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. 2018 Jun 13:9:87-94.
doi: 10.2147/AHMT.S163121. eCollection 2018.

Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review

Victoria Forcina  1 , Branavan Vakeesan  1 , Chelsea Paulo  1 , Laura Mitchell  1 , Jennifer Ah Bell  2 , Seline Tam  1 , Kate Wang  1 , Abha A Gupta  1   3   4 , Jeremy Lewin  1   3   5
Affiliations

Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review

Victoria Forcina et al. Adolesc Health Med Ther. .

Abstract

Purpose: Although cancer clinical trials (CT) offer opportunities for novel treatments that may lead to improved outcomes, adolescents and young adults (AYA) are less likely to participate in these trials as compared to younger children and older adults. We aimed to identify the perceptions and attitudes toward CT in AYA that influence trial participation.

Materials and methods: A systematic review of cancer literature was conducted that assessed perceptions and attitudes toward CT enrollment limited to AYA patients (defined as age 15-39). We estimated the frequency of identified themes by pooling identified studies.

Results: In total, six original research articles were identified that specifically addressed perceptions or attitudes that influenced CT participation in AYA patients. Three studies were conducted at pediatric centers - one at an AYA unit, one at an adult cancer hospital, and one was registry based. Major themes identified for CT acceptability included: hope for positive clinical affect, altruism, and having autonomy. Potential deterrents included: prolonged hospitalization, worry of side effects, and discomfort with experimentation.

Conclusion: Limited information is available with regard to the perceptions and attitudes toward CT acceptability among AYA patients, especially those treated at adult cancer centers, which prevents generalization of data and themes. Future research assessing strategies for understanding and supporting CT decision-making processes among AYA represents a key focus for future funding to improve CT enrollment.

Keywords: adolescent and young adult; barriers; cancer; clinical trials; psychosocial.

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Conflict of interest statement

Disclosure Abha A Gupta and Jeremy Lewin share senior authorship. The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
PRISMA flow diagram of articles identified specifically pertaining to patient-related psychosocial barriers to clinical enrollment in adolescent and young adults with cancer. Abbreviations: CT, clinical trials; AYA, adolescents and young adults; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
Figure 2
Figure 2
Selected examples of barriers to clinical trials in AYA highlighting some potential solutions. Abbreviation: AYA, adolescents and young adults.
See this image and copyright information in PMC

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