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1.
JMIR Form Res ; 8: e48371, 2024 Apr 24.
Article in English | MEDLINE | ID: mdl-38656772

ABSTRACT

BACKGROUND: Research has shown that heterosexual African American male individuals aged 18-24 years have a higher prevalence of sexually transmitted infections (STIs) and are more likely to engage in risky sexual behavior. There is a critical need to promote sexual reproductive health (SRH) services among this population, especially in urban settings. Young African American male individuals use social media platforms to access health information, showcasing the potential of social media and web-based links as tools to leverage electronic engagement with this population to promote SRH care. OBJECTIVE: This study aims to explore electronic engagement with young African American male individuals in discussions about SRH care. This paper focuses on the recruitment and social media marketing methods used to recruit young, heterosexual African American male individuals aged 18-24 years for the Stay Safe Project, a larger study that aims to promote SRH services among this population in Detroit, Michigan. We investigate the use of TinyURL, a URL shortener and customized tool, and culturally informed social media marketing strategies to promote electronic engagement within this population. METHODS: Participants were recruited between December 2021 and February 2022 through various modes, including email listserves, Mailchimp, the UMHealthResearch website, X (formerly Twitter), Facebook, and Instagram. Images and vector graphics of African American male individuals were used to create social media advertisements that directed participants to click on a TinyURL that led to a recruitment survey for the study. RESULTS: TinyURL metrics were used to monitor demographic and user data, analyzing the top countries, browsers, operating systems, and devices of individuals who engaged with the customized TinyURL links and the total human and unique clicks from various social media platforms. Mailchimp was the most successful platform for electronic engagement with human and unique clicks on the custom TinyURL link, followed by Instagram and Facebook. In contrast, X, traditional email, and research recruiting websites had the least engagement among our population. Success was determined based on the type of user and follower for each platform, whether gained in the community through sign-ups or promoted at peak user time and embedded and spotlighted on nontraditional media (eg, social media sites, blogs, and podcasts) for the user. Low engagement (eg, traditional email) from the target population, limited visibility, and fewer followers contributed to decreased engagement. CONCLUSIONS: This study provides insight into leveraging customized, shortened URLs, TinyURL metrics, and social media platforms to improve electronic engagement with young African American male individuals seeking information and resources about SRH care. The results of this study have been used to develop a pilot intervention for this population that will contribute to strategies for encouraging sexual well-being, clinic use, and appropriate linkage to SRH care services among young, heterosexual African American male individuals.

2.
BMC Musculoskelet Disord ; 25(1): 303, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38641788

ABSTRACT

BACKGROUND: Osteoarthritis (OA) is a common orthopedic disorder, and its incidence has been increasing among young adults in recent years. The purpose of this study is to investigate the global, regional, and national trends in OA burden and variation among individuals aged 30 to 44 from 1990 to 2019. METHODS: Data on the incidence, prevalence, and years lived with disability (YLDs) related to OA were sourced from the Global Burden of Disease Study 2019 among individuals aged 30 to 44. These measures were stratified by gender, region, country, and socio-demographic index (SDI). Additionally, we analyzed YLDs attributable to risk factors. RESULTS: In 2019, there were a total of 32,971,701 cases of OA among individuals aged 30 to 44 years worldwide, with an additional 7,794,008 new incident cases reported. OA of the knee was the primary contributor to both incidence and prevalence rates over the past three decades. From 1990 to 2019, both males and females in countries with high SDI and high-middle SDI showed upward trends in age-standardized incidence, prevalence, and YLDs rates. In 2019, the United States of America had the highest age-standardized incidence, prevalence, and YLDs rates. Elevated body-mass index (BMI) was found to be the most prevalent risk factor for osteoarthritis-related YLDs. Age-standardized YLDs rates were positively associated with SDI. CONCLUSIONS: OA remains a significant disease burden on individuals aged 30 to 44, with modifiable risk factors such as unhealthy lifestyle and obesity representing key targets for future interventions aimed at reducing the impact of this condition on younger generations.


Subject(s)
Global Burden of Disease , Osteoarthritis , Male , Female , Young Adult , Humans , Global Health , Osteoarthritis/diagnosis , Osteoarthritis/epidemiology , Prevalence , Cost of Illness , Incidence , Quality-Adjusted Life Years
3.
Front Genet ; 15: 1373448, 2024.
Article in English | MEDLINE | ID: mdl-38655050

ABSTRACT

Introduction: Nuclear undecaprenyl pyrophosphate synthase 1 (NUS1) gene variants are associated with a range of phenotypes, including epilepsy, intellectual disability, cerebellar ataxia, Parkinson's disease, dystonia, and congenital disorders of glycosylation. Additionally, cases describing genotypes and clinical features are rare. Case Presentation: Herein, we report the case of a 23-year-old Chinese female patient who presented with tremors, intellectual disability, and epilepsy. A history of carbon monoxide exposure, brain trauma, or encephalitis was not present in this case. Trio whole-exome sequencing analysis revealed a de novo pathogenic variant of c.750del in exon 4, leading to p.Leu251* amino acid substitution. Genetic analysis failed to identify the identical mutations in the remaining family members who underwent screening. The patient was diagnosed with a rare congenital disease, "congenital glycosylation disorder, type 1aa, autosomal dominant, type 55, with seizures (MRD-55)." Conclusion: We provide further evidence for the role of variants in NUS1 in the development of tremors, epilepsy, and intellectual disabilities. These findings expand our understanding of the clinical phenotypes of NUS1 variants.

4.
BMC Res Notes ; 17(1): 112, 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38644484

ABSTRACT

OBJECTIVE: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy and among the most common malignancies in young adults and requires a unique pattern of healthcare utilization including an acute/emergent presentation and an intensive initial 8 months of therapy followed by two years of outpatient treatment. The COVID-19 pandemic caused massive global disruptions in healthcare use and delivery. This report aims to examine the effects of the COVID-19 pandemic on the presentation, diagnosis and continued management of childhood and young adult ALL in regard to utilization and cost of care among commercially insured individuals in the United States. RESULTS: Utilizing a commercial insurance claims database, 529 pediatric and young adult patients were identified who were diagnosed with ALL between January 2016 and March 2021. New diagnoses were evaluated by era and demographics. Utilization was measured by COVID-related era as number of inpatient and outpatient encounters, inpatient days, and cumulative cost during the initial 8 months of therapy. None of these cost or utilization factors changed significantly during or shortly after the pandemic. These findings reinforce that the necessary care for pediatric and young adult ALL was unwavering despite the massive shifts in the healthcare system caused by the COVID-19 pandemic. This provides a valuable benchmark as we further examine the factors that influence the pandemic's impact on health equity and access to care, especially in vulnerable pediatric and young adult populations. This is the first investigation of the effect of the COVID-19 pandemic on utilization and cost of care in pediatric and young adult cancer.


Subject(s)
COVID-19 , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Humans , COVID-19/epidemiology , COVID-19/economics , Child , Adolescent , Male , Female , Young Adult , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Precursor Cell Lymphoblastic Leukemia-Lymphoma/economics , Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology , United States/epidemiology , Child, Preschool , Health Care Costs/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data , Infant , Adult , SARS-CoV-2 , Pandemics/economics
5.
Child Youth Serv Rev ; 1562024 Jan.
Article in English | MEDLINE | ID: mdl-38644956

ABSTRACT

Purpose: To examine associations of service use (housing, mental health, substance use, education, and employment) with depression and substance use disorder (SUD) trajectories among young adults experiencing homelessness. Method: Secondary data come from 276 young adults who participated in an intervention to reduce substance use and sexual risk behaviors. Participants were recruited from three drop-in centers in Los Angeles County from 2018 to 2020, and completed surveys at baseline, 3-, 6-, 12-, and 24-months post-baseline. Latent growth curve models examined trajectories of depression and SUD; service use in the past three months was used to predict growth trajectories. Results: More frequent use of mental health services (but not other services) at baseline was associated with greater depression symptoms at baseline, linear declines in depression, and a quadratic increase in depression. Service use at baseline was not associated with likelihood of SUD at baseline or changes in SUD over time. Conclusions: Young adults in most need of behavioral services are likely to receive services for mental health, but not SUD. Use of mental health services may reduce depression symptoms over time, but continuing care may be needed to prevent symptom returns. More work is needed to connect young adults with SUD treatment and improve effectiveness of these services.

6.
Front Public Health ; 12: 1341420, 2024.
Article in English | MEDLINE | ID: mdl-38651128

ABSTRACT

Aim: This study aims to analyze some nutrition and health habits of young people and the impact of educational attainment on health. Methods: An observational, descriptive, and cross-sectional study was carried out using surveys. Using non-probabilistic snowball sampling, a previously validated questionnaire was disseminated through networks, collecting a sample of 9,681 people between 18 and 30 years old. Comparative analyses between groups were obtained by clustering and the corresponding statistical tests. Results: The results showed how young people with higher education generally have a lower BMI, a higher healthy nutrition index, less frequent consumption of sugary drinks, and less smoking than their peers with basic education. These healthier habits are reflected in the higher self-perceived health status of the higher-educated group. While for all the educational levels analyzed, the minutes of physical activity practice are above the 150 min recommended by the WHO. Conclusion: Our findings suggest that young people's education level is of fundamental importance for health, particularly for nutritional habits. In general, the lifestyle habits of the young Spanish population are healthy, but there is a need for improvement in those aspects related to nutrition and food.


Subject(s)
Educational Status , Life Style , Nutritional Status , Humans , Spain , Female , Male , Cross-Sectional Studies , Adolescent , Adult , Young Adult , Surveys and Questionnaires , Feeding Behavior , Body Mass Index , Health Behavior , Exercise
7.
Healthcare (Basel) ; 12(8)2024 Apr 15.
Article in English | MEDLINE | ID: mdl-38667595

ABSTRACT

Youth suicide risks have been on the rise or persistently elevated for decades, and Native American communities are especially vulnerable. This study provides a promising framework for suicide prevention among underserved populations in the U.S., especially Native American communities in states lacking strong suicide prevention supports. Our investigation reports the evaluation results of the Question-Persuade-Refer (QPR) gatekeeper training program, a key component of the SAMHSA-funded Choctaw Youth Resilience Initiative (CYRI) implemented by the Mississippi Band of Choctaw Indians (MBCI). QPR trains adult gatekeepers to identify youth at risk of suicide and refer them to certified mental health service providers. Standardized QPR pre-test and post-test training surveys were administered at in-person trainings delivered to youth-serving MBCI organization leaders and staff. Statistical analyses of all survey items indicate that QPR gatekeeper trainings significantly enhanced the knowledge of prevention practices and risk identification skills for the MBCI trainees. The robust evidence of positive changes revealed in this study suggests that QPR can be an effective suicide prevention program for underserved minority communities, especially Native American populations in rural states where suicide is a persistent and leading cause of mortality.

8.
Curr Oncol ; 31(4): 1689-1700, 2024 Mar 22.
Article in English | MEDLINE | ID: mdl-38668031

ABSTRACT

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.


Subject(s)
Neoplasms , Patient Participation , Qualitative Research , Humans , Patient Participation/methods , Adolescent , Young Adult , Neoplasms/psychology , Neoplasms/therapy , Female , Male , Adult , Biomedical Research , Canada , Focus Groups
9.
Article in English | MEDLINE | ID: mdl-38641965

ABSTRACT

AIM: To evaluate the implementation of a mixed virtual and in-person brief intervention for young people, aged 12-25 years, presenting to a large urban mental health service in crisis with suicidal ideation and/or self-harm. METHODS: A pragmatic, real-world evaluation was conducted on the Youth Brief Intervention Service between June 2021 (inception) and October 2022. Service users were offered four sessions over an approximate one-month period. Sessions focused on distress tolerance, safety plans and support systems. Implementation outcomes related to service uptake, retention, fidelity of the model and service user experience. Effectiveness outcomes were measured pre-post and included mental health-related hospital service utilization (primary outcome), functioning, mental health status, self-harm, suicidal ideation and quality of life. RESULTS: Of the 136 young people referred to the Youth Brief Intervention Service, 99 were accepted with 17 disengaging before the first session. Eighty percent of people who commenced, completed the package of care. Young persons' and parent/carers experience of service was high (97% and 88%, respectively). Mental health-related emergency department presentations and inpatient days decreased from 3 months pre-intake to 3 months post-intake (42 vs. 7 presentations, X2 = 25.3, p < .001; 11 vs. 0 inpatient days, X2 = 9.1, p = .01). There were significant improvements in mental health status, days engaging in self-harm, general health and functioning and quality of life. CONCLUSIONS: The Youth Brief Intervention Service is feasible, acceptable, subjectively beneficial and coincided with less mental health-related emergency department presentations and inpatient days, and improved mental health status and behaviour.

10.
Support Care Cancer ; 32(5): 298, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38639810

ABSTRACT

PURPOSE: Colorectal cancer (CRC) incidence and mortality are increasing among young adults (YAs) aged 18-39. This study compared quality of life (QOL) between YA and older adult CRC survivors in the ColoCare Study. METHODS: Participants were grouped by age (years) as follows: 18-39 (YA), 40-49, 50-64, and 65 + . Functional QOL (physical, social, role, emotional, cognitive) and global QOL were assessed with the EORTC-QLQ-C30 at enrollment, 3, 6, and 12 months. Average scores were compared between groups over time using longitudinal mixed-effect modeling. Proportions with clinically meaningful QOL impairment were calculated using age-relevant thresholds and compared between groups over time using logistic regression with mixed effects. RESULTS: Participants (N = 1590) were n = 81 YAs, n = 196 aged 40-49, n = 627 aged 50-64, and n = 686 aged 65 + . Average physical function was better among YAs than participants aged 50-64 (p = 0.010) and 65 + (p < 0.001), and average social function was worse among YAs than aged 65 + (p = 0.046). Relative to YAs, all age groups were less likely to report clinically meaningful social dysfunction (aged 40-49 OR = 0.13, 95%CI = 0.06-0.29; aged 50-64 OR = 0.10, 95%CI = 0.05-0.21; aged 65 + OR = 0.07, 95%CI = 0.04-0.15) and role dysfunction (aged 40-49 OR = 0.36, 95%CI = 0.18-0.75; aged 50-64 OR = 0.41, 95%CI = 0.22-0.78; aged 65 + OR = 0.32, 95%CI = 0.17-0.61). Participants aged 40-49 were also less likely to report physical dysfunction (OR = 0.42, 95%CI = 0.19-0.93). CONCLUSION: YA CRC survivors reported better physical and worse social function compared to older CRC survivors, and YA CRC survivors were more likely to report clinically meaningful social, role, and physical disfunction. Future work should further investigate QOL using age-relevant benchmarks to inform best practices for CRC survivorship care. TRIAL REGISTRATION: NCT02328677, registered December 2014.


Subject(s)
Cancer Survivors , Colorectal Neoplasms , Aged , Humans , Young Adult , Cancer Survivors/psychology , Colorectal Neoplasms/therapy , Colorectal Neoplasms/psychology , Emotions , Quality of Life/psychology , Survivors/psychology , Adolescent , Adult , Middle Aged
12.
Support Care Cancer ; 32(4): 270, 2024 Apr 05.
Article in English | MEDLINE | ID: mdl-38578444

ABSTRACT

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.


Subject(s)
Hematopoietic Stem Cell Transplantation , Telemedicine , Humans , Young Adult , Quality of Life , Pandemics , Health Personnel
13.
Article in English | MEDLINE | ID: mdl-38629470

ABSTRACT

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.

14.
Psychooncology ; 33(4): e6323, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38629761

ABSTRACT

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.


Subject(s)
Cancer Survivors , Neoplasms , Adult , Female , Humans , Young Adult , Cancer Survivors/psychology , Decision Support Techniques , Neoplasms/therapy , Neoplasms/psychology , Pilot Projects , Reproduction
15.
Pediatr Transplant ; 28(3): e14741, 2024 May.
Article in English | MEDLINE | ID: mdl-38566317

ABSTRACT

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.


Subject(s)
Reproductive Health , Transplant Recipients , Humans , Adolescent , Young Adult , Sexual Behavior , Counseling , Risk-Taking
16.
Health Sci Rep ; 7(4): e2020, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38567188

ABSTRACT

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.

17.
Dementia (London) ; : 14713012241245470, 2024 Apr 05.
Article in English | MEDLINE | ID: mdl-38579667

ABSTRACT

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.

18.
J Hematop ; 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38561469

ABSTRACT

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.

19.
Contemp Clin Trials ; : 107545, 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38657732

ABSTRACT

BACKGROUND: Given the increasing number of young adult cancer survivors and the impacts of cancer on various life domains, interventions addressing the psychosocial needs of young adult survivors are crucial. However, such intervention research is limited, and the existing literature has often: 1) overlooked young adult survivors' psychosocial needs; 2) targeted depression, anxiety, or fear of recurrence - rather than positive outcomes like well-being; and 3) failed to consider scalable approaches, like digital health. METHODS: This paper documents the development and refinement of an 8-week digital, coach-assisted intervention targeting hope among young adult cancer survivors (ages 18-39, within 3 years of treatment completion) and presents the protocol of the 2-arm RCT (comparing intervention vs. attention control). The intervention builds upon a 2017-2018 pilot trial (n = 56); intervention refinements were based on subsequent semi-structured interviews among young adult survivors (n = 23). RESULTS: The pending trial design involves an increased sample size (n = 150) to increase power and diversified recruitment efforts (i.e., clinic-based, social media, community-based organizations, etc.) to facilitate intervention reach, accessibility, and scalability. The intervention was enhanced by integrating highly relevant theoretical and therapeutic frameworks, specifically the concept of hope and Acceptance and Commitment Therapy, as well as updating intervention delivery technology. Intervention outcomes include feasibility and acceptability at end-of-treatment and preliminary efficacy on hope (primary outcome) and quality of life measures (secondary outcomes) at end-of-treatment and 16-week follow-up. CONCLUSIONS: This paper may facilitate discussion regarding approaches for addressing the significant psychosocial challenges faced by young adult survivors and catalyze dissemination of trial results. TRIAL REGISTRATION: NCT05905250.

20.
BMC Public Health ; 24(1): 1140, 2024 Apr 24.
Article in English | MEDLINE | ID: mdl-38658887

ABSTRACT

BACKGROUND: The variety of available flavors in e-cigarettes may be a driver for young people to start using these products. The objectives of our study were to examine the relationship between sensation-seeking behavior and e-cigarette use, and to identify the predictors of flavor use patterns among adolescents in Indonesia. METHODS: Students aged 15 to 24 years participated from randomly selected high schools and universities in Indonesia. Participants answered questions about their demographic data, e-cigarette use, conventional cigarette use, and sensation-seeking. Flavor preferences were identified from eight different flavor categories. Multivariate multinomial regression analysis was employed to predict conventional cigarette and e-cigarette use among students. A latent class analysis was conducted to determine the number of latent classes of flavor use. RESULTS: One thousand six hundred high school and university students, with a mean age of 18.2 years (SD 2.19), were recruited between March and August, 2023. Conventional cigarette use in the past 30 days was higher (16.3%) compared to e-cigarette use (13.3%, p = 0.017), with approximately 8.5% of students were being dual users. Higher levels of sensation-seeking significantly increased the odds of being a current e-cigarette user (OR = 2.54, 95%CI 1.99-3.25) and a current conventional cigarette smoker (OR = 2.38, 95%CI 1.85-3.07). Three groups of flavor classes were identified: 1) primarily menthol flavor users (14%), who had a strong association with current conventional cigarette use; 2) experimenters, who mostly preferred fruit-flavored e-cigarettes (76%); and 3) the multi-flavor user group (10%), who had a higher sensation-seeking tendency. CONCLUSIONS: Flavors, especially menthol and fruit flavors, attract youth, broaden the e-cigarette audience and are particularly appealing to high sensation-seekers. Banning these flavors could significantly deter e-cigarette initiation among youth.


Subject(s)
Electronic Nicotine Delivery Systems , Flavoring Agents , Students , Vaping , Humans , Adolescent , Male , Indonesia , Female , Cross-Sectional Studies , Young Adult , Electronic Nicotine Delivery Systems/statistics & numerical data , Vaping/psychology , Vaping/epidemiology , Students/statistics & numerical data , Students/psychology , Surveys and Questionnaires
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