Anyone who faces a cancer diagnosis is at risk for experiencing an elevated risk of distress. A study of the Cancer Support Community's Cancer Experience Registry provides convincing evidence that culture can have a powerful impact on the type and degree of that distress. The study was presented to the American Psychosocial Oncology Society (APOS) annual meeting in March 2016.
“Distress screening is a very important tool in understanding and measuring the ways in which cancer impacts a person’s quality of life,” says Joanne Buzaglo, PhD, Senior Vice President of Research and Training for the Cancer Support Community, who presented the results. “We can assess a wide range of social and emotional concerns. We found that African American and Latino patients have higher levels of overall distress with Latinos reporting the highest levels. We think this is a powerful statement that cultural disparities still have a persistent, important role in defining the cancer experience.”
Latinos are twice as likely to be at risk for depression and report significantly higher levels of overall distress than whites. In addition to higher overall levels of distress, Latinos reported greater concerns compared to white patients over feeling irritable (29% vs. 17%), lonely or isolated (29% vs. 18%), worry about the future (52% vs. 35%), nutrition (58% vs. 38% and sleep problems (43% vs. 26%). African American cancer survivors reported greater concerns than whites over pain (36% vs. 23%), making a treatment decision (25% vs. 15%) and managing side effects (29% vs. 28%). While Latinos report, on average, the highest levels of distress, they were also less likely to report that they receive information about their cancer diagnosis and treatment options. These differences were found after adjusting for age, employment, education, cancer diagnosis and the time since the primary diagnosis.
“We are not only seeing higher levels of distress, we are finding cultural differences in the types of concerns that people report,” says Dr. Buzaglo. “This provides important insight in how we can improve the overall care to people with cancer and target our resources and tools. Doing distress screening and paying close attention to the results is a critical component in providing the best and most personalized treatment to each patient.”
Dr. Buzaglo noted that the study results reflect a relatively higher educated and more active population of cancer survivors--individuals who participate in the Cancer Experience Registry. The Registry also includes fewer representatives of ethnic minorities, especially those representing Asian populations. The study found substantial differences for Asian patients, but the study size was limited.
“We know these disparities are real, but we need to find better ways to reach out to the full range of culturally diverse groups,” says Dr. Buzaglo. “We want to dig deeper into the interaction between cultural and socioeconomic factors. The Cancer Experience Registry is all about elevating the patient voice. It is essential that we hear the voices of people from every cultural background so that we can genuinely integrate the culturally competent social and emotional health into the overall treatment plan.”
To read the full study, click here.
To join or learn more about the Cancer Experience Registry, please visit www.cancerexperienceregistry.org