JNCI J Natl Cancer Inst (2015) 107(4) News
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New Tool Improves Doctor–Patient Communication By Mike Fillon their way around on a hospital floor; 44% of blacks and 14% of whites believe that exposing a tumor to air during surgery causes the tumor to spread.”
“Before now, there were only instruments that measured a particular aspect of general health literacy. We saw a need for a tool that is specific to cancer because of the vocabulary of the disease and complex treatment options that cancer patients face.” “Patient communication and shared decision making is really a very central role in delivering quality care,” said Patricia A. Ganz, M.D., professor of health policy and management at the Fielding School of Public Health at the University of California, Los Angeles. “A tool designed specifically for cancer literacy is helpful for achieving those goals.” The researchers defined health literacy as the degree to which individuals obtain, process, and understand basic health information and services needed to help them make suitable health decisions about their care. “Before now, there were only instruments that measured a particular aspect
of general health literacy,” Dumenci said. “We saw a need for a tool that is specific to cancer because of the vocabulary of the disease and complex treatment options that cancer patients face.” Unless informed in language they can understand, patients with limited CHL often struggle with adhering to medication regimens. They can’t communicate effectively with providers about treatment problems. They have trouble understanding what their responsibilities are so as not to jeopardize their health outcomes, including risks and survival rates. “Notifying physicians and pharmacists early on in care delivery, for example, would allow for timely interventions designed to reduce risk of adverse health outcomes for patients with limited CHL,” Dumenci said. To develop CHLT-30, researchers consulted with health literacy experts nationwide. They then conducted focus groups to better understand the difficulties cancer patients face, accounting for different ages, sexes, and education levels. “The study Levent Dumenci, Ph.D. team came up with around 125 possible test items that covered the entire range of CHL. We then reduced the number of questions to 78, then eventually 30,” Dumenci said. Measurements of CHL allow researchers to estimate treatment effect in
© Oxford University Press 2015. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: [email protected].
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Telling people they have cancer is a daunting task for clinicians. And when patients don’t understand, whether because of their education level or a language barrier combined with the stress of hearing devastating news, that can compromise treatment. Researchers at Virginia Commonwealth University Massey Cancer Center in Richmond have developed a tool that lessens this disconnect by identifying and gauging cancer health literacy (CHL) in minutes. The 4-year study evaluating the tool involved 1,306 black and white patients from Massey and other Richmond-area oncology clinics. The study appeared in the Journal of Health Communication (doi:1 0.1080/10810730.2014.943377). According to lead researcher Levent Dumenci, Ph.D., a member of the Cancer Prevention and Control research program at Massey and professor in the department of social and behavioral health at VCU’s medical school, the tool consists of test questions administered to patients through a touch-screen device. The first of its kind, the tool is called the Cancer Health Literacy Test, or CHLT-30. It measures cancer health literacy along a continuum and includes 30 questions about cancer treatment, medication side effects, and other related topics. Six of the 30 questions, called CHLT-6, were designed to quickly identify individuals with limited CHL. “We found, for example, that 23% of black and 3% of white cancer patients believe that rather than taking a pill twice a day as prescribed, taking it three times a day will help them get better faster,” Dumenci said. “Also, 19% of blacks and 5% of whites cannot follow a map to find
2 of 9 | JNCI J Natl Cancer Inst, 2015, Vol. 107, No. 4
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health literacy as not just simple knowledge but also ability, skills, and other related traits. The more knowledge the clinician has about the patients, the better the patients will understand what they’re told—which can only help them navigate the cancer world.” According to Ganz, CHL is not just a problem of the poor and uneducated. Many wealthier and more educated patients also have trouble understanding and dealing with the sophisticated information cancer patients receive, especially when they’re highly emotional and stressed. “One of the biggest challenges we face is appearing paternalistic, and finding the right balance of information to provide each patient is difficult. This type of screening tool could help us.” Ganz said she sees the six-question test as having more value. “I think the six items would let us know if the patient has low literacy and whether I have to work harder to make sure they understand what I’m talking about, and as a prerequisite for engaging them in informed decision making.” Chou also said she thinks CHLT-6 is more practical and would have greater clinical relevance than CHLT-30. “The longer test can be seen as daunting, and frankly, we need to be careful and avoid the unintended consequences of administering tests. It’s typical for patients to try and hide some of their discomfort and vulnerability. What if they’re then presented with a challenging test? They can feel they’re being judged, not helped.” Dumenci said he recognizes that the study has limitations. “I know some people think it takes too long to complete CHLT-30.” Also, although the sample was large and covered cancer patients with
various demographic characteristics, it did not include Hispanics and other ethnic groups. “Evidence suggests, for example, that Hispanics have the highest rates of limited health literacy.”
Sample Questions From CHLT-30 Doctors often recommend high-calorie and high-protein foods for cancer patients in treatment. Which is the highest in calories and protein? a. French fries b. Cheeseburger c. Hard-boiled egg Adjuvant therapy is cancer treatment generally given after a tumor is removed. Neoadjuvant therapy is cancer treatment generally given to shrink a tumor before surgery. Mr. Davis has had his tumor surgically removed. After his surgery, he will get chemotherapy. The chemotherapy is: a. Neoadjuvant b. Adjuvant The normal range for hemoglobin for a male is 13.3–17.2 g/dL. Joe’s hemoglobin is 9.7 g/dL. Is Joe within the normal range? a. Yes b. No In people who develop oral cancers, 25% of these cases occur in the tongue. Oral cancer occurs in the tongue: a. 1 out of every 25 cases b. 25 out of every 100 cases c. 25 out of every 1000 cases © Oxford University Press 2015. DOI:10.1093/jnci/djv116 First published online April 2, 2015
Chimeric Antigen Receptor T-Cell Immunotherapy Tackles Blood Cancers By Vicki Brower In a pilot study of 39 children with highly aggressive acute lymphoblastic leukemia (ALL), treatment with a chimeric antigen receptor (CAR) T-cell immunotherapy resulted in a complete response
in 36, or 92%, at 1 month, and an eventfree survival of 70 % at six months. Of those patients, 76% remained in complete remission at 6 months after treatment with CTL019. Although 10 of these
patients relapsed, and five died, the first patient to receive the treatment remains cancer free since being treated in April 2012. These children, who had no other treatments available, received autologous
Downloaded from http://jnci.oxfordjournals.org/ at Indiana University Library on May 12, 2015
intervention studies, assess change, and establish relationships with theoretically relevant factors and clinically important outcomes such as mortality. “The instrument has a broad content coverage, [has] very high reliability, and is strongly linked to self-confidence about engaging in health decisions,” Dumenci said. Completing CHLT-30 takes 10–15 minutes, and the score reflects the number of correct responses. Patients in the doctor’s waiting room can complete CHLT-6 in just a few minutes. Seeing these results in advance allows the doctor to prepare to speak to patients in understandable language. Dumenci said CHLT-6 has invariant measurement properties between sex and race/ethnic groups and is externally validated. These features make CHLT-6 attractive for adoption in various cancer treatment settings—particularly oncology clinics and pharmacies. The study found that 18% of cancer patients have limited CHL, especially black, undereducated, and low-income patients. “Overall, the results supported the conclusion that the CHLT-30 accurately measures CHL along a continuum,” Dumenci said, “and that the CHLT-6 efficiently identifies patients with limited CHL with high accuracy.” “It is a very robust, psychometric study,” Ganz said. “I think is very important that they studied a large sample of patients representing different races to arrive at their conclusions.” “I find the methods they used in the study are very sound,” said Wenying Sylvia Chou, Ph.D., M.P.H., program director in the Health Communication and Informatics Research Branch of the Division of Cancer Control and Population Sciences at the National Cancer Institute. “I like that they treated
news news
New Tool Improves Doctor–Patient Communication By Mike Fillon their way around on a hospital floor; 44% of blacks and 14% of whites believe that exposing a tumor to air during surgery causes the tumor to spread.”
“Before now, there were only instruments that measured a particular aspect of general health literacy. We saw a need for a tool that is specific to cancer because of the vocabulary of the disease and complex treatment options that cancer patients face.” “Patient communication and shared decision making is really a very central role in delivering quality care,” said Patricia A. Ganz, M.D., professor of health policy and management at the Fielding School of Public Health at the University of California, Los Angeles. “A tool designed specifically for cancer literacy is helpful for achieving those goals.” The researchers defined health literacy as the degree to which individuals obtain, process, and understand basic health information and services needed to help them make suitable health decisions about their care. “Before now, there were only instruments that measured a particular aspect
of general health literacy,” Dumenci said. “We saw a need for a tool that is specific to cancer because of the vocabulary of the disease and complex treatment options that cancer patients face.” Unless informed in language they can understand, patients with limited CHL often struggle with adhering to medication regimens. They can’t communicate effectively with providers about treatment problems. They have trouble understanding what their responsibilities are so as not to jeopardize their health outcomes, including risks and survival rates. “Notifying physicians and pharmacists early on in care delivery, for example, would allow for timely interventions designed to reduce risk of adverse health outcomes for patients with limited CHL,” Dumenci said. To develop CHLT-30, researchers consulted with health literacy experts nationwide. They then conducted focus groups to better understand the difficulties cancer patients face, accounting for different ages, sexes, and education levels. “The study Levent Dumenci, Ph.D. team came up with around 125 possible test items that covered the entire range of CHL. We then reduced the number of questions to 78, then eventually 30,” Dumenci said. Measurements of CHL allow researchers to estimate treatment effect in
© Oxford University Press 2015. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: [email protected].
1 of 9
Downloaded from http://jnci.oxfordjournals.org/ at Indiana University Library on May 12, 2015
Telling people they have cancer is a daunting task for clinicians. And when patients don’t understand, whether because of their education level or a language barrier combined with the stress of hearing devastating news, that can compromise treatment. Researchers at Virginia Commonwealth University Massey Cancer Center in Richmond have developed a tool that lessens this disconnect by identifying and gauging cancer health literacy (CHL) in minutes. The 4-year study evaluating the tool involved 1,306 black and white patients from Massey and other Richmond-area oncology clinics. The study appeared in the Journal of Health Communication (doi:1 0.1080/10810730.2014.943377). According to lead researcher Levent Dumenci, Ph.D., a member of the Cancer Prevention and Control research program at Massey and professor in the department of social and behavioral health at VCU’s medical school, the tool consists of test questions administered to patients through a touch-screen device. The first of its kind, the tool is called the Cancer Health Literacy Test, or CHLT-30. It measures cancer health literacy along a continuum and includes 30 questions about cancer treatment, medication side effects, and other related topics. Six of the 30 questions, called CHLT-6, were designed to quickly identify individuals with limited CHL. “We found, for example, that 23% of black and 3% of white cancer patients believe that rather than taking a pill twice a day as prescribed, taking it three times a day will help them get better faster,” Dumenci said. “Also, 19% of blacks and 5% of whites cannot follow a map to find
2 of 9 | JNCI J Natl Cancer Inst, 2015, Vol. 107, No. 4
news
health literacy as not just simple knowledge but also ability, skills, and other related traits. The more knowledge the clinician has about the patients, the better the patients will understand what they’re told—which can only help them navigate the cancer world.” According to Ganz, CHL is not just a problem of the poor and uneducated. Many wealthier and more educated patients also have trouble understanding and dealing with the sophisticated information cancer patients receive, especially when they’re highly emotional and stressed. “One of the biggest challenges we face is appearing paternalistic, and finding the right balance of information to provide each patient is difficult. This type of screening tool could help us.” Ganz said she sees the six-question test as having more value. “I think the six items would let us know if the patient has low literacy and whether I have to work harder to make sure they understand what I’m talking about, and as a prerequisite for engaging them in informed decision making.” Chou also said she thinks CHLT-6 is more practical and would have greater clinical relevance than CHLT-30. “The longer test can be seen as daunting, and frankly, we need to be careful and avoid the unintended consequences of administering tests. It’s typical for patients to try and hide some of their discomfort and vulnerability. What if they’re then presented with a challenging test? They can feel they’re being judged, not helped.” Dumenci said he recognizes that the study has limitations. “I know some people think it takes too long to complete CHLT-30.” Also, although the sample was large and covered cancer patients with
various demographic characteristics, it did not include Hispanics and other ethnic groups. “Evidence suggests, for example, that Hispanics have the highest rates of limited health literacy.”
Sample Questions From CHLT-30 Doctors often recommend high-calorie and high-protein foods for cancer patients in treatment. Which is the highest in calories and protein? a. French fries b. Cheeseburger c. Hard-boiled egg Adjuvant therapy is cancer treatment generally given after a tumor is removed. Neoadjuvant therapy is cancer treatment generally given to shrink a tumor before surgery. Mr. Davis has had his tumor surgically removed. After his surgery, he will get chemotherapy. The chemotherapy is: a. Neoadjuvant b. Adjuvant The normal range for hemoglobin for a male is 13.3–17.2 g/dL. Joe’s hemoglobin is 9.7 g/dL. Is Joe within the normal range? a. Yes b. No In people who develop oral cancers, 25% of these cases occur in the tongue. Oral cancer occurs in the tongue: a. 1 out of every 25 cases b. 25 out of every 100 cases c. 25 out of every 1000 cases © Oxford University Press 2015. DOI:10.1093/jnci/djv116 First published online April 2, 2015
Chimeric Antigen Receptor T-Cell Immunotherapy Tackles Blood Cancers By Vicki Brower In a pilot study of 39 children with highly aggressive acute lymphoblastic leukemia (ALL), treatment with a chimeric antigen receptor (CAR) T-cell immunotherapy resulted in a complete response
in 36, or 92%, at 1 month, and an eventfree survival of 70 % at six months. Of those patients, 76% remained in complete remission at 6 months after treatment with CTL019. Although 10 of these
patients relapsed, and five died, the first patient to receive the treatment remains cancer free since being treated in April 2012. These children, who had no other treatments available, received autologous
Downloaded from http://jnci.oxfordjournals.org/ at Indiana University Library on May 12, 2015
intervention studies, assess change, and establish relationships with theoretically relevant factors and clinically important outcomes such as mortality. “The instrument has a broad content coverage, [has] very high reliability, and is strongly linked to self-confidence about engaging in health decisions,” Dumenci said. Completing CHLT-30 takes 10–15 minutes, and the score reflects the number of correct responses. Patients in the doctor’s waiting room can complete CHLT-6 in just a few minutes. Seeing these results in advance allows the doctor to prepare to speak to patients in understandable language. Dumenci said CHLT-6 has invariant measurement properties between sex and race/ethnic groups and is externally validated. These features make CHLT-6 attractive for adoption in various cancer treatment settings—particularly oncology clinics and pharmacies. The study found that 18% of cancer patients have limited CHL, especially black, undereducated, and low-income patients. “Overall, the results supported the conclusion that the CHLT-30 accurately measures CHL along a continuum,” Dumenci said, “and that the CHLT-6 efficiently identifies patients with limited CHL with high accuracy.” “It is a very robust, psychometric study,” Ganz said. “I think is very important that they studied a large sample of patients representing different races to arrive at their conclusions.” “I find the methods they used in the study are very sound,” said Wenying Sylvia Chou, Ph.D., M.P.H., program director in the Health Communication and Informatics Research Branch of the Division of Cancer Control and Population Sciences at the National Cancer Institute. “I like that they treated
