A prevailing cultural conviction that the doctor always takes charge of treatment decisions may contribute to meagre participation rates in clinical trials among Hispanic cancer patients in the US, a new study has found.
Researchers from Moffitt Cancer Center in Tampa, Florida used focus groups involving 36 Spanish-speaking cancer survivors from Tampa and Puerto Rico to explore why awareness of, and participation in, clinical trials are so low in this population.
This was part a broader effort to develop a Spanish-language booklet and video that could help to educate and empower Hispanic patients.
The 45.5 million Hispanics living in the United States are the nation’s fastest growing ethnic group, which creates a need for healthcare educational materials targeting their language and culture, the Moffitt Cancer Center researchers pointed out.
These educational materials should not only be translated from English, they should also be adapted to meet Hispanic patients’ informational needs in a culturally appropriate manner, the researchers said.
The educational materials for the study, which was published online in the Journal of Health Communication: International Perspectives, were developed using a social marketing approach, which targets a specific audience rather than creating a generic product.
“We found that Hispanic patients who prefer information in Spanish had different informational needs and concerns than non-Hispanic patients,” commented the study’s lead author Gwendolyn Quinn , scientific director of the Survey Methods Core Facilty and member of the Health Outcomes and Behavior Program at Moffitt.
The researchers encountered several examples of “culturally based ideas” that may have kept patients from enrolling in clinical trials, they reported.
For example, there was confusion among Hispanic patients over why a doctor would ask them to make a treatment decision, such as taking part in a clinical trial. The core belief was that the doctor would tell patients what to do.
Moreover, in Hispanic culture, the patient tends to rely on his or her family to help make healthcare decisions, the researchers observed.
The team led by Quinn is using the Spanish-language video and booklet in a randomised clinical trial to evaluate their effectiveness in improving perceptions of clinical studies among Spanish-speaking cancer patients.
“They may say no, but they will be prepared with knowledge about the purpose of clinical trials and will not be making an uninformed decision,” Quinn said.