European Journal of Heart Failure

European Journal of Heart Failure 2005 7(5):699-703; doi:10.1016/j.ejheart.2005.07.003

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© 2005 European Society of Cardiology

Exploring symptoms in chronic heart failure

Inger Ekman, John G.F. Cleland, Bert Andersson and Karl Swedberg

Department of Nursing, The Sahlgrenska Academy at Göteborg University Box 457, SE 405 30 Göteborg, Sweden
Department of Cardiology University of Hull, Kingston upon Hull, UK
Department of Cardiology Sahlgrenska University hospital/Sahlgrenska, Göteborg, Sweden
Department of Medicine Sahlgrenska University hospital/Östra, Göteborg, Sweden

Corresponding author. Fax: +46317736050E-mail address: inger.ekman{at}fhs.gu.se

	Abstract

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Symptoms in patients with chronic heart failure (CHF) are the cry for help, reflecting not only the physical aspects of the disease but the impact on lifestyle, anxiety, depression and expectations of the patient. Studies consistently show a difference in patients' self-assessed functional classification compared to investigator reported NYHA classification. Moreover, patient self-assessed symptoms have recently been shown to independently predict hospitalisation and mortality over 5 years. Recognition of symptoms and appreciation of their importance justifies the use of a structured assessment in order to provide optimal medical care for patients with CHF. A model of how to structure symptom assessment equally with signs is presented in this paper.

Key Words: Symptoms • Signs • Heart failure • NYHA • Adherence

Received July 3, 2005; Revised July 7, 2005; Accepted July 7, 2005

	1. Background

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Few patients present to a health professional complaining of a specific disease. Most patients seek help because they have symptoms which reflect how they feel and what they can do and how they are viewed by others [1]. The current predominant theoretical frame of reference from health providers assumes that symptoms are to be interpreted as reflections of disordered somatic (biochemical, neurophysiological, etc.) processes. The task of the clinician is therefore to "decode" the patients' symptoms to their biological referents in order to diagnose a disease entity [2,3]. However, most clinicians recognize that many symptoms are poorly related to any obvious somatic disorder, which complicates the diagnostic process. As a consequence, in order to identify patients with worsening CHF properly and offer correct treatment, the development of diagnostic tools such as echocardiography, coronary angiography and plasma BNP are used to confirm or exclude the disease. However, little consideration is given to trying to understand how patients' experiences should be integrated into current practice recommendations, reflecting a paucity of scientific information.

Obviously, symptoms are an important aspect of CHF and are frequently evaluated in research. The New York Heart Association (NYHA) classification has been used for over three decades as a summary measure of the clinicians' impression of symptoms in patients with CHF [4]. NYHA class predicts outcome in patients with heart failure. However, this classification is based not only on functional limitation due to symptoms but is also influenced by knowledge of the severity of cardiac dysfunction, prior medical history and the likely prognosis. However, the degree and extent of dyspnoea and fatigue are often poorly documented in patient records. This may reflect the lack of objective methods for measuring symptoms and their variable relationship with environment, activity and mood. These factors and the ability to induce temporary relief of severe symptoms may have reduced the importance of symptoms as a target of therapy for clinical trialists.

Symptoms are subjective, and clinicians should recognise and value their importance to patients. They reflect how the patient feels. They are the cry for help, reflecting not only the physical aspects of the disease but the associated impact on lifestyle, anxiety, depression and expectations of the patient. For these reasons, symptoms will vary markedly amongst patients and within the same patient from one time to another. Worsening conditions will often provoke emotional responses that make the patient feel more severely affected by symptoms. Once re-stabilised, even if not improved, given time to adjust lifestyle and expectations, symptoms may abate even if functional capacity does not recover. Patients learn to live with their symptoms and thereby report less severity. However, the perceived discomfort of symptoms, as well as the actual limitation they cause are both of interest to health professionals. Relief of symptoms is an important target of therapy for patients with CHF [5] as recognised by the European agency for the evaluation of medical products (EMEA) as well as the American Food and Drug administration (FDA) [6].

	2. Which symptoms?

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Breathlessness and fatigue are the classical symptoms of heart failure [7–9]. Probably because of the NYHA classification, other symptoms are rarely documented in patients with CHF, but as many as 23 different symptoms have been reported by patients during their last 6 months of life [9]. Symptoms such as difficulty concentrating and bodily pain (other than chest pain) are common [10]. Women and men with CHF experience similar symptoms, but they are perceived in different ways; physical and social restrictions affecting daily life activities are most problematic for men, whereas restrictions affecting the ability to support family and friends are most difficult for women [11–13].

	3. Symptom assessment

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Symptoms reflect the patient's personal subjective experience, which is then interpreted, subjectively, by health professionals. Not surprisingly, there is disparity between the assessment of symptoms by patients compared to physicians and nurses [14–16]. According to Tiesinga et al. [17], nurse assessment of the intensity of patients fatigue relates poorly with the patients own perceptions, while the patients' relatives assessed fatigue more accurately. Obviously, knowledge about personal factors is important when assessing symptoms. Of even greater concern is the poor reproducibility of symptom assessment by physicians [16].

It has often been assumed that dyspnoea is a sensation that varies only in the degree of intensity, but certain descriptors of shortness of breath have been reported to be more likely to be endorsed by patients with specific conditions [17]. For example, patients with chronic obstructive pulmonary disease (COPD) chose, "My breathing requires effort", whereas patients with heart failure chose, "I feel that I am suffocating", to characterize their personal experiences of dyspnoea [18,19]. When comparing descriptors of breathlessness among men and women, we found that the women did not choose any particular descriptor whereas men scored the following three descriptors significantly higher; My breath does not go in all the way, I feel that I am suffocating and I cannot get enough air [14]. Furthermore, the physicians recognised and assessed symptoms of CHF with greater accuracy in men. A major reason for failing to make an accurate diagnosis in CHF is that symptom presentations mirror our cultural and social contexts. The clinical understanding of symptoms associated with coronary disease is derived primarily from studies in male patients. Clinical trials often focus on patients with left ventricular systolic dysfunction leading to a higher proportion of men. This may undervalue the importance of heart failure and its symptom burden in women.

	4. Self-assessed symptoms

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
The clinicians' task is difficult because symptoms are subjective and meaningful. Studies consistently show a difference in patients' self-assessed functional classification compared to investigator reported NYHA classification [20,21]. (Fig. 1). Recently, the COMET trial reported that the severity of patient self-assessed symptoms, independently predicted hospitalisation and mortality over 5 years [21]. Breathlessness, fatigue and angina were rated by the patients (n=3029) using a 5-point scale as follows: (1) Asymptomatic; (2) Walking upstairs at normal pace; (3) Walking at normal pace on the flat; (4) Walking slowly on the flat or during washing or dressing and (5) At rest. In a multivariate Cox regression analysis including 16 baseline covariates, amongst symptoms, breathlessness predicted an increase in mortality and all-cause hospitalisation, whilst fatigue predicted the development of worsening heart failure. Clearly, symptoms reported by patients are not only important targets for therapy in their own right, but also indicate the need for treatment to improve prognosis.

View larger version (15K): [in this window] [in a new window] [Download PowerPoint slide]   Fig. 1 Patients' self-assessed functional classification compared to conventional NYHA classification (modified after Ref. [20]).

 
Patient reported symptoms are readily available, inexpensive to acquire, valid (because they reflect the patients' experience), predict outcome and may be less operator-dependent than physical signs. Helping the physician and nurse to understand the structure of the patients' reality should improve the therapeutic alliance between patients and caregivers.

	5. Disease and illness

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
A distinction between disease and illness must be made. Disease is defined as an abnormality in the structure and function of body organs and systems and can often be identified by signs of bodily disorder such as oedema or reduced ejection fraction [22]. Illness means experienced reduction in states of well-being and social function manifesting as symptoms [22]. Disease and illness do not have a one-to-one relationship, signs can be identified without experiences of symptoms and similar degrees of organ pathology can generate quite different symptoms, as is well known in heart failure [23,24]. Illness may occur in the absence of detectable disease. Accordingly, the course of the disease may be very different from that of the accompanying illness. A model of clinical practice, integrating both the disease and illness perspectives, has been developed by the medical anthropologists Byron J. Good and Mary-Jo Delvecchio-Good [2]. They state that whatever the biological correlates or grounds of a disease, illness becomes an interpreted personal experience for the patient. At present, the disease is primarily considered as an object for therapeutic attention for the care provider. We found this model useful in exploring symptoms in a structured way and have therefore modified it in order to match care and treatment for patients with CHF. The model is described step by step in Table 1.

View this table: [in this window] [in a new window]   Table 1 Interpretation of signs and symptoms in CHF (modified after Ref. [2])

 
The first step; The pathological entity identifies the symptoms, such as breathlessness, and tiredness or signs such as ankle swelling. The next step; Structure of relevance means information that reveals the meaning of illness to a patient, for example the patient explains that he or she cannot manage the stairs at home because of the breathlessness. The elicitation procedure in the disease perspective is when the physician confirms the suspected diagnosis with for example echocardiography, from the illness perspective it means listening to the patient's personal explanation of the symptoms and signs. The interpretative goal is diagnosis and explanation from the disease point of view and from the illness perspective it means the health professional's understanding of the patient's interpretation of their condition and the treatment. And finally, The therapeutic goal which is to intervene in the disease process in the disease-oriented approach while, from the illness perspective it means trying to reach concordance between health professionals and patients' view on illness and treatment.

	6. Adherence to prescribed treatment

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Studies suggest that as many as 30–50% of medicines prescribed for the treatment of CHF are not taken as prescribed [25–27]. The reasons for this lack of adherence are largely unknown, but research indicates that lack of symptom relief when taking medicines may be one explanation [28,29]. The clinician's assessment of the needs and effects of treatment and the patient's subjective perception are often not the same. The latter vary between individuals and also within an individual, depending on psychological and social factors that require careful assessment and communication between caregiver and patient. Even when patients consider that they are adhering to treatment and self-care guidelines, many fall short because of a breakdown in communications between patients and healthcare providers [30]. For instance, many patients are given a 1 week supply of medication when they leave hospital. Some patients may think, very reasonably, that once they have finished their discharge medication that the course of treatment is complete, just like taking an anti-biotic. It can also be very confusing when patients are faced with their pre-admission medication (left at home) and their discharge medication [31]. Multidisciplinary management programmes improve quality of life, reduce mortality and delay subsequent hospitalisations in patients with CHF [32,33]. However, these interventions are often vaguely described as "optimal pharmacological treatment, education and counselling of the patients" and are therefore difficult to reproduce and develop further [32–34]. Non-adherence is often not about patients disobeying or forgetting, and cannot be solved solely with pharmacological information but has to be approached by trying to reach the patients' way of thinking and adapt to their way of understanding.

New approaches are being evaluated for the care and treatment of patients with CHF; such as home telemonitoring and nurse telephone support [35], and also models which tailor the intervention from a patient's subjective reports about his or her condition [36]. The latter approach emphasizes the need of the health provider to further explore the relationship between a patient's particular expression of distress and physiological disorder.

	7. Summary

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 
Symptoms are important for the interpretation and understanding of patients with CHF. They reflect either the disease itself or the patient's perception of the illness.

Recognition of symptoms and appreciation of their importance should be the reason for a structured assessment in order to provide optimal care for patients with CHF.

	References

Top Abstract 1. Background 2. Which symptoms? 3. Symptom assessment 4. Self-assessed symptoms 5. Disease and illness 6. Adherence to prescribed... 7. Summary References

 

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