Literature DB >> 34221702

Knowledge, Motivations and Concerns about Participation in Breast Cancer Clinical Trials in Puerto Rico.

Marinilda Rivera-Díaz1, Angélica N García-Romero2, Alelí M Ayala-Marín3, Camille Vélez-Alamo3, Adrianna I Acevedo-Fontánez3, Mariana Arévalo4, Vivian Colón-López3.   

Abstract

BACKGROUND: Clinical trials (CT) in breast cancer have been crucial for new treatment discoveries. While participation in cancer CT is low, minorities are particularly underrepresented. This study aimed to identify factors influencing the participation in CTs based on the experiences of Latina breast cancer survivors in Puerto Rico (PR), especially their CT knowledge, motivations, and concerns.
METHOD: Focus groups (FG) were conducted by two social workers and the University of Puerto Rico/MD Anderson Community Health Educator. Participants were stratified into two subgroups: a) women with CT experience and b) those without CT experience. Seven FG were completed among breast cancer survivors (n=34) at two hospitals located in Caguas and San Juan, PR.
RESULTS: Our findings showed that participants expressed a basic knowledge and understanding of clinical trials. Motivations to participate included a desire to help others, non-monetary incentives to participation, self-benefits, readiness to participate based on the phases of illness, and enhanced relationships with the clinical trial recruitment team. Regardless of their previous experience with CTs, participants expressed concerns about participation including limited of knowledge about trial procedures and results, and lack of transportation, childcare, and support from family. RECOMMENDATIONS: The barriers and motivations identified for CT participation are modifiable and best targeted using a multidisciplinary approach. Social workers could play a potential role in participant recruitment and retention by clarifying research protocols to potential participants, as well as conducting CT. Our findings can help enhance capacity and training efforts for health professionals involved in CT recruitment and retention in culturally-relevant ways.

Entities:  

Keywords:  Breast Cancer Survivor; Clinical Trials; Hispanic; Latinas; Puerto Rico

Year:  2020        PMID: 34221702      PMCID: PMC8248579     

Source DB:  PubMed          Journal:  J Health Dispar Res Pract        ISSN: 2166-5222


  16 in total

1.  An ethno-medical perspective on research participation: a qualitative pilot study.

Authors:  José L Calderón; Richard S Baker; Horacio Fabrega; José G Conde; Ron D Hays; Erik Fleming; Keith Norris
Journal:  MedGenMed       Date:  2006-04-25

Review 2.  Effective recruitment and retention of minority research participants.

Authors:  Antronette K Yancey; Alexander N Ortega; Shiriki K Kumanyika
Journal:  Annu Rev Public Health       Date:  2006       Impact factor: 21.981

3.  Motivators and barriers to Latinas' participation in clinical trials: the role of contextual factors.

Authors:  Laricca London; Alejandra Hurtado-de-Mendoza; Minna Song; Ankita Nagirimadugu; Gheorghe Luta; Vanessa B Sheppard
Journal:  Contemp Clin Trials       Date:  2014-11-26       Impact factor: 2.226

4.  Hispanic accrual on randomized cancer clinical trials: a call to arms.

Authors:  Alberto Parra; Anand B Karnad; Ian M Thompson
Journal:  J Clin Oncol       Date:  2014-05-19       Impact factor: 44.544

5.  Barriers to the participation of African-American patients with cancer in clinical trials: a pilot study.

Authors:  Anjali S Advani; Benjamin Atkeson; Carrie L Brown; Bercedis L Peterson; Laura Fish; Jeffrey L Johnson; Jon P Gockerman; Marc Gautier
Journal:  Cancer       Date:  2003-03-15       Impact factor: 6.860

6.  Unequal burden of disease, unequal participation in clinical trials: solutions from African American and Latino community members.

Authors:  Marvella E Ford; Laura A Siminoff; Elisabeth Pickelsimer; Arch G Mainous; Daniel W Smith; Vanessa A Diaz; Lea H Soderstrom; Melanie S Jefferson; Barbara C Tilley
Journal:  Health Soc Work       Date:  2013-02

Review 7.  Inclusion of minorities and women in cancer clinical trials, a decade later: Have we improved?

Authors:  Kat Kwiatkowski; Kathryn Coe; John C Bailar; G Marie Swanson
Journal:  Cancer       Date:  2013-05-14       Impact factor: 6.860

8.  Participation in cancer clinical trials: race-, sex-, and age-based disparities.

Authors:  Vivek H Murthy; Harlan M Krumholz; Cary P Gross
Journal:  JAMA       Date:  2004-06-09       Impact factor: 56.272

9.  Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

Authors:  Anne Townsend; Susan M Cox
Journal:  BMC Med Ethics       Date:  2013-10-12       Impact factor: 2.652

10.  Mexican-American perspectives on participation in clinical trials: A qualitative study.

Authors:  Mariana Arevalo; Natalia I Heredia; Sarah Krasny; Maria L Rangel; Leticia A Gatus; Lorna H McNeill; Maria E Fernandez
Journal:  Contemp Clin Trials Commun       Date:  2016-06-27
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  1 in total

Review 1.  Cancer Epidemiology in Hispanic Populations: What Have We Learned and Where Do We Need to Make Progress?

Authors:  Laura Fejerman; Amelie G Ramirez; Anna María Nápoles; Scarlett Lin Gomez; Mariana C Stern
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2022-05-04       Impact factor: 4.090

  1 in total

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