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1.
Pediatr Med ; 72024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38616981

RESUMO

Electronic cigarettes, which deliver an aerosolized, nicotine-containing product upon inhalation, are a public health issue that continue to gain popularity among adolescents and young adults in the United States. Use of electronic cigarettes is wide, and extends to pediatric patients with multiple comorbidities, including childhood cancer, leaving them vulnerable to further negative health outcomes. Acute leukemias are the most common type of cancer in pediatric populations, and treatment outcomes for these patients are improving; consequently, there is an increased emphasis on the effect of behavioral lifestyle factors on quality of life in survivorship. The rate of electronic cigarette use is higher among pediatric patients with a history of cancer than those without a history of cancer. Because electronic cigarettes are relatively new, much about their acute and long-term consequences remains unknown, as is their effect on therapy outcomes and long-term survivorship. This review article summarizes current knowledge about electronic cigarettes, including their composition and the trends in use among pediatric patients. Furthermore, this review provides a comprehensive description of the impact electronic cigarettes have on leukemia development, treatment and survivorship and highlights gaps in knowledge that will be necessary for developing recommendations, management strategies, and tailored treatments for pediatric leukemia patients and survivors who use these nicotine products.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38613471

RESUMO

Purpose: We investigated the health-related quality of life (HRQoL) of an adolescent and young adult (AYA)-aged South African childhood cancer survivor (CCS) cohort. Methods: Participants completed the Minneapolis-Manchester Quality of Life adolescent and adult forms. The overall Cronbach's alpha coefficients were 0.81 (adolescent form) and 0.92 (adult form). The scale-level content validity indexes were acceptable (0.88 and 0.89 for the adolescent and adult forms, respectively). The total domain and overall HRQoL scores were calculated. Results: Sixty-two survivors completed the adolescent form and 30 completed the adult form. The median age was 17.5 years (range 13-34 years), and the median time from diagnosis was 12 years (male:female ratio 1:1.2). Risk factors for poor physical functioning included age at study visit (p = 0.015), solid tumor diagnosis (p = 0.012), radiotherapy (p = 0.021), and surgery (p = 0.006). Six or more late effects impacted most domains negatively; severe late effects (p = 0.020) decreased physical functioning. Lower socioeconomic status was associated with poorer physical (p = 0.006) and cognitive (p = 0.047) functioning. The adult form cohort had poorer psychological (p = 0.014) and social functioning (p = 0.005) and body image (p = 0.016) than the adolescent form cohort. Conclusion: Older age, radiotherapy, surgery, solid tumor diagnosis, and the number and severity of late effects negatively influenced HRQoL in AYA-aged CCSs. A long-term follow-up (LTFU) risk stratification system should include HRQoL status to assist with holistic LTFU care.

3.
Contemp Clin Trials ; 141: 107537, 2024 Apr 13.
Artigo em Inglês | MEDLINE | ID: mdl-38614445

RESUMO

INTRODUCTION: Children, adolescent, and young adult cancer survivors experience overall increased risks of infertility that are preventable through effective fertility preservation services prior to starting cancer treatment. Oncofertility care is the evidence-based practice of informing newly diagnosed cancer patients about their reproductive risks and supporting shared decision-making on fertility preservation services. Despite longstanding clinical guidelines, oncofertility care delivery continues to be limited and highly variable across adult and pediatric oncology settings. MATERIALS AND METHODS: We describe the design of a stepped wedge cluster randomized clinical trial to evaluate the effectiveness of the multi-component Telehealth Oncofertility Care (TOC) intervention conducted in 20 adult and pediatric oncology clinics across three health systems in Southern California. Intervention components are: 1) electronic health record-based oncofertility needs screen and referral pathway to a virtual oncofertility hub; 2) telehealth oncofertility counseling through the hub; and 3) telehealth oncofertility financial navigation through the hub. We hypothesize the intervention condition will be associated with increased proportions of patients who engage in goal-concordant oncofertility care (i.e., engagement in reproductive risk counseling and fertility preservation services that meet the patient's fertility goals) and improved patient-reported outcomes, compared to the usual care control condition. We will also evaluate intervention implementation in a mixed-methods study guided by implementation science frameworks. DISCUSSION: Our overall goal is to speed implementation of a scalable oncofertility care intervention at cancer diagnosis for children, adolescent and young adult cancer patients to improve their future fertility and quality of life. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT05443737.

4.
Artigo em Inglês | MEDLINE | ID: mdl-38629470

RESUMO

Objective: To examine claims for reversible prescription contraceptives and chlamydia and gonorrhea testing among commercially and Medicaid-insured adolescent and young adult (AYA) females in the United States. Methods: Using IBM MarketScan Research Databases, we identified sexually active, nonpregnant AYA (15- to 24-year-old) females enrolled in 2018. We examined claims for reversible prescription contraceptives and chlamydia and gonorrhea testing, using drug names and diagnosis/procedure codes, by age-group in commercially and Medicaid-insured separately and by race/ethnicity in Medicaid-insured. Results: Among 15- to 19-year-old and 20- to 24-year-old females, 67.2% and 67.9% of commercially insured and 57.3% and 54.0% of Medicaid-insured, respectively, had claims for reversible prescription contraceptives in 2018. Across insurance types among both age-groups, the most common claim for contraceptives was prescription for combined oral contraceptives. Among Medicaid-insured 15- to 19-year-olds, claims for contraceptives ranged from 42.6% for Hispanic females to 63.4% for non-Hispanic White females; among Medicaid-insured 20- to 24-year-olds, claims ranged from 50.4% for non-Hispanic Black females to 57.0% for non-Hispanic White females. Approximately half of the commercially and Medicaid-insured females had claims for chlamydia and gonorrhea testing. Non-Hispanic Black females had the highest percentages of claims for chlamydia testing (56.3% among 15- to 19-year-olds and 61.1% among 20- to 24-year-olds) and gonorrhea testing (61.6% among 15- to 19-year-olds and 64.9% among 20- to 24-year-olds). Conclusion: Approximately, two-thirds of commercially insured and more than half of Medicaid-insured, sexually active, nonpregnant AYA females had claims for reversible prescription contraceptives. Race/ethnicity data were available for Medicaid-insured females, and there were differences in claims for contraceptives and chlamydia and gonorrhea testing by race/ethnicity. Half of the AYA females had claims for chlamydia and gonorrhea testing suggesting missed opportunities.

5.
Urol Clin North Am ; 51(2): 187-196, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38609191

RESUMO

The health care needs children with spina bifida evolve over their lifetime; continued, regular contact with appropraitely trained, multidisciplinary providers is crucial to a patient's health and quality of life. Substantial research has been conducted to improve the transition process starting at an early age; however, there continue to be strong barriers to successful transition. This article reviews key aspects of the care of patients with spina bifida, the impact of inadequate transition to adult care, barriers to transition, and offers a potential vision for the future.


Assuntos
Disrafismo Espinal , Cuidado Transicional , Adulto , Criança , Humanos , Qualidade de Vida , Disrafismo Espinal/terapia
6.
Cancers (Basel) ; 16(7)2024 Mar 29.
Artigo em Inglês | MEDLINE | ID: mdl-38611010

RESUMO

The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.

7.
Support Care Cancer ; 32(4): 270, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38578444

RESUMO

PURPOSE: The COVID-19 pandemic shifted the healthcare field from in-person clinic visits to virtual-based telehealth appointments. This study explored young adult (YA) hematopoietic stem cell transplantation (HSCT) patient and physician communication preferences and quality of life. METHODS: One researcher conducted semi-structured interviews with n = 10 YA HSCT patients and n = 10 healthcare providers (HPs). HPs included physicians (n = 5) and advanced practice provider (APP) (nurse practitioners and physician assistants) (n = 5). Interviews lasted approximately 10-15 min, were held over Zoom®, and were audio-recorded. Interviews were professionally transcribed verbatim, and two independent researchers conducted a thematic analysis using Dedoose®. RESULTS: Common themes included the following: (1) convenience, (2) improved communication, (3) technology issues, and (4) quality of life for patients and physicians. In general, most patients (n = 7; 70%) preferred in-person visits over telehealth for initial appointments, stating they chose the "social connection" and "engagement" associated with in-person visits. For "check-ins" and follow-up appointments (n = 5; 50%), patients preferred hybrid appointments. Physicians (n = 4; 80%) preferred telehealth stating it was "convenient," "timesaving," and improved "compliance." In contrast, all APP staff (n = 5; 100%) preferred in-person visits, stating in-person improved "relationships" with patients and was more "convenient" than using electronic devices for telehealth. CONCLUSION: Providers differed in preference. APP personnel preferred in-person visits and HSCT physicians preferred telehealth appointments. YA HSCT patients preferred in-person for initial appointments and hybrid clinic visits for follow-up appointments.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Telemedicina , Humanos , Adulto Jovem , Qualidade de Vida , Pandemias , Pessoal de Saúde
8.
J Hematop ; 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38561469

RESUMO

MYC-rearranged B-cell lymphoma (BCL) in the pediatric/young adult (YA) age group differs substantially in disease composition from adult cohorts. However, data regarding the partner genes, concurrent rearrangements, and ultimate diagnoses in these patients is scarce compared to that in adult cohorts. We aimed to characterize the spectrum of MYC-rearranged (MYC-R) mature, aggressive BCL in the pediatric/YA population. A retrospective study of morphologic, immunophenotypic, and fluorescence in situ hybridization (FISH) results of patients age ≤ 30 years with suspected Burkitt lymphoma (BL), diffuse large B-cell lymphoma (DLBCL) or high-grade B-cell lymphoma (HGBCL), and a MYC-R by FISH between 2013-2022 was performed. Two-hundred fifty-eight cases (129 (50%) pediatric (< 18 years) and 129 (50%) YA (18-30 years)) were included. Most MYC-R BCL in pediatric (89%) and YA (66%) cases were BL. While double-hit (DH) cytogenetics (MYC with BCL2 and/or BCL6-R, HGBCL-DH) was rare in the pediatric population (2/129, 2%), HGBCL-DH increased with age and was identified in 17/129 (13%) of YA cases. Most HGBCL-DH had MYC and BCL6-R, while BCL2-R were rare in both groups (3/258, 1%). MYC-R without an IG partner was more common in the YA group (14/116 (12%) vs 2/128 (2%), p = 0.001). The pediatric to YA transition is characterized by decreasing frequency in BL and increasing genetic heterogeneity of MYC-R BCL, with emergence of DH-BCL with MYC and BCL6-R. FISH to evaluate for BCL2 and BCL6 rearrangements is likely not warranted in the pediatric population but should continue to be applied in YA BCL.

9.
Pediatr Transplant ; 28(3): e14741, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38566317

RESUMO

Adolescents and young adults with and without chronic illnesses partake in risk-taking behavior. Clinicians in transplant clinics should be aware of the prevalence of risk-taking behavior in their adolescent and young adult solid organ transplant patients in order to provide complete care. Creating an environment where teens and young adults feel comfortable discussing risky behavior is important and includes creating a privacy policy and increasing comfort of the healthcare provider in asking sensitive questions. This review is intended to help the providers in the transplant clinic screen for and counsel about risk-taking behaviors with their adolescent and young adult patients, specifically around sexual and reproductive health.


Assuntos
Saúde Reprodutiva , Transplantados , Humanos , Adolescente , Adulto Jovem , Comportamento Sexual , Aconselhamento , Assunção de Riscos
10.
Health Sci Rep ; 7(4): e2020, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38567188

RESUMO

Background and Aims: Alopecia areata (AA) is an immune-mediated nonscarring alopecia. Nail changes are a common disfiguring feature of AA with an average prevalence of 30%. We aimed to evaluate the frequency of different types of nail changes and determine demographic and clinical associations. Methods: This cross-sectional study included 197 AA patients. Demographic and clinical variables including the Severity of Alopecia Tool (SALT) score, type of AA, and nail changes were evaluated. Results: Among 197 AA patients with a mean age of 28.95 ± 14.45 years, 50.3% were female. Nail changes were detected in 165 patients (83.8%). The most frequent nail abnormalities were pitting (53.3%), linear line (46.7%), and distal notching (26.9%). AA patients with nail abnormalities were significantly younger than patients without nail changes (25.31 ± 14.96 vs. 32.22 ± 9.77 years; p < 0.001). Considering age groups, younger children (less than 10 years) were more likely to have nail changes than adults (97.1% vs. 76.5%; p < 0.001). The prevalence of linear line (69.6%) and distal notching (46.4%) were significantly higher in the universalis variant compared to other variants (p < 0.001). Pitting (54.5%), distal notching (43.9%), and koilonychia (12.1%) were the most common nail changes in severe forms compared to mild-to-moderate forms (p < 0.009). Conclusions: Our study revealed that young patients with severe disease are prone to nail abnormalities. Pitting, distal notching, and linear line were the most common nail changes. Of note, koilonychia, leukonychia, and red spots lunula are more expected in more severe AA.

11.
Clin Imaging ; 110: 110094, 2024 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-38599926

RESUMO

PURPOSE: In this study, we aimed to assess the new trends in characteristics, molecular subtypes, and imaging findings of breast cancer in very young women. METHODS: We retrospectively reviewed the database of a primary breast cancer referral center in southern Iran in 342 cases of 30-year-old or younger women from 2001 to 2020. Pathologic data, including nuclear subtype and grade, tumor stage, presence of in situ cancer, imaging data including lesion type in mammogram and ultrasound, and treatment data were recorded. Descriptive statistics were applied. Differences between categorical values between groups were compared using Pearson's Chi-square test. RESULTS: The mean age was 27.89 years. The tumor type was invasive ductal carcinoma in 82 % of cases. Fourteen patients (4.4 %) had only in situ cancer, and 170 patients had in situ components (49.7 %). Molecular subtypes were available in 278 patients, including 117 (42.1 %) Luminal A, 64 (23.0 %) Luminal B, 58 (20.9 %) triple negative, and 39 (14 %) HER2 Enriched. In those with mammograms available, 63 (30.1 %) had no findings, 53 (25.3 %) had mass, 27 (12.9 %) had asymmetry, whether focal or global, 21 (10 %) had microcalcifications solely, and 45 (21.5 %) had more than one finding. Microcalcifications were significantly more common in Luminal cancers than HER2 and triple-negative cancers (p = 0.041). CONCLUSION: Our study shows the most common subtype to be Luminal A cancer, with 74 % of the tumors being larger than 2 cm at the time of diagnosis. Irregular masses with non-circumscribed margins were the most common imaging findings.

12.
Front Psychiatry ; 15: 1380354, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38590788

RESUMO

Introduction: Emotion dysregulation is a transdiagnostic marker for vulnerability and has high comorbidity rates across various range of disorders among adolescents and young adults, highlighting the crucial need for precise assessment tools to recognize its significant impact on well-being. The Difficulties in Emotion Regulation Scale Short Form (DERS-SF) is a comprehensive instrument designed to measure the ability to regulate emotion. This study aimed to investigate the psychometric properties of DERS-SF among the non-clinical population, particularly high school and university students in Indonesia. Methods: A total of 738 senior high school and university students completed the Indonesian version of DERS-SF and standard questionnaires to assess its validity, consisting of the Depression Anxiety Stress Scale (DASS), the Beck Depression Inventory-II (BDI-II) for young adults and the Children Depression Inventory (CDI) for adolescents. Three models were examined in factorial validity tests using confirmatory factor analysis. Results: The results showed that DERS-SF had an overall good internal consistency with Cronbach's alpha coefficient of.89 for the 18-item version,.90 for the 17-item version, and.91 for the 15-item version. Test-retest reliability was moderate with a value of.67. In addition, it had good satisfactory content as shown by item content validity index (I-CVI) = .96 and scale content validity index (S-CVI) = .83, as well as convergent validity. All subscales scores showed a positive and strong correlation with DASS, BDI-II, and CDI except awareness. Based on confirmatory factor analysis (CFA), the correlated 6-factor model excluding item number 6, and the 5-factor model excluding awareness were suitable to use in non-clinical populations. Conclusion: This study established the removal of the awareness subscale in the DERS-SF Indonesian version, resulting in better reliability and validity than the original version with complete subscales.

13.
J Res Adolesc ; 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38595030

RESUMO

The loss of John Schulenberg reverberates across the developmental and prevention sciences. In honor of his many contributions, this paper applies his ideas of developmental continuity and discontinuity to understand the process by which PROSPER delivered universal prevention programs (delivered in Grades 6 and 7) affect young adult outcomes. Guided by these developmental models, we deconstructed adolescent substance use initiation trajectories into two discrete phases-early and late adolescence, demarcated by substance use initiation levels at the end of 9th grade. We evaluated the effects of PROSPER interventions on these phases, and in turn, the effects of adolescent substance use initiation on young adult antisocial behavior, alcohol and drug use consequences, and depression symptoms. This sample included 1,984 young adults who participated in the PROSPER intervention trial in Grade 6 (two cohorts, 2002 and 2003), followed over 8 adolescent measurement occasions (Fall and Spring of Grade 6; Spring of Grades 7-12). Young adult outcomes were averaged across three waves (collected at ages 20, 23, and 25). PROSPER interventions were associated with reduced substance use initiation in early adolescence, but not escalation during late adolescence. In turn, substance use in both early and late adolescence was uniquely associated with young adult antisocial behavior, depression symptoms, and substance use consequences. PROSPER interventions were associated with young adult antisocial behavior and problematic substance use via reduced risk for early initiation status. Findings are discussed in terms of developmental continuity and discontinuity.

14.
Artigo em Inglês | MEDLINE | ID: mdl-38597951

RESUMO

Purpose: Social anxiety disorder (SAD) remains an understudied potential link between the cancer experience and adolescent and young adult (AYA) cancer survivors' poor psychosocial outcomes. We investigated the frequency and duration of, as well as factors associated with, symptoms of SAD among AYAs with cancer. Methods: This longitudinal, mixed-methods study involved online surveys (including a validated screening tool for SAD) at recruitment and 6 months later, and a structured clinical interview. Results: Twenty-eight AYAs (aged 12-30 years, <1-year postdiagnosis, 50% male) completed the first survey (M = 6 months postdiagnosis). About 32% reported clinically significant SAD symptoms. Fourteen completed the follow-up survey (M = 12 months postdiagnosis), of which 9 (62%) reported persistent or worse symptoms of SAD significantly associated with emotional distress, physical appearance concerns, negative social cognitions, and depression. Conclusion: A subset of AYAs with cancer may experience clinically significant SAD symptoms that can affect their psychosocial well-being. Further work on how to best identify and support AYAs with SAD is needed.

15.
Ann Surg Treat Res ; 106(4): 231-236, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38586556

RESUMO

Purpose: This study evaluated the difference in the recurrence of inguinal hernia in young adult patients who underwent either high ligation alone or high ligation with posterior wall repair using nationwide data. Methods: This retrospective study included young adult patients (aged 16-30 years) who underwent surgery for inguinal hernia between June 1, 2013 and December 31, 2020. Data from the National Health Information Database from the Korea Health Insurance Service were used for this study. Patients were divided into 2 groups (high ligation alone and posterior wall repair). The primary outcome was the difference in recurrent inguinal hernia surgeries between the 2 groups. Results: Among the 10,803 patients included in the study, 947 underwent high ligation alone, and 9,856 underwent high ligation with posterior wall repair. Recurrence was observed in 18 patients (1.9%) in the high ligation only group and 84 (0.85%) in the high ligation with posterior wall repair group. Log-rank test findings revealed that recurrence was less frequent in the high ligation with posterior wall repair group than in the high ligation only group (P = 0.003). In the multivariate analysis of factors influencing recurrence, posterior wall repair (hazard ratio, 0.241; P = 0.001) was shown to significantly lower the recurrence. Conclusion: Posterior wall repair might be necessary for inguinal hernia repair in young adults.

16.
Cureus ; 16(3): e55615, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38586771

RESUMO

Kikuchi-Fujimoto disease (KFD), also known as histiocytic necrotizing lymphadenitis, is a rare benign condition characterized by cervical lymphadenopathy and constitutional symptoms mimicking tuberculosis. We present the case of a 22-year-old male who presented with fever, dry cough, loss of appetite, multiple joint pains for 15 days, and loss of weight for one month. Physical examination revealed palpable cervical, occipital, axillary, and inguinal lymphadenopathy, and laboratory investigations were within normal limits except for raised erythrocyte sedimentation rate (ESR). Contrast-enhanced computed tomography (CECT) showed mediastinal lymphadenopathy with no pleuroparenchymal abnormality of the lung. Excision biopsy of a cervical lymph node confirmed necrotizing lymphadenitis consistent with KFD. The patient was treated with nonsteroidal anti-inflammatory drugs (NSAIDs) and glucocorticoids, resulting in the resolution of symptoms and regression of lymphadenopathy. This case signifies the importance of considering KFD in the differential diagnosis of lymphadenopathy and highlights the significance of histopathological evaluation for accurate diagnosis and management guidance.

17.
Mol Ther Oncol ; 32(1): 200786, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38596288

RESUMO

Oncogenic drivers such as KRAS extensively modulate the tumor inflammatory microenvironment (TIME) of colorectal cancer (CRC). The influence of KRAS on modulating immune cell composition remains unclear. The objective of this study was to identify signatures of infiltrative immune cells and distinctive patterns that differ between RAS wild-type (WT) and oncogenic mutant (MT) CRC that explain immune evasion in MT tumors. A total of 7,801 CRC specimens were analyzed using next-generation DNA sequencing, whole-exome sequencing, and/or whole transcriptome sequencing. Deficiency of mismatch repair (dMMR)/microsatellite instability (MSI) and tumor mutation burden (TMB) were also assessed. KRAS mutations were present in 48% of CRC, similarly distributed in patients younger than vs. 50 years and older. In microsatellite stable (MSS) KRAS MT tumors, composition of the TIME included higher neutrophil infiltration and lower infiltration of B cells. MSI-H/dMMR was significantly more prevalent in RAS WT (9.1%) than in KRAS MT (2.9%) CRC. In MSS CRC, TMB-high cases were significantly higher in RAS MT (3.1%) than in RAS WT (2.1%) tumors. KRAS and NRAS mutations are associated with increased neutrophil infiltration, with codon-specific differences. These results demonstrate significant differences in the TIME of RAS mutant CRC that match previous reports of immunoevasive characteristics of such tumors.

18.
Dementia (London) ; : 14713012241245470, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38579667

RESUMO

Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult relatives' experiences of participation in everyday activities and how their participation was affected by having a parent with dementia. The study followed a qualitative, descriptive approach. Semi-structured individual interviews with 11 young adult relatives (aged 21 - 31) of parents with dementia were conducted. The interviews were analysed using Kirsti Malterud's iterative cross case analysis method 'Systematic text condensation'. The analysis identified three categories: Dilemmas of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced dilemmas and constraints regarding participation in everyday activities usually related to young adulthood. They navigated situations where they were to choose between the parent with dementia and their own everyday activities and they often downgraded or cancelled participation in own activities related to leisure time, school, job and career. Moreover, their participation seemed affected by chores and responsibilities resulting in a lack of energy leading them to forego social activities in particular or change their choice of activities. The young adult relatives need help and support in their everyday lives. Health care professionals are encouraged to focus on relieving them from some of the responsibilities and practical tasks enabling them to live their own lives as young adults, while being part of the family and contributing towards the responsibilities and tasks with which they can cope.

19.
Preprint em Espanhol | SciELO Preprints | ID: pps-8340

RESUMO

With the growth and aging of the population, along with economic growth and changes in lifestyles associated with increased quality of life, the main burden of disease shifted from infectious diseases to noncommunicable and complex diseases. However, it is cancer that has increased its incidence in the world population, especially in low- and middle-income countries, where 70% of cancer deaths occur.  The research is articulated to sustainable development goal three, in particular on the effect of cancer on cognitive functioning, because cancer pain impairs cognitive functioning. A simple review for executive functions and breast cancer in PROSPERO indicated an absence of reviews on this topic. Reason why, our aim is to describe executive functions and treatment effect by chemotherapy/radiotherapy in young adult breast cancer patients between 2015 and 2020 in the scientific literature. Materials and methods: exploratory literature review according to PRISMA protocol for exploratory reviews. Articles published in Scopus, PubMed, ScienceDirect, scielo, google academic, in Spanish, English, French. With the keywords: ("Executive Function") AND ("Neoplasms") OR "breast cancer" OR "Drug Therapy," AND ("Young Adult"), searches were performed until February 4, 2020. Results: 16 articles included in the review. Clinical and methodological heterogeneity was found on patients' executive functions and treatment. However, we did find executive function impairment among patients assessed by both treatment and cancer. Conclusions: A systematic review on the subject and meta-analysis are suggested to identify the effect size, accompanied by the statistical evidence identified in the studies. Colombia could investigate this topic because there is no Colombian research.


Con el crecimiento y envejecimiento de la población, junto al crecimiento económico y los cambios en los estilos de vida asociados al incremento en la calidad de vida, la principal carga de morbilidad pasó de las enfermedades infecciosas a las no transmisibles y complejas. Sin embargo, es el cáncer incrementó su incidencia en la población mundial, especialmente en países de ingresos bajos y medios, dónde el 70% de las muertes por cáncer se presentan.  La investigación se articula al objetivo de desarrollo sostenible tres, en particular sobre el efecto del cáncer sobre el funcionamiento cognitivo, debido a que el dolor por cáncer deteriora el funcionamiento cognitivo. Una revisión sencilla por funciones ejecutivas y cáncer de mama en PROSPERO indicó una ausencia de revisiones en este tema. Razón por la cual, nuestro objetivo es describir las funciones ejecutivas y el efecto del tratamiento por quimioterapia/radioterapia en pacientes con cáncer de mama en adultos jóvenes entre 2015 y 2020 en la literatura científica. Materiales y métodos: Revisión exploratoria de literatura según protocolo PRISMA para revisiones exploratorias. Artículos publicados en Scopus, PubMed, ScienceDirect, scielo, google académico, en idioma español, inglés, francés. Con las palabras clave: ("Executive Function") AND ("Neoplasms") OR "breast cancer" OR "Drug Therapy," AND ("Young Adult"), las búsquedas se realizaron hasta el 4 de febrero de 2020. Resultados: 16 artículos incluidos en la revisión. Se encontró heterogeneidad clínica y metodológica sobre las funciones ejecutivas de los pacientes y el tratamiento. Sin embargo, sí se encontró afectación de funciones ejecutivas entre los pacientes evaluados tanto por el tratamiento cómo por el cáncer. Conclusiones: Se sugiere una revisión sistemática sobre el tema y meta-análisis para identificar el tamaño del efecto, acompañado de la evidencia estadística identificada en los estudios. Colombia podría investigar sobre esta temática debido a que no hay investigaciones colombianas.


Com o crescimento e o envelhecimento da população, juntamente com o desenvolvimento económico e as mudanças nos estilos de vida associadas ao aumento da qualidade de vida, o principal fardo da doença mudou de doenças infecciosas para doenças não transmissíveis e complexas. No entanto, é o câncer que aumentou a sua incidência na população mundial, especialmente nos países de baixa e média renda, onde 70% das mortes por câncer ocorrem. A pesquisa está articulada com o Objectivo de Desenvolvimento Sustentável 3, em particular sobre o efeito do câncer sobre o funcionamento cognitivo, porque a dor do cancro prejudica a função cognitiva. Uma simples revisão para funções executivas e câncer de mama em PROSPERO indicou uma ausência de comentários sobre este tópico. A razão pela qual, nosso objetivo é descrever as funções executivas e o efeito do tratamento por quimioterapia/radioterapia em pacientes jovens adultos com câncer de mama entre 2015 e 2020 na literatura científica. Materiais e métodos: revisão da literatura exploratória de acordo com o protocolo PRISMA para revisões exploratórias. Artigos publicados em Scopus, PubMed, ScienceDirect, scielo, google academic, em espanhol, inglês, francês. Com as palavras-chave: ("Função Executiva") E ("Neoplasmas") OU "câncer de mama" OU" Terapia de drogas," E ("Jovem Adulto"), as pesquisas foram realizadas até 4 de fevereiro de 2020. Resultados: 16 artigos incluídos na revisão. Foi encontrada heterogeneidade clínica e metodológica nas funções executivas e no tratamento dos pacientes. No entanto, descobrimos que a função executiva foi prejudicada entre os pacientes avaliados tanto pelo tratamento como pelo câncer. Conclusões: Sugere-se uma revisão sistemática do assunto e meta-análise para identificar o tamanho do efeito, acompanhada das provas estatísticas identificadas nos estudos. A Colômbia poderia investigar este assunto porque não há pesquisa colombiana.

20.
Psychooncology ; 33(4): e6323, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38629761

RESUMO

OBJECTIVE: Many young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web-based, self-guided decision aid and planning tool for family building after cancer (disease agnostic). METHODS: A single-arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital-based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one- and 3-months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t-tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated. RESULTS: Participants (N = 98) averaged 31 years old (SD = 5.61); 71% were nulliparous. Enrollment rate was 73%, T1-T2 completion rate was 80%, and 93% accessed the website. From T1-T2, participants reported improvements in decisional conflict (p < 0.001; Cohen's d = 0.85), unmet information needs (p < 0.001; Cohen's d = 0.70), self-efficacy (p = 0.003; Cohen's d = 0.40), and self-efficacy for managing negative emotions (p = 0.03; Cohen's d = 0.29); effects were sustained at T3. There was no change in reproductive distress (p = 0.22). By T3, 94% reported increased consideration of preparatory actions and 20%-61% completed such actions. CONCLUSIONS: The Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web-based tool may help women make decisions about family building after cancer and prepare for potential challenges.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Feminino , Humanos , Adulto Jovem , Sobreviventes de Câncer/psicologia , Técnicas de Apoio para a Decisão , Neoplasias/terapia , Neoplasias/psicologia , Projetos Piloto , Reprodução
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