Clinical Trial Participation among Ethnic/Racial Minority and Majority Patients with Advanced Cancer: What Factors Most Influence Enrollment?

Jimenez, Rachel; Zhang, Baohui; Joffe, Steven; Nilsson, Matthew; Rivera, Lorna; Mutchler, Jan E.; Lathan, Christopher S.; Paulk, M. Elizabeth; Prigerson, Holly G.

doi:10.1089/jpm.2012.0413

Cited by 27 publications

(22 citation statements)

References 18 publications

(22 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Another important point is that older patients are more likely to decline participation (Ellis, Butow, Tattersall, Dunn, & Houssami, ; Go et al., ). Patients with poor health status also decline participation in clinical trials more often (Jimenez et al., ; Mao et al., ). Results concerning sex disparities in trial participation are inconclusive so far.…”

Section: Introductionmentioning

confidence: 99%

Factors associated with non-participation and dropout among cancer patients in a cluster-randomised controlled trial

et al. 2017

View full text Add to dashboard Cite

We investigated the impact of demographic and disease related factors on nonparticipation and dropout in a cluster-randomised behavioural trial in cancer patients with measurements taken between hospitalisation and 6 months thereafter. The percentages of non-participation and dropout were documented at each time point. Factors considered to be potentially related with non-participation and dropout were as follows: age, sex, marital status, education, income, employment status, tumour site and stage of disease. Of

show abstract

Section: Introductionmentioning

confidence: 99%

Factors associated with non-participation and dropout among cancer patients in a cluster-randomised controlled trial

et al. 2017

View full text Add to dashboard Cite

show abstract

“…Low socioeconomic status and rural residence also appear to be associated with low enrollment in clinical trials. Although racial/ethnic inequalities in cancer clinical trial participation have been extensively reported in adults [8,[12][13][14][15][16][17][18][19], little work has been done to describe and understand racial/ethnic disparities in research protocol enrollment Background. Survival rates in pediatric oncology have improved dramatically, in part due to high patient participation in clinical trials.…”

Section: Introductionmentioning

confidence: 99%

Participation in pediatric oncology research protocols: Racial/ethnic, language and age‐based disparities

Aristizabal

Singer

Cooper

et al. 2015

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background Survival rates in pediatric oncology have improved dramatically, in part due to high patient participation in clinical trials. Although racial/ethnic inequalities in clinical trial participation have been reported in adults, pediatric data and studies comparing participation rates by socio-demographic characteristics are scarce. The goal of this study was to assess differences in research protocol participation for childhood cancer by age, sex, race/ethnicity, parental language, cancer type and insurance status. Procedure Data on enrollment in any protocol, biospecimen, or therapeutic protocols were collected and analyzed for newly diagnosed pediatric patients with cancer from 2008–2012 at Rady Children’s Hospital. Results Among the 353 patients included in the analysis, 304 (86.1%) were enrolled in any protocol. Enrollment in biospecimen and therapeutic protocols was 84.2% (261/310) and 81.1% (206/254), respectively. Logistic regression analyses revealed significant enrollment underrepresentation in any protocol for Hispanics compared to Non-Hispanic whites (81% vs. 91%; Odds Ratio [OR], 0.43; 95% Confidence Interval [CI], 0.21–0.90; p=0.021) and among children of Spanish-speaking vs. English-speaking parents (78% vs. 89%; OR, 0.45; 95%CI, 0.23–0.87; p=0.016). Compared to patients aged 0–4 years, significant underrepresentation was also found among patients 15–21 years old (92% vs.72%; OR, 0.21; 95% CI, 0.09–0.48; p<0.001). Similar trends were observed when analyzing enrollment in biospecimen and therapeutic protocols separately. Conclusions There was significant underrepresentation in protocol participation for Hispanics, children of Spanish-speaking parents, and patients ages 15–21. Research is urgently needed to understand barriers to research participation among these groups underrepresented in pediatric oncology clinical trials.

show abstract

“…This dynamic affected the communication about the trial and made the patients unable to fully understand the trial information provided (Thorne, Taylor, Stephens, Kim-Sing, & Hislop, 2013). Research has also suggested that patients with advanced cancer who did not have, or did not wish to have, an end-of-life discussion, were more likely to be enrolled in trials (Jimenez et al, 2013). Another study found that experience had an influence on the decision because patients with prior trial experience were more prone to participate again (Lee et al, 2012).…”

Section: Discussion Of Findingsmentioning

confidence: 99%

Cancer patients’ perceptions of factors influencing their decisions on participation in clinical drug trials: A qualitative meta‐synthesis

Nielsen

Berthelsen

2019

Journal of Clinical Nursing

View full text Add to dashboard Cite

Aims and objectives To examine cancer patients’ perceptions of factors that may influence their decisions on participating in phase I–III clinical drug trials. Background The number of cancer participants in clinical drug trials has increased rapidly in Denmark in recent years. The rights, safety and well‐being of patients considering participation are protected by the international, ethical and scientific principles. A meta‐synthesis was conducted to enable health professionals to support cancer patients who are considering trial participation in accordance with the above principles. Design Meta‐synthesis. Methods A qualitative meta‐synthesis, as described by Sandelowski and Barroso, was conducted based on a literature search in PubMed, CINAHL, EMBASE and PsycINFO. Nine reports were found eligible and were included. The PRISMA checklist was used. Results A framework was developed, and patients’ perceptions of the factors influencing their decisions were identified, namely patients’ perceptions of their relatives, the physician, the hope of therapeutic benefit, altruism, having other options and living with cancer. Conclusions This study shows that cancer patients’ decisions on participation in clinical drug trials are influenced by their perceptions of trust towards the physician, their relatives’ attitudes and the consequences participation might have for their families. Patients are motivated to participate due to the hope of therapeutic benefit and for altruistic reasons. The factors influencing their decisions to participate include a cost‐benefit consideration, which in turn may be subject to the patient's perception of having other options available besides participation. This may be related to the patient's attitude towards living with cancer, and the decision can be a way of trying to cope with the psychological aspects of living with cancer. Relevance to clinical practice The results of this meta‐synthesis offer insight into patients’ perceptions of what may influence their decisions, and they enable health professionals to support patients making such decisions.

show abstract

Clinical Trial Participation among Ethnic/Racial Minority and Majority Patients with Advanced Cancer: What Factors Most Influence Enrollment?

Abstract: Patient race/ethnicity was not associated with clinical trial enrollment after adjustment for socioeconomic covariates. Patients with advanced cancer endorsing less engagement in end-of-life planning were more likely to be enrolled in a clinical trial.

Cited by 27 publications

References 18 publications

Factors associated with non-participation and dropout among cancer patients in a cluster-randomised controlled trial

Factors associated with non-participation and dropout among cancer patients in a cluster-randomised controlled trial

Participation in pediatric oncology research protocols: Racial/ethnic, language and age‐based disparities

Cancer patients’ perceptions of factors influencing their decisions on participation in clinical drug trials: A qualitative meta‐synthesis

Contact Info

Product

Resources

About