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1.
J Healthc Qual Res ; 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39043525

RESUMO

PURPOSE: To determine whether there are differences in care experience of adolescent cancer patients and their main caregiver, treated in Adolescent Cancer Units (ACUs), compared to those treated in Non-Adolescent Cancer Units (NACUs), including the COVID-19 pandemic period. METHOD: Measurement of Reported Experience in adolescent oncology patients (12-19 years old) and caregivers through ad hoc surveys. The responses of the study group of patients and caregivers treated in Adolescent Units were compared with the group not treated in them. RESULTS: It is noted that many respondents consider that they have not been affected by the COVID-19 pandemic. Significant differences were seen in communication, with better perception by the group of patients treated in ACU (87.1%) and caregivers of ACU (97.3%) compared to patients and caregivers of NACU (53.3% and 68.2% respectively). Regarding information received about the side effects, a better perception was observed among patients treated in the ACU than in the NACU (p=0.247). In the transmission of information and the possibility of fertility preservation, a significant difference was observed in favour of ACU in patients and direct caregivers (p=0.010 and p=0.018). CONCLUSIONS: ACU represents an improvement in the quality perceived by patients and main caregiver on key points in the comprehensive care of the adolescent with cancer such as information, participation in the process and decision making, approach to side effects, psychological care and help in returning to normal life. However, fertility and strategies for talking about the cancer experience, were identified as areas for future improvement.

2.
Pediatr Clin North Am ; 71(4): 671-682, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39003009

RESUMO

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.


Assuntos
Saúde do Adolescente , COVID-19 , Serviços de Saúde Escolar , Humanos , Adolescente , COVID-19/prevenção & controle , COVID-19/epidemiologia , Serviços de Saúde Escolar/organização & administração , Instituições Acadêmicas , SARS-CoV-2 , Adulto Jovem , Pandemias
3.
Patient Educ Couns ; 128: 108372, 2024 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-39029282

RESUMO

OBJECTIVE: A cancer diagnosis during adolescence and young adulthood (AYA) disrupts AYAs' identity formation, a critical task for healthy development, and contributes to psychological distress called identity distress. Clinical communication is central to promoting AYAs' healthy identity development. We sought to identify aspects of clinician-diagnosed AYA communication that can promote AYAs' identity development and potentially buffer them from distress. METHODS: In-depth, semi-structured interviews were conducted with two groups (AYA oncology clinicians and diagnosed AYAs). Transcripts were thematically analyzed to capture communication that clinicians and AYAs perceive promotes AYAs' identity development and buffers related distress. RESULTS: Fourteen diagnosed AYAs and 7 clinicians identified three clinician- or AYA-led communication approaches and associated strategies that they perceive can buffer identity distress and promote identity development: 1) clinicians' using person-centered communication (e.g., empathic communication); 2) promoting AYAs' control/self-management of care (e.g., not dictating AYAs' behavior); and 3) prioritizing/seeing the person behind the patient (e.g., knowing the AYA as a person). CONCLUSION/PRACTICE IMPLICATIONS: Both AYA oncology clinicians and diagnosed AYAs can communicate in ways that protect AYAs' identity development and related psychological well-being. Findings can be implemented into targeted communication skills interventions to teach health-promoting behavior and augment AYAs' psychosocial oncology care.

4.
Ann Surg Oncol ; 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39012466

RESUMO

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.

5.
BMC Cancer ; 24(1): 788, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956510

RESUMO

BACKGROUND: Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. METHODS: A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. DISCUSSION: Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. TRIAL REGISTRATION: The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).


Assuntos
Neoplasias , Grupo Associado , Apoio Social , Humanos , Adolescente , Adulto Jovem , Neoplasias/psicologia , Neoplasias/terapia , Adulto , Feminino , Masculino , Estudos Prospectivos , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Alemanha , Ensaios Clínicos Controlados Aleatórios como Assunto
6.
Artigo em Inglês | MEDLINE | ID: mdl-38959166

RESUMO

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

7.
Artigo em Inglês | MEDLINE | ID: mdl-38959174

RESUMO

Purpose: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.

8.
J Natl Compr Canc Netw ; : 1-8, 2024 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-38996438

RESUMO

BACKGROUND: The overall landscape of health-related quality of life (HRQoL) has not been thoroughly investigated in adolescents and young adults (AYAs) with cancer. Data are also lacking on how well HRQoL at the time of cancer diagnosis can prognosticate long-term survival in AYA survivors. PATIENTS AND METHODS: We included 3,497 survivors of AYA cancer (age 15-39 years at diagnosis) who completed the Short-Form 12 Health Survey (SF-12) HRQoL questionnaire at diagnosis. Physical component summary (PCS) and mental component summary (MCS) scores were generated, with scores <50 representing poor HRQoL. Differences in HRQoL by patient characteristics and tumor type were investigated using violin plots and t tests/analysis of variance. The effect of HRQoL on overall survival was assessed using Kaplan-Meier plots and Cox proportional hazards models. RESULTS: Overall mean PCS and MCS scores in this racially/ethnically diverse cohort (64% White, 19% Hispanic, 10% Black, and 7% other race/ethnicity) were 43.6 and 46.7, respectively. Women with breast cancer reported the most favorable PCS (50.8), and those with cervical cancer reported the lowest MCS (42.8). Age at diagnosis was associated positively with PCS (P<.001) and inversely with MCS (P<.001). Females had higher PCS yet lower MCS than males (both P<.001). Marginalized racial and ethnic populations reported lower PCS than White patients (P<.001). Physical and mental HRQoL were prognostic and associated with increased risk of poor survival (hazard ratio, 1.95; 95% CI, 1.72-2.21 for physical HRQoL, and 1.26; 95% CI, 1.13-1.40 for mental HRQoL). CONCLUSIONS: Physical and mental HRQoL at diagnosis vary across patient characteristics in AYA cancer survivors. Poor HRQoL at diagnosis may be a prognosticator of diminished overall survival among AYA cancer survivors.

9.
Children (Basel) ; 11(7)2024 Jul 20.
Artigo em Inglês | MEDLINE | ID: mdl-39062330

RESUMO

OBJECTIVE: Adolescents with chronic rheumatic disease must increasingly take on more responsibility for disease management from parents as they transition from pediatric to adult care. Yet, there are limited resources to inform and support parents about transition. Here, we evaluate the impact of a Transition Toolkit, geared towards parents and adolescents, on transition readiness, and explore the potential impact of parent-adolescent communication. METHODS: A prospective cohort study of youths aged 14-18 years old and their parents was performed. Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected at enrollment (when the Transition Toolkit was shared with adolescents and their parents. Generalized estimating equation (GEE) analyses determined the influence of the Toolkit on transition readiness and explored the role of parent-adolescent communication quality. Subgroup analyses were conducted by sex. RESULTS: A total of 21 patients were included; 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared (ß = 7.8, p < 0.05, and ß = 15.5, p < 0.05, respectively). CONCLUSION: Transition readiness improved at each follow-up, the greatest increase was seen after the Toolkit was shared. Parent-adolescent communication quality did not appear to impact changes in transition readiness.

10.
Cureus ; 16(6): e63367, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-39077263

RESUMO

Introduction Transition is the process of preparing an adolescent or young adult for the adult model of care. Poor transitions have been linked to increased medical utilization and poorer kidney outcomes. There are limited studies evaluating predictors of transition readiness or interventions in pediatric patients with chronic kidney disease (CKD). Methods We enrolled 42 non-dialysis, non-transplant patients with CKD stage 2 or higher and 14 years and older receiving care in our pediatric nephrology clinic. Data collected included demographics, clinical information, and transition readiness as measured by the Transition Readiness Assessment Questionnaire (TRAQ). Patients were provided with a structured, remote curriculum with resources that addressed areas of need. Patients were followed every three to six months. Repeat TRAQ questionnaires were administered six months after enrollment. Results Our study found that younger age and male gender were risk factors for poor transition. Age was consistently a positive predictor of higher TRAQ scores in the medication, appointment, and total score domains (p < 0.05). Male gender was a risk factor for lower TRAQ scores in the appointment and communication domains (p < 0.05). Additionally, our curriculum was effective at improving scores across all TRAQ domains, with an average increase of about 25% in six months. There was no difference in patients who had a three-month follow-up as compared to a six-month follow-up (p > 0.05). Conclusion Our study finds that younger age and male gender are risk factors for poor transition. Additionally, a structured, remote curriculum is effective at improving transition readiness.

11.
Support Care Cancer ; 32(8): 562, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-39085495

RESUMO

PURPOSE: Adolescent and young adult (AYA) cancer patients, aged between 15 to 39 years old, suffer from long-term psychological distress, confronting low self-efficacy and various psychological problems. This study constructs a group online-based peer support intervention combined with offline activities to explore its impact on the psychological distress of AYA cancer patients. METHODS: A randomized, two-arm clinical trial was conducted in which 90 AYA cancer patients were recruited. The control group (N = 45) received conventional psychological care and treatment, and the experimental group (N = 45) received 8 weeks of an online peer support intervention. Outcome measures included psychological distress (Distress Thermometer, DT), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), perceived peer support (Cancer Peer Support Scales, CaPSS), and readiness for return to work (Readiness to Return-To-Work Scale, RRTW). RESULTS: Eight-week peer support intervention was effective in improving psychological distress, anxiety, and depressive symptoms in the experimental group with statistically significant differences (P < 0.05). Time affected psychological distress, anxiety, and depressive symptoms in AYA cancer patients (P < 0.05), and there was an interaction with intervention factors (P < 0.05). The intervention has a positive effect on relieving the psychological status of AYA cancer patients. For readiness for return to work, the experimental group was in the preparation for the action-behavioral stage immediately, 1 month and 3 months after the end of the intervention (P < 0.01), supporting AYA cancer patients who have not returned to work to maintain optimal return-to-work readiness. CONCLUSIONS: The group online-based peer support intervention is popular and has good scientificity, effectiveness, and practical significance for AYA cancer patients. TRIAL REGISTRATION: This study was registered at clinicaltrials.gov. (ChiCTR2100053091, registered on 10 November 2021).


Assuntos
Neoplasias , Grupo Associado , Angústia Psicológica , Apoio Social , Humanos , Adolescente , Feminino , Masculino , Adulto Jovem , Adulto , Neoplasias/psicologia , Neoplasias/terapia , Depressão/terapia , Depressão/etiologia , Depressão/psicologia , Ansiedade/etiologia , Ansiedade/terapia , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Intervenção Baseada em Internet
12.
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.

13.
Curr Oncol ; 31(6): 3177-3188, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38920724

RESUMO

Ovarian transposition (OT) has been proposed as a protective measure against radiation-induced damage to ovarian function and fertility. Despite its historical use, limited research has focused on evaluating endocrine and exocrine ovarian function after OT performed in adolescents and young adults (AYAs) before or during puberty. The purpose of our study was to investigate the fertility, pubertal development, and ovarian function of women with a previous history of OT during childhood, adolescence or young adulthood. In an observational bicentric retrospective study, we included 32 young female cancer patients who underwent OT before the age of 26 between 1990 and 2015 at Lyon Léon Bérard Cancer Center or Nancy University Hospital. The mean age at the time of OT was 15.6 years with a cancer diagnosis at 15 ± 4.8 years. Among the 10 women attempting pregnancy post-treatment, 60% achieved successful pregnancies. After a mean follow-up of 9.6 ± 7 years, 74% (17 out of 23) of women recovered spontaneous menstrual cycles (seven out of eight evaluable women with OT before or during puberty). Notably, 35% of women who did not attempt pregnancy demonstrated adequate ovarian reserve. Ovarian reserve and function recovery were influenced by the specific chemotherapy received. Importantly, our findings suggest that OT's effectiveness on ovarian activity resumption does not significantly differ when performed before or during puberty compared to pubertal stages. This study contributes valuable insights into the long-term reproductive outcomes of young women undergoing OT, emphasizing its potential efficacy in preserving ovarian function and fertility across different developmental stages.


Assuntos
Neoplasias , Ovário , Humanos , Feminino , Adolescente , Adulto Jovem , Neoplasias/complicações , Estudos Retrospectivos , Preservação da Fertilidade/métodos , Adulto , Criança , Fertilidade , Reserva Ovariana
14.
Pediatr Blood Cancer ; 71(9): e30997, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38864147

RESUMO

BACKGROUND: Sociodemographic and clinical factors associated with diagnostic delays in pediatric, adolescent, and young adult cancers are poorly understood. METHODS: Using the Optum Labs Data Warehouse's de-identified claims data for commercial health plan enrollees, we identified children (0-14 years) and adolescents/young adults (AYAs) (15-39 years) diagnosed with one of 10 common cancers from 2001 to 2017, who were continuously enrolled for 6 months preceding diagnosis. Time to diagnosis was calculated as days between first medical encounter with possible cancer symptoms and cancer diagnosis date. Median times from first symptom to diagnosis were compared using Wilcoxon rank sum test. Multivariable unconditional logistic regression identified sociodemographic factors associated with longer time (>3 months) to cancer diagnosis (from symptom onset). RESULTS: Of 47,296 patients, 87% presented prior to diagnosis with symptoms. Patients with central nervous system (CNS) tumors were most likely to present with symptoms (93%), whereas patients with cervical cancer were least likely (70%). Symptoms varied by malignancy. Of patients with symptoms, thyroid (105 days [range: 50-154]) and cervical (104 days [range: 41-151]) cancer had the longest median time to diagnosis. Females and patients at either end of the age spectrum were more likely to experience diagnosis delays of more than 3 months. CONCLUSION: In a commercially insured population, time to diagnosis varies by cancer type, age, and sex. Further work is needed to understand the patient, provider, and health system-level factors contributing to time from symptom onset to diagnosis, specifically in the very young children and the young adult patient population going forward.


Assuntos
Diagnóstico Tardio , Neoplasias , Humanos , Feminino , Masculino , Adolescente , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Criança , Diagnóstico Tardio/estatística & dados numéricos , Adulto Jovem , Adulto , Pré-Escolar , Lactente , Recém-Nascido , Seguimentos , Prognóstico , Fatores de Tempo
15.
Clin Child Psychol Psychiatry ; : 13591045241259920, 2024 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-38865494

RESUMO

BACKGROUND: Qualitative research has explored how some testicular cancer survivors (TCS) experience the psychological impacts of diagnosis and treatment. More research into the impacts of testicular cancer (TC) on adolescent and young adults (AYA) is needed due to the critical period of identity development. The present study aimed to explore how AYA with TC appraise and make sense of their experience and to develop a greater understanding of psychosexual identity development in AYA TCS. METHOD: Eight AYA TCS were interviewed. The results were analysed using Interpretative Phenomenological Analysis. The questions explored the experiences relating to diagnosis and treatment, how it affected their psychosexual identity development (e.g., sexual relationships and self-image) and the meanings attached to the experiences. ANALYSIS: Four Group Experiential Themes were developed from the data; 'Dealing with the shock', 'Fear and weight of responsibility', 'those closest to me' and 'sense of change'. DISCUSSION: The AYA TCS experiences may result in adoption of traditional masculine traits (e.g., stoicism) or abandonment of traditionally masculine traits (E.g. violence and aggression). AYA TCS also described feelings of insecurity when compared to other men. Psychology input could help manage stoicism and feelings of inferiority when compared to men with two testicles.


BackgroundQualitative research has explored how some testicular cancer survivors (TCS) cope with the psychological impacts of diagnosis and treatment. However, there is a need for more research on the effects of testicular cancer (TC) specifically in adolescent and young adults (AYA), given the critical period of identity development during this stage. The present study aimed to explore how AYA with TC perceive and make sense of their experiences, with a focus on psychosexual identity development.MethodEight AYA TCS were interviewed, and their responses were analyzed using Interpretative Phenomenological Analysis. The interviews covered topics related to diagnosis, treatment, and how these experiences influenced their psychosexual identity (including sexual relationships and self-image).AnalysisFour main themes emerged from the data: "Dealing with the shock": Participants discussed their initial reactions to the diagnosis. "Fear and weight of responsibility": AYA TCS grappled with fear and the burden of managing their health. "Those closest to me": Relationships with family and friends played a significant role in their experiences. "Sense of change": Participants described how their cancer journey impacted their sense of self.DiscussionAYA TCS may either adopt traditional masculine traits (such as stoicism) or abandon them (e.g., violence and aggression). Additionally, they expressed feelings of insecurity when comparing themselves to other men. Psychology support could help manage stoicism and address feelings of inferiority when compared to men with two testicles.

16.
Artigo em Inglês | MEDLINE | ID: mdl-38808497

RESUMO

This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.

17.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38743085

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Hispânico ou Latino , Espiritualidade , Humanos , Feminino , Sobreviventes de Câncer/psicologia , Masculino , Hispânico ou Latino/psicologia , Adulto , Adolescente , Adulto Jovem , Projetos Piloto , Esperança , Neoplasias/psicologia , Neoplasias/terapia , Pesquisa Qualitativa , Adaptação Psicológica
18.
Artigo em Inglês | MEDLINE | ID: mdl-38791797

RESUMO

BACKGROUND: Adolescent and young adult (AYA) survivors of childhood cancer are increasingly recognized as a vulnerable group with unique emotional, social, and practical needs due to the intersection of cancer survivorship and normal developmental processes. Mindfulness meditation has shown early efficacy in improving psychological distress among cancer patients. However, the overall scientific study of app-based mindfulness-based interventions is still in its early stages. The goal of this study was to evaluate the feasibility and acceptability of a commercially available mindfulness mobile app intervention "Ten Percent Happier" among AYA survivors of childhood cancer. METHODS: We conducted a single-arm pilot intervention with 25 AYA survivors of childhood cancer ages 18-29 years. RESULTS: A total of 108 potentially eligible individuals were initially identified for screening. Of the 45 individuals reached (contact rate = 41.67%), 20 declined to participate; 25 were enrolled in the study and completed the baseline survey (enrollment rate = 55.56%). Twenty-one participants completed the study (retention rate = 84%). Changes in several outcomes were promising, with medium to large effect sizes: Mindfulness (d = 0.74), Negative Emotion (d = 0.48), Perceived Stress (d = 0.52), and Mental Health (d = 0.45). Furthermore, results suggested that participants with consistent app usage showed greater improvement in reported outcomes than those who stopped their usage (e.g., Mindfulness: d = 0.74, Perceived Stress: d = 0.83, Mental Health: d = 0.51; Meaning and Purpose: d = 0.84; and Sleep Disturbance: d = 0.81). Qualitative feedback indicated high satisfaction, but participants suggested adding group or individual peer support to improve their experience with the app. CONCLUSIONS: AYA survivors can be difficult to reach, but a mindfulness app was feasible and acceptable to this group. In particular, the robust retention rate and high satisfaction ratings indicate that the meditation mobile app was well received. Preliminary results suggest positive changes in health-related quality of life outcomes, warranting a larger efficacy trial.


Assuntos
Sobreviventes de Câncer , Estudos de Viabilidade , Meditação , Atenção Plena , Aplicativos Móveis , Neoplasias , Humanos , Adolescente , Adulto Jovem , Masculino , Feminino , Sobreviventes de Câncer/psicologia , Adulto , Meditação/métodos , Atenção Plena/métodos , Neoplasias/psicologia , Neoplasias/terapia , Projetos Piloto , Estresse Psicológico/terapia , Estresse Psicológico/psicologia
19.
Reprod Biomed Online ; 49(1): 103891, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38761433

RESUMO

Fertility capacity has been shown to be one of the main concerns of young cancer survivors. Gonadotoxic treatments may lead to both premature ovarian failure and/or infertility. This review aimed to define which, and when, reproductive indicators should be followed-up to help doctors to counsel patients regarding their fertility and ovarian function, and to determine if a second stage of fertility preservation after the end of cancer treatment is clinically relevant. Longitudinal assessment of anti-Müllerian hormone (AMH) concentrations during cancer treatment indicates the degree of follicular depletion, and allows discrimination between low and high gonadotoxic treatments. Sustained low AMH concentrations after treatment, especially in the case of alkylating protocols, may reduce the duration of the conception window significantly, and expose the patient to the risk of premature ovarian failure. It remains unknown whether this may impact further fertility capacity because of the lack of systematic follow-up of adolescent and young adult (AYA) women after chemo-radiotherapy. It appears that dedicated reproductive follow-up of AYA women under cancer treatment is needed to refine fertility preservation strategies, and to determine if low AMH concentrations after treatment impact the chance of pregnancy in this specific survivor population.


Assuntos
Hormônio Antimülleriano , Sobreviventes de Câncer , Preservação da Fertilidade , Neoplasias , Humanos , Feminino , Adolescente , Preservação da Fertilidade/métodos , Neoplasias/terapia , Hormônio Antimülleriano/sangue , Adulto Jovem , Infertilidade Feminina/etiologia , Infertilidade Feminina/terapia , Gravidez
20.
J Patient Exp ; 11: 23743735241255450, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38765223

RESUMO

Adolescent and young adult (AYA) cancer patients receive palliative medicine consultation at a late stage and face diagnostic delays. Failure to address social determinants of health (SDOH) and AYA-specific needs can adversely impact patient experience. This retrospective observational cohort study used data from chart review to assess the frequency of SDOH impacting AYA patients and setting of initial diagnosis at a US urban safety-net hospital. The association of SDOH variables with delays in treatment, loss of follow-up, and no-shows was tested using Chi-square and t-tests. One hundred seventy five patient charts were reviewed. Sixty-two percent were diagnosed in acute care settings. Substance use disorders, financial, employment, and insurance issues were associated with delayed treatment, with weak to moderate effect sizes. Mental health diagnoses, substance use disorder, homelessness, and financial burdens were associated with patient no-shows, with moderate to large effect sizes. Twenty-five percent of patients received palliative medicine consultation; 70% of these occurred at end of life. This study demonstrates the impact of SDOH on AYA cancer care and the need for policy allowing for intervention on SDOH.

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