A5018371532- Childhood Cancer Survivors' Quality of Life
- Family Support in Illness
- Reproductive Health and Technologies
- Reproductive Biology and Fertility
- LGBTQ Health, Identity, and Policy
- Adolescent and Pediatric Healthcare
- Cancer survivorship and care
- Posttraumatic Stress Disorder Research
- HIV, Drug Use, Sexual Risk
- Adolescent Sexual and Reproductive Health
- Palliative Care and End-of-Life Issues
- Homelessness and Social Issues
- HIV/AIDS Research and Interventions
- Acute Lymphoblastic Leukemia research
- Disaster Management and Resilience
- Sexual function and dysfunction studies
- Genital Health and Disease
- Literacy, Media, and Education
- Pharmaceutical studies and practices
- Grief, Bereavement, and Mental Health
- EFL/ESL Teaching and Learning
- Religion, Spirituality, and Psychology
- Education and Technology Integration
- Primary Care and Health Outcomes
- Online Learning and Analytics
Ochin
2020-2022
HopeLab
2013-2017
The University of Texas Health Science Center at San Antonio
2013-2017
Radboud University Medical Center
2017
Radboud University Nijmegen
2017
University Medical Center
2017
Future Earth
2016
MultiCare Health System
2016
National Cancer Institute
2016
Livestrong Foundation
2015
Abstract BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks psychosocial issues distinct from those of children or older adults. In this study, the authors examined compared extent to which AYAs treated in pediatric adult oncology settings reported use of, unmet need for, support services. METHODS: Within 4 months initial diagnosis, 215 ages 14 39 years (99 care 116 settings; 75% response rate) were assessed for reporting information resources, emotional...
Abstract Purpose Identifying at‐risk adolescent and young adult (AYA) cancer patients referring them to age‐appropriate psychosocial support services may be instrumental in reducing psychological distress promoting adaptation. The purpose of this study is identify trajectories clinically significant levels throughout the first year following diagnosis distinguish factors, including supportive care service use, that predict extent which AYAs report distress. Methods In prospective multisite...
Purpose To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis adolescent young adult (AYA) patients with cancer. Sociodemographic clinical predictors were examined. Patients Methods In this multisite, longitudinal, prospective study an ethnically diverse sample, 215 age 14 to 39 years assessed for within the first 4 months again 6 12 later. Linear mixed models random intercept slope estimated distress, as measured by Brief Symptom...
Abstract Objectives Post‐traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors childhood cancer, people diagnosed with adolescents and adults (AYAs) face unique psychosocial issues; however, there is little published research PTSS the AYA population. This study examines prevalence predictors among AYAs cancer. Methods As part longitudinal 151 patients aged 15–39 years completed mailed surveys at 6...
The authors conclude that the overall rate of documentation is low and results show disparities among specific groups. While greater numbers discussions may be occurring, there need to create interventions improve documentation.
ABSTRACT Objective Theories of posttraumatic growth suggest that some degree distress is necessary to stimulate growth; yet, investigations the relationship between stress and following trauma are mixed. This study aims understand symptoms in adolescent young adult (AYA) cancer patients. Method 165 AYA patients aged 14–39 years at diagnosis completed standardized measures 12 months diagnosis. Locally weighted scatterplot smoothing regression were used examine linear curvilinear relationships...
Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis adolescent young adult (AYA) patients with cancer. Patients Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample AYA ages 15 to 39 years. One hundred seventy-six (75% response) completed self-report measure HRQoL (Short Form-36 [SF-36]) within 4 months again 12 24 later. Linear mixed models random intercepts...
This study examines posttraumatic growth (PTG) among adolescents and young adults (AYAs) with cancer, as well its correlates trajectories over time. The also explores the buffering role of PTG on associations between stress (PTS), health-related quality life (HRQoL), psychological distress.A multicenter, longitudinal, prospective was conducted AYA cancer patients aged 14-39 years. One hundred sixty-nine completed a self-report measure (PTGI) PTS (PDS) 6, 12, 24 months after baseline (within...
BACKGROUND Cancer‐related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time not examined. This longitudinal study investigated in AYAs the course of 2 years after initial diagnosis. METHODS Young adult patients (18‐39 old) completed Medical Outcomes Study Sexual Functioning Scale within first 4 months their diagnosis (n = 123) again 6 107) 24 later 95). An ordered multinomial response model analyzed changes probability reporting...
HIV carries a significant social stigma, and people who are positive love work with them may experience HIV-related stigma. The effects magnitude of stigma stigmatizing behaviors diverse. This qualitative study explored felt among adults including individual experiences insight into the mechanism Participants shared experiences, how they managed, coped survived. Grounded theory analysis revealed that at core facing managing was living HIV. Components resilience—risk factors, protective...
Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, personality (NEO-Five-Factor Inventory). traits were not associated physical HRQoL. trait neuroticism was negatively mental (β -0.37; p < 0.001) positively psychological 0.47; 0.001). Hierarchical...
Objectives: To assess training needs for providers who care adolescent and young adult (AYA) lesbian, gay, bisexual, transgender/queer questioning (LGBTQ) cancer patients, we conducted a mixed-method survey. During their experience, AYA patients experience physical, psychosocial, reproductive health challenges. In addition to these challenges, LGBTQ individuals are diverse medically underserved population unique challenges disparities in medical care. Methods: Health (n = 351) participated...
Abstract Health and healthcare disparities continue despite clinical, research, policy efforts. Large clinical datasets may not contain data relevant to leveraging these for research be crucial improve health equity. The Disparities Collaborative Research Group was commissioned by the Patient-Centered Outcomes Institute examine science needs quality complete provide recommendations improving around disparities. group convened content experts, researchers, clinicians, patients produce...
Fertility preservation (FP) for patients with cancer is an emerging field. With the advancement of technology, may face a complex decision-making process about whether to preserve fertility. The purpose this article explore how young women perceive patient–provider communication in FP decision making. In study, 25 between ages 18 and 39 were interviewed retrospectively. They one time learn their related FP. Results analysis indicate that seek support involvement from providers throughout...
Adolescent young adult (AYA) cancer survivors continue to have substantive unmet needs. Literature and insights from a task force of survivors, caregivers, survivor advocates convened by Servier Pharmaceuticals indicate desires for peer created provided support. This secondary data analysis information the identified needs in five domains solutions explored four prioritized Ultimately, actionable solution concepts were selected further development. Through their work, many key about...
AbstractThis project sought to understand factors contributing the delayed diagnosis of HIV in state Oregon, USA order increase timely testing and diagnosis. People unaware their positive status account for a disproportionate number transmissions HIV, making profound public health concern. We interviewed sample 17 adults, diverse age, reported risk behaviors sexual orientation, who were identified as being diagnosed late, about experiences with defined AIDS within 12 months first test....
A case of a young adult patient in the days immediately after cancer diagnosis illustrates critical importance three interrelated core coordinating mechanisms-closed-loop communication, shared mental models, and mutual trust-of teamwork an adolescent multidisciplinary oncology team. The both opportunities to increase team member coordination problems that can occur when breaks down. model for is presented, which highlights relationships among these mechanisms demonstrates how balance them...
The Inventory of Youth Adaptation to Loss (IYAL) was developed understand the feelings and social supports experienced by bereaved youth develop an evidence-base for bereavement interventions. sample included 400 ages 9-17, permitting robust psychometric testing IYAL. To evaluate reliability IYAL, framework national in scope, encompassed a range different types programs, purposively sought diversity sample. Exploratory factor analysis identified five factors with distinct sub-scales...
The lesbian, gay, bisexual, transgender, and queer (LGBTQ) Oncofertility Education (LOvE) module aims to improve knowledge on providing inclusive affirming care for LGBTQ adolescents young adults (AYAs) with cancer. objective of this study is evaluate the role in improving reproductive health communication AYAs