Perceptions of and decision making about clinical trials in adolescent and young adults with Cancer: a qualitative analysis
| Autor: | Victoria Forcina, Seline Tam, Laura Mitchell, Kate Wang, Jennifer A. H. Bell, Abha A. Gupta, Jeremy Lewin |
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| Rok vydání: | 2018 |
| Předmět: |
Gerontology
Adult Male Cancer Research Health Knowledge Attitudes Practice genetic structures Adolescent Beliefs media_common.quotation_subject Decision Making lcsh:RC254-282 03 medical and health sciences Young Adult 0302 clinical medicine Quality of life (healthcare) 030225 pediatrics Perception Neoplasms Severity of illness Genetics Humans Patient participation Young adult media_common Cancer Clinical Trials as Topic Patient Selection Peer group Adolescent and young adult lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens humanities Clinical trial Oncology 030220 oncology & carcinogenesis Attitudes Female sense organs Patient Participation Psychology Psychosocial Barriers Research Article |
| Zdroj: | BMC Cancer BMC Cancer, Vol 18, Iss 1, Pp 1-8 (2018) |
| ISSN: | 1471-2407 |
| Popis: | Background Adolescent and young adults (AYA) enrolment rates into cancer clinical trials (CCT) are the lowest of any age group globally. As AYA have distinct biological, psychosocial and relational needs, we aimed to explore any unique factors influencing their CCT decision-making process, including AYA-specific perceptions or attitudes towards CCT. Methods Qualitative interpretive descriptive methodology was used to explore AYA perceptions and decision-making related to CCT. An analytic approach conducive to inductive imagining and exploratory questioning was used in order to generate insights and interpret data. Results A total of 21 AYA were interviewed (median age: 31 (18–39)). Twelve (57%) participants had previously been approached to participate in CCT. Major themes influencing trial enrolment decisions were: 1) severity of illness/urgency for new treatment 2) side effect profile of investigational drug in the short and long term (e.g., impact on future quality of life) 3) who approached patient for trial participation (oncologist vs. other) 4) additional information found on-line about the trial and investigators, and 5) family, friends and peer group opinion regarding the CCT. Conclusions Several psychosocial and relational factors were identified as influencing AYA CCT decisions, some of which are unique to this demographic. Specific strategies to address barriers to CCT and enable supportive decision-making include: 1) involving family in decision-making and 2) helping AYA appreciate short- and long-term implications of trial participation. Finally, exploring social networking and general education about CCT that AYA can independently access may increase participation. Electronic supplementary material The online version of this article (10.1186/s12885-018-4515-2) contains supplementary material, which is available to authorized users. |
| Databáze: | OpenAIRE |
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