Care For Adolescents And Young Adults Research Articles

Addressing the Transition to Adult Health Care for Adolescents and Young Adults with Pancreatic Disorders.

The transition from pediatric to adult health care is a vulnerable time period for adolescents and young adults (AYA).Guidance on how to effectively implement transition support for AYA with recurrent acute pancreatitis (RAP) and chronic pancreatitis (CP) is lacking. To address this gap, we formed a consortium of pancreatic centers that would work in coordination to test interventions to improve the transition for AYA with RAP and CP.We then performed a baseline assessment of consortium resources and patient transition readiness and developed an educational toolkit for AYA with RAP and CP. Results:Our consortium consists of three National Pancreatic Centers of Excellence, each with a multidisciplinary team to work with AYA with RAP and CP.While our patients ages 18 to 23 were generally seen at the pediatric centers, the baseline assessment of transition readiness suggests that our patients may have higher transition readiness scores than other populations.The educational toolkit contains both pancreas-specific and general guidance to support AYA with RAP and CP during their transition, including guidance on nutrition, pain management, and finding an adult gastroenterologist. Conclusions:We have formed a consortium to test interventions to improve the transition to adult health care for AYA with RAP and CP.We have completed a baseline assessment and developed our first intervention: an educational tool kit.Future work planned includes tests of the tool kit and efforts to improve rates of transfer to an adult provider for YA with RAP and CP.

COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol.

During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology. A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis. Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted. Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program. Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.

Breathing across ages: a systematic review on challenges and components of transitional care for young people with asthma.

Asthma is a chronic condition that affects millions of adolescents and young adults (AYA) worldwide. The transition from pediatric to adult care presents unique challenges for this population, affecting their self-management, quality of life and overall health outcomes. This systematic review aims to consolidate the available evidence on challenges encountered by AYA with asthma during the transition period from child to AYA and on the key elements of transitional care for AYAs with asthma including the outcomes achieved, ultimately enhancing outcomes. A systematic literature search was performed in PubMed, Embase, Medline, Scopus, and Web of Science from their inception to October 2, 2023, to provide an overview of currently available literature. Primary quantitative and qualitative studies, published in peer-reviewed journals that focused on AYA with a confirmed diagnosis of asthma were considered if they focused on challenges encountered by AYA with asthma during the transition process and/or components of transitional care and their outcomes assessed. A total of 855 studies were initially identified and 6 articles were included in this systematic literature review. Several challenges experienced by AYA with asthma were identified including maintaining medication adherence, the need to take responsibility and being involved, understanding their condition and its severity, feeling left out of the care system, and experiencing a lack of engagement. The identified transitional care components included a standardized form for medical data transmission, a joint consultation and to offer several longer consultations. Several international guidelines for asthma care recommend implementing transition programs in the care for AYA with asthma. Such transition programs should include a comprehensive and individualized approach addressing several challenges faced, to ensure optimal outcomes post-transition. However, to date, data on effective components of transitional care facilitating good outcomes were found to be limited. This systematic review underscores the need for larger studies evaluating the effect of the components of transition programs.

Preferences and experiences of parents/guardians of youth with epilepsy and intellectual disability on reproductive health counseling

ObjectiveTo explore the experiences and preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding counseling by neurologists on sexual and reproductive health (SRH) topics such as pregnancy, contraception, menstruation, and folic acid supplementation. MethodsWe conducted semi-structured interviews with parents/guardians of AYAs (12–28 years old) of childbearing potential with co-occurring epilepsy and ID, recruited from a tertiary-care children’s hospital. We confirmed the diagnoses of epilepsy and ID with the patient’s neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis. ResultsTwenty-five parents/guardians completed interviews. Themes included: (1) Parents/guardians believe their child to be immune from sexual abuse due to their supervision, yet desire counseling about abuse recognition and prevention, which they also report not occurring (2) A common opinion was that counseling on menstruation was more relevant to their child's life than counseling about pregnancy-related topics (3) Parents/guardians reported a lack of counseling on pregnancy-related topics such as folic acid supplementation and teratogenesis and generally also reported some degree of interest in hearing about these topics from neurologists (4) Parents/guardians also reported a lack of counseling on drug interactions between contraception and ASMs, and were highly interested in learning more about this topic (5) Parents/guardians want neurologists to initiate annual comprehensive SRH counseling at puberty about most topics, but report that they often initiate SRH discussions themselves. ConclusionParents/guardians of AYAs with epilepsy and ID prefer more frequent, neurologist-initiated, comprehensive conversations surrounding SRH particularly emphasizing menstruation and sexual abuse recognition/prevention. Findings may inform professional and patient education and health systems interventions including development of discussion guides and/or decision aides to improve SRH care for AYAs with epilepsy and ID.

Acute lymphoblastic leukemia in young adults: which treatment?

Despite improvements in survival among pediatric patients with acute lymphoblastic leukemia (ALL), survival outcomes for adolescents and young adults (AYAs) with ALL have lagged. The reasons for the inferior outcomes among AYAs are multifactorial, each presenting unique challenges and requiring novel solutions. First, adverse disease biology is more common among AYAs with ALL. Ongoing trials are investigating novel approaches to treatment, such as incorporating JAK inhibitors for Philadelphia chromosome-like ALL, menin inhibitors for KMT2A-rearranged ALL, and BCL2/BCLXL inhibition for T-cell ALL. Poorer adherence to therapy also impedes improvements in survival outcomes for AYAs with ALL, but early data suggest that technology, both for monitoring and interventions, may be useful in increasing adherence among this population. Finally, better access to clinical trials and collaboration between pediatric and adult centers is critical in advancing the care of AYAs with ALL. Significant improvements have been made over the past decade, but recognizing, understanding, and addressing each of these unique challenges provides hope that the outcomes for AYAs will continue to improve even further.

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature.

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]-designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

Understanding identity construction among deaf adolescents and young adults: implications for the delivery of person and family-centered care in audiological rehabilitation.

The provision of holistic person and family-centered care in the audiological rehabilitation of adolescents and young adults (AYA) requires in-depth consideration of identity construction. The purpose of this research study was to describe the lived experience of identity construction among deaf AYA. The thoughts, perceptions, and feelings of AYA on their identity and the processes underlying the construction of identity, with a focus on navigating disability, social relations and roles, community assimilation and self-perception were explored. A qualitative interpretive phenomenological approach was adopted. Participants were a purposive sample of 5 AYA, aged 15 to 19 years. Participants had moderate to profound deafness and were enrolled in schools for the deaf where they partook in semi-structured phenomenological conversations, detailing their lived experiences with identity construction. The superordinate themes of creating a self-concept, belonging, stress and being deaf emerged from participants' narratives. Identity construction occurs concurrently at several levels. At the personal level, AYA create self-conceived ideals of who they are. At relational level, identity is fostered through person-to-person and person-to-group interactions. At societal level, AYA navigate inherent challenges with hearing impairment and their positionality as deaf individuals. Understanding the nuances of identity construction gives insights for further research and highlights the self-ascribed identity domains and related psychosocial variables that appeal to person and family-centered care, uncovering opportunities and barriers to successful delivery. Findings have implications for the transitional care of deaf AYA that is responsive to their needs.

Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer.

Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15-39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this. Methods: The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits. Results: During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals. Conclusion: In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy.

Role of primary care in enhancing continuity of care for adolescents and young adults with chronic kidney disease undergoing transition to adult health services.

The transition from pediatric to adult health care is a vulnerable period for adolescents and young adults (AYA) with chronic conditions as it involves a multitude of changes and challenges while they enter adulthood. The transition to adult care can be particularly challenging for AYA living with chronic kidney disease (CKD) due to the complex care needed for treatment. Continuity of care is crucial for a successful transition to adult health care. The aim of this educational review is to discuss the potential role of primary care providers in the transition from pediatric to adult health services for AYA with CKD and kidney failure treated with dialysis and/or transplant. We address the significance of the medical home model and how it can provide continuity of care for AYA with CKD. Primary care providers can enhance care for AYA with chronic conditions by providing continuity of care, reducing exacerbation of chronic health conditions, providing holistic care, and fostering collaboration with specialists. Despite their vital role, primary care providers face barriers in maintaining this continuity, necessitating further attention and support in this area. By addressing these barriers and encouraging primary care providers to work alongside pediatric and adult nephrologists during the transition to adult health care, there are significant opportunities to improve the care and health outcomes of AYA with CKD.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians.

Quality measures have been devised for end-of-life care of older adults with cancer, but are lacking for adolescents and young adults (AYAs). We previously conducted interviews with AYAs, family caregivers, and clinicians to identify priority domains for high quality care of AYAs with advanced cancer. The goal of this study was to use a modified Delphi process to form consensus around the highest priority quality indicators. A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group web conferences. Participants were asked to rate the importance of each of 41 potential quality indicators, rank the 10 most important, and engage in discussion to reconcile differences. Of 41 initial indicators, 34 were rated as highly important (rating seven, eight, or nine on a nine-point scale) by >70% of participants. The panel was unable to reach consensus around the 10 most important indicators. Instead, participants recommended retaining a larger set of indicators to reflect potential for different priorities across the population, resulting in a final set of 32 indicators. Recommended indicators broadly encompassed attention to physical symptoms; quality of life; psychosocial, and spiritual care; communication and decision-making; relationships with clinicians; care and treatment; and independence. A patient- and family-centered process for quality indicator development led to strong endorsement of multiple potential indicators by Delphi participants. Further validation and refinement will be performed using a survey of bereaved family members.

Diabetes-Focused Health Care Utilization Among Adolescents and Young Adults With Type 1 Diabetes

ObjectiveTo describe the current rates of health services use with various types of providers among adolescents and young adults (AYA) with type 1 diabetes (T1D) and evaluate which patient factors are associated with rates of service use from different provider types. MethodsUsing 2012–16 claims data from a national commercial insurer, we identified 18,927 person-years of AYA with T1D aged 13 to 26 years and evaluated the frequency at which: 1) AYA skipped diabetes care for a year despite being insured; 2) received care from pediatric or non-pediatric generalists or endocrinologists if care was sought; and 3) received annual hemoglobin A1c (HbA1c) testing as recommended for AYA. We used descriptive statistics and multivariable regression to examine patient, insurance, and physician characteristics associated with utilization and quality outcomes. ResultsBetween ages 13 and 26, the percentage of AYA with: any diabetes-focused visits declined from 95.3% to 90.3%; the mean annual number of diabetes-focused visits, if any, decreased from 3.5 to 3.0; receipt of ≥2 HbA1c tests annually decreased from 82.3% to 60.6%. Endocrinologists were the majority providers of diabetes care across ages, yet the relative proportion of AYA whose diabetes care was endocrinologist-dominated decreased from 67.3% to 52.7% while diabetes care dominated by primary care providers increased from 19.9% to 38.2%. The strongest predictors of diabetes care utilization were younger age and use of diabetes technology (pumps and continuous glucose monitors). ConclusionsSeveral provider types are involved in the care of AYA with T1D, though predominate provider type and care quality changes substantially across age in a commercially-insured population.

Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs.

Despite growing (inter)national awareness and appreciation, age-specific care is still not always self-evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long-term AYA cancer survivors have missed age-specific care, and if so, which survivors missed it and regarding which topics. The Netherlands Cancer Registry (NCR) identified all long-term AYA cancer survivors (aged 18-39 years at initial cancer diagnosis, 5-20 years past diagnosis) in the Netherlands, who were invited to participate in a population-based, observational, cross-sectional questionnaire study (SURVAYA study), including questions on care needs. In total, 3.989 AYAs participated (35.3% response rate). One-third of them had a need for age-specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age-specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least. A substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.

Efficacy of a digital mental health intervention embedded in routine care compared with treatment as usual in adolescents and young adults with moderate depressive symptoms: protocol for randomised controlled trial

IntroductionThere are unmet mental health needs of depressed adolescents and young adults (AYAs) across the USA. Behavioural technology adequately integrated into clinical care delivery has potential to improve care access...

Old Dog, New Tricks: A Review of Identifying and Addressing Youth Cannabis Vaping in the Pediatric Clinical Setting

Cannabis vaping has emerged as a predominant mode of cannabis use among United States (US) adolescents and young adults (AYA) primarily due to the popularity of modifiable designs of vaping devices coupled with changes in cannabis policies and increased availability of cannabinoid products. New methods for cannabis vaping by e-liquid/oil vaping, dry plant vaping, and cannabis concentrate vaping (ie, dabbing) have had high uptake among American youth with unclear long-term health implications. Issues with contamination, mislabeling, and expansion of the vaped cannabis market to include not only delta-9-tetrahydrocannabinol (delta-9-THC) and cannabidiol (CBD) but also delta-9-THC analogs (eg, delta-8 and delta-10) sold as hemp-derived "legal highs" further complicated this healthcare space. Recent research suggests that cannabis/THC vaping carries distinct and overlapping risks when compared to cannabis smoking and may be associated with greater risk for acute lung injuries, seizures, and acute psychiatric symptoms. Primary care clinicians providing care for AYA are in an ideal position to identify cannabis misuse and intervene early to address cannabis vaping. To improve public health outcomes, a need exists for pediatric clinicians to be educated about different ways/methods that youth are vaping cannabinoid products and associated risks related to cannabinoid vaping. Further, pediatric clinicians need to be trained how to effectively screen for and discuss cannabis vaping with their youth patients. In the current article, we present a clinically focused review of cannabis vaping among young people with 3 main aims to: (1) identify and describe the cannabis vaping products commonly used by American youth; (2) review the health correlates of youth cannabis vaping; and (3) discuss clinical considerations related to identifying and treating youth who vape cannabis.

Specialized Palliative Care and Intensity of End-of-Life Care Among Adolescents and Young Adults with Cancer: A Medical Chart Review.

Purpose: Adolescents and young adults (AYAs) with cancer often undergo aggressive end-of-life (EOL) care. We evaluated whether specialized palliative care (SPC) involvement is associated with the receipt of intensive EOL care among AYAs. Methods: This retrospective study included patients with cancer treated between the ages of 15 and 39 years at a university hospital, who died during 2009-2022. The primary outcome was high-intensity EOL (HI-EOL) care, which was defined as ≥1 session of intravenous chemotherapy <14 days from death or during the final 30 days of life, ≥1 hospitalization at an intensive care unit, >1 emergency room admission, or >1 hospitalization at an acute care unit during the final 30 days of life. We determined predictors of outcomes using multiple logistic regression models. Results: We analyzed 132 AYAs (75 with SPC involvement), of whom 42.4% (95% confidence interval [CI]: 33.9%-51.3%) underwent HI-EOL care. The prevalence of HI-EOL care was significantly lower in those who had SPC involvement than in those without SPC involvement (adjusted odds 0.30; 95% CI: 0.13-0.69; p = 0.005). Using no SPC involvement group as a reference, the adjusted odds for SPC involvement ≤60 days and >60 days were 0.71 (95% CI: 0.18-2.78; p = 0.63) and 0.22 (95% CI: 0.09-0.57; p = 0.002), respectively. Conclusion: In AYAs with cancer, SPC involvement and duration were associated with a lower incidence of HI-EOL care. Thus, integrating SPC into oncology may improve EOL care for AYAs.

For the LOvE of Reproductive Health Communication: Assessment of the LGBT Oncofertility Education (LOvE) Module.

Purpose: The lesbian, gay, bisexual, transgender, and queer (LGBTQ) Oncofertility Education (LOvE) module aims to improve knowledge on providing inclusive and affirming care for LGBTQ adolescents and young adults (AYAs) with cancer. The objective of this study is to evaluate the role of the module in improving reproductive health communication for the care of LGBTQ AYAs with cancer. Methods: A 10-item multiple-choice pre-test and post-test assessed learner knowledge, with total knowledge scores ranging from 0 (no correct responses) to 10 (all correct responses). A post-module survey and open-ended questions assessed relevance of the module, quality, and appropriateness to professional practice. Paired t-tests analyzed changes in knowledge before and after the module. Content analysis was applied to qualitative responses. Results: Thirty-seven learners completed both the pre-test and post-test. Around 8.1% correctly answered all pre-test questions; 59.5% correctly answered all posttest questions. The average pre-test score was 8.3, versus posttest score of 9.5 (p < 0.0001). Eighty-nine percent of learners strongly agreed that LOvE Enriching Communication Skills for Health Professionals in Oncofertility was relevant to their work; 95% strongly agreed that it was easy to understand and navigate. Open-ended responses highlighted how the module helped learners strengthen the provider-patient relationship in the context of oncofertility, create a safe space for patients, and understand the relevance of educational materials about fertility to LGBTQ patients. Conclusions: We found significant improvement in knowledge of reproductive health care for LGBTQ AYAs with cancer after completing the module. Improving provider knowledge may improve confidence in providing inclusive and affirming care for LGBTQ AYAs with cancer, resulting in improved whole-person care.

Clinical Perspectives Regarding Sexual and Reproductive Health for Adolescents and Young Adults with Sickle Cell Disease

Background: Sickle cell disease (SCD) is a genetic hematologic condition affecting more than 300,000 individuals worldwide. In the past decade, advances in therapy and management have enabled adolescents and young adults (AYA) with SCD to live longer. However, this population has increased morbidity and mortality as they reach adulthood and their reproductive years. Clinicians who care for individuals with SCD face challenges in advising patients about their sexual and reproductive health (SRH), and there are no standard guidelines for clinicians on SRH interventions or counseling. This study aims to characterize clinicians’ current attitudes, practices, and barriers/facilitators to providing SRH care for AYA with SCD. Methods: We recruited clinicians that care for AYA with SCD from a national sample of members of the American Society of Pediatric Hematology and Oncology (ASPHO) in a cross-sectional qualitative study. Participants completed in-depth semi-structured qualitative interviews. Interviews collected background information about the clinician and the nature of services offered for AYA with SCD at their health care center. Interviews also probed themes such as clinician role in providing SRH care, perceived barriers to providing SRH care, facilitators to providing SRH care, and clinician recommendations for ideal SRH care for AYA with SCD. We transcribed and systematically coded interviews to identify themes related to SRH care for AYA with SCD. Results: Thus far, we have interviewed 12 clinicians (75% female; 17% fellows). All participants stated that SRH discussions are important for AYA with SCD and agreed that SRH counseling should be a part of the standard of care. Key SRH topics for SCD patients included managing vaso-occlusive events including pain crises during menstruation, planning for pregnancy, contraceptive choice, and genetic counseling. However, many participants identified barriers to providing ideal SRH care, such as, training limitations, time constraints, staff availability and patient or family receptiveness to SRH discussions. Some clinicians identified other care providers that may be better suited to providing SRH care to AYA with SCD due to their expertise or familiarity with the patient. For example, pediatric hematologists feel comfortable with SRH counseling, but defer to primary care physicians for prescribing hormonal contraception. Conclusion: Clinicians that care for AYA with SCD agree that comprehensive SRH care is essential for their patients and would benefit from clearly outlined guidelines for counseling and provision of SRH care. Healthcare providers who treat individuals with SCD should be aware of the unique SRH needs of this population. Further study is needed to identify patient attitudes regarding SRH care needs.

Systematic Review of mHealth Interventions for Adolescent and Young Adult HIV Prevention and the Adolescent HIV Continuum of Care in Low to Middle Income Countries

Adolescents and young adults (AYA) in low to middle income countries (LMIC) have poorer outcomes along each step in the HIV continuum of prevention and care compared to younger children or older adults. The use of mHealth technology provides a potentially promising implementation strategy for interventions to remedy these disparities. We therefore conducted a systematic review of the English literature and conference proceedings from January 1, 2000 to April 1, 2021 evaluating mHealth interventions targeting AYA along each step of the HIV continuum of care in LMIC. We identified 27 mHealth interventions across the HIV continuum, with no interventions addressing transition from pediatric to adult care. The majority of studies were single arm, uncontrolled or underpowered, with few randomized trials resulting in mixed and inconclusive outcomes. mHealth interventions have potential to remedy disparities along the HIV continuum of care for AYA in LMIC but larger, powered randomized trials are needed.

Adaptation and construct validity evaluation of a tablet-based, short neuropsychological test battery for use with adolescents and young adults living with HIV in Thailand.

Deficits in neurocognitive functioning are common among adolescents and young adults (AYA) with perinatally acquired HIV (PHIV). Limitations of traditional neuropsychological tests hinder assessment of neurocognition in low- and middle-income countries where most AYA with PHIV reside. Computerized testing could make assessment of neurocognition more accessible in these countries. This study examined a culturally modified NeuroScreen, a tablet-based neurocognitive testing app, for use in Thailand. Construct validity was examined among Thai AYA (13-23 years) with and without PHIV. NeuroScreen underwent adaptation including language, content, and usability review by Thai psychologists, AYA, and clinical staff. One hundred Thai AYA (50 PHIV; 50 HIV-uninfected, matched controls) were administered the adapted NeuroScreen and a battery of traditional paper-and-pencil neuropsychological tests. Correlations, mean differences, and proportions with impaired performance were examined across NeuroScreen and the traditional tests. The Thai version of NeuroScreen was deemed understandable and culturally appropriate. A large correlation (.82) between overall performance on the NeuroScreen and traditional batteries was observed. Small-to-large correlations were found between conceptually similar NeuroScreen and traditional tests of processing speed, working memory, motor speed, and executive functioning. Mean test performance differences between AYA with PHIV and controls were similar between test batteries. Both sets of tests identified similar rates of impaired participants. Results provide support for the acceptability and construct validity of the Thai NeuroScreen tests to assess neurocognition in Thai AYA with PHIV. An easy-to-use tool to assess neurocognition can help Thai providers provide better care for AYA with PHIV. (PsycInfo Database Record (c) 2022 APA, all rights reserved).