Patient Misunderstanding in Other Diseases
Results of poor patient education in other diseases:
Studies of various diseases demonstrate that a patient’s perception of his or her disease directly affects his or her behavior with regard to the disease. Patient perceptions encompass all aspects of a disease, including etiology (it’s cause), pathophysiology (how the disease will progress and what is wrong), treatment, prognosis (the future), and overall effect on lifestyle. Several models of disease have been utilized as frameworks for the study of patient perceptions of disease, and a variety of diseases have been studied.
The definition of a disease is not just medical or scientific in nature; part of the definition is based upon social and historical factors, aspects that are patient-specific. All patients operate under the framework of their own models of illness, making decisions about behaviors and treatments based upon their self-constructed models. Perceptions and ideas regarding an illness, which have accumulated through experiences, are often biased by culture. This type of model is dynamic and patient-specific; it changes with experiences and culture. The importance of communicating ideas and perceptions under which a patient operates is in achieving optimal treatment outcomes and clear communication between a physician and a patient. Patient models should encompass all critical aspects of an illness including:
1) Etiology (the cause of a disease)
2) Disease onset as noted by signs and symptoms
3) Pathophysiology (change in the normal function) of the disease
4) Prognosis and course of the disease
5) Disease treatment and proposed outcome
The perception that a patient holds toward all five aspects of a disease, is the product of his or her experiences, learned knowledge, and interactions with other people. The importance of determining a patient’s model of illness lies in incorporating that model into the doctor-patient relationship, so as to ensure that the doctor understands where the patient’s perceptions lie in respect to the biomedical (physician) model of illness.
Studies have suggested that if it is established by a doctor that there is a difference between the perceptions that patients and physicians have of the same illness, physicians can adjust communications with and provide education to patients so as to ultimately improve patient compliance with prescribed treatments and therefore improve treatment outcomes by behavioral changes made by patients as a result of new knowledge.
A patients understanding of their disease is a vital component of disease management and numerous studies have been done in various disease to compare a patients understanding of their disease compared to medical model of that particular disease. In addition, a few studies have examined the perceptions of illness held by family members and physicians in addition to the perceptions held by patients. Other studies have even focused on comparisons between differences between patients and their spouses, comparisons between patients of different races, and comparisons between differences based on gender.
Many studies have examined patients perceptions of their illnesses or diseases and the most significant studies include:
Temporomandibular Joint (TMJ):
One study in 1994, examined illness models in 32 Caucasian women diagnosed with dysfunctions of the Temporomandibular Joint (the joint in your jaw). The focus of this study was to elicit patient models of illness where patients discussed the onset of their condition, its course, cures for the condition, and the effect that it had on their lives. Each patient gave a history of his or her illness in the form of an uninterrupted story. The study determined that there was a difference between the subjects in the study and the medical model of TMJ.
Congestive Heart Failure (CHF):
In a 2001 study, patients who had CHF were examined to determine their understanding of their disease compared to the medical model for CHF. In addition to examining patients understanding the study also examined the understanding of the patient’s family members of CHF. The study concluded there were major differences between both the patient and their doctor as well as between the family member and the doctor.
Chronic Pelvic Pain:
A 1991 study investigated Sixty-four females with complaints of chronic pelvic pain. The question regarding what patients call their illness is an important component because it provides additional insight into the meaning that patients give their illnesses. The study concluded that patients within the study had a limited understanding of their condition. Additionally, the study proposed that the patients understanding were inconsistent with the medical model. The study stated that there was a difference between the patient models and the medical model of Chronic Pelvic Pain.
Tuberculosis (TB) infection:
In 1997, a study of Sixty-five Latino immigrants were studied and questioned about the cause, expectations of treatment, and their fears regarding their Tuberculosis infection. An ideal standard framework for communication between physicians and their patients is for the physician to thoroughly discuss all aspects of a disease with their patients. The study concluded that a comprehensive approach to patient perceptions of illness is both necessary and ideal for the best treatment and disease outcomes. The study investigated the collective patient understanding of TB in a small minority group and determined that there were major differences between the group and the medical model of TB.
Rheumatoid Arthritis (RA):
A 1993 study, proposed to determine patient models of illness for Rheumatoid Arthritis (RA) for 59 patients diagnosed with RA. RA is a type of arthritis with an unconfirmed cause. RA is not as prevalent as OA and does not share the age-related component that is so prominent in OA. The study analyzed data obtained from interviews during which questions were asked. The study identified differences between the medical model and patient models.
Diabetes-Type II Non-Insulin-Dependent Diabetes Mellitus:
In 1991, a study of 19 low-income Mexican-American women diagnosed with Type II Non-Insulin-Dependent Diabetes Mellitus was completed. Results from the study determined that patient understanding of their disease was different from the medical model of NIDDM primarily because of distinct cultural differences between the patients and the physician. The study found alarming degrees of inconsistencies between the medical model of NIDDM and the patient models. Whereas physicians in the study focused on maintaining the patient’s blood glucose and weight within normal limits through diet, exercise, and the use of insulin, many of the patients identified taking their insulin as the sole means of managing their blood glucose levels, not recognizing the impact that diet, exercise, and weight loss could have on their health. In addition, the women in the study identified what they called “sugar Diabetes” as manifesting in amputations, loss of eyesight, and “being attached to the dialysis machine”. Patients in the study failed to associate symptoms such as blurred vision and frequent urination with NIDDM. Many patients reported that “eating too much sweet food from childhood on caused their NIDDM.
As previously mentioned, the name given by a patient to his or her illness is critical in defining his or her perception of the illness. Many of the patients in this study termed their disease “sugar in the blood”. The patients explained that table sugar in their blood was part of what caused their disease; a concept, which provides an explanation for their perceptions of life-long sugar accumulation in the blood secondary to the intake of sweet foods. This study demonstrated the extreme deviation from the medical model of illness, recognized by doctors and founded in science, that patient models can exhibit, as a result of educational, cultural, and social differences.
In another study of Diabetes, a 1994 study investigated 39 patients and their 15 health care providers. The study found a positive correlation between lowered lab values, indicating greater control of blood-glucose levels, and more consistencies between physician and patient models study concluded that greater similarities between patient and physician perceptions of Diabetes correlated with and resulted in greater compliance with prescribed treatments, and ultimately better control of blood-glucose levels. A comparison was then made between the models recognized by the patients and the health care providers. The use of physician models for comparison with patient perceptions provided results of differences between the patients understanding of the disease and the medical model for Diabetes.
Cardiovascular disease:
In 2001, a study examined 126 Black and White patients with cardiovascular disease where each patients understanding was compared with every other patient’s level of understanding in the group as opposed to just the physician. The study found differences amongst all the individuals in comparison to their physicians.
Hypertension:
Another study in 1988 examined a group of non-English speaking minorities to identify how the unique culture of these individuals affected their beliefs about Hypertension. The investigators collected interview data from 26 hypertensive residents of an Ojibway Indian community in
The name that a patient gives to his or her illness may be equally as important as the explanation that he or she gives for the cause of the illness. Many of the names given to medical conditions have their origin in the anatomical location of the specific disease. However, some names given to diseases are not anatomically associated and their meanings have proven confusing to patients. For example, names such as “Hypertension” may be misconstrued on behalf of duplicate meaning and interpretations assigned to each component of the word, providing greater purpose in the application of the explanatory model to physician-patient communications.
A 1982 study, looked at 117 patients diagnosed with Hypertension were questioned. When asked to describe what they meant by the name they had given for Hypertension-nearly 50% of patients responded to the effect that high amounts of tension or stress was what they had been diagnosed with, and that this of course was the cause of their health problems. The explanation given by patients in the study was quite different from the medical definition of Hypertension, which is given as “sustained elevation of the hemodynamic pressure in the systemic circulation of the body”.
In another study in 1993 of hypertensive African-American women, definitions inconsistent with the established medical model of Hypertension were also given by patients to their conditions, which they referred to separately as “High Blood,” and “High-pertension”. When the patients in the study were asked during individual interviews the cause of their disease, common explanations provided for the cause for “High Blood” were that it was a disease of the blood and heart that was associated with “excessively hot, thick, or rich blood that rises in the body to clog blood vessels, at which point the blood is said to be elevated”. Patients differentiated “High Blood” from “High-pertension”, defining the latter as a disease of the nerves, which is set off by intense emotion, at which point blood accelerates very rapidly up to the head. The significance of the findings of the study is that the definitions given by patients for their disease are not consistent with the medical model of Hypertension. This study, among others demonstrates the need for comprehensive patient education on their disease and to be very aware of the physician-patient communication.
A more poignant and specific example of the deviation of patient perceptions of their disease from the medical model is from one of the Hypertension studies that described in the case of a Chinese woman, whom was noncompliant with the medical management under which she was being treated. The Chinese woman had a rare and severe form of Hypertension that required surgery, and she had repeatedly refused the surgery, opting instead for traditional Chinese therapy. After finally being coaxed into the surgery by a Family Medicine resident, a conference was held to interview the woman and for her physicians to reflect upon the successes of the medicine and surgery that had finally stabilized her Hypertension. When the woman was questioned regarding the main components of her explanatory model for the first time, she responded that the cause of her “Hyper-Tension” was attributed to recurrent disagreements with her siblings and the high amounts of tension that had resulted, and that these things could not possibly be cured with any surgery. The success celebrated by her physicians was only a success according to the perceptions of her physicians. This case clearly demonstrates the need for clear physician-patient communication. This example of such a definitive deviation of a patient model of illness from a medical model of illness demonstrates inefficiency of physician-patient communication.
In a 1992 study, 21 black couples were examined for gender differences between patients and the medical model of Hypertension. Knowing which aspects of a disease for which there is likely the greatest chance of disagreement between patient and medical models for each gender may effectively guide patient education. One member of each couple had been diagnosed with Hypertension. The results showed similarities between models of the same gender and discrepancies between models of dissimilar gender. An important finding in this study was the difference in the meaning that men and women assigned to the word “diet.” The majority of men in the study defined a diet as simply a decrease in caloric intake or consumption, with no mention of the type of food that was consumed. Demonstrating a more educated view, the majority of women defined diet to mean the nutritional value of food, and the action of monitoring and selecting food on the basis of such values. Furthermore, women viewed dieting as a behavior to improve one’s overall health, rather than just to lose body weight. The study attributed this difference in models to traditional gender roles in the household, where women were more likely to be responsible for grocery shopping and meal preparation the majority of the time.
The discrepancies found in the study of gender differences and their relation to patient models of Hypertension demonstrates that patients consult their illness models for behavioral changes with regard to illness and treatments. Furthermore, it was reported in the study that behavioral decisions are formed by life experiences, roles, societal interactions, and routines, all of which are specific to the individual. The study suggested that people with similarities in their experiences and routines are likely to have illness models with common perceptions. Patients should recognize these commonalities among groups like their spouses and families to better equip themselves to recognize how their perceptions can be influenced and openly communicate with their doctors.
Depression:
In 2002, two studies were completed on patients understanding of depression. Though one study explored depression in the elderly and the other examined depression in post-partum women both studies found a variation between the patients understanding of depression and the medical model of depression recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) the medical authoritative manual for these types of disorders. Patients showed a tendency to emphasize various aspects of their illness that were, according to the medical model, of less importance or were less prevalent than were other aspects of the illness to which patients gave little mention.
Myocardial Infarctions (MI)-(heart attacks):
Behavioral changes were examined in a 1993 study conducted on events known as “heart attacks”. Sixteen subjects, eight of which had experienced an MI, and the other eight of which were the spouses of those whom had experienced an MI were asked how their lives had been since they or their spouse had experienced an MI. The study was successful in determining the number of subjects whom had modified their behavior since their MI. The study found that 100% of the subjects interviewed had modified their behavior in such a way that corresponded to what they had identified as the cause of their MI and provides evidence that patients’ behavioral decisions are based on their own individual understanding of their illness. Significantly, the study concluded that when a patient’s behavioral decisions are consistent with the established medical model of his or her illness, then the prognosis for that patient’s illness will likely be better treatment outcomes.
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