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1.
Artigo em Inglês | MEDLINE | ID: mdl-39487912

RESUMO

PURPOSE: Adolescent and young adult (AYA) patients with breast cancer generally have poor prognoses and a higher risk of secondary cancers compared to those at the same cancer stage. Notably, AYA patients in Asia exhibit a higher incidence rate of breast cancer, with Luminal A as the predominant molecular subtype, which contrasts with the trends observed in Western countries. This study aims to compare the efficacy of Taxane/Anthracycline combination-based regimens (TACB) versus Anthracycline-based regimens (AB) in AYA patients with stage I-II breast cancer, focusing on different molecular subtypes. METHODS: This study utilized data from the Taiwan National Health Insurance Research Database (NHIRD) and the Taiwan Cancer Registry (TCR) from 2011 to 2019. The study cohort included patients aged 15 to 39 years who were diagnosed with stage I-II breast cancer and received either TACB or AB regimens. Propensity score matching and Cox proportional hazards regression models were used to calculate the hazard ratios (HR) for recurrence. RESULTS: The results showed that TACB regimens significantly reduced the risk of recurrence compared to AB regimens across all patients (aHR 0.73, 95% CI 0.55-0.97). Specifically, for low/middle-recurrence risk groups, the aHR was 0.68 (95% CI 0.49-0.96), and for high-recurrence risk groups, it was 0.43 (95% CI 0.21-0.87). The analysis further indicated no significant differences in recurrence risk between AYA and non-AYA patients using TACB regimens. CONCLUSION: The TACB regimens showed a more favorable prognosis than AB regimens across all molecular subtypes. Furthermore, TACB regimens not only outperformed AB treatments but also closed the gap in prognostic outcomes between AYA and non-AYA patients. We believe the findings of this study are highly reliable and can provide valuable guidance for physicians in choosing the most appropriate treatment strategies for AYA patients with stage I-II breast cancer.

2.
Acta Paediatr ; 113(7): 1612-1620, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38568009

RESUMO

AIM: Medical advancements will lead to more children with long-term illnesses and/or disabilities undergoing the transition to adult care. Previous studies show that many young adults are unprepared for this transition, and might suffer from loss of follow-up. This study aimed to investigate the post-transfer experiences of the transition among young adults with long-term illnesses and/or disabilities. METHODS: A qualitative descriptive design was used. Three semi-structured focus group interviews were conducted with 15 participants (18-25 years of age) recruited via patient organisations focusing on children and young adults with disabilities and/or long-term illnesses. The interviews were analysed with conventional content analysis. RESULTS: One theme emerged: limbo, defined as an indefinite experience without knowing when or even if something would happen, or whether they would be overlooked. The theme rested on four categories: transition experiences, organisational aspects, influence on daily life, and self-management. CONCLUSION: Areas for improvement were identified across the entire transition that is, in the preparation, transfer, and post-transfer stages. Our findings indicate a limited understanding among healthcare providers (HCPs) that the transition continues until the young adult has been fully integrated into adult care.


Assuntos
Pesquisa Qualitativa , Transição para Assistência do Adulto , Humanos , Adolescente , Masculino , Adulto Jovem , Feminino , Adulto , Grupos Focais
3.
Psychooncology ; 32(3): 375-382, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36514197

RESUMO

OBJECTIVES: Adolescents and young adult (AYA) cancer survivors face unique medical and psychosocial sequalae, including chronic health conditions, late effects of treatment and fear of recurrence. The meaning of cancer survivorship may be further complicated for AYAs with hereditary cancer predisposition syndromes. This study used a patient-centered framework to investigate how AYAs with Li-Fraumeni syndrome (LFS) consider cancer survivorship. METHODS: An interprofessional team conducted 30 semi-structured interviews with AYAs (aged 18-41, mean 31 years) enrolled in the National Cancer Institute's LFS Study (NCT01443468). Twenty had experienced at least one cancer diagnosis. Interview data were thematically analyzed by an inter-professional team using interpretive description and grounded theory methods. FINDINGS: Participants viewed "survivorship" as a period marked by no evidence of formerly diagnosed disease. By contrast, participants felt the label "survivor" was tenuous since LFS is characterized by multiple primary malignancies and uncertainty about intervals between one diagnosis and the next. Many AYAs viewed survivorship as requiring a high degree of suffering. Though many personally rejected "survivor" identities, almost all articulated its various functions including positive, negative, and more complicated connotations. Instead, they chose language to represent a range of beliefs about survival, longevity, prognosis, and activism. CONCLUSIONS: AYAs with LFS struggle with the term "survivor" due to their multi-organ cancer risk, short intervals between malignancies, and evolving identities. Loved ones' cancer-related suffering informed perspectives on survivorship. Survivorship care for AYAs with cancer risk syndromes requires interprofessional interventions that address their unique biomedical and psychosocial needs.


Assuntos
Sobreviventes de Câncer , Síndrome de Li-Fraumeni , Neoplasias , Adolescente , Humanos , Adulto Jovem , Sobreviventes de Câncer/psicologia , Emoções , Predisposição Genética para Doença , Síndrome de Li-Fraumeni/diagnóstico , Síndrome de Li-Fraumeni/psicologia , Neoplasias/psicologia , Sobreviventes
4.
Am J Med Genet A ; 188(2): 488-497, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34731530

RESUMO

Neurofibromatosis type 1 (NF1) is a genetic syndrome affecting about 1 in 3500 individuals; many of those affected have plexiform neurofibroma (pNF) tumors and associated symptoms and complications. Furthermore, learning and attention problems, as well as deficits in adaptive functioning, are common, often beginning in early childhood. This study aimed to describe adaptive functioning and to examine relationships between adaptive functioning and cognitive and academic variables and level of independence among adolescents and young adults (AYA) with NF1 and pNF tumors. Fifty-five AYA aged 16-31 years participated in a series of neuropsychological evaluations while parents completed the Vineland Adaptive Behavior Scales (VABS-II) as part of a larger natural history study. Over one-third (35%) of AYA were neither in school nor employed. Mean VABS-II daily living and socialization scores were low average while mean Verbal and Performance IQ scores were average. VABS-II scores were positively correlated with processing speed, executive functioning, and working memory scores. Verbal IQ was the only significant predictor of work/school status. Identification of the correlates and predictors of adaptive functioning and life achievement can help guide healthcare providers with the early identification of risk factors and possible areas for intervention.


Assuntos
Neurofibroma Plexiforme , Neurofibromatose 1 , Adaptação Psicológica , Adolescente , Adulto , Pré-Escolar , Cognição , Função Executiva , Humanos , Neurofibromatose 1/diagnóstico , Neurofibromatose 1/genética , Neurofibromatose 1/psicologia , Testes Neuropsicológicos , Adulto Jovem
5.
BMC Public Health ; 22(1): 241, 2022 02 05.
Artigo em Inglês | MEDLINE | ID: mdl-35123447

RESUMO

BACKGROUND: In Denmark, around 500 adolescents and young adults (AYAs) aged 15-29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, however, not currently being adequately met. This study explores the distinctive needs of AYAs aged 15-25 and affected by cancer with the aim of developing and designing an intervention that accommodates these needs and allows AYAs to pursue everyday life following active cancer treatment. METHODS: We combined multiple qualitative methods to conduct six sub-studies: 1) participant observation among support groups for AYAs affected by cancer, 2) field visit at a large Danish hospital, 3) qualitative interviews with AYAs currently or previously diagnosed with cancer, 4) qualitative interviews with practitioners working with young cancer patients or AYAs with chronic conditions, 5) an interactive workshop with practitioners, and 6) an interactive workshop with AYAs. The empirical material was collected between May 2016 and April 2019. The empirical material was read, analysed thematically and coded into the themes; 1) diagnosis and treatment, 2) form of education and 3) age, financial challenges and legal entitlements. RESULTS: Across the empirical material, we found that AYAs' cancer experience was heterogeneous. The needs of AYAs differed according to 1) diagnosis and treatment, 2) type of education and 3) age, financial situation and legal entitlements. The findings demonstrate a need for a tailored intervention accommodating the variety of opportunities, requirements and challenges of AYAs with cancer. We propose an intervention consisting of a multidisciplinary team sited at the hospital where the individual AYA receives treatment. The team's main task will be to maintain AYAs' social competences and ease their return to everyday life after serious illness by balancing educational requirements with cancer treatment. CONCLUSION: Based on the perspectives of practitioners and AYAs affected by cancer, this study outlines an intervention designed as a care pathway in which a multidisciplinary team provides individual and tailored support to AYAs with cancer from the time of diagnosis during and beyond active cancer treatment.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Doença Crônica , Humanos , Neoplasias/terapia , Adulto Jovem
6.
Int J Mol Sci ; 23(17)2022 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-36077521

RESUMO

We aimed to identify miRNAs and pathways specifically deregulated in adolescent and young adult (AYA) T-ALL patients. Small RNA-seq showed no major differences between AYA and pediatric T-ALL, but it revealed downregulation of miR-143-3p in T-ALL patients. Prediction algorithms identified several known and putative oncogenes targeted by this miRNA, including KRAS, FGF1, and FGF9. Pathway analysis indicated signaling pathways related to cell growth and proliferation, including FGFR signaling and PI3K-AKT signaling, with the majority of genes overrepresented in these pathways being predicted targets of hsa-miR-143-3p. By luciferase reporter assays, we validated direct interactions of this miRNA with KRAS, FGF1 and FGF9. In cell proliferation assays, we showed reduction of cell growth upon miR-143-3p overexpression in two T-ALL cell lines. Our study is the first description of the miRNA transcriptome in AYA T-ALL patients and the first report on tumor suppressor potential of miR-143-3p in T-ALL. Downregulation of this miRNA in T-ALL patients might contribute to enhanced growth and viability of leukemic cells. We also discuss the potential role of miR-143-3p in FGFR signaling. Although this requires more extensive validation, it might be an interesting direction, since FGFR inhibition proved promising in preclinical studies in various cancers.


Assuntos
MicroRNAs , Leucemia-Linfoma Linfoblástico de Células T Precursoras , Adolescente , Criança , Fator 1 de Crescimento de Fibroblastos/metabolismo , Regulação Neoplásica da Expressão Gênica , Humanos , MicroRNAs/genética , MicroRNAs/metabolismo , Fosfatidilinositol 3-Quinases/metabolismo , Leucemia-Linfoma Linfoblástico de Células T Precursoras/genética , Proteínas Proto-Oncogênicas p21(ras)/genética , RNA-Seq , Transcriptoma , Adulto Jovem
7.
Cancer Treat Res ; 181: 75-96, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34626356

RESUMO

With the recent advent of newer targeted therapies, including blinatumomab, inotuzumab ozogamicin, tyrosine kinase inhibitors (TKIs), and CAR T cells, treatment approaches to newly diagnosed as well as relapsed/refractory acute lymphoblastic leukemia (ALL) have changed. This chapter summarizes the newest treatment approaches in newly diagnosed T-cell and B-cell ALL, as well as the use of novel therapies for relapsed and refractory ALL.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Protocolos de Quimioterapia Combinada Antineoplásica , Humanos , Inotuzumab Ozogamicina , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico
8.
Curr Oncol Rep ; 23(2): 17, 2021 01 15.
Artigo em Inglês | MEDLINE | ID: mdl-33449203

RESUMO

PURPOSE OF REVIEW: Adolescents and young adults (AYAs) with cancer are a vulnerable population with unique needs that are under-recognized and often overlooked by healthcare providers. This review focuses on identifying and meeting some of those needs including adherence to treatment, financial implications, impact on fertility and intimacy, issues with work/school, isolation, challenges with re-entry, and long-term side effects and survivorship. RECENT FINDINGS: Survival rates have not improved in adolescents and young adults with cancer at the same rate as in children and older adults (the so called "AYA gap"). Restricted or delayed access to care and inconsistent cancer treatment and follow-up care contribute to this. Importantly, fertility preservation options have broadened and efforts to provide age appropriate counseling prior to treatment have improved. Additionally, AYAs face a variety of psychosocial issues while dealing with a cancer diagnosis during critical developmental years, and yet data pertaining to the successful identification and management of these issues is lacking. As a result, there has been recent increasing awareness that this patient population warrants strong advocates, additional research, and requires age group specific resources to be successful in navigating their cancer experience during treatment and into survivorship care. Members of the healthcare team should familiarize themselves with the unique needs of AYA cancer patients to provide optimal patient care. In order to build upon early progress, this group calls for additional study particularly when it comes to barriers to enrollment for AYA-specific research (including clinical trials), recognizing psychosocial needs (both during and after treatment), transition planning for returning to life after cancer, and managing long-term effects of treatment (including neuro cognitive changes). In addition, access to financial resources and appropriate mental health support needs to be improved.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/psicologia , Neoplasias/terapia , Planejamento de Assistência ao Paciente/organização & administração , Sobrevivência , Transição para Assistência do Adulto/organização & administração , Adolescente , Sobreviventes de Câncer/psicologia , Criança , Humanos , Assistência de Longa Duração/organização & administração , Neoplasias/patologia , Qualidade de Vida/psicologia , Apoio Social , Estados Unidos , Adulto Jovem
9.
J Neurooncol ; 147(2): 309-315, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32056145

RESUMO

INTRODUCTION: Medulloblastoma is a malignant embryonal tumor of the cerebellum that occurs predominantly in children. To find germline genetic variants associated with medulloblastoma risk, we conducted a genome-wide association study (GWAS) including 244 medulloblastoma cases and 247 control subjects from Sweden and Denmark. METHODS: Genotyping was performed using Illumina BeadChips, and untyped variants were imputed using IMPUTE2. RESULTS: Fifty-nine variants in 11 loci were associated with increased medulloblastoma risk (p < 1 × 10-5), but none were statistically significant after adjusting for multiple testing (p < 5 × 10-8). Thirteen of these variants were genotyped, whereas 46 were imputed. Genotyped variants were further investigated in a validation study comprising 249 medulloblastoma cases and 629 control subjects. In the validation study, rs78021424 (18p11.23, PTPRM) was associated with medulloblastoma risk with OR in the same direction as in the discovery cohort (ORT = 1.59, pvalidation = 0.02). We also selected seven medulloblastoma predisposition genes for investigation using a candidate gene approach: APC, BRCA2, PALB2, PTCH1, SUFU, TP53, and GPR161. The strongest evidence for association was found for rs201458864 (PALB2, ORT = 3.76, p = 3.2 × 10-4) and rs79036813 (PTCH1, ORA = 0.42, p = 2.6 × 10-3). CONCLUSION: The results of this study, including a novel potential medulloblastoma risk loci at 18p11.23, are suggestive but need further validation in independent cohorts.


Assuntos
Biomarcadores Tumorais/genética , Neoplasias Cerebelares/genética , Predisposição Genética para Doença , Estudo de Associação Genômica Ampla , Meduloblastoma/genética , Polimorfismo de Nucleotídeo Único , Estudos de Casos e Controles , Neoplasias Cerebelares/patologia , Estudos de Coortes , Genótipo , Humanos , Meduloblastoma/patologia , Prognóstico
10.
Pediatr Blood Cancer ; 65(9): e27089, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29667722

RESUMO

The incidence of acute myelogenous leukemia (AML) increases progressively with age. Favorable genetic mutations are most prevalent in children, and unfavorable profiles increase proportionately in adolescents and young adults (AYA) and into later adulthood. Survival rates of AYA have improved over recent decades to 50-60%, but their accrual to clinical trials remains poor. In contrast to AYA with acute lymphoblastic leukemia, the prognostic benefit for AYA with AML enrolled in pediatric compared with adult trials is minor and only seen when different protocols are used. The distinctive needs of AYA, including intensive psychological services, call for their treatment within specialized centers that offer complex supportive care.


Assuntos
Leucemia Mieloide Aguda/epidemiologia , Cariótipo Anormal , Adolescente , Adulto , Idade de Início , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Diferenciação Celular/efeitos dos fármacos , Criança , Pré-Escolar , Ensaios Clínicos como Assunto , Europa (Continente)/epidemiologia , Feminino , Transplante de Células-Tronco Hematopoéticas , Humanos , Incidência , Lactente , Infertilidade/epidemiologia , Infertilidade/etiologia , Leucemia Mieloide Aguda/genética , Leucemia Mieloide Aguda/terapia , Masculino , Pessoa de Meia-Idade , Estudos Multicêntricos como Assunto , Segunda Neoplasia Primária/epidemiologia , Segunda Neoplasia Primária/etiologia , Seleção de Pacientes , Prognóstico , Análise de Sobrevida , Estados Unidos/epidemiologia , Adulto Jovem
11.
Int J Clin Oncol ; 23(6): 1201-1211, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30062493

RESUMO

BACKGROUND: Cancer is rare among adolescents and young adults (AYA). Affected persons need generation-specific attention and care; however, no nationwide study has investigated the medical care structure for AYA cancer treatment in Japan. METHODS: We conducted a nationwide survey of AYA cancer for frequency of AYA patients, type of cancer, medical facilities, and certified cancer professionals. Data were collected from 14,713 patients at 218 Core Cancer Treatment Hospitals. RESULTS: The average proportion of AYA cancer patients to all cancer patients was 3.6%. The median number of patients aged 15 to 24 years per hospital was small (n = 5, range 1-51). The most frequent primary site of AYA cancer was the cervix uteri, but when cancer in situ was excluded, the hematopoietic malignancies were the most frequent cancer in males and females aged 15-24 years. In the age group 25-39 years, testicular and breast cancers were the most frequent cancers in males and females, respectively. Certified cancer professionals and facilities are necessary for appropriate care of AYA cancer patients, but the availability of such professionals varied greatly among hospitals. Hospitals with few AYA cancer patients were less likely to employ such physicians. CONCLUSIONS: The present findings suggest that medical care for AYA cancer in Japan requires further refinement and a multidisciplinary approach.


Assuntos
Neoplasias/epidemiologia , Sistema de Registros/estatística & dados numéricos , Adolescente , Adulto , Feminino , Humanos , Japão/epidemiologia , Masculino , Inquéritos e Questionários , Adulto Jovem
12.
Rinsho Ketsueki ; 58(8): 1024-1030, 2017.
Artigo em Japonês | MEDLINE | ID: mdl-28883265

RESUMO

Patients with acute lymphoblastic leukemia (ALL) in adolescents and young adults (AYA) generation are treated by both pediatricians and adult hematologists. Because their participation rate in clinical trials has been low, the treatment results have been unsatisfactory. However, with a recent widespread adaptation of pediatric-based regimen in adult ALL trials, their prognosis has dramatically improved. Moreover, their characteristic biology is being rapidly elucidated. For further improvement of AYA-ALL prognosis and quality of life, the collaboration between pediatricians and adult hematologists is essential and multidisciplinary approach is necessary.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Ensaios Clínicos como Assunto , Humanos , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Adulto Jovem
13.
Ann Oncol ; 25(8): 1500-5, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-24962703

RESUMO

Teenagers and young adults (TYA) cancer contributes substantially to morbidity and mortality in a population with much to offer society. TYA place distinct challenges upon cancer care services, many reporting feeling marginalized and their needs not being met in adult or paediatric cancer services. Bone tumours such as osteosarcoma and Ewing sarcoma, because of their age at presentation and the complexity of their care, are where challenges in managing (TYA) with cancer have often been most readily apparent. Bone sarcomas may be managed by paediatric or medical oncologists, and require fastidious attention to protocol. A lack of recent improvement in survival in TYA with bone tumours may be linked to a lack of specialist care, poor concordance with therapy in some situations and TYA-specific pharmacology. Participation in clinical trials, particularly of young adults, is low, hindering progress. All these requirements may be best met by a concerted effort to create collaborative care between adult and paediatric experts in bone sarcoma, working together to meet TYA patients' needs.


Assuntos
Neoplasias Ósseas , Osteossarcoma , Adolescente , Adulto , Idade de Início , Neoplasias Ósseas/epidemiologia , Neoplasias Ósseas/terapia , Consenso , Humanos , Osteossarcoma/epidemiologia , Osteossarcoma/terapia , Sarcoma de Ewing/epidemiologia , Sarcoma de Ewing/terapia , Adulto Jovem
14.
Inflamm Bowel Dis ; 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38839073

RESUMO

BACKGROUND: Patients with inflammatory bowel diseases (IBDs) are more likely to have depression and anxiety symptoms compared with healthy individuals and those with other chronic illnesses. Previous studies have shown a link between the microbiome composition and depression symptoms; however, many antidepressant medications have antibacterial activity confounding cross-sectional studies of these populations. Therefore, we aimed to determine whether we could detect longitudinal changes in the microbiome of a subset of patients who participated in a previously published mindfulness-based cognitive therapy (MBCT) study to improve depression symptoms in adolescents and young adults with IBD. METHODS: Stool samples were collected at baseline and 8 weeks (n = 24 participants, 37 total samples, 13 paired samples). During this time, some participants achieved a 50% reduction in their depression symptoms either through MBCT or treatment as usual with their mental health team (responders). The microbiome composition and function of responders were compared with participants who did not improve their depression scores (nonresponders). Depression scores were determined using the depression, anxiety, and stress score (DASS-21), and metagenomic sequencing of stool samples was performed. RESULTS: No difference in alpha diversity was found between responders and nonresponders. Beta diversity measures were similarly unchanged. Clinical features including fecal calprotectin, C-reactive protein, and serum IL-6 levels were unchanged. CONCLUSIONS: In this small longitudinal study, we were not able to detect longitudinal changes in the microbiome associated with improvement in depression scores. Follow-up studies that are sufficiently powered to detect changes in the microbiome are required to confirm our results.


In a small cohort of young adults with inflammatory bowel disease and depression symptoms, we observed no significant longitudinal changes in their microbiome following improvement in their depression scores.

15.
Cancer Med ; 13(8): e7197, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38659403

RESUMO

PURPOSE: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15-25 years) with cancer and their caregivers. METHODS: We recruited English- or Spanish-speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi-structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. RESULTS: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. CONCLUSION: Younger AYAs and their caregivers experience significant financial challenges and unmet health-related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.


Assuntos
Cuidadores , Neoplasias , Humanos , Adolescente , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/economia , Masculino , Feminino , Adulto Jovem , Cuidadores/psicologia , Adulto , Efeitos Psicossociais da Doença , Apoio Social , Pesquisa Qualitativa , Comparação Transcultural , Necessidades e Demandas de Serviços de Saúde , Estresse Financeiro/psicologia
16.
J Adolesc Young Adult Oncol ; 13(5): 726-737, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38717190

RESUMO

Given recent advances in cancer therapeutics, there is a growing population of adolescent and young adult (AYA) cancer survivors navigating the physical and psychological consequences of cancer treatment. Fertility preservation (FP) conversations are of increasing importance for these survivors. Decision regret (DR) is a measure of distress or remorse following a health care decision, and it is a useful tool to evaluate the impact of a treatment on quality of life. The aim of this systematic review is to culminate existing literature focused on determinants of FP DR among AYA cancer survivors and to propose future interventions to reduce DR among AYA cancer survivors. An electronic database search was performed using PubMed, Web of Science, and APA PsycINFO for articles published before December 2023 using the following search criteria: PubMed: "Fertility Preservation"[Mesh] AND decision regret, APA PsycINFO and Web of Science: Fertility Preservation AND decision regret. Articles were organized into five categories that emerged after initial review. Nineteen articles that focused on DR and FP in AYA cancer survivors aged ≤40 and ≥12 years were included. Article results were categorized into five categories pertaining to determinants of FP DR: Unmet Informational and Emotional Needs, Need for Developmentally Appropriate Conversations, Insufficiency of Provider Training, Quality and Timeliness of Fertility Preservation Discussions, and Societal Barriers. These results highlight the need for improved patient and provider education on FP, such as future longitudinal studies focused on standardization of FP-related protocols and the impact of their implementation on DR, especially for AYA cancer survivors.


Assuntos
Sobreviventes de Câncer , Tomada de Decisões , Emoções , Preservação da Fertilidade , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Sobreviventes de Câncer/psicologia , Preservação da Fertilidade/métodos , Preservação da Fertilidade/psicologia , Neoplasias/psicologia , Neoplasias/complicações , Criança
17.
Front Psychol ; 15: 1268113, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38746913

RESUMO

Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.

18.
Arch Public Health ; 82(Suppl 1): 140, 2024 Aug 27.
Artigo em Inglês | MEDLINE | ID: mdl-39192310

RESUMO

Children and Adolescents and Young Adults with cancer represent a young population with specific needs, which need to be addressed in a patient- and cancer-driven way. There is an urgent need to support and extend the ongoing initiatives in Belgium. First, multidisciplinary care programmes dedicated to children need to be reviewed, and those for Adolescents and Young Adults need to be developed with close collaboration between paediatric and adult oncology and haematology teams. This needs to be done considering the entire patient journey; from cancer prevention, diagnosis, treatment, rehabilitation, follow-up of late effects, transition pathways between paediatric and adult wards, and palliative care. Second, national haemato/oncology precision programmes adapted to this young population with rare cancers, including infrastructure to manage cancer gene predisposition in CAYAs with cancers and their relatives, needs to be developed. This multi-level plan aims to ensure improved outcome with high quality of care for the young population with cancer in Belgium in line with Europe's Beating Cancer Plan initiatives.

19.
J Pediatr Hematol Oncol Nurs ; 40(4): 245-258, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37063060

RESUMO

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.


Assuntos
Arteterapia , Neoplasias , Adolescente , Humanos , Adulto Jovem , Neoplasias/terapia , Criança
20.
J Cancer Res Clin Oncol ; 149(9): 5655-5663, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36527483

RESUMO

PURPOSE: Survivors of cancer during young adulthood face multiple psychosocial challenges following treatment. This study explores psychosocial distress and unmet needs among young adult survivors treated of hematological malignancies. METHODS: A total of 85 young adults aged between 18 and 39 years at time of diagnosis, were invited to join the survey after the completion of treatment with curative intent. Sociodemographic data and the need for advice were gathered with a self-report questionnaire. A set of standardized questionnaires for quality of life (EORTC QLQ-C30), psychosocial stressors (PHQ-S), fear of progression (PA-F-KF), cancer-related fatigue (EORTC QLQ-FA12), and symptoms of anxiety (GAD-7) or depression (PHQ-9) was employed. Descriptive statistics and multivariate analysis were conducted. RESULTS: Forty-seven young adult cancer survivors responded. A quarter of patients (26%) reported depressive symptoms, 15% suffered from anxiety, 36% from fear of progression, and 21% reported increased psychosocial stressors. They had a lower QoL than the general population and reported poorer outcomes on all single-item and multi-symptom scales. Employment was significantly associated with lower levels of psychosocial distress, anxiety, fatigue, and better QoL. CONCLUSION: Young adult cancer survivors exhibited a high disposition for psychosocial distress. They reported excessive demands in everyday life and resumption of work. However, a longitudinal study of young adult cancer survivors is needed to confirm the results of this pilot study. In future, psycho-oncological and social support need to become an inherent part of the aftercare of survivors of young adult cancer survivors.


Assuntos
Neoplasias Hematológicas , Neoplasias , Humanos , Adulto Jovem , Adulto , Adolescente , Qualidade de Vida/psicologia , Projetos Piloto , Estudos Longitudinais , Sobreviventes/psicologia , Neoplasias/psicologia , Inquéritos e Questionários
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