Health Literacy in Older Patient's Breast Cancer Treatment

Institution: University of California, Los Angeles
Investigator(s): Arash Naeim, M.D., Ph.D. -
Award Cycle: 2009 (Cycle 15) Grant #: 15IB-0088 Award: $180,890
Award Type: IDEA
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

Initial Award Abstract (2009)

Health literacy is the ability to process and comprehend medical information. Studies have shown that individuals with lower health literacy are less knowledgeable about the best way to care for themselves and use medical services. Patients with lower health literacy have more difficulty understanding and recalling complex medical information and experience communication difficulty. Moreover, they have less satisfying interaction with their providers since less information is being exchanged. Low literacy skills make older breast cancer patients vulnerable to medical intimidation and to being less active participants in the medical dialogue and the decision-making process with their physicians. Such factors as memory decline, language issues, and intergenerational barriers need to be considered in older patients. Moreover, older patients are often less confident in communicating with physicians, less likely to ask questions, and less inclined to take a controlling role in their healthcare decision-making. A patientís ability to actively engage in the decision making process may also be enhanced (or detracted) by a presence of a companion, which is a major factor to consider since roughly 50% of geriatric primary care patients are accompanied by a companion in the examination room during their medical visits.

This study will examine 75 older patients, age 65 and older, with breast cancer, who are being considered for a breast cancer clinical trial. The study will be performed across 25 community oncology sites that are part of the Translational Oncology Research International Network (TORI). Baseline surveys will capture patient characteristics (such as age, income, education), their overall self-reported health, and measure their health literacy. The clinical trial discussion with the oncologist will be audio-taped, transcribed, and analyzed using well established methods. The audiotape analysis will provide scores for (a) physicianís use of complex or dense language, (b) how much information was conveyed and how clearly, (c) the emotional state of the oncologist and patient. Patients will also be surveyed after the discussion with the physician to examine one of three outcomes: (1) how confident they were in their ability to communicate with their oncologist, (2) if they could identify the risks and benefits of participating in the clinical trial, and (3) if they were able to comprehend the informed consent sheet associated with the clinical trial. Our analysis will look for relationships between health literacy scores and patient-physician communication with our outcomes. We will also examine the effect of the presence of a companion.

The results of this research may expand into interventions and policy recommendations regarding: simplifying clinical trial informed consent forms for older patients; working with care providers to decrease the use of complex medical jargon in their discussion with patients; and encouraging and providing tools for patient companions to provide support to their family members and friends with cancer. Overall, improving strategies to empower older breast cancer patients to share in decision-making and participate in clinical trials is critical to maintaining high quality evidenced-based care.

Final Report (2011)

Overview: Health literacy is the ability to process and comprehend medical information. Studies have shown that individuals with lower health literacy are less knowledgeable about the best way to care for themselves and use medical services. An individual patientís health literacy may influence patient confidence in communicating with their physicians (self-efficacy), their ability to participate in the decision-making process, and the extent of their comprehension of the risks and benefits (informed consent) for breast cancer studies.

The initial tasks of the projects have been completed but there have been many obstacles and barriers in accruing patients to this study. The main barriers to the accrual of patients included:

  1. A complete re-organization of the clinical research unit that oversees the community oncology practices,
  2. The implementation of an electronic clinical trials management system (CTMS), which significantly limited the available time of site coordinators to focus on this study,
  3. The fluctuation of breast cancer clinical trials open in the network, as this is initially a piggyback study on therapeutic trials.

These barriers have been overcome over the course of the past 12months by expanding the study to the consent of an breast cancer related study (prevention or treatment) and expansion of the study to the Athena Breast Network.

With the above modification, the focus of this study shifted to consent and comprehension related to participation in a screening breast cancer registry with biospecimen collection, and also included a new survey component. We completed accrual of 78 patients to the health literacy and comprehension portion of this study and accrual of 451 individuals to a survey of concerns and motivations to provide a biospecimen to a registry.

As a result of the preliminary results in this pilot, it is our plan to continue this line of research in a county or under-served population. The population for this pilot, although diverse racially and ethnically, still represents a higher socioeconomic and educated population. This is reflected in the higher health literacy and overall comprehension. This study will be extended into an Olive View and Mid-Valley county population, where there should be more variability with health literacy and comprehension of consents, as well as a more diverse viewpoint on the motivations to participate in a breast cancer screening registry that includes providing a sample of blood or saliva.