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1.
Dig Dis Sci ; 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965157

ABSTRACT

BACKGROUND: The incidence of young patients diagnosed with hepatocellular carcinoma (HCC) is projected to rise. This study aimed to investigate the distinctive characteristics of adolescent and young adult (AYA) patients with HCC and identify the risk factors that impact their survival. METHODS: This study included 1005 AYA patients and 55,435 older adult (OA) patients with HCC, using data from the Surveillance, Epidemiology, and End Results database. Propensity score matching was used to adjust for baseline differences in patient characteristics. The Kaplan-Meier curve and log-rank test are utilized to compare the overall survival between the two groups. The Cox proportional hazards regression model was used for subgroup analysis to identify risk factors for overall survival in AYA patients. RESULTS: AYA patients exhibited a higher proportion of advanced clinical stage (49.15% vs 37.57%, P < 0.001) and fibrolamellar hepatocellular carcinoma (14.13% vs 0.09%, P < 0.001), but a lower incidence of alpha-fetoprotein positivity (32.04% vs 45.32%, P < 0.001) and cirrhosis (8.86% vs 18.32%, P < 0.001). The subgroup analysis results indicated that AYA patients had a more favorable prognosis than OA patients in most subgroups. Undifferentiated carcinoma emerged as the predominant risk factor for AYA patients (Hazard Ratio [HR], 6.08 [2.53-14.62]), whereas partial hepatectomy was determined to be the most advantageous factor (HR, 0.29 [0.23-0.37]). CONCLUSIONS: AYA patients with HCC exhibit more aggressive characteristics but demonstrate a better prognosis compared to the OA group, necessitating personalized surveillance and treatment.

2.
J Adolesc Health ; 2024 Jul 06.
Article in English | MEDLINE | ID: mdl-38970605

ABSTRACT

PURPOSE: This Aotearoa New Zealand-based study addresses a gap in literature focusing on individual experiences of racism among adolescents and young adults and its links to health. METHODS: This cross-sectional study uses data from multiple instances of the New Zealand Health Survey (2002/03, 2006/07, 2011/12, 2016/17) and General Social Survey (2008-2016) restricted to participants aged 15-24 years. Prevalence of reported experiences of racism are estimated. Meta-analytic techniques to pool data and multiple regression analyses are used to examine associations between experiences of racism and outcomes measures (mental and physical health, general health and well-being, life satisfaction, inability to access health care, and identity). The study used an ethical co-design process between university researchers and a rangatahi Maori (Maori young people) partnership group. RESULTS: Racism was higher among Maori, Pacific, and Asian young people compared to European young people. Racism was associated with all negative health and well-being measures examined for young people, including negative mental and physical health measures (12-Item Short Form Survey, Kessler Psychological Distress Scale), lower self-rated health, negative life satisfaction, higher unmet need for primary care, and identity measures (feelings of not belonging in New Zealand, less able to express their identity). DISCUSSION: The results of this study are concerning. Non-European young people disproportionately bear the burden of racism in Aotearoa New Zealand with a potentially substantial impact on their health and well-being. This is a breach of Indigenous (for Maori) and other international human rights and should be motivation to act to eliminate racism in all its forms.

3.
Cancers (Basel) ; 16(13)2024 Jun 26.
Article in English | MEDLINE | ID: mdl-39001406

ABSTRACT

We examined the leukocyte relative telomere length (RTL) in Korean adolescent and young adult (AYA) survivors of childhood cancer and evaluated the association of leukocyte RTL with multiple factors, including malignancy type, cancer treatment, age, and chronic health conditions (CHCs). Eighty-eight AYA survivors of childhood cancer with a median follow-up period of 73 months were recruited. RTL in pediatric cancer survivors was not significantly shorter than the predicted value for age-matched references. Neither age at diagnosis nor duration of therapy influenced the RTL. Among the 43 patients with hematologic malignancies, those who underwent allogeneic hematopoietic stem cell transplantation (HSCT) showed a significant shortening of the RTL compared with those who did not (p = 0.039). Among the 15 patients who underwent allogeneic HSCT, those who developed acute graft-versus-host disease (GVHD) of grade II or higher had significantly shorter RTL than those who did not (p = 0.012). Patients with grade II CHCs had significantly shorter RTL than those without CHCs or with grade I CHCs (p = 0.001). Survivors with ≥2 CHCs also exhibited shorter RTL (p = 0.027). Overall, pediatric cancer survivors had similar telomere lengths compared to age-matched references. HSCT recipients and patients with severe or multiple CHCs had shorter telomeres. GVHD augmented telomere attrition in HSCT recipients.

4.
Article in English | MEDLINE | ID: mdl-39008423

ABSTRACT

Purpose: A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. Methods: Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. Results: Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face "my cancer" in my way, and (3) I feel that I would be okay with "my cancer." Conclusions: AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.

5.
Article in English | MEDLINE | ID: mdl-39008434

ABSTRACT

Limited guidance exists on streamlining cancer therapy for adolescent and young adult (AYA) patients 15-39 years of age, as much of the current data are extrapolated from pediatric or adult counterparts and can differ significantly between the two care models. Harmonization of standard treatment approaches has the potential to improve outcomes and establish a foundation for the development of future clinical trials. We present our experience harmonizing treatment and supportive care regimens for AYA patients with osteosarcoma receiving treatment with methotrexate, doxorubicin, and cisplatin (MAP) therapy on the pediatric and adult sarcoma services at the Memorial Sloan Kettering Cancer Center.

6.
Ann Surg Oncol ; 2024 Jul 16.
Article in English | MEDLINE | ID: mdl-39012466

ABSTRACT

BACKGROUND: Many adolescent and young adult (AYA) patients with breast cancer (BC) receive adjuvant therapy as initial treatment, with long-term bone marrow suppression as a potential complication, but no studies have evaluated the impact of race/ethnicity on the development of bone marrow suppression in AYA BC survivors. PATIENTS AND METHODS: Female patients ages 15-39 years diagnosed with BC (2006-2018) and surviving ≥ 2 years were identified from the California Cancer Registry and linked to statewide hospitalization data. We estimated the cumulative incidence of developing late effects of bone marrow suppression, such as leukopenia, anemia, thrombocytopenia, bleeding, and infection/sepsis, during hospital discharge diagnoses present ≥ 2 years after diagnosis. We examined the impact of sociodemographic and clinical factors on late effects using multivariate Cox proportional hazards regression. RESULTS: Of 11,293 patients, 42.8% were non-Hispanic (nH) White, 28.8% Hispanic, 19.5% nH Asian/Pacific Islander, and 7.5% nH Black. In multivariable analyses, nH Blacks had the highest risk (versus nH Whites) of anemia [hazard ratio (HR) 1.72, 95% confidence interval (CI) 1.47-2.02], leukopenia (HR 1.56, CI 1.14-2.13), thrombocytopenia (HR 1.46, CI 1.08-1.99), major infection/sepsis (HR 1.64, CI 1.4-1.92), and bleeding (HR 1.89, CI 1.39-2.58). Hispanics had a higher risk of developing anemia (HR 1.17, CI 1.04-1.32), bleeding (HR 1.4, CI 1.12-1.76), and major infections/sepsis (HR 1.36, CI 1.21-1.52). Asian/Pacific Islanders had only a higher risk of developing bleeding (HR 1.33, CI 1.03-1.72). Patients from a low neighborhood socioeconomic status had a 20% higher risk of infection/sepsis (HR 1.21, CI 1.1-1.34), but there were no associations for the other late effects. CONCLUSIONS: We identified that AYAs of nH Black, Hispanic, and Asian/Pacific Islander race/ethnicity are at an increased risk of several late effects after adjuvant therapy compared with nH White patients. From these data, providers can implement early/frequent screening of hematologic late effects in these high-risk survivors.

7.
Pediatr Clin North Am ; 71(4): 671-682, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39003009

ABSTRACT

The coronavirus disease 2019 pandemic disrupted in-person learning for adolescents and young adults across the world. Inequities in learning outcomes were primarily caused by digital inequalities. Social needs of adolescent and young adult (AYA) emerged during the pandemic and school is a key part of supporting AYA social health. School-based health clinics can serve as a method to improve mental and physical health outcomes for AYA.


Subject(s)
Adolescent Health , COVID-19 , School Health Services , Humans , Adolescent , COVID-19/prevention & control , COVID-19/epidemiology , School Health Services/organization & administration , Schools , SARS-CoV-2 , Young Adult , Pandemics
8.
Chin Clin Oncol ; 2024 Jun 06.
Article in English | MEDLINE | ID: mdl-38859605

ABSTRACT

BACKGROUND: Sarcomas are heterogeneous rare cancers, and while they affect 1% of all adult cancers, they affect 10-20% of adolescents and young adults (AYAs). The 5-year survival rates range between 50-60% but have remained stagnant. While the management of bony sarcomas (BS) usually involves systemic treatment and major morbid surgeries, functional outcomes and quality of life have been largely overlooked. METHODS: A literature search was conducted on PubMed and ScienceDirect using key search terms of "Adolescent and young adult", "AYAO", "bone sarcoma, osteosarcoma, Ewing sarcoma", "functional outcomes" and "health-related quality of life" from 1st January 2003 to 13 March 2023. A total of 858 results in total were screened by two independent authors, and 18 selected papers were included in the scoping review. RESULTS: AYAs have poorer outcomes in all aspects-physical, social and psychological in BS survivorship, as many changes from disease and treatment are usually persistent and irreversible, with significant impact on mobility, function and body image. Current tools to assess health-related quality of life (HRQoL) in AYAs are not standardized or validated in this age group. Subjective tools measuring physical outcomes do not correlate to objective measures of physical function. CONCLUSIONS: These outcomes have a direct connection to their independence, self-confidence and future job endeavors, yet hardly any specific research has gone into it. They are stricken with a cancer diagnosis during the prime of their lives and it is essential to manage them holistically to preserve and maximize their functional outcomes. More research is required to monitor their outcomes long-term post-treatment and into survivorship.

9.
Pediatr Blood Cancer ; : e31092, 2024 Jun 12.
Article in English | MEDLINE | ID: mdl-38867358

ABSTRACT

BACKGROUND: Chimeric antigen receptor (CAR) T-cell therapy provides promising outcomes in relapsed/refractory B acute lymphoblastic leukemia (ALL), yet still carries high toxicity rates and relatively poor long-term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment-related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied. METHODS: English- or Spanish-speaking patients (ages 8-25 years) undergoing CAR T-cell therapy for any malignancy and their primary caregivers were recruited from Seattle Children's Hospital (SCH), St. Jude Children's Research Hospital (SJCRH), and the Pediatric Oncology Branch of the National Cancer Institute (NCI). Both patient and caregiver completed semi-structured dyadic interviews 3 months post treatment. We used directed content analysis for codebook development and thematic network analysis for inductive qualitative analysis. RESULTS: Twenty families completed interviews (13 patients, 15 parents). Patients were a median age 16.5 years, predominantly female (65%), White (75%), and diagnosed with ALL (75%). Global themes included "A clear decision," "Coping with symptoms," and "Unforeseen psychosocial challenges." When families were asked to describe the "most challenging part of treatment," most described "the unknown." Most reported "the symptoms really weren't that bad," even among patients hospitalized for severe toxicity events. Fatigue, pain, and nausea were the most prevalent symptoms. Importantly, only one family would have chosen a different therapy, if given another opportunity. CONCLUSIONS: Although physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.

10.
Syst Rev ; 13(1): 156, 2024 Jun 14.
Article in English | MEDLINE | ID: mdl-38877597

ABSTRACT

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is a life-saving treatment for adolescents and young adults (ages 15-39) with hematologic malignancy. Given the significant developmental milestones usually achieved during this unique life stage, this population is especially vulnerable to the interruption caused by a cancer diagnosis and its treatment. HSCT is a particularly invasive form of cancer therapy with many negative physical, social, and psychological sequelae. The long-term impact of HSCT in adolescents and young adults with hematologic malignancies warrants a systematic investigation of its effects to best shape clinical care and health policy. METHODS: This protocol for a systematic review will focus on the long-term physical, psychological, social, spiritual, and health behavior effects experienced by adolescents and young adults who undergo HSCT for hematologic malignancy. We have constructed a specific search strategy that queries these five domains, which will be applied to five databases-Embase, PubMed, Cochrane Trials and Reviews, PsychInfo, and CINAHL-to identify the key literature. Two independent reviewers will perform a title/abstract screen followed by a full-text screen using standard screening templates to ensure the inclusion of outcomes in the post-acute HSCT period. Risk of bias will be assessed using the University of Adelaide Joanna Briggs Institute Collaboration Critical Appraisal Tools. Data from included studies will be abstracted on study characteristics, study setting, sample characteristics, and outcomes. Given the broad scope of the research question, data synthesis will focus on qualitative methods in accordance with Institute of Medicine standards. DISCUSSION: While adolescents and young adults undergoing hematopoietic stem cell transplantation for hematologic malignancy are understood to have a unique survivorship experience, the sequelae of this treatment approach in this population have not been previously aggregated. This systematic review intends to expand insight into the adolescent and young adult experiences with HSCT in order to inform age-appropriate survivorship care and deliver this life-saving intervention with the best possible outcomes. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42022361663.


Subject(s)
Hematologic Neoplasms , Hematopoietic Stem Cell Transplantation , Systematic Reviews as Topic , Humans , Adolescent , Hematologic Neoplasms/therapy , Young Adult , Adult , Quality of Life
11.
BMC Med ; 22(1): 260, 2024 Jun 24.
Article in English | MEDLINE | ID: mdl-38910233

ABSTRACT

BACKGROUND: The cancer experienced in adolescent and young adult (AYA) could disturb developmental changes and long-term life. The current AYA guidelines and research for survivorship were developed and reported according to the general age range of 15-39 years; however, expected life events vary by diagnosed age. We aimed to examine the social, psychological, and physical well-being of AYA cancer survivors by age at diagnosis using a multinational representative dataset focusing on age at diagnosis. METHODS: We conducted a cross-sectional study using the US and Korean National Health and Nutrition Examination Surveys from 2007 to 2018. Participants diagnosed with any cancer aged 15-39 years and were aged > 18 years at the survey year were defined as AYA cancer survivors. AYA were classified into three groups based on their diagnosed age: adolescent survivors (diagnosed between the ages of 15 and 19, n = 45), young adult survivors (diagnosed between the ages of 20 and 29, n = 238), and late young adult survivors (diagnosed between the ages of 30 and 39, n = 539). We also selected an age-, sex-, race-, and survey year-matched general population with 1:5 ratio among participants without cancer (N = 4110). RESULTS: The average age of the survey was 29.1, 43.7, and 48.7 years for AYA survivors diagnosed during adolescence, young adulthood, and late young adulthood, respectively. Adolescent survivors had more non-couple marital status (adjusted odds ratio (aOR), 1.34; 95% CI, 1.10-1.64) and unemployed (aOR, 1.30; 95% CI, 1.05-1.61) compared to late young adult survivors. Comparing with the matched general, adolescent survivors were more in poor general health (aOR, 4.65; 95% CI, 2.09-10.38) and unemployed (aOR, 2.17; 95% CI, 1.12-4.24) and late young adult survivors were more non-couple (aOR, 1.40; 95% CI, 1.05-1.86). CONCLUSION: This study provides evidence for future studies on long-term health, which may vary according to age at the time of diagnosis among AYA with cancer.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Adolescent , Young Adult , Male , Female , Cross-Sectional Studies , Neoplasms/epidemiology , Neoplasms/diagnosis , Adult , Cancer Survivors/statistics & numerical data , Age Factors , United States/epidemiology , Databases, Factual , Republic of Korea/epidemiology , Nutrition Surveys
12.
Contin Educ ; 5(1): 90-99, 2024.
Article in English | MEDLINE | ID: mdl-38910896

ABSTRACT

Despite high survival rates for many adolescent or young adult (AYA) cancer diagnoses, the psychosocial, academic, and vocational repercussions for survivors are profound and enduring. Hospital systems are able to address many AYA needs, but the ability to provide the human connectedness and knowledge that drive long-term school and career planning is lacking. This study assessed a group of AYAs who have or had cancer (n = 108, 54% female, 71% white, mean age 20.6 ± 4.4) to determine the school, career, medical, emotional, and psychosocial needs that are not currently being met by hospital staff and support networks. We identified the most common unmet needs of AYAs, differences between needs of AYAs in active treatment and survivorship, and the role of a career-focused mentoring program developed by the nonprofit organization Connecting Champions (CC) to address the array of unmet AYA needs. We found that the most commonly reported needs were all related to career and school, and that the top needs did not differ significantly throughout the cancer journey. These findings suggest that career and school-based needs are a high priority for AYAs, yet social isolation can make the necessary people or resources inaccessible. The CC mentoring program was reported as effective in attending to unmet needs (with an average score of 95.1/100) and can be a valuable resource for hospital systems, nonprofit organizations, and health insurers to provide personalized, career-focused support to AYAs during cancer treatment and survivorship.

13.
Cureus ; 16(3): e57291, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38690456

ABSTRACT

Brentuximab vedotin (BV), an anti-CD30 antibody with monomethyl auristatin E conjugate, has shown clinical effects against relapsed/refractory classic Hodgkin lymphoma (cHL) and hence is widely used in the clinical setting. We report a special clinical case of successful pregnancy and fetal outcome in a patient with cHL who achieved long-term remission with BV for early relapse after an autologous stem cell transplant (auto-SCT). A 27-year-old woman with advanced cHL achieved complete response (CR) after six cycles of doxorubicin, bleomycin, vinblastine, and dacarbazine (ABVD) regimen. Embryos obtained from intracytoplasmic sperm injection were cryopreserved before the initiation of induction chemotherapy. Despite achieving a second CR following intensive salvage chemotherapy, auto-SCT, and radiotherapy, she relapsed again six months after transplantation. BV monotherapy was administered as salvage therapy. She completed 16 cycles of BV and achieved CR. Six months after BV completion, she expressed her desire to bear a child. She achieved pregnancy through third in vitro fertilization and embryo transfer and delivered a healthy baby. BV may provide a potentially curative treatment for patients with cHL relapsed after auto-SCT. Pregnancy should be avoided during BV administration up to a certain period after the end of administration. Fertility preservation is important for adolescent and young adult cancer survivors, and patients should be informed of cancer-related infertility and fertility preservation options prior to the initiation of cancer treatment.

14.
Pediatr Transplant ; 28(4): e14777, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38702932

ABSTRACT

BACKGROUND: Adolescent and young adult (AYA) solid organ transplant (SOT) recipients experience increased rates of rejection and graft loss surrounding the time of health care transition, in part due to poor medication adherence. This study aims to examine the impact of a once-daily formulation of tacrolimus, LCP-tacrolimus (LCPT), on medication adherence for AYA SOT patients. METHODS: A retrospective descriptive analysis was performed for all patients who underwent SOT and were prescribed LCPT after the age of 12 at our single-center pediatric hospital. Medication adherence was assessed via provider documentation and the medication level variability index (MLVI). RESULTS: Twenty-nine patients were prescribed LCPT as part of their immunosuppression regimen. Twenty patients were converted to LCPT from immediate-acting (IR) tacrolimus; six patients were initiated immediately following transplant, and three patients were unable to receive LCPT due to insurance denial. There was a numeric improvement in medication adherence for converted patients when measured by provider assessment (45.0% vs. 68.4%, p = .140) and MLVI (40.0% vs. 71.4%, p = .276), though these did not reach statistical significance. There were no differences in episodes of rejection or adverse effects. LCPT prescription was not associated with decreased medication burden, and two patients transitioned back to IR tacrolimus due to increased cost. CONCLUSIONS: LCPT use did not significantly improve patient adherence; however, it resulted in numerically higher perceived and measured adherence rates. LCPT appears to be safe and effective in the management of SOT recipients; however, it may not affect pill burden and may result in a higher financial burden. Use may be considered for a select group of AYA SOT recipients.


Subject(s)
Graft Rejection , Immunosuppressive Agents , Medication Adherence , Organ Transplantation , Tacrolimus , Humans , Tacrolimus/administration & dosage , Tacrolimus/therapeutic use , Adolescent , Retrospective Studies , Male , Female , Immunosuppressive Agents/administration & dosage , Immunosuppressive Agents/therapeutic use , Young Adult , Graft Rejection/prevention & control , Transplant Recipients , Drug Administration Schedule , Child , Adult
15.
Article in English | MEDLINE | ID: mdl-38738476

ABSTRACT

This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.

16.
Curr Oncol ; 31(5): 2582-2588, 2024 05 02.
Article in English | MEDLINE | ID: mdl-38785474

ABSTRACT

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to "AYA Can-Canadian Cancer Advocacy"), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a "patient ambassador program," and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.


Subject(s)
Neoplasms , Patient Advocacy , Humans , Canada , Neoplasms/therapy , Adolescent , Young Adult , Adult , Peer Group
17.
Curr Oncol ; 31(5): 2874-2880, 2024 05 17.
Article in English | MEDLINE | ID: mdl-38785500

ABSTRACT

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.


Subject(s)
Neoplasms , Humans , Adolescent , Canada , Young Adult , Adult , Research , Female , Biomedical Research , Health Priorities , Male
18.
Pediatr Blood Cancer ; 71(8): e31074, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38778452

ABSTRACT

BACKGROUND: Adult- and adolescent-onset neuroblastomas are rare, with no established therapy. In addition, rare pheochromocytomas may harbor neuroblastic components. This study was designed to collect epidemiological, diagnostic and therapeutic data in order to better define the characteristics of malignant peripheral neuroblastic tumors (MPNT) and composite pheochromocytomas (CP) with MPNT. PROCEDURE: Fifty-nine adults and adolescents (aged over 15 years) diagnosed with a peripheral or composite neuroblastic tumor, who were treated in one of 17 institutions between 2000 and 2020, were retrospectively studied. RESULTS: Eighteen patients with neuroblastoma (NB) or ganglioneuroblastoma (GNB) had locoregional disease, and 28 patients had metastatic stage 4 NB. Among the 13 patients with CP, 12 had locoregional disease. Fifty-eight percent of the population were adolescents and young adults under 24 years of age. The probability of 5-year event-free survival (EFS) was 40% (confidence interval: 27%-53%). CONCLUSIONS: Outcomes were better for patients with localized tumor than for patients with metastases. For patients with localized tumor, in terms of survival, surgical treatment was the best therapeutic option. Multimodal treatment with chemotherapy, surgery, radiotherapy, and immunotherapy-based maintenance allowed long-term survival for some patients. Adolescent- and adult-onset neuroblastoma appeared to have specific characteristics associated with poorer outcomes compared to pediatric neuroblastoma. Nevertheless, complete disease control improved survival. The presence of a neuroblastic component in pheochromocytoma should be considered when making therapeutic management decisions. The development of specific tools/resources (Tumor Referral Board, Registry, biology, and trials with new agents or strategies) may help to improve outcomes for patients.


Subject(s)
Neuroblastoma , Humans , Retrospective Studies , Adolescent , Male , Female , Neuroblastoma/therapy , Neuroblastoma/epidemiology , Neuroblastoma/pathology , Neuroblastoma/mortality , Neuroblastoma/diagnosis , Adult , Young Adult , France/epidemiology , Survival Rate , Middle Aged , Adrenal Gland Neoplasms/therapy , Adrenal Gland Neoplasms/epidemiology , Adrenal Gland Neoplasms/pathology , Adrenal Gland Neoplasms/mortality , Adrenal Gland Neoplasms/diagnosis , Pheochromocytoma/therapy , Pheochromocytoma/epidemiology , Pheochromocytoma/pathology , Pheochromocytoma/mortality , Follow-Up Studies , Combined Modality Therapy , Prognosis , Age of Onset , Ganglioneuroblastoma/therapy , Ganglioneuroblastoma/pathology , Ganglioneuroblastoma/epidemiology , Ganglioneuroblastoma/mortality , Aged
19.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Article in English | MEDLINE | ID: mdl-38743085

ABSTRACT

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.


Subject(s)
Cancer Survivors , Hispanic or Latino , Spirituality , Humans , Female , Cancer Survivors/psychology , Male , Hispanic or Latino/psychology , Adult , Adolescent , Young Adult , Pilot Projects , Hope , Neoplasms/psychology , Neoplasms/therapy , Qualitative Research , Adaptation, Psychological
20.
Cancer ; 2024 May 02.
Article in English | MEDLINE | ID: mdl-38696087

ABSTRACT

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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