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European Journal of Heart Failure 2003 5(3):363-370; doi:10.1016/S1388-9842(02)00253-2
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© 2003 European Society of Cardiology

Development and testing of the European Heart Failure Self-Care Behaviour Scale

T. Jaarsmaa,*, A. Strömbergb, J. Mårtenssonc and K. Dracupd

a Department of Cardiology, University Hospital Groningen P.O. Box 30001, 9700 RB Groningen, The Netherlands
b Department of Cardiology, Linköping University Hospital Linköping, Sweden
c Department of Cardiology, Ryhov County Hospital Jönköping, Sweden
d UCSF School of Nursing San Francisco, USA

* Corresponding author. Tel.: +31-50-3613429; fax: +31-50-3614391. E-mail address: t.jaarsma{at}thorax.azg.nl


   Abstract
Top
 Abstract
1. Introduction
 2. Background
 3. Methods
 4. Results
 5. Discussion
 References
 
Background: Improvement of self-care behaviour is an aim of several non-pharmacological nurse-led management programmes for patients with heart failure. These programmes are often evaluated based on their effects on readmission, costs and quality of life. It is, however, also important to know how patients changed their self-care behaviour as a result of such a programme. Therefore a comprehensive, reliable and valid measure of the self-care behaviour of HF patients is needed.

Objectives: To develop a scale measuring the behaviour that heart failure patients perform to maintain life, healthy functioning, and well-being.

Method: The European Heart Failure Self-Care Behaviour Scale (EHFScBS) was developed in three phases: (1) concept analysis and first construction; (2) revision of items and response and scoring format; and (3) testing of the new scale for validity and reliability.

Results: The European Heart Failure Self-Care Behaviour Scale is a 12-item, self-administered questionnaire that covers items concerning self-care behaviour of patients with heart failure. Face-validity and concurrent validity was established and the internal consistency of the scale was tested using pooled data of 442 patients from two centres in Sweden, three in the Netherlands and one in Italy. Cronbachs's alpha was 0.81.

Conclusion: The instrument is a valid, reliable and practical scale to measure the self-reported self-care behaviour of heart failure patients. It is ready to use by investigators evaluating the outcome of heart failure management programmes that target changes in patients’ self-care practices.

Key Words: Heart failure • Self-care • Scale • Behaviour

Received May 2, 2002; Revised August 5, 2002; Accepted September 17, 2002


   1. Introduction
Top
 Abstract
 1. Introduction
2. Background
 3. Methods
 4. Results
 5. Discussion
 References
 
There is increasing interest in improving patient outcomes in the heart failure population. It is generally known and recognised that heart failure is common, costly and disabling with epidemic proportions [1,2]. Treatment of patients with heart failure is aimed at both improving the survival and quality of life. In comparing approaches to treatment, decreasing health care cost is also considered an important outcome [3,4].

Recently, there have been several developments in the field of pharmacological management of heart failure that influence morbidity and mortality outcomes. Therapy with ACE-inhibitors, beta-blockers and spironalactone has been shown to improve survival and these agents are recommended in recent guidelines [5]. Despite these major advances in pharmacological therapy, heart failure still leads to symptoms, limited functional capacity and poor quality of life [6,7]. Heart failure management models hold promise for improving quality of life of patients and decreasing rehospitalisation rates and health care costs [8,9]. These heart failure management programmes often include several components with different objectives, for example, enhancing treatment compliance, modifying of risk factors, and increasing social support.

Although several studies reported positive effects of these heart failure management programmes, there were also inconclusive or negative studies [10–12]. There still is debate on the effectiveness of various interventions and their underlying mechanisms.

It is generally recognised that heart failure patients have to learn to live with the consequences of the disease and treatment, which means: comply with a regimen concerning medication, diet and exercise, monitor symptoms, and seek assistance when symptoms occur. It is believed that an improvement in outcomes depends on patients’ abilities to care for themselves and manage the consequences of their condition. Patients’ self-care abilities are often far from optimal [13]. Therefore, heart failure management programmes aim at improving patients’ self-care, making them experts in heart failure self-management and teaching them to recognise deterioration and take relevant actions in case of exacerbation. It has been shown that up 50% of the hospital readmissions might have been prevented if patients had performed self-care and complied with treatment and discharge planning and social support had been sufficient [14]. Early readmission of elderly patients with heart failure symptoms have been shown to be high and this emphasises the need for interventions in order to improve self-care behaviour in symptom recognition and management [15]. This increased self-care behaviour is expected to lead to fewer unplanned readmissions and improved quality of life [9,13]. Targeted education and support is an important way to increase self-care behaviour in patients with heart failure and a recent study has shown that education and support is a vital component of heart failure management and can substantially reduce adverse clinical outcomes and health care costs [16].

Most studies evaluating effects of heart failure management programmes concentrate on the number of readmissions or days in hospital as the primary endpoint. However, it is important to assess the direct effectiveness of the interventions; i.e. to measure how the actual behaviour of patients with heart failure has changed after education and counselling [17].

Therefore, an instrument to measure the self-reported self-care behaviour of patients with heart failure was developed. Several criteria were addressed during questionnaire development. First the concept to be measured was explicitly defined. Second, the reliability and validity of the questionnaire was evaluated. Finally, for reasons of comparison and generalisability of research results, the usefulness in different populations was determined.


   2. Background
Top
 Abstract
 1. Introduction
 2. Background
3. Methods
 4. Results
 5. Discussion
 References
 
2.1. Concept
Self-care is defined as the decision and strategies undertaken by the individual in order to maintain life, healthy functioning and well being. Self-care behaviour of a person can be universal (needed by every person), health-deviated (i.e. arises from health problems) and/or developmental (i.e. arises from a specific stage of life) [18]. Self-care in chronic diseases relies on personal resources and enables the person suffering from a chronic disease to be in charge of their own care [19]. Several behaviours can positively contribute to the health and well being of patients with heart failure [5]. These behaviours can be referred to as ‘heart failure related self-care behaviour’ (HF-Sc behaviour). HF-Sc behaviour reflects the behaviour that a HF patient undertakes to maintain life, healthy functioning, and well being [17]. This definition includes behaviours like adherence/compliance to medication, diet and exercise, and self-management, but it also refers to behaviours such as seeking assistance when symptoms occur or weighing daily.

2.2. To measure self-care behaviour
Barnes and Benjamin [20,21] developed the Self-care Assessment Schedule (SCAS), which measures the frequency of 10 behaviours during a period of 14 days. This scale demonstrated high levels of reliability and validity. It is a non disease-specific scale that addresses activities that a person undertakes which are of particular significance for most adults in any environment (e.g. dresses without assistance), rather then addressing behaviour that is specifically targeted at health care problems.

Dodd [22] developed a questionnaire to measure the self-care activities of cancer patients experiencing side effects of chemotherapy. Self-care was defined as activities the patient (family or friends) performed to alleviate the side effects experienced from chemotherapy. In their Self-Care Behaviour Questionnaire the patient is asked to report each side effect and its severity. For each side effect, the patient is asked to indicate the action taken to alleviate the side effect and its effectiveness. Patients who initiate and continue self-care behaviours they perceive as effective in alleviating side effects are awarded the higher scores. The reliability of this scale was assessed by test–retest and appropriate concurrent and content validity was established [22].

Connelly developed the Self-Care in Chronic Illness Questionnaire [23], which defined self-care as ‘behaviours to promote health, prevent illness, and treat and cope with health problems’. This 45-item questionnaire has only been pilot tested with 49 chronically ill subjects to establish reliability and validity.

2.3. Heart failure specific questionnaires
Three recent questionnaires developed for use in the heart failure population were found in the literature, to measure concepts related to self-care behaviour in heart failure, self-management and compliance.

Bennett and co-workers [24] developed and tested two scales to measure compliance beliefs related to medication and to diet (the Beliefs about Medication Compliance Scale and the Beliefs about Dietary Compliance Scale). These scales measure perceived benefits and barriers to medication and diet compliance in persons with heart failure. Construct validity of the scales was satisfactory and the internal consistency reliability estimates of the scales ranged from 0.63 to 0.88, with the BMCS having some estimates lower than 0.70. The test–retest reliability estimates ranged from 0.07 to 0.57.

Ni and co-workers assessed self-care needs in 113 patients with heart failure [25]. Approximately 40% of the patients did not recognise the importance of weighing themselves daily and 27% weighed themselves twice per month. Although 80% of the patients knew they should limit their salt intake, only one-third always avoided salty foods. Additionally, 36% believed they should drink a lot of fluids. They also found that a poor adherence behaviour score was associated with being unmarried, lower perceived self-efficacy, a lack of knowledge about self-care, and no prior hospitalisation. From the report it is not clear what instruments the authors used to measure self-care behaviour.

Recently, Riegel and co-workers [26] developed the Self-management of Heart Failure instrument. Self-management in this context was defined as a cognitive decision-making process undertaken in response to signs and symptoms of heart failure. The 65-item Self-Management of Heart Failure instrument has six subscales and it was designed to measure the ability of patients with heart failure to manage their disease. The subscales measure four stages of the self-care process (recognising and evaluating a change, implementing and evaluating a treatment) and the patients’ ease in evaluating the signs and symptoms and their self-efficacy. Face and content validity of the tool were demonstrated adequately and the internal consistency scores of the six subscales of the Self-Management of Heart Failure instrument ranged from 0.79 (ease of evaluating treatment) to 0.92 (evaluating the change). The authors of the scale state this instrument is adequate for clinical use and that additional research is needed before the Self-Management of Heart Failure instrument can be advocated for research purposes [26].

Reviewing the literature we found that none of the current questionnaires provides short and practical assessment of self-care behaviour related to heart failure. Since the evaluation of this concept seems to be important, we developed and tested the European Heart Failure Self-Care Behaviour Scale.


   3. Methods
Top
 Abstract
 1. Introduction
 2. Background
 3. Methods
4. Results
 5. Discussion
 References
 
The European Heart Failure Self-Care Behaviour Scale (EHFScBS) is a 12-item, self-administered questionnaire that covers items concerning self-care behaviour of patients with heart failure; for example, daily weighing, fluid restriction, exercise or contacting a health care provider. The development of this scale took place in three phases: (1) concept analysis and first construction; (2) weighing and selecting items; and (3) testing of the new scale.

3.1. Phase 1: concept analysis and first construction
An intensive study of existing literature describing the behaviour of heart failure patients required for optimal functioning and treatment compliance gave 20 items that were considered important. A first version of the scale was developed in Dutch and translated into English and Swedish (Table 1). Conceptually, three dimensions could be distinguished. The first dimension (‘complying with regimen’) covered nine items related to daily weighing, fluid and sodium restriction, medication, elevating legs, measuring diuresis, preventing influenza, visiting the cardiologist and exercising. The second dimension (‘asking for help’) covered seven items related to seeking help in case of weight gain, dyspnoea, nausea, oedema, fatigue and anxiety. The third dimension (‘adapting activities’) contained four items related to adapting one's activities to the condition, for example, taking enough rest or spreading activities throughout the day.


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  		Table 1 Items of the original Heart Failure Self-care Behaviour Scale and the ranking of importance performed by 10 heart failure nurses

 
A panel of experts in the field of heart failure and patient behaviour established content validity. Pilot testing for discriminative value and reliability was performed in 197 Dutch advanced heart failure patients (mean age 73, NYHA III–IV), over four points in time (admission, and 1, 3, 9 months post-discharge). After pilot testing and repeated discussions among several heart failure experts the item concerning visits to the outpatient department was deleted, since this item did not discriminate (i.e. all patients reported that they always visited the outpatient clinic).

Factor analysis was conducted using a principal components extraction with varimax rotation to confirm the dimensions. The theoretically assumed dimensions were only partially confirmed. Several items loaded on more than one factor and the reliability of the subscales was low (0.67, 0.57, 0.46), leading to a decision to use only a total score. Internal consistency of this first version was 0.63 at baseline, 0.68 after 1 month, 0.68 at 3 months and 0.62 at 9 months after discharge.

3.2. Phase 2: revision of items and response and scoring format
To improve the scale two new international expert panels established the weight of each of the 19 items of the scale. The first panel consisted of 10 Swedish HF nurses who rated the importance of the items as low, medium or high. These rates are reflected in the right hand column of Table 1. An international panel of heart failure experts finally discussed the formulation and relevance of the items as well as the response and scoring format. Experiences from patients in the Netherlands and Sweden regarding items and response format were also considered in this discussion. Different options for scaling responses were considered during this process. Patients found it difficult to answers yes or no to the statements and commented that they wanted a more differentiated scale. The same issue was raised by the international expert panel. Self-care behaviour is not always ‘black or white’, it is common that patients perform self-care behaviour to a certain extent. The scale involves statements on behaviour that the patients can agree on or not. The scoring format of the scale was therefore revised from a dichotomous scoring format (yes/no) to a Likert-scale, since the complex picture of human behaviour is often on a continuum. The scaling response was changed so that the patients could score on a 5-point scale between 1 (I completely agree) and 5 (I completely disagree). Adjectives like never, often and always were not seen as an option for scaling response, since they are vague and do not convey the same meaning to everyone and have therefore poor reliability. Another difficulty is that the meaning assigned to adjectives differs with the context and could not be used for all statement of the scale [27,28].

All the items were evaluated with the same response format and in the same direction (i.e. lower numbers represented less disagreement) because response set bias seems to be less of an issue that confusion in this ill, elderly patient population [26]. The revised scale is called the European Heart Failure Self-Care Behaviour Scale (Table 2). The scale was developed in English with translation and back translation into Swedish and Dutch, using health care professionals that spoke Swedish, English and Dutch or two of these three languages. In a later stage this procedure was followed to translate the scale into other languages.


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  		Table 2 The European Heart Failure Self-care Behaviour Scale

 
3.3. Phase 3: testing of the new scale
To determine reliability and validity, data were collected from 442 patients from two centres in Sweden, three in the Netherlands and one in Italy. Table 3 shows the characteristics of the sites and populations that were involved in the study. Researchers at each site provided the data of the scale and some basic demographic and clinical characteristics of the sample. The researchers also completed a short questionnaire about missing items and usability of the scale.


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  		Table 3 Characteristics of patients and settings used for reliability analysis of the European Heart Failure Self-care Behaviour Scale

 

   4. Results
Top
 Abstract
 1. Introduction
 2. Background
 3. Methods
 4. Results
5. Discussion
 References
 
4.1. Reliability
Factor analysis on the new scale using a principal components extraction with varimax rotation only confirmed one of the dimensions that was theoretically assumed in the original 20-item scale. The four items [3–5,8] regarding contacting a health care professional all loaded on one factor. However, the other items loaded on more than one factor or could theoretically not be identified as separate factors. The scale is used as a total scale and reliability analyses were performed over the total scale.

Cronbach's alpha estimates the extent to which different subparts of the instrument are equivalent in terms of measuring the critical attribute. To establish Cronbach's alpha, data from the centres were both analysed separately per centre and also pooled into one file. Cronbach's alpha's ranged from 0.69 to 0.93 in the separate Heart Failure samples. A lower alpha (0.67) was found in a sample that consisted of patients after myocardial infarction or with angina pectoris. Cronbach's alpha in the total sample was 0.81.

Mean values of the items were found between 1.2 and 3.1 (Table 4). Pearson's correlation coefficient between each item and the overall score was calculated.


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  		Table 4 Mean scores of the items and Pearson correlation coefficient between each item and the overall score (n=442)

 
The strongest associations of item and total score were with item 5: ‘if I gain 2 kg in 1 week I contact my doctor or nurse’ (r=0.74). The weakest correlations with the overall score were found in the items addressing getting a flu shot (r=0.41) and exercising regularly (r=0.40).

Pearson's correlation between all 12 separate items showed that item 1 (daily weighing) was correlated strongly (r=0.52) to item 5 (if I gain 2 kg in 1 week, I contact my doctor or nurse). Item 3 (contacting someone in case of shortness of breath) was strongly correlated to items 4 (r=0.67), 5 (0.49) and 8 (0.57), which are related to symptom recognition and taking appropriate action.

In the Swedish samples, deleting item 11 (getting a flu shot) would enhance the internal consistency of the scale (from 072 to 0.75 and from 0.69 to 0.75). In the Italian sample-deleting item 7 (taking rest during the day) could improve the internal consistency (from 0.76 to 0.80.).

In one of the Swedish samples, data after 3 and 12 months were collected. Cronbach's alpha of the EHFScB-scale was 0.71 (n=114) and 0.69 (n=120). Deleting item 11 (getting a flu shot) would improve reliability to 0.77 and 0.75, respectively.

4.2. Validity
In addition to establishing content validity during the construction phase, concurrent validity was assessed. Concurrent validity refers to the ability of an instrument to distinguish individuals who differ in their present status on a characteristic.

In this study we compared patients with extra heart failure education to patients without such education. From previous studies it can be expected that these patients differ in self-care behaviours [11,26]. If the European Heart Failure Self-care Behaviour Scale can differentiate between these groups, the validity of the scale is further confirmed. We compared patients with and without extra HF education and found that the scale discriminated between the two forms of care (Table 5).


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  		Table 5 Differences in EHFScBS scores between patients with extra HF-care and without extra HF-care (n=140)

 
4.3. Availability and usability
Researchers working with the scale reported that patients had no difficulties filling in the questionnaire. It took approximately 5–10 min for the patients to complete the questionnaire. Missing data almost never occurred, and if it did, the omissions were sample specific. For example, in one sample items 1 (daily weighing) and 5 (alert in case of weight gain) were missing a few times, while in another sample item 4 (elevate feet/legs) was missing occasionally.

One researcher warned about the possibility of response bias, which he observed in 5 of 74 patients. Patients scored all items with a 5.

At this moment, in addition to the English, Swedish and Dutch versions, the EHFScBS has been translated into Finnish, Italian, Turkish and Spanish.


   5. Discussion
Top
 Abstract
 1. Introduction
 2. Background
 3. Methods
 4. Results
 5. Discussion
References
 
Self-care behaviour is both an outcome to measure and a means to improve other important outcomes. Most heart failure management programmes emphasise that improved self-care behaviour is the key to success in order to improve quality of life and reduce mortality, morbidity and health care costs [29]. An evaluation of patient self-care behaviour can show how successful the education and counselling has been and in what areas the programme did not achieve behavioural change. To present results on the underlying mechanism of heart failure management interventions, a clinical measure of self-care is needed to measure the degree of patient self-care.

The EHFScBS is a valid and reliable scale to measure self-reported self-care behaviour of heart failure patients, and has the ability to differentiate between patients with and without additional education.

This practical scale has proven useful as a tool to gain insight into the effectiveness of health care interventions. We believe that this instrument is adequate for research purposes. Additional testing is needed before the heart failure self-care behaviour scale can be used in clinical practice.

It might be possible to use this scale in practice to evaluate the deficiencies in self-care in a particular patient and to identify specific education and counselling needs. It may also be possible to monitor progress of a patient on an individual basis by administering the scale during a hospitalisation, clinic visit or home visit by the heart failure nurse or specialist. Together with the patient, the progress or problem areas can be discussed and mutual goals can be set for the future. The EHFScBS is an instrument developed in a European population measuring self-care behaviour in patients with heart failure. While the instruments developed by Riegel et al. [26] and Bennett et al. [24] focus more on different steps in the process of performing self care, the EHFScBS describes the actual self-care behaviour performed and reported by the patient. For example, in the Self Management of Heart Failure Instrument by Riegel et al. [26] the decision making process of patients with heart failure is reflected and the scales of Bennett et al. [24] give insight in the underlying beliefs about self-care behaviour related to medication and diet. Since the scales measure different aspects of self-care, they may be used in combination with the EHFScBS. The EHFScBS is comprehensive and compact which makes it easy to administer in an elderly population.

The EHFScBS measures self-care behaviour by self-report. This gives the patient the opportunity to answer in a socially desirable way and may not reflect the behaviour accurately. The mean values of the answers reflect that more patients agreed to perform the different self-care behaviours, but the standard deviations reflect that the scores varied. Additional testing in this regard is recommended.

In conclusion: the EHFScBS can be used by researchers to establish effectiveness of heart failure management programmes and to gain insight into the mechanisms by which such programmes achieve their behavioural goals.


   Acknowledgements
 
We thank C. Koppelaar, G. Cleuren, G. Hunick and G. Pulignano for providing their data for analysis; and other users for their comments on the applicability of the scale.


   References
Top
 Abstract
 1. Introduction
 2. Background
 3. Methods
 4. Results
 5. Discussion
 References
 

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A. A Schiffer, J. Denollet, J. W Widdershoven, E. H Hendriks, and O. R F Smith
Failure to consult for symptoms of heart failure in patients with a type-D personality
Heart, July 1, 2007; 93(7): 814 - 818.
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R. Holland, I. Brooksby, E. Lenaghan, K. Ashton, L. Hay, R. Smith, L. Shepstone, A. Lipp, C. Daly, A. Howe, et al.
Effectiveness of visits from community pharmacists for patients with heart failure: HeartMed randomised controlled trial
BMJ, May 26, 2007; 334(7603): 1098 - 1098.
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M. J Lenzen, W. J M Scholte op Reimer, S. S Pedersen, E. Boersma, W. Maier, P. Widimsky, M. L Simoons, N. F Mercado, W. Wijns, and on behalf of the investigators of the Euro Heart S
The additional value of patient-reported health status in predicting 1-year mortality after invasive coronary procedures: a report from the Euro Heart Survey on Coronary Revascularisation
Heart, March 1, 2007; 93(3): 339 - 344.
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M. H.L. van der Wal, T. Jaarsma, D. K. Moser, N. J.G.M. Veeger, W. H. van Gilst, and D. J. van Veldhuisen
Compliance in heart failure patients: the importance of knowledge and beliefs
Eur. Heart J., February 2, 2006; 27(4): 434 - 440.
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G. J. Molloy, D. W. Johnston, and M. D. Witham
Family caregiving and congestive heart failure. Review and analysis
Eur J Heart Fail, June 1, 2005; 7(4): 592 - 603.
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A. Stromberg
The crucial role of patient education in heart failure
Eur J Heart Fail, March 16, 2005; 7(3): 363 - 369.
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