Westernized countries are facing an epidemic of chronic diseases such as heart disease and diabetes, in part due to lifestyle (Zimmet et al. 2001). Collectively, along with cancer, thrombotic diseases have the highest mortality rate of any disease in westernized societies (Kromhout 2007; Marmot and Mustard 1994). Many of these thrombotic diseases can be managed successfully through diet, lifestyle changes and medication. However, to manage diet, lifestyle, and medication, both the patient and the doctor must understand the status of the disease. Is it progressing or stable? Are more aggressive steps needed to manage it? Answering and acting on these vital questions requires a patient to absorb key information as thoroughly as possible. There is evidence that for many chronic disease sufferers, this is not happening. For example, a large representative survey of diabetics in New York that assessed knowledge of two key health indicators, the HBA1c and cholesterol levels1, found that 89% did not know their HBA1c levels, and that 78% did not know their cholesterol levels (Thorpe et al. 2003).
Patient compliance is often problematic in managing thrombotic diseases and other chronic conditions. Health literacy is a significant predictor of compliance behaviour; conversely, lack of literacy is a major impediment to compliance. For example, among patients with Type 2 diabetes, low health literacy has been shown to be closely associated with retinoplasty and other serious complications due to poor glycemic control (Schillinger et al. 2002), particularly in disadvantaged populations, which tend to be less literate and are therefore less likely to understand specialized medical terminology commonly used in reports (Schillinger et al. 2002).
Ensuring that patients understand the status of their condition and treatment requirements is obviously necessary; indeed, a recent study of patient compliance with discharge instructions found that patient comprehension was the only factor significantly related to compliance (Clarke et al. 2005). Vermeire et al.’s study of patients with diabetes similarly concluded that ‘the health beliefs, the quality of doctor/patient communication, and the quality of the information patients receive are important factors for patient adherence to treatment’ (Vermeire et al. 2003a p.209). A three-decade, comprehensive review of patient adherence, also by Vermeire et al., determined that information-based approaches influence the behaviour of people who have a chronic condition, particularly when the communication recognizes patient-specific information needs (Vermeire et al. 2001).
There is extensive literature on topics related to patient use and comprehension of medical information. For example, better informed patients have (a) more interaction with physicians during consultation (Heisler et al. 2002), (b) greater engagement with the treatment, stronger intentions to maintain a treatment regime (Marshall and Maiman 1980), and (c) greater trust in the physician (Goff et al. 2007).
Unfortunately, the design of most pathology reports, such as in Figure 1 which shows a typical pathology report, are limited in their usefulness because of their design. They are primarily a record of test results for the laboratory and the treating physician. Due to this technical emphasis, they are often incomprehensible to the patient, and are sometimes even confusing to physicians (Powsner et al. 2000). Interpretation difficulties are believed to underlie many cases of misdiagnosis and are a major impediment to better communication between patients and physicians (Raab et al. 2005; Troxel 2004). As a result, many patients are effectively deprived of key information about their condition because the information is inaccessible.
Therefore, making comprehensible patient-specific information available to patients plays a key role in helping them to manage their disease. The main potential problem in the use of reports such as shown in Figure 1 is that although it is factually correct, it does not necessarily provide the information in a manner that motivates patient understanding, and hence compliance. At present, very little research has been done about how to prepare information that will address the needs of medical consumers. The model we intend to develop addresses these patient-specific information needs in pathology test results.
Figure 1: A typical pathology report
1. The HBA1c pathology test reveals average blood sugar levels for the previous 90 days. Diabetes patients should take this test two to four times per year because it is an essential test for gauging how well the disease is being managed in the medium term. Awareness of cholesterol levels is important because diabetics tend to have elevated levels of low-density lipoprotein (usually labelled “bad cholesterol”).