Adolescents And Young Adults Research Articles

Patient-Reported Quality of Life at Diagnosis in Adolescent and Young Adults With Cancer.

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. 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. 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). 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.

S48 - Barriers and Facilitators to Integrating Medications for Opioid Use Disorder (MOUD) and HIV Pre-Exposure Prophylaxis (PrEP) for Adolescents and Young Adults (AYA)

S48 - Barriers and Facilitators to Integrating Medications for Opioid Use Disorder (MOUD) and HIV Pre-Exposure Prophylaxis (PrEP) for Adolescents and Young Adults (AYA)

Temporal trends of adolescents and young adults (AYA) with gynecologic malignancy in the United States

In this retrospective cohort study examining 13,763,447 patients with 16 different malignancies, including 1,232,841 patients with five gynecologic malignancies (uterus [n = 690,590], ovary [n = 276,812], cervix [n = 166,779], vulva [n = 81,575], and vagina [n = 17,085]), identified in the Commission-on-Cancer’s National Cancer Database from 2004 to 2020, cervical cancer (25.3 %) had the highest rate of adolescent and young adult (AYA) patients among 27 gender-stratified cancer groups (25.3%). There were 8 groups that the annual rates of AYA patients statistically increased during the study period at a P < .05 level, of which 7 (87.5 %) groups were for female malignancies. Among these 7 female malignancies, the annual percentage rate increase in AYA patients was largest for colorectal cancer (4.1 %, 95 % confidence interval 3.6–4.6), followed by malignancies in the ovary (3.1 %, 95 % confidence interval 1.6–4.5 in 2014–2020), pancreas (2.1 %, 95 % confidence interval 1.0–3.2), uterus (1.2 %, 95 % confidence interval 0.3–2.0 in 2013–2020), breast (0.8 %, 95 % confidence interval 0.2–1.4 in 2012–2020), cervix (0.8 %, 95 % confidence interval 0.2–1.5 in 2011–2020), and kidney (0.4 %, 95 % confidence interval 0.1–0.9). In conclusion, these data suggested that proportion of cancers attributable to AYA patients is increasing in several obesity-related female malignancies and in the three most common gynecologic malignancies.

The burden oflow back pain in adolescents and young adults.

Low back pain is highly prevalent and the main cause of years lived with disability, but data on the burden and trends of low back pain (LBP) in adolescents and young adults (AYAs) are sparse. To assess trends in the burden of LBP among AYAs aged 15-39years at the global, regional and national levels from 1990 to 2019. Data from the Global Burden of Disease (GBD) 2019 were used to analyze incidence, prevalence and Disability-adjusted life year (DALY) due to LBP at global, regional, and national levels. Joinpoint regression analysis calculated the average annual percentage changes (AAPC). Then analyse the association between incidence, prevalence and DALYs and socioeconomic development using the GBD Socio-demographic Index (SDI). Finally, projections were made until 2030 and calculated in Nordpred. The incidence, prevalence and DALYs rates (95%UI) were 2252.78 (1809.47-2784.79), 5473.43 (4488.62-6528.15) and 627.66 (419.71-866.97) in 2019, respectively. From 1990 to 2019, the incidence, prevalence, and DALYs rates AAPC (95%CI) were -0.49 (-0.56 to -0.42), -0.58 (-0.65 to -0.51) and -0.57 (-0.64 to -0.5), respectively. Incidence, prevalence, and DALYs rates in South Asia, East Asia, High-income North America, Western Europe, and Australasia decreased with SDI. Incidence, prevalence, and DALYs rates in Central Asia, Central Europe, and Eastern Europe decreased and then increased with SDI. At the national level, the incidence, prevalence, and DALYs rates are high in the United States and low in India and China. From the 2020 to 2030, most regions is predicted to decline. LBP in AYAs is a major global public problem with a high burden. There are large differences in incidence, prevalence and DALYs across SDIs, regions and countries. there is still a need to focus on LBP in AYAs and tailor interventions to reduce the future burden of this condition.

Helping adolescents and young adults (AYA) with cancer manage identity distress: Enhancing clinician-AYA patient communication to promote identity development

ObjectiveA 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. MethodsIn-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. ResultsFourteen 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 implicationsBoth 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.

Long-term oncological outcomes of follicular thyroid cancer in adolescents and young adults: A nationwide population-based study.

Follicular thyroid carcinoma (FTC) in adolescents and young adults (AYAs) is rare and data on long-term oncological outcomes are scarce. This study aimed to describe the long-term recurrence and survival rates of AYAs with FTC, and identify risk factors for recurrence. This is a retrospective cohort study combining two national databases, including all patients aged 15-39years, diagnosed with FTC in The Netherlands between 2000 and 2016. Age, sex, tumor size, focality, positive margins, angioinvasion, pT-stage, and pN-stage were included in a Cox proportional hazard model to identify risk factors for recurrence. We included 192 patients. Median age was 31.0years (IQR 24.7-36.3) and the male to female ratio was 1:4.1. Most patients presented with a minimally invasive FTC (MI-FTC) (95%). Five patients presented with synchronous metastases (2.6%), including two with locoregional metastases (1%) and three with distant metastases (1.6%). During a median follow-up of 12.0years, three patients developed a recurrence (1.6%), of which one patient developed a local recurrence (33%), and two patients a distant recurrence (67%). Five patients died during follow-up (2.6%). Cause of death was not captured. A Cox proportional hazard model could not be performed due to the low number of recurrences. FTC in AYAs is generally characterized as a low-risk tumor, as it exhibits a very low recurrence rate, a high overall survival, and it typically presents as MI-FTC without synchronous metastases. These findings underscore the favorable long-term oncological prognosis of FTC in AYAs.

A qualitative assessment of retention in HIV care among adolescents and young adults (AYA) living with HIV in New York City

ABSTRACT Retention in HIV care is a critical precursor to ending the epidemic yet remains suboptimal in the United States. Gaining an understanding of the challenges faced by adolescents and young adults (AYA) living with HIV is essential to improving retention in HIV care. This study explored the barriers and facilitators to retention in care among Black and Hispanic AYA living with HIV. Audio-recorded semi-structured interviews were conducted with 20 AYA living with HIV ages 16–29 years in New York City. Our methods entailed an inductive content analysis to explore key concepts, reconcile codes, and identify a theme, categories, and subcategories. Bronfenbrenner’s socioecological model evolved as an organizing framework around barriers and facilitators to retention in care at the individual, interpersonal, healthcare system, and structural level. Data analysis yielded one overarching theme—the influence of psychosocial factors on retention in HIV care. Psychological struggles, powerlessness, clinic-level characteristics, and socioeconomic struggles were barriers reported by participants. Self-responsibility, social support, patient-friendly healthcare services, and socioeconomic resources emerged as facilitators. Retention in HIV care among AYA living with HIV is a multifaceted and complex phenomenon that involves multiple systems. Strengthening patients, healthcare system, and community partnerships can help address some of the HIV-related health disparities.

Age-standardized incidence, prevalence, and mortality rates of autoimmune diseases in adolescents and young adults (15–39 years): an analysis based on the global burden of disease study 2021

BackgroundAutoimmune diseases (ADs) present significant health challenges globally, especially among adolescents and young adults (AYAs) due to their unique developmental stages. Comprehensive analyses of their burden are limited. This study leverages the Global Burden of Disease (GBD) 2021 data to assess the global, regional, and national burden and trends of major ADs among AYAs from 1990 to 2021.MethodsUtilizing data from the Global Burden of Disease (GBD) Study 2021 for individuals aged 15–39 years, we employed a direct method for age standardization to calculate estimates along with 95% uncertainty intervals (UIs) for assessing the age-standardized incidence rates (ASIR), prevalence rates (ASPR), and mortality rates (ASMR) of ADs. The diseases analyzed included rheumatoid arthritis (RA), inflammatory bowel disease (IBD), multiple sclerosis (MS), type 1 diabetes mellitus (T1DM), Asthma, and Psoriasis. Trends from 1990 to 2021 were analyzed using Joinpoint regression, providing average annual percentage changes (AAPC) and 95% confidence intervals (CIs).ResultIn 2021, the global ASIR, ASPR, and ASMR of RA among AYAs (per 100,000 population) were 9.46 (95% UI: 5.92 to 13.54), 104.35 (77.44 to 137.84), and 0.016 (0.013 to 0.019), respectively. For IBD, the corresponding rates were 4.08 (3.07 to 5.37), 29.55 (23.00 to 37.83), and 0.10 (0.07 to 0.12). MS exhibited rates of 1.40 (0.93 to 1.93), 16.05 (12.73 to 19.75), and 0.05 (0.04 to 0.05), respectively. T1DM had rates of 6.63 (3.08 to 11.84), 245.51 (194.21 to 307.56), and 0.54 (0.47 to 0.60). Asthma demonstrated rates of 232.22 (132.11 to 361.24), 2245.51 (1671.05 to 2917.57), and 0.89 (0.77 to 1.08). Psoriasis showed rates of 55.08 (48.53 to 61.93) and 426.16 (394.12 to 460.18) for ASIR and ASPR, respectively. From 1990 to 2021, the global ASIR of RA (AAPC = 0.47, 95% CI: 0.46 to 0.49), IBD (0.22 [0.12 to 0.33]), MS (0.22 [0.19 to 0.26]), T1DM (0.83 [0.80 to 0.86]), and Psoriasis (0.33 [0.31 to 0.34]) showed increasing trends, whereas Asthma (-0.96 [-1.03 to -0.88]) showed a decreasing trend. The global ASPR of RA (0.70 [0.68 to 0.73]), MS (0.35 [0.32 to 0.37]), T1DM (0.68 [0.66 to 0.69]), and Psoriasis (0.29 [0.27 to 0.32]) also showed increasing trends, whereas IBD (-0.20 [-0.27 to -0.13]) and Asthma (-1.25 [-1.31 to -1.19]) showed decreasing trends. Notably, the estimated global ASMR of RA (-2.35 [-2.57 to -2.12]), MS (-0.63 [-0.86 to -0.41]), T1DM (-0.35 [-0.56 to -0.14]), and Asthma (-1.35 [-1.44 to -1.26]) in AYAs declined. Additionally, the burden of disease for ADs in AYAs varies considerably across continents and between 204 countries and territories.ConclusionADs among AYAs present a substantial public health burden with notable regional disparities in incidence, prevalence, and mortality rates. Understanding these patterns is essential for developing targeted public health interventions and policies to mitigate the impact of ADs in this population.

Awareness of cancer and its associated factors for parents of adolescents and young adults: A cross-sectional study.

Cancer is a common health problem worldwide. Early cancer education for adolescents and young adults (AYAs) is important for the prevention or early detection of cancer. In this questionnaire-based cross-sectional study, we examined the cancer awareness among parents of AYAs. Japanese adults with junior or senior high school children were included in this study. The cancer awareness measure (CAM) was used to assess cancer awareness, and the survey was conducted in December 2021. Warning signs, barriers to seeking help, and risk factors were surveyed using an online anonymous questionnaire. In addition, personal information, the presence of other cancer survivors, attendance at cancer seminars, conversations with children about cancer, interest in cancer education for children, and previous cancer screening were surveyed. A t-test or Spearman correlation coefficient was used to compare the total CAM scores for the individual factors. The relationship between cancer-screening behavior and individual factors was analyzed using the χ2 test. In addition, multiple regression analysis or logistic regression analysis was used to identify the factors influencing cancer awareness or cancer-screening behavior. Responses were obtained from the 612 participants. The mean CAM score was 3.7 for cancer warning signs, 4.3 for barriers to seeking help, and 6.5 for risk factors. Cancer warning signs were associated with gender and the presence of a spouse, family member, or friend who had experienced cancer. Barriers to seeking help were associated with age, gender, and education, while risk factors were associated with gender, education, and conversations about cancer with children. Moreover, these scores were associated with each cancer screening behavior. Cancer awareness among Japanese adults with AYAs was influenced by gender, academic background, occupation, the presence of cancer survivors around them, and whether they had conversations about cancer with their children, as well as their cancer screening behavior.

Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.

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.

Utilization of the Adolescent and Young Adult Psycho-Oncology Screening Tool in a Pediatric Hospital Adolescent/Young Adult Program.

Purpose: The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. Methods: AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent t-tests, and binary logistic regressions were conducted for data analysis. Results: Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. Conclusions: Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.

Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.

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.

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

Piloting a Patient-Driven Online Survey to Better Understand Cancer in Adolescents and Young Adults (AYA) in the United States.

Adolescents and young adults (AYAs) with cancer are a unique patient population in oncology. An opt-in, secure online survey was conducted among a general population of AYA patients and survivors to better understand the current landscape of AYA cancer. A 28-item online survey was designed for cancer patients and survivors diagnosed between the ages of 18 and 39 years.It comprised questions about demographics, treatment site, clinical trial involvement, support services available, and impact on employment, schooling, and finances. A total of 590 patients registered and 447 (76%) completed the survey.This online exercise was found to be feasible and can serve as an effective method to survey the AYA cancer population.

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

BackgroundDeveloping 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.MethodsA 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.DiscussionPeer2Me 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 RegistrationThe study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).

The pervasive influence of systems of power on transition readiness for adult care in sickle cell disease: A qualitative study.

Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited. To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels. Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework. Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels. Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.

“We did more than survive”: lessons learned from studies of risk and resilience of young people growing up with HIV and mental health needs

ABSTRACT Despite advances in HIV-treatment, adolescents and young adults (AYA) with HIV (AYAHIV) face myriad challenges. They are less likely than children and older adults to be virally suppressed and are at higher risk for mental health conditions compared to their peers who do not have HIV. AYA are also developing in the context of numerous biomedical, neurocognitive, and psychosocial developmental changes. Normative challenges during this time can be exacerbated by HIV and can result in significant physical and mental health problems. Yet, many AYAHIV have shown resilience with positive assets and resources and few health or mental health problems. Historically research has had a risk-focused approach to understanding AYAHIV needs. This paper discusses the rationale for a shift from a risk-focused only approach to one that examines AYAHIV needs from both a risk and resilience perspective. This paper presents: (1) epidemiological data on AYAHIV; (2) conceptual models for understanding both risk (e.g., poverty, stress, trauma, limited resources) and resilience/protective factors (e.g., family and peer support, future orientation, problem-solving skills); (3) global data examining risk and protective factors for physical and mental health challenges; and (4) promising interventions that incorporate elements of resilience to improve overall outcomes among AYAHIV.

A citizen science approach to develop a digital intervention to reduce HIV stigma and promote HIV self-testing among adolescents and young adults: a mixed methods analysis from Kazakhstan.

Kazakhstan has one of the fastest-growing HIV epidemics in the world, with increasing rates among adolescents and young adults (AYA). Innovative strategies are needed to increase HIV testing uptake and decrease HIV stigma among AYA. Citizen science, defined as the active engagement of the general public in scientific research tasks, promotes and facilitates community engagement throughout the research process. This citizen science study used crowdsourcing to engage AYA in Kazakhstan to develop a digital intervention to reduce HIV stigma and promote HIV self-testing. Our objectives in this paper are to describe the approach used, its feasibility and acceptability, and AYA motivations for and lessons learned collaborating on the study. From October 2021 to July 2022, in collaboration with a Community Collaborative Research Board and a Youth Advisory Board, we developed an open call requesting multimedia submissions to reduce HIV testing stigma. Eligible submissions were separated by age group (13-19 or 20-29 years) and judged by a panel composed of AYA (n = 23), healthcare professionals (n = 12), and representatives from the local government and non-governmental organizations (n = 17). Each entry was reviewed by at least four judges and ranked on a 5-point scale. The top 20 open call contestants were asked to submit self-recordings sharing their motivation for and experience participating in the contest and lessons learned. Descriptive statistics were calculated for quantitative data. Qualitative data were coded using open coding. We received 96 submissions from 77 youth across Kazakhstan. Roughly, three-quarters (n = 75/96) of entries met judging eligibility criteria. Of the eligible entries, over half (n = 39/75) scored 3.5 or higher on a 5-point scale (70.0%). The most frequent types of entries were video (n = 36/96, 37.5%), image (n = 28/96, 29.2%) and text (n = 24/96, 25.0%). AYA's primary motivations for collaborating on the study included a desire to improve society and help youth. The main challenges included creating content to address complex information using simple language, finding reliable information online and technological limitations. Crowdsourcing was feasible and highly acceptable among AYA in Kazakhstan. Citizen science approaches hold great promise for addressing the increasingly complex health and social challenges facing communities today.

Claims for Contraceptive Services and Chlamydia and Gonorrhea Testing Among Insured Adolescent and Young Adult Females in the United States.

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.

Just-in-time adaptive interventions for adolescent and young adult health and well-being: protocol for a systematic review

IntroductionHealth behaviours such as exercise and diet strongly influence well-being and disease risk, providing the opportunity for interventions tailored to diverse individual contexts. Precise behaviour interventions are critical during adolescence...