Patients with heart failure (HF) face many challenges to maintaining health and avoiding frequent hospitalizations. They must follow complex medical regimens, incorporate stringent modifications in their diet, monitor their condition and avoid complications by noting changes in symptoms and daily weight, and learn how and when to communicate with their physicians. Therefore, patient education about aspects of HF self-care is consistently listed as a high priority in clinical guidelines1,2; however, little is known about what patients with chronic HF know about their condition.
Physicians and other members of the healthcare team spend a significant amount of time in each clinical encounter educating patients and their family members about the requirements of self-care to prevent HF exacerbations and rehospitalizations. Although insufficient for ensuring appropriate adherence,3,4 knowledge is a minimum requirement for the behavior changes and self-care strategies required to avoid the high mortality and the frequent rehospitalizations for worsening HF documented in this patient population.5,6
Patients living in rural areas have particular challenges when diagnosed with HF. They often have limited economic resources,7,8 lower levels of education and health literacy,9,10 and limited access to specialists and multidisciplinary disease management programs11 compared with those who live in metropolitan areas. When hospitalized for HF, they are less likely to have early physician follow-up (within 7 days of hospital discharge).11 These factors underscore the importance of assessing the knowledge of rural patients with HF about their condition, the symptoms that signify deterioration, and the appropriate time to seek medical care to prevent unnecessary rehospitalizations. It is likewise important that physicians and other healthcare practitioners know the areas of the most common misunderstandings in this population. To date, the knowledge level of this population of patients with HF has not been studied. Therefore, we conducted a study to assess the level of HF knowledge in patients living in rural areas and to identify demographic and clinical characteristics associated with low levels of HF knowledge.
Study Design and Sample
This study was part of a randomized clinical trial, the Rural Education to Improve Outcomes in Heart Failure, that was designed to test an education and counseling intervention to improve self-care in patients with HF who live in rural areas. Six hundred twelve patients with HF living in California, Kentucky, or Nevada were recruited, and the data reported here were collected at baseline before randomization. Institutional review board approval was obtained at each site, and all patients gave informed written consent to participate. Rural areas were defined as towns with a population of fewer than 2,500 people, living in open country, or a metropolitan center with a population of fewer than 50,000 people.12 The methods used in the parent study have been described elsewhere.13 Briefly, the inclusion criteria were 18 years or older with stable HF, hospitalized for HF within the last 6 months, able to read and write in English, and living independently with primary decision-making ability (ie, not institutionalized). Patients were excluded if they had a complicating serious comorbidity (disease or illness predicted to cause death within the next 12 months), required dialysis, had a psychiatric illness or untreated malignancy, had a neurological disorder that impaired cognition, or were concurrently participating in an HF disease management program. Patients who met the eligibility criteria were screened using the Mini-Cog, which is a global measure of mental status.14 Patients with a word recall score of 0 or a word recall of 2 or lower with an abnormal clock drawing were excluded from participation.
Demographic information (ie, age, gender, race/ethnicity, education, and income) was collected through a simple self-administered form. Information pertaining to the patients’ medical history and physician specialty (ie, cardiologist vs noncardiologist) was collected by medical chart review by trained study personnel. Comorbidities were assessed using the Charlson Comorbidity Index.15 Knowledge about HF was assessed using a 20-item scale developed by the investigators called the Heart Failure Knowledge Scale (HFKS). Content validity was established by a panel of cardiac specialists (ie, 4 physicians and nurses), and predictive validity was established in a previous study.16 The internal consistency measured by Cronbach’s α was 0.83 in this sample. The 20 items consisted of 3 true-false items about the nature of HF, 3 multiple-choice questions about self-management practices, and a list of 14 potential symptoms of HF (Appendix A). Anxiety was measured using the 6-item subscale of the Basic Symptom Inventory, a subscale of 6 items that has been used extensively in clinical populations to assess anxiety symptoms during the past 2 weeks.17 The Cronbach’s α in this sample was 0.89. Finally, health literacy was measured using the Short Test of Functional Health Literacy in Adults (S-TOFHLA), which is a 36-item, 7-minute timed test of reading comprehension. It measures the ability to read and understand actual health-related passages using sections on preparing for an x-ray test and a Medicaid application. The S-TOFHLA uses the Cloze procedure, in which a word in a sentence is omitted and must be chosen from a multiple-choice list. The S-TOFHLA has good internal consistency (Cronbach’s α = 0.98) and demonstrated concurrent validity compared with the long version18 (r = 0.91).
Data were analyzed using the Statistical Package for the Social Sciences for Windows (version 18.0, Statistical Package for the Social Sciences, Inc, Chicago, Illinois). Descriptive statistics were used to characterize the sample and the individual responses to the items on the HFKS. Variables showing marginal association with HF knowledge in univariate analyses with α set at less than 0.25 or those with theoretical interest (eg, education, marital status, and anxiety) were forwarded to the regression analysis. Multiple linear regression with forced entry of all the variables in a single step was used to explore the contribution of various sociodemographic and clinical variables to levels of HF knowledge, with 2-sided significance set at 0.05.
The 612 patients with HF who enrolled in this study had a mean (SD) age of 66 (13.0) years, and slightly less than half were women (41.3%). Sixty-five percent had combined household incomes of less than $40,000 per year. The mean (SD) ejection fraction (EF) was 39.7% (15.4%), and a large majority of the patients were classified as New York Heart Association (NYHA) functional class II or III (n = 519, 85.4%). The mean (SD) score on the S-TOFHLA was 70.9 (24.6), with a range from 2.8 to 100. The demographic and clinical characteristics of the patients are summarized in Table 1.
The patients scored a mean (SD) of 69.5% (13.0%) correct on the HFKS, with the range of scores from 25% to 100% correct. The distribution of scores was normal, with a median score of 70% correct. Of the 612 patients, all of whom had been hospitalized for HF in the past year, 45% scored less than 70% correct. An item analysis of the HFKS revealed that a significant minority of the patients were confused about what symptoms to expect if their HF worsened. Some symptoms of worsening HF (eg, fatigue, shortness of breath, and edema of the extremities) were known by more than 90% of the patients, whereas other symptoms (eg, ascites or abdominal swelling, needing extra pillows to sleep, and weight gain) were not identified as symptoms by a significant percentage of patients (52%, 41%, and 22%, respectively). Moreover, many symptoms that are not related to worsening HF such as neck pain or slurred speech were incorrectly identified as HF symptoms. Although 91% of the patients could correctly identify why it was important to keep a daily diary of weight and symptoms, almost one-third (30%) believed that patients with HF needed to weigh themselves only once a week, and an almost identical number (31%) did not identify hypervolemia (described as “too much fluid”) as the cause of increasing HF symptoms. Knowledge about HF, its symptoms, and self-care behaviors is summarized in Table 2.
The following were assessed for their potential impact on HF knowledge: age, gender, EF, education, ethnicity, marital status, anxiety, NYHA class, and medical specialty of the provider (cardiologist versus noncardiologist). Analysis was conducted on the 602 patients with complete data on the variables of interest. The first regression model included health literacy but is not reported here because there were 26 missing values and the model was not significantly different when health literacy was omitted. Only the first 3 factors were significant in the final regression model (Table 3). On average, the women and the younger patients had better knowledge about HF and self-care practices than did the men and the older patients (P = 0.002 and 0.011, respectively). The patients with EF of less than 40% scored higher on the HFKS than those with EF of 40% or greater (P = 0.031).
Although knowledge about HF does not ensure adherence to the many behaviors required of patients with this challenging diagnosis,4 it is necessary if patients are to engage in self-care and follow the complicated medical regimen required to prevent exacerbations. Previous investigators have linked frequent rehospitalizations for HF and increased mortality with older age, limited education, lower income, comorbidities, English as a second language, and poor mental health status (eg, anxiety).5,6,19,20 We explored the demographic and clinical characteristics identified in previous studies as predictive of HF rehospitalization and mortality to determine whether these same predictors were related to HF knowledge in a rural population. This study is 1 of the first to assess the accuracy of HF knowledge in patients with a recent hospitalization for HF and the first conducted in a rural population in the United States.
We found that age, gender, and type of HF (systolic versus preserved systolic function) were associated with knowledge level. The latter was an unexpected finding and may reflect the lack of clear clinical guidelines for patients with HF with preserved systolic function. Although the contribution of these 3 variables to the level of HF knowledge was relatively modest, the findings help identify those who might benefit from additional counseling time and from using strategies to reinforce learning such as repetition and teach-back techniques, in which patients are asked to repeat the information they were taught. The teach-back technique seems to be effective in improving patients’ understanding about a chronic illness21 and about HF.22
Many of the variables previously identified as associated with HF rehospitalization such as education, income, ethnicity, health literacy, anxiety, NYHA class, and specialty of care provider (cardiologist versus noncardiologist) were not related to the HF knowledge level in the patients who participated in the current study. The lack of association between HF knowledge and many of the patient and provider characteristics that might be presumed to predict learning difficulty was an unexpected finding. In particular, health literacy has been documented to be related to learning in numerous clinical studies.19 It may be that the rural population in this study did not provide the same variability as in other studies of patients with HF. For example, one-third of our sample made a combined household annual income of less $20,000 year, and two-thirds made less than $40,000.
Our findings that patients demonstrated poor knowledge of the nature and the causes of HF and its worsening trajectory are similar to those of a study conducted more than a decade ago,23 suggesting that recent attempts to increase patients’ level of knowledge as a precursor to improving self-care behavior and avoiding rehospitalizations remain a significant challenge. Areas of patient education that may require special emphasis to increase patient knowledge about how best to avoid HF rehospitalizations are the symptoms of worsening HF and the self-care behaviors related to monitoring fluid status. Our findings that one-third of the patients thought that weighing themselves once a week was sufficient to assess fluid status and that a similar number did not understand the role of increased intravascular volume as the cause of HF exacerbations point to the importance of a careful assessment of what patients believe about self-care practices and underscore the need to review the relationship between fluid status and HF symptoms during clinical visits.
Our study may shed light on recent analyses that have identified significant geographic disparities related to HF rehospitalization rates across the country, with significantly higher percentages seen in the lower Mississippi River Valley and the Ohio River Valley, including the Appalachian region.24 The analysis was based on the claims data of Medicare beneficiaries and therefore included only individuals older than 65 years and did not include an analysis of rural and urban areas. However, it may be that the findings of higher rehospitalization rates in these areas may reflect the rural nature of the communities. The investigators suggest that geographic differences can be used to tailor prevention and treatment policies and programs to the needs of communities, a recommendation that we would support on the basis of our findings.
Several study limitations must be acknowledged. First, the cross-sectional nature of the design did not allow us to explore causal relationships. For example, it is not clear why patients with different types of HF (ie, systolic HF vs HF with preserved systolic function) would have significantly different levels of knowledge. Second, our findings can be applied only to similar populations living in rural areas. The knowledge level of patients living in urban areas and participating in multidisciplinary disease management programs may be quite different than that seen in the current study. In addition, our population was predominately white, and it is not clear whether the findings would have been different in a more ethnically diverse population. Third, the fact that we do not have information about members of the patients’ households and their knowledge of HF serves as an additional limitation. Patients’ knowledge about their HF condition can be influenced by the knowledge of family members and caregivers,22 but we did not collect data from these individuals. We also do not know about the patients’ experiences with discharge teaching when they were hospitalized.
In conclusion, educating patients with HF is a process that is important, challenging, and complex. The symptoms of HF must be correctly interpreted and recognized by patients so that they can take appropriate action (eg, increase a diuretic dose) and contact their physicians appropriately. This challenge is even more important for rural patients who live in geographic settings distant from medical services.
Our findings suggest that many patients are confused about which changes reflect worsening HF. A significant minority do not appreciate the importance of monitoring fluid status by weighing themselves each day. Helping patients, particularly older men and patients with preserved systolic function, sort out the subtleties of their symptoms requires careful attention to what they say about their past experiences and the expectations they hold for the future. Assessing patients’ knowledge about HF and self-care behaviors continues to be an important strategy to reduce rehospitalization and improve clinical outcomes.
What’s New and Important
- Patients with HF are primarily confused about the specific signs and symptoms that reflect worsening HF.
- A significant minority do not appreciate the importance of monitoring fluid status by weighing themselves each day.
- Patients with low knowledge levels about HF are most likely to be older, to be men, and to have preserved systolic function.
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Appendix A. Heart Failure Knowledge Scale