Enhancing accrual to clinical trials of adolescents and young adults with cancer

Fern, Lorna A; Taylor, Rachel

doi:10.1002/pbc.27233

Cited by 18 publications

(16 citation statements)

References 47 publications

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“…This population is known to have lower involvement in clinical trials in comparison with children and older adults,22 58 yet there have been no targeted interventions developed to improve recruitment 59. We have reported that to optimise recruitment to clinical trials, what we have identified as ‘the 5 A’s’ need to be addressed, namely availability, accessibility, awareness, appropriateness and acceptability 58.…”

Section: Discussionmentioning

confidence: 99%

Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England

et al. 2019

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ObjectiveInternational recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist principal treatment centres (PTCs) deliver cancer care to young people. Despite this expansion of specialist care, systematic investigation of associated outcomes and costs has, to date, been lacking. The aim of this paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort and the development of the bespoke measures of levels of care and disease severity, which will inform the evaluation of cancer services in England.DesignProspective, longitudinal, observational study.SettingNinety-seven National Health Service hospitals in England.ParticipantsA total of 1114 participants were recruited and diagnosed between July 2012 and December 2014: 55% (n=618) were men, mean age was 20.1 years (SD=3.3), most (86%) were white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and leukaemia (13%).ResultsAt diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline to severe anxiety, and 21% had borderline to severe depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was lower in the cohort than for young people diagnosed during the same period who were not recruited (cumulative survival probability 4 years after diagnosis: 88% vs 92%).ConclusionsData collection was completed in March 2018. Longitudinal comparisons will determine outcomes and costs associated with access/exposure to PTCs. Findings will inform international intervention and policy initiatives to improve outcomes for young people with cancer.

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Section: Discussionmentioning

confidence: 99%

Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England

et al. 2019

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“…While most AYAs believe participation will help themselves or others, fewer than 50% enroll in a trial during their cancer experience [4,7,8,9]. Barriers may be concrete, including sociodemographic factors and limited access to trials, as well as philosophical, including AYA trust in research processes, practical considerations for participation, and perceptions of trial acceptability [9,10,11,12,13]. These barriers are particularly important when it comes to psychosocial intervention research, where even fewer AYAs participate compared to pharmacology-based research [11].…”

Section: Introductionmentioning

confidence: 99%

Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial

et al. 2019

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Background: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies learned during the trial’s conduct. Methods: We summarized data from the medical record and staff field notes regarding reasons for participation/non-participation. We conducted two focus groups with study staff; directed content analyses identified strategies for success. Results: 92 AYAs enrolled (77% of approached; n = 50 Usual Care (control), n = 49 PRISM (intervention)). In eligible families who declined participation (n = 22 AYAs, n = 8 parents), the AYAs more commonly had advanced cancer (n = 11 (37%) declined vs. n = 25 (26%) enrolled). AYA reasons for non-enrollment were predominantly “not interested”; parents worried participation was “too burdensome.” Staff strategies for accrual included having significant time to introduce the study and underscoring a desire to learn from the patient. After enrollment, AYAs who discontinued participation were more commonly assigned to control (n = 5 (10%) control vs. n = 2 (4%) intervention). Only n = 1 AYA chose to discontinue participation after receiving the intervention. Conclusions: Efforts to engage AYAs prior to and during studies may help with accrual and retention.

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“…Reasons reported to be common obstacles for accrual in clinical trials are often investigated independently a) nancial barriers (8), b) patient-reported factors (9, 10), c) physician-related factors (11), d) barriers encountered by selected patient population (12)(13)(14)(15)(16), or e) selected disease sites (17,18).…”

Section: Introductionmentioning

confidence: 99%

Research Staff Perspectives on Cancer Clinical Trials and Barriers to Recruitment: A Qualitative Research

Keruakous

Day

Garcia-Ramiu

et al. 2021

Preprint

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Study objectives-Highlight common barriers to recruiting adults' cancer patients, encountered by research coordinators from all disease sites-Propose effective solutions to identified barriers.Results We are reporting our results of a qualitative research methodology investigating barriers to clinical trials enrollment from a new perspective. The most commonly reported obstacles, for clinical trials enrollment, from our research staff perspective were categorized into five themes: clinical trials protocol, communication barriers and cultural beliefs, financial barriers, patients' comorbidities and performance status, and physicians’ commitment. Assessing barriers encountered by clinical research staff is infrequently used as a metric for improving clinical trial enrollment, but provides important perspective. Interventions to improve clinical trial feasibility and accrual are critical to improve cancer care.

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Enhancing accrual to clinical trials of adolescents and young adults with cancer

Cited by 18 publications

References 47 publications

Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England

Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England

Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial

Research Staff Perspectives on Cancer Clinical Trials and Barriers to Recruitment: A Qualitative Research

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