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Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

ABSTRACT: Adolescents and young adults (AYAs) are underrepresented in cancer clinical trials (CCTs). Limited trial enrollment slows progress in improving survival rates and prevents the collection of valuable biospecimens. A systematic literature review was conducted to assess barriers and facilitators to AYA enrollment in CCTs and to identify opportunities to improve enrollment. The PubMed MEDLINE, Web of Science, Scopus, and PsycINFO databases were searched to identify studies relevant to AYA CCT enrollment. Eligibility criteria included the qualitative and/or quantitative evaluation of barriers and facilitators to AYA enrollment. One hundred fifty-five unique publications were identified; 13 were included in the final analysis. Barriers to AYA enrollment in CCTs included a lack of existing trials applicable to the patient population, limited access to available CCTs, and a lack of physician awareness of relevant trials. Facilitators of enrollment included optimizing the research infrastructure, improving the awareness of available CCTs among providers, and enhancing communication about CCTs between providers and patients. In conclusion, the limited available research reports institution- and patient-level barriers and facilitators to AYA CCT enrollment. Because of persistent disparities in AYA enrollment, there is an urgent need to further identify the barriers and facilitators to AYA CCT enrollment to determine actionable areas for intervention.

SUBMITTER: Siembida EJ

PROVIDER: S-EPMC7029803 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

Siembida Elizabeth J EJ Loomans-Kropp Holli A HA Trivedi Neha N O'Mara Ann A Sung Lillian L Tami-Maury Irene I Freyer David R DR Roth Michael M

Cancer 20191223 5

Adolescents and young adults (AYAs) are underrepresented in cancer clinical trials (CCTs). Limited trial enrollment slows progress in improving survival rates and prevents the collection of valuable biospecimens. A systematic literature review was conducted to assess barriers and facilitators to AYA enrollment in CCTs and to identify opportunities to improve enrollment. The PubMed MEDLINE, Web of Science, Scopus, and PsycINFO databases were searched to identify studies relevant to AYA CCT enroll ...[more]

PMID: 31869454

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Project description:OBJECTIVES:Physical activity is widely recommended in the treatment and management of cystic fibrosis (CF). Despite the numerous physical and psychological benefits, many young people with CF are not achieving the recommended levels of physical activity. The aim of this systematic review was to identify and synthesise available qualitative investigations exploring the motives for, barriers to and facilitators of physical activity among young people with CF. METHODS:The following six electronic databases were systematically searched: Applied Social Sciences Index and Abstracts (ASSIA), CINAH, EMBASE, MEDLINE, MEDLINE-in-process, PsycINFO up to August 2019. Keywords were used to identify qualitative research that explored engagement in physical activity among young people with CF. Titles and abstracts were screened by two independent reviewers, and potentially relevant articles were retrieved in full. Articles were eligible for inclusion if they employed any qualitative method and recruited participants under the age of 24 years with CF. Risk of bias of included studies was assessed via the Critical Appraisal Skills Programme. Results were synthesised using a thematic approach. RESULTS:Seven studies met our inclusion criteria and were included in the review. Overall, studies were of moderate to high quality. Thematic synthesis identified nine main themes that encompass motives for, barriers to and facilitators of physical activity among young people with CF. These were (1) Perceptions of physical activity. (2) Value attributed to physical activity. (3) Social influences. (4) Competing priorities. (5) Fluctuating health. (6) Normality. (7) Control beliefs. (8) Coping strategies. (9) Availability of facilities. Previous reviews have been unable to identify intervention characteristics that influence physical activity behaviour. CONCLUSIONS:This review provides detailed information on the physical (biological-clinical), psychological, social and environmental influences on physical activity behaviour, thus providing numerous targets for future interventions. This in turn could facilitate promotion of physical activity among young people with CF.

Project description:BackgroundAdolescents and young adults (AYA) in the United States, and in Washington, District of Columbia (DC), specifically, are disproportionately affected by HIV. Both the national Ending the HIV Epidemic initiative and DC-specific plans emphasize HIV testing, and innovative strategies to encourage testing among AYA are needed.ObjectiveThe purpose of this study is to identify sexual behaviors, HIV knowledge, HIV perceptions (eg, susceptibility and severity), and perceived barriers and facilitators to HIV testing among AYA at risk for HIV in DC.MethodsThis study was part of a larger study to determine the acceptability of using a life-and-dating simulation game to increase HIV testing among AYA. Focus groups and surveys stratified by self-reported sexual orientation were conducted among, and administered to, AYA aged 13-24 years in DC. HIV knowledge was explored during focus groups and measured using an adapted version of the Brief HIV Knowledge Questionnaire. Survey data were summarized using descriptive statistics and compared by self-reported sexual orientation. Transcripts were thematically analyzed.ResultsOf the 46 AYA who participated in the focus groups, 30 (65%) identified as heterosexual and 16 (35%) as lesbian, gay, bisexual, transgender, or queer. A higher proportion of lesbian, gay, bisexual, transgender, or queer AYA reported sexual activity (12/16, 75%, vs 18/30, 60%), condomless sex (11/12, 92%, vs 15/18, 83%), and HIV testing (13/16, 81%, vs 17/29, 58%) than heterosexual AYA. HIV prevention ("condoms" and "...PrEP") and transmission ("exchange of fluids") knowledge was high, and most (34/44, 77%) of the AYA perceived HIV testing as beneficial. However, the AYA also demonstrated some misinformation concerning HIV: an average of 67% (31/46; SD 0.474) of the participants believed that an HIV test could deliver accurate results 1 week after a potential exposure and an average of 72% (33/46; SD 0.455) believed that an HIV vaccine exists. The AYA also identified individual ("...people...are scared"), interpersonal ("it's an awkward conversation"), and structural ("...people don't...know where they can go") barriers to testing. Most of the AYA indicated that they were very likely to use the demonstrated game prototype to help with getting tested for HIV (median 3.0, IQR 2.0-3.0, using a scale ranging from 0 to 3, with 3 indicating high likelihood) and strongly agreed that the game was interesting (median 5.0, IQR 5.0-5.0), fun (median 5.0, IQR 4.0-5.0), and easy to learn (median 5.0, IQR 5.0-5.0, using a scale ranging from 1 to 5, with 5 indicating strong agreement).ConclusionsThese results suggest a need for multilevel HIV testing interventions and informed the development of a mobile health intervention aiming to increase HIV knowledge and risk perception among AYA, while reducing barriers to testing at the individual and structural levels, supporting efforts to end the domestic HIV epidemic.

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Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

Publications

Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

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