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Heart failure patient learning needs after hospital discharge
Heart Failure Patient Learning Needs After Hospital Discharge Judith C. Clark and Virginia M. Lan
This descriptive-correlational study examined the perceived learning needs of heart failure patients in postdischarge settings, as well as the influence of demographic variables on these learning needs. The Outpatient Heart Failure Learning Needs Inventory was used to rate subjects’ perceptions of the importance of educational topics on a five-point Likert scale. Findings indicated that subjects perceived signs and symptoms and medications as most important to learn and diet, activity, and psychological factors as least important to learn. These findings are consistent with previous research and provide a framework on which to base the development of educational programs for patients with heart failure. A significant finding was that nearly 25% of screened patients were unable to participate because they were unaware that they had been diagnosed with heart failure. © 2004 Elsevier Inc. All rights reserved.
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EART FAILURE (HF) is a significant cause of morbidity and mortality in the United States and imposes a tremendous financial burden on the health care system. Nearly five million Americans had been diagnosed with HF by 1996, and a prevalence of 10 million cases is predicted by 2007 (O’Connell, 2000). Hospital admissions for HF increased from 377,000 in 1979 to 870,000 by 1996, with annual US expenditures approaching $18 billion (Artinian, Magnan, Sloan, & Lange, 2002; O’Connell, 2000). The burden of HF extends beyond the financial realm. Quality of life often deteriorates after diagnosis, and the prognosis is generally poor. Six-year mortality rates as high as 84% for men and 77% for women have been reported (O’Connell, 2000). The problem of HF is expected to worsen. Rising incidence and prevalence of HF is caused by reduced mortality after acute myocardial infarction, improved treatment of hypertension and diabetes, and the increasing longevity of our population (O’Connell, 2000). A marked rise in the incidence of HF is seen after age 65, and as life expectancy
Judith C. Clark, MSN, RN, Family Nurse Practitioner Student, Medical College of Ohio, Toledo, OH; Virginia M. Lan, PhD, RN, Associate Professor, Department of Nursing, Eastern Michigan University, Ypsilanti, MI. Address reprint requests to Judith C. Clark, MSN, RN, Eastern Michigan University, 311 Marshall Building, Yspilanti, MI 48197. E-mail: [email protected] © 2004 Elsevier Inc. All rights reserved. 0897-1897/04/1703-0003$30.00/0 doi:10.1016/j.apnr.2004.06.009 150
continues to improve, the problem of HF will likely intensify (O’Connell, 2000). Noncompliance on the part of HF patients has been shown to directly contribute to hospital readmission (Miura et al., 2001; Vinson, Rich, Sperry, Shah, & McNamara, 1990). The ability to engage in effective self-care is accepted as paramount in preventing hospital readmission and improving the quality of life for patients with HF. Improved compliance with the prescribed treatment regimen and subsequent reduction in hospital readmission may be achieved through comprehensive educational programs. Multidisciplinary postdischarge HF clinic, home visit, and telemanagement programs that include extensive educational components have shown significant reductions in HF patient readmission rates (Akosah, Schaper, Havlik, Barnhart, & Devine, 2002; Draus, Walblay, & Barraco, 2002; Kasper et al., 2002). Compliance may be enhanced if patients believe that ordered treatments are needed, safe, and effective, and if they perceive that adequate support is received from their health care provider, with a relationship that is based on trust and respect (Johnson, Williams, & Marshall, 1999; Stromberg, Brostrom, Dahlstrom, & Fridlund, 1999). Additionally, Leenerts et al. (2002) maintain that clinicians should form a partnership with patients in the development of self-care educational programs that focus on patient perceptions, experiences, and beliefs. Therefore, it is possible that achievement of decreased hospital readmission rates and optimal quality of life for HF patients through im-
Applied Nursing Research, Vol. 17, No. 3 ( August), 2004: pp 150-157
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proved compliance could be facilitated by attentiveness on the part of health care professionals to learning needs as perceived by the patients. STUDY PURPOSE
Previous HF learning needs studies addressed the perceptions of patients within the hospital setting. Patient self-care actions after hospital discharge will ultimately determine readmission and quality of life outcomes, and for this reason, the purpose of this study was to determine learning needs as perceived by HF patients after hospital discharge. Patients were studied within home care and outpatient HF clinic settings.
Patient self-care actions after hospital discharge will ultimately determine readmission and quality of life outcomes, and for this reason, the purpose of this study was to determine learning needs as perceived by HF patients after hospital discharge.
Literature Review Previous research relevant to this study falls into three major categories: compliance issues, learning needs perceptions, and the effect of demographic variables (age, gender and educational level) on compliance and learning. Noncompliance with the ordered treatment plan has been shown as a significant problem for persons with HF. Ni et al. (1999) found that only 40% of studied HF patients reported that they consistently followed a low sodium diet, and only 58% weighed themselves daily even though they also reported understanding the importance of these actions. Neily et al. (2002) found that 86% of HF patients were unaware of the need for a reduced sodium diet. Research by Carlson et al. (2001) revealed that 60% and 56% of studied patients, respectively, did not recognize sudden weight gain and ankle edema as symptoms of worsening HF. HF patients have been shown to have high hospital readmission rates. The frequently cited study by Vinson et al. (1990) reported a HF patient sample readmission rate of 47% within 90 days of
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initial discharge. Krumholz et al. (1997) found that 44% of studied HF patients were readmitted within 6 months of initial discharge. Olsen and Coleman (2001) reported that 49% of studied cardiac readmissions were caused by HF and atrial fibrillation. Noncompliance has been consistently shown as a contributing factor to HF readmissions (Miura et al., 2001; Vinson et al., 1990). Learning needs research originally focused on the general cardiac population. In 1984, Gerard and Peterson studied the learning needs of a coronary care unit patient sample. The instrument that they developed for this study, the Cardiac Patient Learning Needs Inventory (CPLNI), measured patients’ perceptions of the importance of educational content (Gerard & Peterson, 1984). Subsequent research that also focused on patient perception of learning needs and used modified versions of the CPLNI targeted various cardiac populations, including post–myocardial infarction patients, and patients with angina and coronary artery disease (Chan, 1990; Czar & Engler, 1997; Karlik & Yarcheski, 1987; Karlik, Yarcheski, Braun, & Wu, 1990; Wingate, 1990). Three of these studies compared learning needs perceptions of both patients and nurses and found discrepancy between the opinions of the two groups. Patients perceived both activity and medications as less important than the nurses (Gerard & Peterson, 1984; Karlik & Yarcheski, 1987; Karlik et al., 1990). Research that specifically focused on the perceived learning needs of HF patients was published in 1994 by Hagenoff et al. They developed the Congestive Heart Failure Patient Learning Needs Inventory (CHFPLNI), a modification of the CPLNI, that specifically addressed the needs and concerns of HF patients. Two HF patient studies have since replicated this research using modified versions of the CHFPLNI (Frattini, Lindsay, Kerr, & Park, 1998; Wehby & Brenner, 1999). Wehby and Brenner’s (1999) modification of the CHFPLNI, the Heart Failure Learning Needs Inventory (HFLNI), reflected the Agency for Health Care Policy and Research guidelines for HF education published in 1994. All three of these studies also showed discrepancy between HF patient and nurse perceptions of the importance of various educational topic areas. Subjects studied by Frattini et al. (1998) and Hagenoff et al. (1994) rated all educational topics except diet and activity as
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more important to learn than the nurses. Wehby and Brenner’s research (1999) also revealed a lower patient than nurse rating of dietary content. In general, patients had more confidence than the nurses that the educational topics were realistic for them to learn (Wehby & Brenner, 1999). The studies by Wehby and Brenner (1999) and by Hagenoff et al. (1994) also showed that patients believed they could realistically learn most of the educational content that they also perceived to be of greatest importance. Research evidence supports the possibility that HF patient learning styles and needs may vary according to age, educational level, and gender. Older patients may be more likely to keep medical appointments than younger patients but may also have lower overall knowledge of the HF disease process (Artinian, Magnan, Christian, & Lange, 2002; Artinian, Magnan, Sloan, & Lange, 2002). Patients with higher levels of education may be more likely to comply with the treatment plan and to engage in self care (Rockwell & Riegel, 2001; Saounatsou et al., 2001). Although gender differences in HF patients did not seem to pertain directly to education, men were more likely than women to report perception of a higher quality of life, although womens’ perceptions did improve after a cardiopulmonary rehabilitation program (McEntee & Badenhop, 2000; Reidinger et al., 2001). This could influence motivation and willingness to learn.
Research evidence supports the possibility that HF patient learning styles and needs may vary according to age, educational level, and gender.
Previous studies targeting general cardiac patient populations found that patient perceptions of both the importance of educational content, and how realistic that content is to learn, may vary with the studied setting (Chan, 1990; Karlik et al., 1990; Wingate, 1990). This suggests that educational program needs may change with the patient’s environment. Before this study, this aspect of learning needs had not been explored in the HF patient population because the previous HF learning needs
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studies had all targeted inpatient populations. Therefore, the investigators of this study attempted to answer the following questions: (a) Which educational topics do HF patients in outpatient settings perceive as most important to learn? (b) Is there a difference in the perceived importance of educational topics according to gender? (c) Is there a relationship between education level and the educational topics? and (d) Is there a relationship between age and the educational topics? METHODOLOGY
Setting and Sample This study used a descriptive-correlational design with a convenience sample and partially replicated previous HF learning needs research. The target population was persons admitted with HF to either the home health care agency or the outpatient HF clinic program of one hospital system serving a small-town, rural community.
This study used a descriptive-correlational design with a convenience sample and partially replicated previous HF learning needs research.
Potential subjects were initially screened by the nurse practitioner that coordinated the HF clinic program or by the home health agency admission nurse. Subjects who met the following inclusion criteria were invited to participate in the study: (a) subjects were at least 18 years of age and had shown awareness that they had been diagnosed with HF, (2) subjects were able to read and write or were willing to have the questionnaire read to them and responses recorded by the investigator, (3) subjects provided informed consent, and (4) subjects had not been diagnosed with cognitive dysfunction. A total of 53 patients were screened over a period of 6 months during 2001. Thirteen patients were ineligible because they were unaware that they had been diagnosed with HF, and two were excluded because of cognitive deficits. Of the 38 patients that were eligible for inclusion, 33 (87%) agreed to participate in the study.
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Demographics
Procedure
Of the 33 subjects who participated in the study, 16 (48.5%) were men and 17 (51.5%) were women. Ages ranged from 49 to 92 years; the mean age was 75.7 years (SD ⫽ 10.56). The educational level of the subjects ranged from eighth grade to four-year college graduate; the mean years of education was 13 (SD ⫽ 2.17). About 61% had completed high school and beyond. There were 22 subjects from the homecare setting and 11 from the HF clinic setting.
Approval was received from the appropriate institutional review boards before the initiation of data collection. Participating home care subjects agreed to a home visit conducted by the principal investigator for the purpose of data collection. Subjects were given the option of completing the questionnaire with or without assistance. All 22 home care subjects chose to have the investigator read the instrument and record responses. In the outpatient HF clinic setting, subjects agreed to meet with the principal investigator for the purpose of completing the questionnaire after their regularly scheduled appointment with the clinic nurse practitioner. These subjects were also given the option of completing the instrument with or without assistance, and all 11 subjects also chose to have the investigator read the instrument to them and record their responses.
Instrumentation The Outpatient Heart Failure Learning Needs Inventory (OHFLNI) was developed for this study and was used as the data collection instrument. The OHFLNI is a direct modification of Wehby and Brenner’s (1999) HFLNI. Two items that were specific to inpatients were deleted and six items were modified to reflect the needs of an outpatient sample. All other items are original to the HFLNI. The OHFLNI contains 46 closedresponse items and 1 open-ended question covering 8 educational topic areas as recommended by the Agency for Health Care Policy and Research (1994) for HF patient education: prognosis, diet, activity, medications, signs and symptoms, risk factors, psychological factors (stress, support systems, emotional response to illness), and general HF information. Subjects were asked to rate each item from not important to very important on a five-point Likert scale. Permission to use and modify instrumentation was obtained from Gerard and Peterson (1984), Hagenoff et al. (1994), and Wehby and Brenner (1999). The overall alpha correlation coefficient of the OHFLNI for this study was 0.86 (N ⫽ 33). Subscale correlation coefficients for each category was 0.96 for medications, 0.91 for diet, 0.86 for activity, 0.85 for signs and symptoms, 0.82 for risk factors, 0.78 for prognosis, 0.71 for general HF information, and 0.65 for psychological factors. The OHFLNI was evaluated by a panel of experts and was found to have face and content validity for HF patients in outpatient settings. The panel of experts included one nurse practitioner specializing in HF, three home care nurses, and four coronary care unit nurses.
RESULTS
Research Question 1: Which Educational Topics Do HF Patients Perceive as Most Important to Learn? To answer this question, the mean for each of the educational topics was computed and ranked from highest to lowest (Table 1). Signs and symptoms was ranked the most important topic to learn followed by medications, prognosis, risk factors, general HF information, diet, activity, and psychological factors. The range of means was from 4.36 (signs and symptoms) to 3.63 (psychological factors). Although psychological factors was ranked last, the mean of 3.63 is higher than the midpoint on the scale and approaches moderately important. Research Question 2: Is There a Difference in the Perceived Importance of the Educational Topics According to Gender? By rank ordering the educational topics according to gender (Table 1), both groups identified signs and symptoms as the most important topic to learn. Medications, risk factors, and prognosis were the second, third, and fourth most important topics to learn among men. For women, prognosis was second most important, followed by medications and risk factors. For
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Table 1. Rank Order of Perceived Degree of Importance by Educational Topic Whole Sample (n ⫽ 33)
Male (n ⫽ 16)
Female (n ⫽ 17)
Topic
Rank
M (SD)
Rank
M (SD)
Rank
M (SD)
Signs and symptoms Medications Prognosis Risk Factors General Diet Activity Psychological
1 2 3 4 5 6 7 7
4.36 (0.73) 4.13 (1.02) 4.11 (0.78) 4.08 (0.91) 3.87 (0.70) 3.83 (0.93) 3.63 (0.90) 3.63 (0.80)
1 2 4 3 5 6 7 8
4.34 (0.77) 4.24 (0.90) 4.14 (0.82) 4.23 (0.71) 3.85 (0.68) 3.79 (0.92) 3.64 (1.05) 3.58 (0.81)
1 3 2 4 5 6 8 7
4.38 (0.71) 4.04 (1.14) 4.08 (0.77) 3.94 (1.06) 3.90 (0.74) 3.87 (0.97) 3.62 (0.77) 3.67 (0.82)
both groups, diet and activity were ranked fifth and sixth. The least important topics to learn among both men and women were activity and psychological topics. However, by using oneway analysis of variance, no difference was found between male and female subjects’ perceived importance of the educational topics. Research Questions 3 and 4: Is There a Relationship Between the Age or the Education Level of the Subjects and the Educational Topics? Spearman’s rho coefficients were obtained to determine if there was a relationship between the educational topics and the age, as well as educational topics and the educational level of the subjects. There were no significant correlations found among these variables. There was an inverse relationship between age and educational level. The older subjects had less years of education, but the size of the correlation was small. DISCUSSION
HF Diagnosis Awareness The process of screening HF patients for possible inclusion in this study revealed one of the most significant findings. Of the 53 patients screened, 13 (24.5%) were unable to participate because they were not aware that they had been diagnosed with HF. This has serious implications for the educational process because patients cannot be expected to engage in effective learning regarding a health condition that they do not even know they have. The reasons for HF patient lack of awareness of diagnosis are likely varied and complex. The term used for the disease itself may contribute to this problem. Health care providers may perceive the term heart “failure” as too frightening for patients
to hear and may be reluctant to use precise terminology. The health care provider may also be influenced by perceived time constraints, believing that an explanation limited to the etiology of the HF, such as “heart trouble,” “heart disease,” or “heart attack” would take less time than a discussion of the implications of a failing heart. In some cases, patients and families may have received an accurate explanation of the diagnosis but may experience some level of denial about a disease that they perceive as frightening or terminal. This could occur if the explanation was not adequately detailed or was not followed by information that the patient could use to take control over the disease process. Regardless of the reasons behind patient and family lack of awareness of diagnosis, it should be recognized that this is not an acceptable standard. The patient’s right to selfdetermination necessitates that a complete and accurate explanation of HF is provided. From an ethical and financial standpoint, there is much at stake if patients are not informed and much to be gained if patients are better able to assume responsibility for the disease process.
The patient’s right to self-determination necessitates that a complete and accurate explanation of HF is provided.
Perception of Learning Needs Findings in this study were similar to the findings of previous HF learning needs research in many of the comparable educational topic catego-
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ries. The signs and symptoms topic, which included actions that should be taken if symptoms occur, was perceived by subjects in this study as the topic most important to learn. The inpatient subjects in Wehby and Brenner’s (1999) study had ranked this content second. Although the difference in the ranking of this topic is small, subjects in outpatient settings may perceive a greater need to recognize those symptoms that would necessitate consultation with their health care provider. Patients may perceive that while they are closely monitored by staff during a hospital stay, attention from the health care provider after hospital discharge will only occur if they themselves recognize the need for such attention and initiate contact based on their symptoms. One subject commented, “You don’t feel as scared when you know what to do to help yourself feel better.” Research with a larger patient sample could help to determine if the signs and symptoms topic truly is more important to HF patients who are not currently hospitalized. Subjects in this study and in previous HF learning needs studies consistently rated medications as a topic very important to learn (Frattini et al., 1998; Hagenoff et al., 1994; Wehby & Brenner, 1999). This topic takes on new significance when viewed in context with the finding regarding HF patient lack of awareness of diagnosis. For example, if a patient understands that medications such as betablockers and angiotensin-converting enzyme inhibitors have been prescribed to keep their heart from failing, rather than to control blood pressure that may already be at normal or even low levels, they may be more likely to comply with the prescribed regime. This may be especially true among the elderly, who are the population most affected by HF, and who often face financial hardship in maintaining their prescription medications. Diet ranked generally low in perceived importance in this and in previous HF learning needs studies (Frattini et al., 1998; Hagenoff et al, 1994; Wehby & Brenner, 1999). This topic included items on sodium restriction, fluid restriction, and the necessity of recording daily weights. This is of great concern because it is recognized by health care providers that dietary intake has a direct impact on HF patient fluid-balance status. Frattini et al. (1998) have suggested that patients may better understand the impact of dietary measures on their
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symptoms if such measures were referred to as “salt and fluid control” (p.15). Subjects in this study commented frequently about how significantly their illness restricts activities that they had previously enjoyed. Many stated that food represents one of the few pleasures left in life and that they perceive the severe restrictions as denying them this pleasure. Further, health care professionals may greatly underestimate the difficulty involved in complying with such restrictions (Frattini et al., 1998). Perhaps the only clear conclusion is that dietary compliance remains problematic and that health care providers must go beyond simply providing facts about restrictions and must seek creative solutions that patients can live with on a day-to-day basis. The activity and psychological topics were perceived by subjects in this study as least important to learn. Activity perceptions may be related to the mean subject age of 75.7 years. Although care should be taken when making a generalization pertaining to age, it is possible that many subjects may have experienced some decline in activity level even before the onset of symptomatic HF. Therefore, they may perceive the other topics as more relevant to current lifestyle changes necessitated by HF. The low rating by subjects of items within the psychological topic was consistent with the findings of previous studies (Hagenoff et al., 1994; Wehby & Brenner, 1999). This category included issues such as support from others, sharing feelings with others, the normal emotional response to a chronic illness, and the effects of stress. It is interesting to observe that although subjects rated the items in this category as less important, the majority of subjects who chose to elaborate with additional comments did so with regard to psychological factors. One subject observed that “Stress makes it so much worse; too much stress will get you in trouble.” Another stated, “They [health care providers] need to make sure that other people in the family know about the HF, not just the patient.” Another subject talked about the symptoms of HF in an emotional context, stating, “It really matters when you get short of breath; you get really scared.” Although subjects did seem more eager to share thoughts and opinions regarding psychological issues, the lower importance rating may have reflected a belief that discussion of feelings and emotions is a sign of weakness.
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Demographic Variables This study explored whether the demographic variables of gender, age, or educational level could impact the perception of learning needs in a HF patient sample. There were no statistically significant correlations found between these variables and the rank ordering of the educational topic categories. Therefore, it may be appropriate to plan educational interventions without specific consideration of these variables, except on an individual needs basis. These findings, however, should be confirmed in future studies using a larger patient sample. IMPLICATIONS FOR PRACTICE
This study offers insight into the complex process of educating persons with HF about their disease. As stated, one of the most significant findings of this study was that nearly 25% of screened patients were not aware that they had been diagnosed with HF. This has serious implications for practice regarding the nurse’s role as patient advocate. Nurses in all settings should carefully assess the HF patient’s understanding of their disease process and plan interventions to promote awareness whenever there may be doubt about a patient’s knowledge of the diagnosis. Study findings with regard to the educational topic categories can provide a framework for planning educational interventions for patients with HF. Nurses responsible for HF education have generally prioritized this process to prevent a recurrence of exacerbation and hospitalization. Topics that the patient must learn very soon after diagnosis to prevent readmission to the hospital include signs and symptoms, medications, and diet. Topics that the patient can learn over an extended period of time to promote long-term health and well being include risk factors, psychological factors, general factors, activity, and prognosis. With the exception of dietary content, this approach is consistent with patient perceptions of educational content relevancy as revealed in this study. An HF educational plan that is initiated through a discussion of medications and signs and symp-
toms, topics that most patients already perceive as important, may allow the nurse to gain the patient’s interest and trust early in the educational process. Once this has occurred, the patient may be more receptive to a discussion of diet in a later educational session. It would probably not be desirable, based on this research, to begin an educational session with a discussion of diet or any of the other lower ranking topics; to do so may fail to promote the patient’s interest, resulting in decreased receptivity to information offered subsequently. SUGGESTIONS FOR FURTHER RESEARCH
Further research of HF patients’ lack of awareness of diagnosis is needed to more clearly define the scope of this apparent problem. If such research were performed within an inpatient setting, findings could prove immediately beneficial if the identification of those subjects without diagnosis awareness resulted in further education regarding diagnosis prior to hospital discharge. An intervention study that would address ways to increase motivation to learn and enhance compliance with self-care measures could also benefit this patient population. An outcomes study of the readmission rates for HF patients unaware of their diagnosis compared to those with awareness could also provide valuable information. CONCLUSION
Optimal wellness of HF patients depends on their ability to understand and to engage in extensive self-care measures. This ability is directly dependent on the educational strategies that are planned and implemented by nurses and other health care providers. Because the current changing health care system has resulted in less time for patient education, it has become imperative that education be provided in a manner that will effectively achieve essential educational goals. The implementation of research findings, such as those revealed in this study, is critical to the development of evidence-based practice and should be an integral part of the patient education process.
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This descriptive-correlational study examined the perceived learning needs of heart failure patients in postdischarge settings, as well as the influence of demographic variables on these learning needs. The Outpatient Heart Failure Learning Needs Inventory was used to rate subjects’ perceptions of the importance of educational topics on a five-point Likert scale. Findings indicated that subjects perceived signs and symptoms and medications as most important to learn and diet, activity, and psychological factors as least important to learn. These findings are consistent with previous research and provide a framework on which to base the development of educational programs for patients with heart failure. A significant finding was that nearly 25% of screened patients were unable to participate because they were unaware that they had been diagnosed with heart failure. © 2004 Elsevier Inc. All rights reserved.
H
EART FAILURE (HF) is a significant cause of morbidity and mortality in the United States and imposes a tremendous financial burden on the health care system. Nearly five million Americans had been diagnosed with HF by 1996, and a prevalence of 10 million cases is predicted by 2007 (O’Connell, 2000). Hospital admissions for HF increased from 377,000 in 1979 to 870,000 by 1996, with annual US expenditures approaching $18 billion (Artinian, Magnan, Sloan, & Lange, 2002; O’Connell, 2000). The burden of HF extends beyond the financial realm. Quality of life often deteriorates after diagnosis, and the prognosis is generally poor. Six-year mortality rates as high as 84% for men and 77% for women have been reported (O’Connell, 2000). The problem of HF is expected to worsen. Rising incidence and prevalence of HF is caused by reduced mortality after acute myocardial infarction, improved treatment of hypertension and diabetes, and the increasing longevity of our population (O’Connell, 2000). A marked rise in the incidence of HF is seen after age 65, and as life expectancy
Judith C. Clark, MSN, RN, Family Nurse Practitioner Student, Medical College of Ohio, Toledo, OH; Virginia M. Lan, PhD, RN, Associate Professor, Department of Nursing, Eastern Michigan University, Ypsilanti, MI. Address reprint requests to Judith C. Clark, MSN, RN, Eastern Michigan University, 311 Marshall Building, Yspilanti, MI 48197. E-mail: [email protected] © 2004 Elsevier Inc. All rights reserved. 0897-1897/04/1703-0003$30.00/0 doi:10.1016/j.apnr.2004.06.009 150
continues to improve, the problem of HF will likely intensify (O’Connell, 2000). Noncompliance on the part of HF patients has been shown to directly contribute to hospital readmission (Miura et al., 2001; Vinson, Rich, Sperry, Shah, & McNamara, 1990). The ability to engage in effective self-care is accepted as paramount in preventing hospital readmission and improving the quality of life for patients with HF. Improved compliance with the prescribed treatment regimen and subsequent reduction in hospital readmission may be achieved through comprehensive educational programs. Multidisciplinary postdischarge HF clinic, home visit, and telemanagement programs that include extensive educational components have shown significant reductions in HF patient readmission rates (Akosah, Schaper, Havlik, Barnhart, & Devine, 2002; Draus, Walblay, & Barraco, 2002; Kasper et al., 2002). Compliance may be enhanced if patients believe that ordered treatments are needed, safe, and effective, and if they perceive that adequate support is received from their health care provider, with a relationship that is based on trust and respect (Johnson, Williams, & Marshall, 1999; Stromberg, Brostrom, Dahlstrom, & Fridlund, 1999). Additionally, Leenerts et al. (2002) maintain that clinicians should form a partnership with patients in the development of self-care educational programs that focus on patient perceptions, experiences, and beliefs. Therefore, it is possible that achievement of decreased hospital readmission rates and optimal quality of life for HF patients through im-
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proved compliance could be facilitated by attentiveness on the part of health care professionals to learning needs as perceived by the patients. STUDY PURPOSE
Previous HF learning needs studies addressed the perceptions of patients within the hospital setting. Patient self-care actions after hospital discharge will ultimately determine readmission and quality of life outcomes, and for this reason, the purpose of this study was to determine learning needs as perceived by HF patients after hospital discharge. Patients were studied within home care and outpatient HF clinic settings.
Patient self-care actions after hospital discharge will ultimately determine readmission and quality of life outcomes, and for this reason, the purpose of this study was to determine learning needs as perceived by HF patients after hospital discharge.
Literature Review Previous research relevant to this study falls into three major categories: compliance issues, learning needs perceptions, and the effect of demographic variables (age, gender and educational level) on compliance and learning. Noncompliance with the ordered treatment plan has been shown as a significant problem for persons with HF. Ni et al. (1999) found that only 40% of studied HF patients reported that they consistently followed a low sodium diet, and only 58% weighed themselves daily even though they also reported understanding the importance of these actions. Neily et al. (2002) found that 86% of HF patients were unaware of the need for a reduced sodium diet. Research by Carlson et al. (2001) revealed that 60% and 56% of studied patients, respectively, did not recognize sudden weight gain and ankle edema as symptoms of worsening HF. HF patients have been shown to have high hospital readmission rates. The frequently cited study by Vinson et al. (1990) reported a HF patient sample readmission rate of 47% within 90 days of
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initial discharge. Krumholz et al. (1997) found that 44% of studied HF patients were readmitted within 6 months of initial discharge. Olsen and Coleman (2001) reported that 49% of studied cardiac readmissions were caused by HF and atrial fibrillation. Noncompliance has been consistently shown as a contributing factor to HF readmissions (Miura et al., 2001; Vinson et al., 1990). Learning needs research originally focused on the general cardiac population. In 1984, Gerard and Peterson studied the learning needs of a coronary care unit patient sample. The instrument that they developed for this study, the Cardiac Patient Learning Needs Inventory (CPLNI), measured patients’ perceptions of the importance of educational content (Gerard & Peterson, 1984). Subsequent research that also focused on patient perception of learning needs and used modified versions of the CPLNI targeted various cardiac populations, including post–myocardial infarction patients, and patients with angina and coronary artery disease (Chan, 1990; Czar & Engler, 1997; Karlik & Yarcheski, 1987; Karlik, Yarcheski, Braun, & Wu, 1990; Wingate, 1990). Three of these studies compared learning needs perceptions of both patients and nurses and found discrepancy between the opinions of the two groups. Patients perceived both activity and medications as less important than the nurses (Gerard & Peterson, 1984; Karlik & Yarcheski, 1987; Karlik et al., 1990). Research that specifically focused on the perceived learning needs of HF patients was published in 1994 by Hagenoff et al. They developed the Congestive Heart Failure Patient Learning Needs Inventory (CHFPLNI), a modification of the CPLNI, that specifically addressed the needs and concerns of HF patients. Two HF patient studies have since replicated this research using modified versions of the CHFPLNI (Frattini, Lindsay, Kerr, & Park, 1998; Wehby & Brenner, 1999). Wehby and Brenner’s (1999) modification of the CHFPLNI, the Heart Failure Learning Needs Inventory (HFLNI), reflected the Agency for Health Care Policy and Research guidelines for HF education published in 1994. All three of these studies also showed discrepancy between HF patient and nurse perceptions of the importance of various educational topic areas. Subjects studied by Frattini et al. (1998) and Hagenoff et al. (1994) rated all educational topics except diet and activity as
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more important to learn than the nurses. Wehby and Brenner’s research (1999) also revealed a lower patient than nurse rating of dietary content. In general, patients had more confidence than the nurses that the educational topics were realistic for them to learn (Wehby & Brenner, 1999). The studies by Wehby and Brenner (1999) and by Hagenoff et al. (1994) also showed that patients believed they could realistically learn most of the educational content that they also perceived to be of greatest importance. Research evidence supports the possibility that HF patient learning styles and needs may vary according to age, educational level, and gender. Older patients may be more likely to keep medical appointments than younger patients but may also have lower overall knowledge of the HF disease process (Artinian, Magnan, Christian, & Lange, 2002; Artinian, Magnan, Sloan, & Lange, 2002). Patients with higher levels of education may be more likely to comply with the treatment plan and to engage in self care (Rockwell & Riegel, 2001; Saounatsou et al., 2001). Although gender differences in HF patients did not seem to pertain directly to education, men were more likely than women to report perception of a higher quality of life, although womens’ perceptions did improve after a cardiopulmonary rehabilitation program (McEntee & Badenhop, 2000; Reidinger et al., 2001). This could influence motivation and willingness to learn.
Research evidence supports the possibility that HF patient learning styles and needs may vary according to age, educational level, and gender.
Previous studies targeting general cardiac patient populations found that patient perceptions of both the importance of educational content, and how realistic that content is to learn, may vary with the studied setting (Chan, 1990; Karlik et al., 1990; Wingate, 1990). This suggests that educational program needs may change with the patient’s environment. Before this study, this aspect of learning needs had not been explored in the HF patient population because the previous HF learning needs
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studies had all targeted inpatient populations. Therefore, the investigators of this study attempted to answer the following questions: (a) Which educational topics do HF patients in outpatient settings perceive as most important to learn? (b) Is there a difference in the perceived importance of educational topics according to gender? (c) Is there a relationship between education level and the educational topics? and (d) Is there a relationship between age and the educational topics? METHODOLOGY
Setting and Sample This study used a descriptive-correlational design with a convenience sample and partially replicated previous HF learning needs research. The target population was persons admitted with HF to either the home health care agency or the outpatient HF clinic program of one hospital system serving a small-town, rural community.
This study used a descriptive-correlational design with a convenience sample and partially replicated previous HF learning needs research.
Potential subjects were initially screened by the nurse practitioner that coordinated the HF clinic program or by the home health agency admission nurse. Subjects who met the following inclusion criteria were invited to participate in the study: (a) subjects were at least 18 years of age and had shown awareness that they had been diagnosed with HF, (2) subjects were able to read and write or were willing to have the questionnaire read to them and responses recorded by the investigator, (3) subjects provided informed consent, and (4) subjects had not been diagnosed with cognitive dysfunction. A total of 53 patients were screened over a period of 6 months during 2001. Thirteen patients were ineligible because they were unaware that they had been diagnosed with HF, and two were excluded because of cognitive deficits. Of the 38 patients that were eligible for inclusion, 33 (87%) agreed to participate in the study.
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Demographics
Procedure
Of the 33 subjects who participated in the study, 16 (48.5%) were men and 17 (51.5%) were women. Ages ranged from 49 to 92 years; the mean age was 75.7 years (SD ⫽ 10.56). The educational level of the subjects ranged from eighth grade to four-year college graduate; the mean years of education was 13 (SD ⫽ 2.17). About 61% had completed high school and beyond. There were 22 subjects from the homecare setting and 11 from the HF clinic setting.
Approval was received from the appropriate institutional review boards before the initiation of data collection. Participating home care subjects agreed to a home visit conducted by the principal investigator for the purpose of data collection. Subjects were given the option of completing the questionnaire with or without assistance. All 22 home care subjects chose to have the investigator read the instrument and record responses. In the outpatient HF clinic setting, subjects agreed to meet with the principal investigator for the purpose of completing the questionnaire after their regularly scheduled appointment with the clinic nurse practitioner. These subjects were also given the option of completing the instrument with or without assistance, and all 11 subjects also chose to have the investigator read the instrument to them and record their responses.
Instrumentation The Outpatient Heart Failure Learning Needs Inventory (OHFLNI) was developed for this study and was used as the data collection instrument. The OHFLNI is a direct modification of Wehby and Brenner’s (1999) HFLNI. Two items that were specific to inpatients were deleted and six items were modified to reflect the needs of an outpatient sample. All other items are original to the HFLNI. The OHFLNI contains 46 closedresponse items and 1 open-ended question covering 8 educational topic areas as recommended by the Agency for Health Care Policy and Research (1994) for HF patient education: prognosis, diet, activity, medications, signs and symptoms, risk factors, psychological factors (stress, support systems, emotional response to illness), and general HF information. Subjects were asked to rate each item from not important to very important on a five-point Likert scale. Permission to use and modify instrumentation was obtained from Gerard and Peterson (1984), Hagenoff et al. (1994), and Wehby and Brenner (1999). The overall alpha correlation coefficient of the OHFLNI for this study was 0.86 (N ⫽ 33). Subscale correlation coefficients for each category was 0.96 for medications, 0.91 for diet, 0.86 for activity, 0.85 for signs and symptoms, 0.82 for risk factors, 0.78 for prognosis, 0.71 for general HF information, and 0.65 for psychological factors. The OHFLNI was evaluated by a panel of experts and was found to have face and content validity for HF patients in outpatient settings. The panel of experts included one nurse practitioner specializing in HF, three home care nurses, and four coronary care unit nurses.
RESULTS
Research Question 1: Which Educational Topics Do HF Patients Perceive as Most Important to Learn? To answer this question, the mean for each of the educational topics was computed and ranked from highest to lowest (Table 1). Signs and symptoms was ranked the most important topic to learn followed by medications, prognosis, risk factors, general HF information, diet, activity, and psychological factors. The range of means was from 4.36 (signs and symptoms) to 3.63 (psychological factors). Although psychological factors was ranked last, the mean of 3.63 is higher than the midpoint on the scale and approaches moderately important. Research Question 2: Is There a Difference in the Perceived Importance of the Educational Topics According to Gender? By rank ordering the educational topics according to gender (Table 1), both groups identified signs and symptoms as the most important topic to learn. Medications, risk factors, and prognosis were the second, third, and fourth most important topics to learn among men. For women, prognosis was second most important, followed by medications and risk factors. For
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Table 1. Rank Order of Perceived Degree of Importance by Educational Topic Whole Sample (n ⫽ 33)
Male (n ⫽ 16)
Female (n ⫽ 17)
Topic
Rank
M (SD)
Rank
M (SD)
Rank
M (SD)
Signs and symptoms Medications Prognosis Risk Factors General Diet Activity Psychological
1 2 3 4 5 6 7 7
4.36 (0.73) 4.13 (1.02) 4.11 (0.78) 4.08 (0.91) 3.87 (0.70) 3.83 (0.93) 3.63 (0.90) 3.63 (0.80)
1 2 4 3 5 6 7 8
4.34 (0.77) 4.24 (0.90) 4.14 (0.82) 4.23 (0.71) 3.85 (0.68) 3.79 (0.92) 3.64 (1.05) 3.58 (0.81)
1 3 2 4 5 6 8 7
4.38 (0.71) 4.04 (1.14) 4.08 (0.77) 3.94 (1.06) 3.90 (0.74) 3.87 (0.97) 3.62 (0.77) 3.67 (0.82)
both groups, diet and activity were ranked fifth and sixth. The least important topics to learn among both men and women were activity and psychological topics. However, by using oneway analysis of variance, no difference was found between male and female subjects’ perceived importance of the educational topics. Research Questions 3 and 4: Is There a Relationship Between the Age or the Education Level of the Subjects and the Educational Topics? Spearman’s rho coefficients were obtained to determine if there was a relationship between the educational topics and the age, as well as educational topics and the educational level of the subjects. There were no significant correlations found among these variables. There was an inverse relationship between age and educational level. The older subjects had less years of education, but the size of the correlation was small. DISCUSSION
HF Diagnosis Awareness The process of screening HF patients for possible inclusion in this study revealed one of the most significant findings. Of the 53 patients screened, 13 (24.5%) were unable to participate because they were not aware that they had been diagnosed with HF. This has serious implications for the educational process because patients cannot be expected to engage in effective learning regarding a health condition that they do not even know they have. The reasons for HF patient lack of awareness of diagnosis are likely varied and complex. The term used for the disease itself may contribute to this problem. Health care providers may perceive the term heart “failure” as too frightening for patients
to hear and may be reluctant to use precise terminology. The health care provider may also be influenced by perceived time constraints, believing that an explanation limited to the etiology of the HF, such as “heart trouble,” “heart disease,” or “heart attack” would take less time than a discussion of the implications of a failing heart. In some cases, patients and families may have received an accurate explanation of the diagnosis but may experience some level of denial about a disease that they perceive as frightening or terminal. This could occur if the explanation was not adequately detailed or was not followed by information that the patient could use to take control over the disease process. Regardless of the reasons behind patient and family lack of awareness of diagnosis, it should be recognized that this is not an acceptable standard. The patient’s right to selfdetermination necessitates that a complete and accurate explanation of HF is provided. From an ethical and financial standpoint, there is much at stake if patients are not informed and much to be gained if patients are better able to assume responsibility for the disease process.
The patient’s right to self-determination necessitates that a complete and accurate explanation of HF is provided.
Perception of Learning Needs Findings in this study were similar to the findings of previous HF learning needs research in many of the comparable educational topic catego-
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ries. The signs and symptoms topic, which included actions that should be taken if symptoms occur, was perceived by subjects in this study as the topic most important to learn. The inpatient subjects in Wehby and Brenner’s (1999) study had ranked this content second. Although the difference in the ranking of this topic is small, subjects in outpatient settings may perceive a greater need to recognize those symptoms that would necessitate consultation with their health care provider. Patients may perceive that while they are closely monitored by staff during a hospital stay, attention from the health care provider after hospital discharge will only occur if they themselves recognize the need for such attention and initiate contact based on their symptoms. One subject commented, “You don’t feel as scared when you know what to do to help yourself feel better.” Research with a larger patient sample could help to determine if the signs and symptoms topic truly is more important to HF patients who are not currently hospitalized. Subjects in this study and in previous HF learning needs studies consistently rated medications as a topic very important to learn (Frattini et al., 1998; Hagenoff et al., 1994; Wehby & Brenner, 1999). This topic takes on new significance when viewed in context with the finding regarding HF patient lack of awareness of diagnosis. For example, if a patient understands that medications such as betablockers and angiotensin-converting enzyme inhibitors have been prescribed to keep their heart from failing, rather than to control blood pressure that may already be at normal or even low levels, they may be more likely to comply with the prescribed regime. This may be especially true among the elderly, who are the population most affected by HF, and who often face financial hardship in maintaining their prescription medications. Diet ranked generally low in perceived importance in this and in previous HF learning needs studies (Frattini et al., 1998; Hagenoff et al, 1994; Wehby & Brenner, 1999). This topic included items on sodium restriction, fluid restriction, and the necessity of recording daily weights. This is of great concern because it is recognized by health care providers that dietary intake has a direct impact on HF patient fluid-balance status. Frattini et al. (1998) have suggested that patients may better understand the impact of dietary measures on their
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symptoms if such measures were referred to as “salt and fluid control” (p.15). Subjects in this study commented frequently about how significantly their illness restricts activities that they had previously enjoyed. Many stated that food represents one of the few pleasures left in life and that they perceive the severe restrictions as denying them this pleasure. Further, health care professionals may greatly underestimate the difficulty involved in complying with such restrictions (Frattini et al., 1998). Perhaps the only clear conclusion is that dietary compliance remains problematic and that health care providers must go beyond simply providing facts about restrictions and must seek creative solutions that patients can live with on a day-to-day basis. The activity and psychological topics were perceived by subjects in this study as least important to learn. Activity perceptions may be related to the mean subject age of 75.7 years. Although care should be taken when making a generalization pertaining to age, it is possible that many subjects may have experienced some decline in activity level even before the onset of symptomatic HF. Therefore, they may perceive the other topics as more relevant to current lifestyle changes necessitated by HF. The low rating by subjects of items within the psychological topic was consistent with the findings of previous studies (Hagenoff et al., 1994; Wehby & Brenner, 1999). This category included issues such as support from others, sharing feelings with others, the normal emotional response to a chronic illness, and the effects of stress. It is interesting to observe that although subjects rated the items in this category as less important, the majority of subjects who chose to elaborate with additional comments did so with regard to psychological factors. One subject observed that “Stress makes it so much worse; too much stress will get you in trouble.” Another stated, “They [health care providers] need to make sure that other people in the family know about the HF, not just the patient.” Another subject talked about the symptoms of HF in an emotional context, stating, “It really matters when you get short of breath; you get really scared.” Although subjects did seem more eager to share thoughts and opinions regarding psychological issues, the lower importance rating may have reflected a belief that discussion of feelings and emotions is a sign of weakness.
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Demographic Variables This study explored whether the demographic variables of gender, age, or educational level could impact the perception of learning needs in a HF patient sample. There were no statistically significant correlations found between these variables and the rank ordering of the educational topic categories. Therefore, it may be appropriate to plan educational interventions without specific consideration of these variables, except on an individual needs basis. These findings, however, should be confirmed in future studies using a larger patient sample. IMPLICATIONS FOR PRACTICE
This study offers insight into the complex process of educating persons with HF about their disease. As stated, one of the most significant findings of this study was that nearly 25% of screened patients were not aware that they had been diagnosed with HF. This has serious implications for practice regarding the nurse’s role as patient advocate. Nurses in all settings should carefully assess the HF patient’s understanding of their disease process and plan interventions to promote awareness whenever there may be doubt about a patient’s knowledge of the diagnosis. Study findings with regard to the educational topic categories can provide a framework for planning educational interventions for patients with HF. Nurses responsible for HF education have generally prioritized this process to prevent a recurrence of exacerbation and hospitalization. Topics that the patient must learn very soon after diagnosis to prevent readmission to the hospital include signs and symptoms, medications, and diet. Topics that the patient can learn over an extended period of time to promote long-term health and well being include risk factors, psychological factors, general factors, activity, and prognosis. With the exception of dietary content, this approach is consistent with patient perceptions of educational content relevancy as revealed in this study. An HF educational plan that is initiated through a discussion of medications and signs and symp-
toms, topics that most patients already perceive as important, may allow the nurse to gain the patient’s interest and trust early in the educational process. Once this has occurred, the patient may be more receptive to a discussion of diet in a later educational session. It would probably not be desirable, based on this research, to begin an educational session with a discussion of diet or any of the other lower ranking topics; to do so may fail to promote the patient’s interest, resulting in decreased receptivity to information offered subsequently. SUGGESTIONS FOR FURTHER RESEARCH
Further research of HF patients’ lack of awareness of diagnosis is needed to more clearly define the scope of this apparent problem. If such research were performed within an inpatient setting, findings could prove immediately beneficial if the identification of those subjects without diagnosis awareness resulted in further education regarding diagnosis prior to hospital discharge. An intervention study that would address ways to increase motivation to learn and enhance compliance with self-care measures could also benefit this patient population. An outcomes study of the readmission rates for HF patients unaware of their diagnosis compared to those with awareness could also provide valuable information. CONCLUSION
Optimal wellness of HF patients depends on their ability to understand and to engage in extensive self-care measures. This ability is directly dependent on the educational strategies that are planned and implemented by nurses and other health care providers. Because the current changing health care system has resulted in less time for patient education, it has become imperative that education be provided in a manner that will effectively achieve essential educational goals. The implementation of research findings, such as those revealed in this study, is critical to the development of evidence-based practice and should be an integral part of the patient education process.
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