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ONCOLOGY. Vol. 23 No. 4
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YOUR OLDER PATIENT 

Health Literacy, Communication, and Treatment Decision-Making in Older Cancer Patients

By Sunil Amalraj, MD1, Chelsea Starkweather, MPH2, Christopher Nguyen, BS3, Arash Naeim, MD, PhD4 | April 13, 2009
1Fellow, UCLA Geriatric Oncology Training Program 2Research Assistant 3Medical Student 4Assistant Professor of Medicine, University of California, Los Angeles David Geffen School of Medicine, Division of Hematology-Oncology, Los Angeles, California

Older patients are often less assertive in communicating with physicians, less likely to ask questions, and less inclined to take a controlling role in their health-care decision-making.[51] Self-efficacy is a predictor of how the patient perceives and reacts to the encounter with the physician.[4] Studies in older breast cancer patients have shown that patients with higher self-efficacy are more likely to report that discussions with their physicians are helpful.[52]

Caregivers/Companions and Treatment Decisions in Older Cancer Patients The effect of family caregivers and companions on cancer treatment decisions is a frequently overlooked, yet significant influence. An estimated 20% to 50% of geriatric patients are accompanied by a family caregiver or companion during their routine medical visits.[53] Most cancer patients share their diagnosis and current condition with a family member or companion. These members of the patient’s “social support network” are often highly motivated to help the patient manage information related to their cancer treatment.[54] They play key roles in interpretations of medical diagnosis, offering explanations, and encouraging patients to comply with their treatment plan. Their level of health literacy and actions during the medical visit are critical to defining these roles. Patients with lower health literacy are likely to be more influenced by a caregiver or companion.[55] Specifically directed physician interactions with these individuals, including assessing their level of health literacy and providing them with appropriate written cancer information during the oncology visit, are important opportunities to optimize communication and medical decision-making.[56]

The consequences of companion behavior on patient autonomy and its impact on the decision-making process during the medical visit are important areas of investigation. Several studies have found definite benefits when a family member is present, such as an increase in the amount of medical information provided.[57] Other researchers have determined a negative, intrusive effect of a third party on patient autonomy during a medical visit.[58] A study of 93 patients and companions during geriatric primary care visits found more autonomy-enhancing behaviors (facilitating patient understanding, patient involvement, and doctor understanding) than autonomy-detracting behaviors (controlling the patient and building alliances with the physician). They also found that while nonspousal companions are not as active in decision-making, they are more likely to facilitate patient involvement in the visit than spouses.[53]

Degree of Shared Treatment Decision-Making in Older Cancer Ptients
The “shared decision model” has gained consensus as the preferred method of making treatment decisions, especially in the situation where many different therapeutic strategies are equivalent. Patient autonomy is prioritized and the physician’s obligation is to provide factual information and execute the patient’s selected intervention.[59,60] A systematic review of studies has shown variability in a older patient’s desire to actively participate in their cancer treatment.[61,62] One study looking specifically at an older individual’s participation in medication-related decision-making identified perceived lack of knowledge, low self-efficacy, and fear as the major impediments to shared decision-making.[63] Moreover, a very recent study demonstrated that statistical illiteracy (understanding the meaning of numbers) impeded both risk communication and shared decision-making, and that interventions directed at changing the way information is presented could be helpful.[64]

These findings suggest that the elderly patient may view their involvement in treatment decisions differently than younger patients who are more homogeneous in their preference of the shared decision-making model. A study of hospitalized patients with advanced cancer and a palliative treatment goal demonstrated that younger age and higher Karnofsky index were significantly associated with active involvement in making treatment decisions.[65] Furthermore, research in patients 70 years and older with a recent diagnosis of metastatic colorectal cancer found relatively few (44%) wanted information about expected survival when they made a treatment decision, and 52% preferred a passive role in the treatment decision-making process.[66]

For older patients with advanced cancer, preferences for prognostic information and for an active role in treatment decision-making are not easily predicted. Many factors including lower health literacy, socialized belief in the “traditional patient” role, and age bias among physicians who view older patients as passive participants can contribute to older patients assuming this passive role. Also, there may be a natural developmental tendency for older patients to want less responsibility for medical decisions and to rely on the expertise of others.[50] Explicit communication about decision-making preferences and the desire for specific facts such as prognostic information will help the oncologist distinguish which patients would benefit most from the shared decision-making model.[60, 67]

Assessment of Health Literacy and Communication

In the Institute of Medicine report, Health Literacy: A Prescription to End Confusion, health literacy is divided into health-related oral literacy and health-related print literacy.[1] Conceptualizing general health literacy in this way is useful in trying to understand the most efficient methods to identify deficiencies and formulate interventions. However the practicality of analyzing them separately is problematic. Both of these domains are tightly interwoven and each dependent on an individual’s overall cognitive ability to process health information and build new knowledge.

Comprehension of spoken health-related information is critically important to functioning in the health-care environment; however, there is currently no established standardized instrument for its discrete evaluation.[68] Further research is needed to determine whether the ability to understand medical spoken communication independently predicts patient knowledge, behavior, and health outcomes.

Health Literacy Instruments
Several health literacy tools based on reading comprehension are available. The most commonly used are the Rapid Estimate of Adult Literacy in Medicine (REALM), Wide Range Achievement Test-Revised (WRAT-R), and the Test of Functional Health Literacy in Adults (TOFHLA), as well as its recently developed short form (S-TOFHLA). The REALM and the WRAT-R are word recognition tests validated as instruments of reading ability and are highly correlated with other traditional reading assessments such as the Adult Basic Learning Examination (ABLE).[16] The TOFHLA measures written health literacy and consists of a reading comprehension section with reading passages in which every fifth to seventh word is deleted and a numeracy section that assesses an individual’s ability to read and understand numeric information used on actual hospital documents and labeled prescription bottles.[69]

Communication Analysis
The Roter Interaction Analysis System (RIAS) is the most widely used measure for assessing provider-patient communication during routine face-to-face consultations. The RIAS, which describes and categorizes communication behaviors from audio or videotape, is used to quantify communication events, that can then be correlated with patient, provider, and system characteristics and health outcomes.[70]

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