Adolescent Preferences Research Articles

157 - CAR-T Prescriber Preferences in Adolescents and Young Adults with B-ALL

157 - CAR-T Prescriber Preferences in Adolescents and Young Adults with B-ALL

Perceived barriers to vegetable intake among urban adolescents from socioeconomically disadvantaged backgrounds: A qualitative study from the perspective of youth workers and teachers.

Eating habits established during adolescence have been shown to track into adulthood. Adolescents from lower socioeconomic status groups tend to have lower intakes of vegetables as compared with their more affluent peers. However, there is limited evidence about the determinants of vegetable intake in this population group. Therefore, this study aimed to explore the barriers to vegetable intake in adolescents living in socioeconomically disadvantaged areas through the perspective of school teachers and youth workers. A total of 20 semi-structured interviews were conducted with post-primary school teachers and youth workers from disadvantaged areas in Dublin, Ireland. Thematic analysis was applied to analyze the data. Eleven themes were identified and fitted within the Socioecological Model of Health: adolescent's food preferences, lack of early exposure and familiarity with vegetables, lack of interest, knowledge and skills at the individual and family level, parenting practices around nutrition, living difficulties, peers’ influence and social norms around nutrition, dual role of social media, lack of resources and support to promote healthy eating, competition between unhealthy food vs. vegetables, lack of adequate approaches & initiatives at the community and at the public policy levels, and lack of State support to promote healthy eating. Although several actions could be taken at the personal and interpersonal levels, more efforts are needed at the organizational, community and public policy levels to improve dietary choices and vegetable intake among adolescents in socioeconomically deprived areas. These findings will inform the development of tailored intervention strategies and policies for these vulnerable youths.

Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research.

Purpose: With increased use of genomic testing in cancer research and clinical care, it is important to understand the perspectives and decision-making preferences of adolescents and young adults (AYAs) with cancer and their treating oncologists. Methods: We conducted an interview substudy of the BASIC3 Study, which enrolled newly diagnosed cancer patients <18 years of age with assent. Of 32 young adults (YAs) with cancer who reached the age of majority (AOM; 18 years) while on study, 12 were successfully approached and all consented to study continuation at AOM. Of those, seven completed an interview. Patients' oncologists, who enrolled and participated in return of clinical genomic results, were also interviewed (n = 12). Interviews were transcribed, deidentified, and analyzed using thematic analysis. Results: YAs cited the possibility of helping others and advancing science as major reasons for their assent to initial study enrollment and their willingness to consent at AOM. YAs thought obtaining informed consent from research participants for study continuation at AOM was a good idea in case they changed their minds or wanted to make their own decisions, and to keep them aware of study activities. There was diversity in what YAs understood and learned from genomic testing: some recalled specific findings, while some remembered minimal information about their results. Oncologists varied in their assessment of adolescents' engagement with the study and understanding of their results. Conclusion: Given the different ways AYAs engage with genomic information, careful assessment of AYAs' diverse communication and decision-making preferences is needed to tailor interactions accordingly.

Development and Design Needs of Mobile Health (mHealth) Apps for Adolescents.

Context: Adolescent obesity remains a significant public health issue within the United States. Application (app) technology growth and popularity offer new opportunities for research and health improvement. The development of a consolidated mobile health application (mHealth app) for adolescents on these platforms has the potential to improve health outcomes. Most mHealth apps for adolescents, particularly those in the commercial arena, are scaled-down from an adult-targeted app and lack relevant stakeholder feedback. Objectives: To identify adolescent expectations when using an mHealth application and understand visual user-interface needs, and to develop an intuitive and engaging user-interface, we aim to describe the design and functional user requirements for mHealth app. We aim to inform future researchers and app developers about adolescent needs and preferences, as identified by adolescent stakeholders. Study Design: In this mixed method study, we used surveys and interviews/task analysis of adolescents to understand their user requirements and design preferences during the development of a healthy lifestyle app (CommitFit). The survey included the user design industry-standard System Usability Scale (SUS) paired with supplemental questionnaire on the specific features and functionalities of the CommitFit mHealth app. Population Studied: Adolescents ranged from the ages of 13 to 15 years of age, with an average age of 13.6 years old. Results: Ten adolescents were interviewed and surveyed (adapted SUS and supplemental questionnaire) to explore adolescent preferences with visual app design and functionality. Our qualitative results showed that adolescents preferred colorful, user-friendly interfaces paired with gamification to use an mHealth app. Our analysis of SUS survey data validated our user-centered and human-system design and adolescents confirmed their design, feature, and functionality preferences. Adolescent users found CommitFit to be easy to use and provided guidance for visual design needs and preferences. Outcomes: Adolescent stakeholder feedback is crucial in the successful development of an adolescent-targeted mHealth app. Adolescents prefer vibrant colors, modern, easy-to-use interface, gamification and rewards, customizable and personalized, simple, and mature graphics. Adolescents were especially motivated by gamification techniques in maintaining their interest in the application and their health behavior goals.

Psammomatoid Ossifying Fibroma Is Defined by SATB2 Rearrangement

Psammomatoid ossifying fibroma (PsOF), also known as juvenile PsOF, is a benign fibro-osseous neoplasm predominantly affecting the extragnathic bones, particularly the frontal and ethmoid bones, with a preference for adolescents and young adults. The clinical and morphologic features of PsOF may overlap with those of other fibro-osseous lesions, and additional molecular markers would help increase diagnostic accuracy. Because identical chromosomal breakpoints at bands Xq26 and 2q33 have been described in 3 cases of PsOF located in the orbita, we aimed to identify the exact genes involved in these chromosomal breakpoints and determine their frequency in PsOF using transcriptome sequencing and fluorescence in situ hybridization (FISH). We performed whole RNA transcriptome sequencing on frozen tissue in 2 PsOF index cases and identified a fusion transcript involving SATB2, located on chromosome 2q33.1, and AL513487.1, located on chromosome Xq26, in one of the cases. The fusion was validated using reverse transcription (RT)-PCR and SATB2 FISH. The fusion lead to a truncated protein product losing most of the functional domains. Subsequently, we analyzed an additional 24 juvenile PsOFs, 8 juvenile trabecular ossifying fibromas (JTOFs), and 11 cemento-ossifying fibromas (COFs) for SATB2 using FISH and found evidence of SATB2 gene rearrangements in 58% (7 of 12) of the evaluable PsOF cases but not in any of the evaluable JTOF (n = 7) and COF (n = 7) cases. A combination of SATB2 immunofluorescence and a 2-color SATB2 FISH in our index case revealed that most tumor cells harboring the rearrangement lacked SATB2 expression. Using immunohistochemistry, 65% of PsOF, 100% of JTOF, and 100% of COF cases showed moderate or strong staining for SATB2. In these cases, we observed a mosaic pattern of expression with >25% of the spindle cells in between the bone matrix, with osteoblasts and osteocytes being positive for SATB2. Interestingly, 35% (8 of 23) of PsOFs, in contrast to JTOFs and COFs, showed SATB2 expression in <5% of cells. To our knowledge, this is the first report that shows the involvement of SATB2 in the development of a neoplastic lesion. In this study, we have showed that SATB2 rearrangement is a recurrent molecular alteration that appears to be highly specific for PsOF. Our findings support that PsOF is not only morphologically and clinically but also genetically distinct from JTOF and COF.

ИЗУЧЕНИЕ ОСОБЕННОСТЕЙ ПРОФЕССИОНАЛЬНЫХ ПРЕДПОЧТЕНИЙ ПОДРОСТКОВ С ИНТЕЛЛЕКТУАЛЬНЫМИ НАРУШЕНИЯМИ ПРИ ОВЛАДЕНИИ ПРОФЕССИЕЙ ОПЕРАТОР ШВЕЙНОГО ОБОРУДОВАНИЯ

Introduction. The professional preferences of adolescents with intellectual disabilities re-quire special attention in the prospects of work on their socialization. Teachers develop and shape the skills and abilities that are available to the adolescent to assert themselves in their chosen profession. At the same time, when choosing each profession to be mastered by a student with intellectual disabilities, it is necessary to understand the peculiarities of their professional preferences. The relevance of issues in this area determined the content of our research. The purpose of the study is to identify the features of professional preferences of adolescents with intellectual disabilities when mastering the profession of sewing equipment operator and to develop recommendations designed to help in mastering the skills required in the profession. Materials and methods. The study involved 28 students enrolled in the vocational training program 16185 sewing equipment operator (OSHO) for people with intellectual disabilities aged 16 to 20 years, groups OSHO-21 and OSHO-22. All students enrolled in the college after graduating from a special correctional school or correctional classes of secondary schools. The following methods and techniques were used in the study: the method of theoretical analysis of scientific, special and psychological-pedagogical literature, the study and generalization of pedagogical experience, the analysis of research results; empirical methods: the method of expert assessment, pedagogical experiment, the method of qualitative and quantitative analysis. The results. The study revealed the peculiarities of professional preferences, which made it possible not only to determine and understand the correspondence of adolescents’ abilities and interests to the profession but also to identify their problems: in mastering hand sewing tools and in the process of laying out patterns. The groups of subjects were described. The prerequisites for mastering the profession of sewing equipment operator among the adolescents in the experimental group are identified. Conclusion. Based on the identified difficulties in mastering professional skills and abilities in adolescents with intellectual disabilities, the components of the professional sphere necessary for their further development in the learning process were determined. On this basis, differentiated recommendations were developed for the students to master professional skills and abilities in the following areas: theoretical, communicative and vocational.

ЭКСПЕРИМЕНТАЛЬНОЕ ИССЛЕДОВАНИЕ ВЕГЕТАТИВНОЙ НЕРВНОЙ СИСТЕМЫ ПОДРОСТКОВ С РАЗНОЙ СТЕПЕНЬЮ ВОВЛЕЧЕННОСТИ В ЦИФРОВУЮ СРЕДУ

The modern literature records a high relevance of diagnosing the deterioration of the psychological health of the younger generation in conditions of accelerated digitalization, determined by psycho-emotional stress and is associated with the functions of the autonomic nervous system (ANS), the role of which has not been studied either in the formation of over-involvement with the Internet, or in determining the success of the development of educational programs by modern youth. One of the most important markers for assessing the activity of the ANS is the heart rate and its variability. Thus, the purpose of our work can be defined as the study of the relationship of heart rate parameters (R-R intervals) with the characteristics of digital preferences of adolescents. It is assumed that the choice of activities on the Internet, as well as the time spent on leisure, have certain connections with the characteristics of R-R intervals and its variability, with the predominance of activity of the parasympathetic or sympathetic links of the ANS. The study was carried out during the COVID-19 pandemic in 2021, which aggravated the psycho-emotional state of students. The author’s questionnaire “Digital preferences of modern teenagers” was used in the work, which had previously been tested on schoolchildren in Moscow. In a separate experiment on a part of the total sample of students (n = 24), a R-R intervals was recorded using a certified ECG device of the APK “Veda-pulse”. Registration was carried out individually with each subject, on average, ECG registration lasted 5 minutes. The characteristics of the behavior of the surveyed group of St. Petersburg schoolchildren have a high degree of similarity with all other surveyed groups of peers in Moscow and Lipetsk. The frequency-spectral parameters of the R-R- interval’s variability in a separate experiment are characterized by high variety, the maximum group variety is shown for the low frequency band (LF) of the spectrum of R-R intervals. A highly reliable positive relationship of priority interests on the Internet with the power of the spectrum of all frequency bands and with the gender of the subjects was found. Students' academic performance correlates positively and with highly reliably with the power of the super low frequency band (VLF) and negatively with the power of the low frequency band (LF). The results are discussed in the context of the interrelationships of students' academic performance, gender and interests on the Internet with the activity of their sympathetic and parasympathetic components of the ANS and the central link of heart rate regulation.

Communication Preferences of Obese Female Adolescents with Clinicians

Communication Preferences of Obese Female Adolescents with Clinicians

Psychological Assessment Reports for Linguistically Minoritized Clients: Considerations for Ethical and Professional Practice.

According to the national census, approximately a fifth of the adult population in the United States uses a language other than English in their home. Less precise information is available regarding the language preferences of children and adolescents, D/deaf individuals, and other individuals in the United States who are not represented in national surveys. The field of psychology has increasingly acknowledged and addressed the lived experiences of culturally and linguistically minoritized individuals in the United States through relevant research and clinical practice guidelines. As a result, more accessible and equitable practices for psychological assessments have been developed when working with linguistically minoritized clients. Unfortunately, there is a paucity of information in the extant literature regarding drafting psychological assessment reports for linguistically minoritized clients. This article explores the ethical and professional responsibilities of psychologists when engaged in this work, and provides proposed practices for drafting and delivering accessible assessment reports for linguistically minoritized clients. Recommendations are provided regarding how psychologists can share the results of an assessment with a referral source using written English and also support a client in accessing the information in their primary language.

Television viewing and personality needs of South African adolescents

ACCORDING to the needs-and gratifications approach, a person actively chooses programmes, articles and films and uses the content of this mass media material to gratify certain needs in him or herself. In this paper, results of a longitudinal study of the relationship between certain personality needs on the one hand and the television viewing behaviour and television programme preferences of adolescents on the other hand, are discussed. Based on a large scale South African study of the influence of television on school-going children, the data of approximately 2 000 adolescents, retested from their 12th to 18th year, are used. Multivariate statistical techniques, e.g. profile analysis, were used to analyze the data obtained by various psychometric instruments and questionnaires.

Adolescent and Young Adult Communication Preferences.

The purpose of this study was to examine adolescents and young adults preferred methods of communication by health care professionals and to identify whether this aligns/differs from overall preferred methods of social media use. Sixty-seven participants completed an electronic survey about their communication preferences. Forty-eight participants were patients and 19 were parents. Logistic regression and chi-square analysis were performed to predict social media use and communication preferences from predictors including age, gender, race, and treatment status. More research is needed to generalize these results, and future research could further evaluate the effectiveness of implementing health care interventions using preferred platforms.

CAR-T Prescriber Preferences in Adolescents and Young Adults with B-ALL

Introduction: Since October 2021, there have been two Food and Drug Administration (FDA) approved CD19 CAR-T products (tisagenlecleucel (tisa-cel) and brexucabtagene autoleucel (brexu-cel)) for adolescents and young adults (AYA) aged 18 to 25 with B-cell acute lymphoblastic leukemia (B-ALL). Only a small number of AYAs were treated on both registration studies. Comparison across these single arm studies is not possible with differences in demographics and clinical management. We aim to understand prescriber preferences and rationale when deciding between products in the AYA population with B-ALL and inform future clinical investigations. Methods: We conducted a 21-question electronic survey of CAR-T prescribers through the Pediatric Transplantation and Cellular Therapy Consortium (PTCTC). (Note: PTCTC did not formally approve this work but assisted with survey conduct.) The survey consisted of questions about practice demographics and logistics, prescriber opinion and preferences regarding the two FDA approved CAR-T products based on literature data. Results: There was a total of 13 completed surveys from 10 centers at the time of analysis. Most respondents primarily treat patients with hematological malignancies who are 18 years of age or younger (85%). The median FDA approved CAR-T volume among the centers were 1-5 and ranged from 0 to >20. Close to half of respondents (46%) reported their institution requiring committee discussion and approval for all CAR-T cases. Ninety-two percent prescribed tisa-cel for any indication; 23% prescribed brexu-cel for any indication. Within the past year, over half of the respondents treated at least 16 patients with B-ALL (62%) and prescribed at least one CAR-T product. Approximately 31% of the respondents discuss both CAR-T products as treatment options for AYA with B-ALL, and respondents from two centers reported that their center is only certified to prescribe tisa-cel. Since October 2021, 69% of respondents had prescribed tisa-cel for B-ALL while only 15% had prescribed brexu-cel for B-ALL. Regarding current practice, close to half (46%) reported general consensus among their institutional practice is to prescribe tisa-cel for AYA with B-ALL. No one planned to routinely prescribe brexu-cel for AYA with B-ALL, although 31% report planning to consider either CAR-T product on a case-by-case basis. The remaining 23% has no general plan: 15% not having discussed both CAR-T products as an option and 8% is unsure. When asked the clinical data for deciding tisa-cel vs brexu-cel for AYA with B-ALL, some respondents reported more data and experience with tisa-cel, including longer follow-up and better persistence with 4-1BB costimulatory domain. For patients who need CAR-T treatment more urgently, some would consider brexu-cel for the shorter vein to vein time. The respondents were then presented with hypothetical clinical scenarios using published data without revealing the product name and asked to select CAR-T product A (tisa-cel), B (brexu-cel) or if both would be reasonable. When presented with the CR/CRi rate and the 4-1BB vs CD28 co-stimulatory CAR constructs in a blinded fashion, the percent of respondents willing to consider both products as reasonable options were comparable as that reported in practice (close to 31%, with the remaining favoring tisa-cel). However, when presented with reported OS data from both products in blinded fashion, close to 69% of the respondents selected that both products are reasonable options. When presented with product manufacturing turnaround time, 42% of respondents preferred brexu-cel while the remaining 58% respondents felt both products were reasonable. Conclusions: AYA with B-ALL requiring CAR-T therapy are eligible for both tisa-cel and brexu-cel and there exists clinical equipoise as to which product is best for different clinical scenarios given the lack of head-to-head comparison. Most CAR-T prescribers at the time of this survey favored tisa-cel given its availability and familiarity as well as its 4-1BB costimulatory domain. However, some prescribers may favor brexu-cel if there was rapid clinical decline requiring expedited turnaround time. Some changes in product preference when clinical data was presented in a blinded manner were seen, suggesting providers' willingness and feasibility to design a pragmatic study comparing tisa-cel and brexu-cel in real world practice in the AYA population.

The Effects of an Educational Intervention Based on Poetry, Game, and Problem-Solving Skills on Promoting Nutritional Knowledge and Behavior in Iranian Primary School Students

Background: Current educational techniques may have a few effects on dietary habits and food preferences in adolescents, so by designing an educational attractive program, nutritional knowledge can be significantly enhanced. This study aims to investigate the effect of a structured educational intervention based on poetry, game, and problem-solving skills on promoting nutritional knowledge, and behavior in primary school students.&#x0D; Methods: This experimental study was conducted on 120 primary school students aged 10-12 years in Sabzevar, Iran, in 2019. The participants were selected through multi-stage random sampling and divided into experimental (EG, n=60) and control (CG, n=60) groups. The data collection tool was a researcher-made questionnaire consisting of three sections (demographic characteristics, nutritional knowledge section, and nutritional behavior section). The validity and reliability of the questionnaire were checked and confirmed. The educational program, including educational poems, a "road to health" game, and problem-solving skills, was designed. The EG received a self-directed educational program. Both groups completed the questionnaires before and one month after the intervention.&#x0D; Results: After the intervention, the mean scores of nutritional knowledge and nutritional behaviors significantly improved in the EG compared to the CG (P &lt; 0.05). Moreover, after the intervention, the mean score of nutritional behavior in the EG significantly improved compared to before the intervention (P &lt; 0.05). The highest percentage in mean scores in the food pyramid groups was related to the consumption of vegetables (27%), consumption of milk and dairy products (26%), non-consumption of low-value snacks (13%), and non-consumption of sugar and candy (11%), respectively.&#x0D; Conclusion: The educational program based on poetry, game, and problem-solving skills can be practical, attractive, and cost-effective for promoting nutritional knowledge and behavior in adolescents.

Conflict and reciprocity: A study with Palestinian youths

This paper studies how reciprocity in the forms of conditional cooperation and vindictive behavior is affected by differential exposure to conflict. We use experimental games to measure preferences of adolescents living in the West Bank, and their obligation to cross military checkpoints to go to school as a proxy for differential exposure to the conflict. We find that adolescents who have an obligation to cross military checkpoints to go to school engage in more reciprocal behavior: they more frequently cooperate in response to cooperative behavior and retaliate against hostile behavior. Part of the effect is explained by changes in the beliefs about their peers’ behavior. A re-analysis of micro-datasets from other conflict contexts provides evidence of the generalizability of our results.

Environmental preferences of adolescents within a low ecological footprint country.

As Cuba achieves one of the lowest per capita ecological footprints in the world, the country’s overshoot day was on 1 December 2019, while some European countries already reach this limit in February (e.g., Luxembourg), monitoring the environmental preferences of the Cuban younger generation may offer valuable behavioral or pedagogical insights into such a society. As accepted standardized measures exist in the scales of 2-Major Environmental Values (2-MEV) and the General Ecological Behavior (GEB), both measures are following the necessary psychometric requirement, as they have the unique advantage of repeated independent confirmation (and thus provide an external validity). These captured 40 items of reported behavior originating in six subscales that total in a single main cover score. The first one (2-MEV) monitors individual biocentric and anthropocentric preferences with a 20 item-set by relying upon these two higher-order factors of “Preservation” (PRE) and “Utilization” (UTL). Although many language versions already exist (33 in the case of the 2-MEV) for verifying validities and reliabilities of both scales, a country such as Cuba may affirm that this is due to expected cultural differences as well as their exceptionally low global footprint. Additionally, neither the individual connectedness with nature nor the diurnal preferences within the linear structural model showed a substantial relationship to PRE or UTL. Nevertheless, all the regression scores follow the expected positive or negative directions, albeit not all the fit scores turned out as satisfactorily. Apparently, the applied measures secure a good basis for measuring the attitudinal and behavioral framework, but will need further fine tuning to completely monitor the environmental preferences of Cuban adolescents.

The Intergenerational Transmission of Party Preferences in Multiparty Contexts: Examining Parental Socialization Processes in the Netherlands

Research shows that parents have a strong influence on the party preferences of their children. Yet little is known about how such preferences are transmitted in multiparty systems with weak party identification and high electoral volatility. We propose a model of intergenerational transmission that includes both direct effects of parents' party preferences on those of their children, as well as indirect effects through left–right and issue positions. We test this model with original survey data of Dutch adolescents (14–20 years old) and their parents (N = 751 adolescent‐parent pairs). We find two paths through which parents exert influence on the party preferences of their adolescent children. On the first path, parental party preferences function as a direct predictor of adolescent party preferences. On the second path, adolescent left–right and issue positions function as a mediator between parental left–right and issue positions and adolescent party preferences, with the effect of left–right positions being stronger than that of issue positions. The frequency with which adolescents discuss political topics with their parents moderates these effects.

Adolescent and young adult preferences for financial incentives to support adherence to antiretroviral therapy in Kenya: a mixed methods study.

IntroductionTo develop a patient‐centred financial incentive delivery strategy to improve antiretroviral treatment adherence in adolescents and young adults (AYA) living with HIV in Kisumu, Kenya, we conducted a mixed methods study exploring preferences.MethodsA discrete choice experiment (DCE) and focus group discussion (FGD) were conducted simultaneously to identify preferences for five incentive delivery strategy features: value, eligibility, recipient, format and disbursement frequency. We used consecutive sampling to recruit AYA (14–24 years) living with HIV attending three health facilities in Kisumu, Kenya. We calculated mean preferences, willingness to trade, latent class membership and predictors of latent class membership. The FGD explored preferred incentive features, and, after deductive and inductive coding, qualitative findings were triangulated with DCE results.ResultsTwo hundred and seven AYA living with HIV (46% 14–17 years, 54% 18–24 years; 33% male sex, 89% viral load <50 copies/ml) were recruited to the study (28 October–16 November 2020). Two distinct preference phenotypes emerged from the DCE analysis (N = 199), 44.8% of the population fell into an “immediate reward” group, who wanted higher value cash or mobile money distributed at each clinic visit, and 55.2% fell into a “moderate spender” group, who were willing to accept lower value incentives in the form of cash or shopping vouchers, and accrued payments. The immediate reward group were willing to trade up to 200 Kenyan Shillings (KSH)—approximately 2 US dollars (USD)—of their 500 KSH (∼5 USD) incentive to get monthly as opposed to accrued yearly payments. The strongest predictor of latent class membership was age (RR 1.45; 95% CI: 1.08–1.95; p = 0.006). Qualitative data highlighted the unique needs of those attending boarding school and confirmed an overwhelming preference for cash incentives which appeared to provide the greatest versatility for use.ConclusionsProviding small financial incentives as cash was well‐aligned with AYA preferences in this setting. AYA should additionally be offered a choice of other incentive delivery features (such as mobile money, recipient and disbursement frequency) to optimally align with the specific needs of their age group and life stage.

Test-Retest Reliability of EQ-5D-Y-3L Best-Worst Scaling Choices of Adolescents and Adults

BackgroundThere is an increasing interest to obtain adolescents’ own health state valuation preferences and to understand how these differ from adult preferences for the same health state. An important question in health state valuation is whether adolescents can report preferences reliably, yet research remains limited. ObjectiveThis study aims to investigate the test-retest reliability of best-worst scaling (BWS) to elicit adolescent preferences compared with adults. MethodsIdentical BWS tasks designed to value 3-level version of EQ-5D-Y health states were administered online in samples of 1000 adolescents (aged 11-17 years) and 1006 adults in Spain. The valuation survey was repeated approximately 3 days later. We calculated (1) simple percentage agreement and (2) kappa statistic as measures of test-retest reliability. We also compared BWS marginal frequencies and relative attribute importance between baseline and follow-up to explore similarities in the obtained preferences. ResultsWe found that both adolescents and adults were able to report their preferences with moderate reliability (kappa: 0.46 for adolescents, 0.46 for adults) for best choices and fair to moderate reliability (kappa: 0.39 for adolescents, 0.41 for adults) for worst choices. No notable difference was observed across years of child age. Higher consistency was observed for best choices than worst in some dimensions for both populations. No significant differences were found in the relative attribute importance between baseline and follow-up in both populations. ConclusionOur results suggest that BWS is a reliable elicitation technique to value 3-level version of EQ-5D-Y health states in both adolescents and adults.

Prospective association between evening circadian preference and academic functioning in adolescents: the role of daytime sleepiness.

There is growing evidence for the role of circadian factors in adolescents' sleep and academic adjustment, with greater evening preference being linked to poorer academic functioning. However, studies have yet to evaluate this association prospectively in adolescence, nor have studies examined daytime sleepiness as a putative mechanism linking evening preference to poor academic functioning. The current study used a multi-informant design to test the prospective association of evening circadian preference, daytime sleepiness, and academic functioning (e.g., global academic impairment and grades) across 2 years in adolescence. As evening circadian preference, sleepiness, and academic problems are elevated in adolescents with ADHD, we used a sample enriched for adolescents with ADHD and explored whether ADHD moderated effects. Participants were 302 adolescents (Mage = 13.17 years; 44.7% female; 81.8% White; 52% with ADHD). In the fall of eighth grade, adolescents reported on their circadian preference, and in the fall of ninth grade, adolescents and parents completed ratings of daytime sleepiness. In the middle of 10th grade, parents and teachers reported on adolescents' academic impairment and at the end of 10th grade, adolescents' grade point average (GPA) was obtained from school records. Above and beyond covariates (e.g., adolescent sex, ADHD status, medication, sleep duration) and baseline academic impairment, greater self-reported evening preference in 8th grade predicted increased parent ratings of academic impairment in 10th grade indirectly via adolescent and parent ratings of daytime sleepiness in 9th grade. Furthermore, evening preference in 8th grade predicted greater teacher ratings of academic impairment and lower average GPA in 10th grade via parent ratings of daytime sleepiness in 9th grade, controlling for covariates and baseline GPA. ADHD status did not moderate indirect effects. Findings underscore daytime sleepiness as a possible intervening mechanism linking evening preference to poor academic functioning across adolescence. Intervention studies are needed to evaluate whether targeting circadian preference and sleepiness improves academic functioning in adolescents.

Valuing EQ-5D-Y: the current state of play

BackgroundFor nearly a decade, value sets for the EQ-5D-Y were not available, reflecting challenges in valuing child HRQoL. A methodological research programme led to publication of a valuation protocol in 2020, which was rapidly taken up by local study teams. By the end of 2022, between 11 and 17 EQ-5D-Y value sets will be available, more than for any other child HRQoL measure. It is timely to review the experience of those using the protocol to identify early learnings and remaining issues where more research is needed.MethodsIn June 2021, the EuroQol Group organised a three-day workshop, bringing together all those involved in EQ-5D-Y value set studies and related methodological research concerning EQ-5D-Y and valuation. Workshop discussions were captured by note taking and recording all sessions and online chat. A narrative summary of all sessions was produced and synthesised to identify points of agreement and aspects of methods where uncertainty remains.ResultsThere was broad agreement that DCE is working well as the principal valuation method. However, the most appropriate means of anchoring the latent scale values produced by DCE remains unclear. Some studies have deviated from the protocol by extending the number of states included in TTO tasks, to better support modelling of DCE and TTO. There is ongoing discussion about the relative merits of alternative variants of TTO and other methods for anchoring. Very few studies have consulted with local end-users to gauge the acceptability of methods used to value EQ-5D-Y.ConclusionsPriority areas for research include testing alternative methods for anchoring DCE data; exploring the preferences of adolescents; and scale differences in values for EQ-5D-Y and adult EQ-5D states, and implications of such differences for the use of EQ-5D-Y values in HTA. Given the normative elements of the protocol, engaging with HTA bodies and other local users should be the first step for all future value set studies. Value sets undertaken to date are for the three-level EQ-5D-Y. However, the issues discussed in this paper are equally relevant to valuation of the five-level version of EQ-5D-Y; indeed, similar challenges are encountered valuing any measure of child HRQoL.