad de Vida , Sobrevivientes , Adulto JovenRESUMEN
Each year in the United States, nearly 70 000 individuals between the ages of 15 and 40 years are diagnosed with cancer. Although overall cancer survival rates among pediatric and older adult patients have increased in recent decades, there has been little improvement in survival of adolescent and young adult (AYA) cancer patients since 1975 when collected data became adequate to evaluate this issue. In 2006, the AYA Oncology Progress Review Group made recommendations for addressing the needs of this population that were later implemented by the LIVESTRONG Young Adult Alliance. One of their overriding questions was whether the cancers seen in AYA patients were biologically different than the same cancers in adult and/or pediatric patients. On June 9-10, 2009, the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) convened a workshop in Bethesda, MD, entitled "Unique Characteristics of AYA Cancers: Focus on Acute Lymphocytic Leukemia (ALL), Breast Cancer and Colon Cancer" that aimed to examine the current state of basic and translational research on these cancers and to discuss the next steps to improve their prognosis and treatment.