Symptom perception management education improves self-care in patients with heart failure

Abstract

BACKGROUND:

Patients with heart failure often have difficulty recognizing signs and symptoms of the disease, which delays seeking help, and therefore interferes with patient engagement and self-care management. Early detection of these symptoms could lead to care-seeking and avoid hospitalizations.

OBJECTIVE:

The purpose of this study was to design a complex intervention through a systematic literature review and qualitative study.

METHODS:

Our design followed the Medical Research Council’s recommendations. To design a complex intervention, we combined a systematic literature review on education, symptom recognition, and self-care management in patients with heart failure, and semi-structured interviews with cardiology healthcare providers and patients with heart failure admitted to a cardiology ward.

RESULTS:

The systematic literature review identified 582 studies published between 2005 and 2014, of which four were included in the final review. These suggested that patient education focused on symptom recognition, combined with reinforcements, led to better self-care behaviors. Additionally, content analysis of semi-structured interviews revealed three themes: health management, behavior management, and support received.

CONCLUSIONS:

Combining the findings of the literature review and the themes that emerged from the semi-structured interviews, we proposed the development and implementation of a complex intervention on symptom perception and fluid management.

Keywords

Heart failure self-management symptom recognition complex intervention

1 Introduction

Heart failure (HF) is a chronic condition that requires patients’ daily management to improve their self-care behaviors [1]. In this context, self-care is part of a decision-making process whereby a person acts to treat and manage his/her health condition in the event of an illness [2, 3]. As patients with HF are typically on a multi-therapeutic regimen, how they should manage their health is not always straightforward [4]. Often, patients delay care-seeking because they are unable to adequately detect and recognize symptoms [5].

Previously, self-care was regarded as the result of health maintenance (e.g., taking medication as prescribed) and management (e.g., detecting symptoms and taking an extra diuretic pill) [1]. As the concept evolved, however, symptom monitoring was removed from management, as patients with HF find it difficult to recognize symptoms, and are therefore unable to take appropriate actions to improve those symptoms [2]. Currently, self-care is considered to be sufficient if all three behaviors are performed (maintenance, management, and symptom recognition), starting with self-care maintenance and subsequently incorporating self-care monitoring and management [3]. Nevertheless, in chronic illnesses such as HF, this process is often unbalanced, making it difficult for patients to master self-care [6].

In symptom recognition or symptom perception, there is a body-listening factor, meaning patients need to monitor HF signs daily by using a scale to detect weight gain and noticing symptoms such as fatigue. Consequently, patients should be able to recognize and interpret such symptoms in order to evaluate their health status and take appropriate action [2 , 8]. Additionally, symptom perception is generally based on patients’ previous experiences, such as recognizing feet and malleolar edema, weight gain, tiredness, and fatigue [6, 9]. Occasionally, the combination of two or more symptoms, and their daily fluctuation, will lead patients with HF to identify these symptoms as ordinary, which subsequently leads them to wait for their disappearance [9].

As a predictor of inefficient self-care behaviors, patients with HF can benefit from a disease management program, focused on customized individual education, with teaching materials adjusted to each patient’s educational level to prevent inadequate self-care [10, 11]. Health education is the process of acquiring skills and knowledge to change behaviors and improve individual health [12]. Nurses are highly qualified to implement disease management programs and manage patients’ educational needs [13, 14].

Based on our research, we designed a complex intervention to be more suitable to patients with HF to improve self-care behaviors and decrease hospital admissions.

The Medical Research Council guidance [15] recommends that a systematic literature review and a qualitative study must be performed when designing an intervention. Therefore, we conducted a systematic literature review, analyzed the results from a qualitative study previously published elsewhere [16], and then combined the results of both studies to design a complex intervention.

2 Methods

The Medical Research Council’s complex intervention method was used to design the educational intervention to be developed in a pilot study [15]. The initial phase of this method requires collecting information through a systematic literature review and identifying the best components to be included in the intervention itself, through the qualitative methodology of semi-structured interviews [15]. From the aggregation of these data, the complex educational intervention was developed.

2.1 Systematic literature review

The systematic literature review was conducted according to the Joanna Briggs Institute’s protocol [17]. The initial review strategy was to identify both published and unpublished studies that addressed the question: what effect does symptom-recognition education have on self-care behaviors? The review was carried out across the following databases: CINAHL, PubMed, Scopus, Cochrane Central Register of Controlled Trials, and LILACS. Additionally, the search for unpublished studies was conducted on OpenGrey and RCAAP (Repositórios Científicos de Acesso Aberto de Portugal). Studies published in English, Portuguese, or Spanish since 1999 were considered for inclusion in this review. The selected timeline set Jaarsma’s paper [18] where it is firstly described the effects of a nurse-provided, supportive-education intervention for patients with HF. It consisted of structured and planned education on the most important topics related to HF, and did not merely focus on symptom monitoring. The initial keywords were: “heart failure,” “symptom recognition,” “symptom management,” “education,” and “self-care.” A second search was later performed, to search all identified keywords and index terms: “heart failure,” “congestive heart failure,” “chronic heart failure,” “symptom assessment,” “symptom recognition,” “symptom monitoring,” “symptom management,” “symptom perception,” “symptom interpretation,” “patient education,” “health education,” “disease management,” “self-care,” and “self-management.” The search protocol was registered in PROSPERO with the registration number CDD42018081708 and published afterwards [19].

The inclusion criteria of the systematic review considered studies with adults over 18 years old with a diagnosis of HF regardless of etiology, severity, duration, or presence of comorbid conditions, and education on symptom recognition provided by any healthcare provider for patients with HF. The effectiveness of the interventions of interest was compared with usual care and unstructured educational programs. Quantitative papers selected for retrieval were assessed using standardized critical appraisal instruments from the Joanna Briggs Institute Critical Appraisal Checklists for randomized controlled trials [20], quasi-experimental studies (non-randomized experimental studies) [20], critical appraisal tools for case-control studies [21], cohort studies [21], and analytical cross-sectional studies [21].

The review considered studies that included outcomes on HF self-care behaviors, including symptom recognition as HF management, measured using validated and reliable instruments, such as the European Heart Failure Self-Care Behavior Scale (EHFScBS) and the Self-Care Heart Failure Index (SCHFI). Selected studies were extracted using the standardized data extraction tool from JBI-SUMARI [17], and this process was conducted following the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) [22]. The systematic review was conducted in February 2018.

2.2 Qualitative study

The qualitative study included content analysis of semi-structured interviews with a convenience sample of five adult patients with HF admitted to a cardiology ward, two cardiologists, and three nurses with expertise in disease management for HF, at a university hospital in Portugal. The study was approved by the Committee for Ethics of Centro Hospitalar e Universitário de Coimbra, following the principles outlined in the Declaration of Helsinki [23]. All participants provided written informed consent for the interviews, which were performed by the lead investigator. The interview questions were as follows: (i) in your practice or opinion, what is the cause of decompensation in patients with HF leading to hospital admission; and (ii) what can healthcare providers do to help patients with HF overcome this situation and therefore address patients’ needs? Interviews took approximately 30 minutes, and were performed by the lead investigator in May and June of 2014.

2.3 Complex intervention design

A pilot study was designed to assess the intervention to be implemented with patients with HF. The Medical Research Council complex intervention method was used, which involves four phases: development, feasibility/piloting, evaluation, and implementation [15]. This method has benefits in nursing, as when a nurse interacts with a person who needs care or special education, an intervention is often started [24, 25].

This study included a development phase that involved: (i) a systematic literature review, (ii) modeling of the components involved in the intervention to be carried out, and (iii) a qualitative study [15, 26]. The intervention in this study included understanding signs and symptoms of HF, monitoring symptoms and fluid management, and knowing when to contact a doctor or nurse.

3 Results

3.1 Systematic literature review

The systematic literature review found 582 studies published between 2005 and 2014, of which 17 were eligible for full-text analysis. As shown in Fig. 1, only four were included in the review and critically appraised, regardless of their methodological limitations.

Fig. 1

PRISMA flow diagram of the study selection process.

The studies selected for review were conducted in the USA, and participants were recruited from cardiology units [27 –30]. The studies’ sample sizes ranged from 36 to 127 participants, for a total of 337 participants across the four studies. Outcomes were reported for three months [27 , 30] or one year [28].

Educational interventions were conducted by healthcare providers (pharmacists, registered nurses, or health educator) [27 , 30] or the principal investigator [29]. Patient education was individual, and delivered either face-to-face or by telephone follow-ups, with positive behavior reinforcement [27, 28]. If symptoms were difficult to differentiate, patients were encouraged to record their symptoms in diaries, in order to help them track symptoms [29, 30]. Interventions described in the selected studies emphasized patient education concerning symptom recognition and actions to be taken when symptoms worsened, to improve self-care behaviors [27 –30].

Data extraction, as presented in Table 1, showed significant positive self-care behavior changes between the control group (CG) and intervention group (IG) at three-month follow-up (mean CG 1.9±1.3 vs. mean IG 2.9±1.0; t = –2.24, p = 0.03) [27]. Further, 93.1%of the participants in the IG weighed themselves daily, compared to 77.1%in the CG, at three-month follow-up [29]. Overall, self-care behaviors improved in the IG after 90 days: self-care maintenance (baseline mean 56.8±22.0 vs. 90-day mean 76.9±18.4, p < 0.01), self-care management (baseline mean 48.2±19.3 vs. 90-day mean 60.4±27.2, p < 0.01), and self-care confidence (baseline mean 54.3±17.2 vs. 90-day mean 65.2±19.1, p < 0.01) [29]. Improvements were also shown in self-care maintenance and self-care management in the IG compared to the CG, and a significant interaction effect was found between group and time for self-care maintenance (p < 0.05). These results suggested that the intervention improved self-care maintenance at three-month follow-up [30]. Furthermore, one-year post-intervention, patients included in the IG had better self-care behaviors than patients in the CG, with more frequent daily weight measurements (p < 0.01) [28].

Table 1

Results for self-care behaviors (means and standard deviations at three months and percentages at one-year)

Study, Year	Outcome	Baseline			3 months				12 months
		CG	IG	P	CG	IG	p	Moderate effect size	%		p
									CG	IG
Caldwell et al., 2005	Self-care behaviors	1.5±0.82	1.6±0.94	0.75	1.9±1.3	2.9±1.0	0.03	–	–	–	–
DeWalt et al., 2006	Self-care behaviors	–	–	–	–	–	–	–	29	79	<0.001
Jurgens et al., 2013	Self-care maintenance	57.5±24.0	56.8±22.0	0.88	70.8±21.2^*	76.9±18.4^*	0.24	0.273^a	–	–	–
	Self-care management	43.8±21.1	48.2±19.3	0.30	61.1±22.5^*	60.4±27.2^*	0.92	–0.155^a	–	–	–
	Self-care confidence	54.4±16.9	54.3±17.2	0.98	60.5±20.7	65.2±19.1^*	0.36	0.256^a	–	–	–
Dickson et al., 2014	Self-care maintenance	58.5±18	63.9±15		64.5±16	80.6±9	0.04	0.38^b	–	–	–
	Self-care management	45.8±24	43±21		49.4±21	66.8±18	0.02	0.45^b	–	–	–

CG: control group; IG: intervention group; ^*Significant improvement (p < 0.01) from baseline to 90 days by paired t-tests; ^aCohen’s d; ^bCohen’s f.

3.2 Qualitative study

Content analysis of the semi-structured interviews was performed using the NVivo 10 program for qualitative data, after verbatim transcription. Three themes emerged from this analysis: health management (related to patients’ knowledge about signs and symptoms of heart failure); behavior management (general lack of knowledge of disease signs and symptoms); and support received (importance of regular clinic visits) [16], as seen in Table 2.

Table 2
Themes that emerged from semi-structured interviews on the needs of patients (Pts) with heart failure

Themes Sub-themes Patients verbal transcription

Behavior management Lack of knowledge “My doctor told me to be admitted to the hospital because I was feeling tired and fatigued” (Pt3)

“I could only sleep seated with a few pillows behind my back (Pt1)

Awareness of lifestyle errors “I should comply with the water restriction, but I drink more than recommended” (Pt3)

“My work is far from home, and it is difficult to follow health recommendations because I have lunch in restaurants” (Pt5)

Noncompliance with treatment “Once in a while, I drink wine ( . . .) and beer, and I should be more careful with the food I eat” (Pt3)

Health management Contact a doctor when feeling worse “I telephoned my cardiologist” (Pt2)

Follow providers’ health recommendations “I know I must do some physical exercise and walk a little every day” (Pt1)

Knowledge about HF signs and symptoms “I came because I had shortness of breath and swollen legs” (Pt4)

“when I went up two or three steps, I felt tired” (Pt1)

Support received Longer and more regular clinic visits “Instead of an annual consultation, clinic appointments should be more regular ( . . .) and assessed by nurses” (Pt5)

Home visits “Healthcare providers should visit patients at home to check on them”

Family and patient education “It is important to conduct several health education sessions” and “explain deeply what heart failure is, how it manifests itself, and what to do ( . . .) to live a normal life” (Pt2)

Telephone follow-up “(Healthcare providers) should telephone patients periodically to check if they are taking their medication properly, or if their weight is increasing” (Pt3)

Themes	Sub-themes	Patients verbal transcription
Behavior management	Lack of knowledge	“My doctor told me to be admitted to the hospital because I was feeling tired and fatigued” (Pt3)
		“I could only sleep seated with a few pillows behind my back (Pt1)
	Awareness of lifestyle errors	“I should comply with the water restriction, but I drink more than recommended” (Pt3)
		“My work is far from home, and it is difficult to follow health recommendations because I have lunch in restaurants” (Pt5)
	Noncompliance with treatment	“Once in a while, I drink wine ( . . .) and beer, and I should be more careful with the food I eat” (Pt3)
Health management	Contact a doctor when feeling worse	“I telephoned my cardiologist” (Pt2)
	Follow providers’ health recommendations	“I know I must do some physical exercise and walk a little every day” (Pt1)
	Knowledge about HF signs and symptoms	“I came because I had shortness of breath and swollen legs” (Pt4)
		“when I went up two or three steps, I felt tired” (Pt1)
Support received	Longer and more regular clinic visits	“Instead of an annual consultation, clinic appointments should be more regular ( . . .) and assessed by nurses” (Pt5)
	Home visits	“Healthcare providers should visit patients at home to check on them”
	Family and patient education	“It is important to conduct several health education sessions” and “explain deeply what heart failure is, how it manifests itself, and what to do ( . . .) to live a normal life” (Pt2)
	Telephone follow-up	“(Healthcare providers) should telephone patients periodically to check if they are taking their medication properly, or if their weight is increasing” (Pt3)

The health management theme was present in some patients who performed proper self-care behaviors. These patients followed a therapeutic regimen, mostly associated with diet and exercise, and adopted healthy lifestyles (e.g., “I know I must do some physical exercise and walk a little bit every day”). Along with changes in self-care behaviors, it was also noted that some patients were more alert to HF symptoms (e.g., “I came because I had shortness of breath and swollen legs” or “when walking up two or three steps, I felt tired”), and the detection of those symptoms led them to contact their doctor (e.g., “I telephoned my cardiologist”).

The behavior management theme was evident when patients presented a lack of knowledge about HF signs and symptoms (e.g., “my doctor told me to be admitted to the hospital because I was feeling tired and fatigued” or “I could only sleep seated with several pillows behind my back”). In addition to this lack of knowledge, these patients did not adhere to healthy lifestyles and did not perform sufficient self-care behaviors (e.g., “I should meet the water restriction, but I drink more than advised” or “my work is far from home, and it is difficult to follow health recommendations because I eat lunch in restaurants”). Along with these problems, it was observed that some patients were aware of their mistakes (e.g., “once in a while, I drink wine ( . . .) and beer, and I should be more careful with the food I eat”).

The support received theme included regular clinic visits (e.g., “instead of a yearly consultation, clinic appointments should be more regular ( . . .) and assessed by nurses”), telephone follow-ups, and home visit reminders. In this theme, is considered that “(healthcare providers) should telephone patients periodically to explore if they are taking their medication properly or if their weight is increasing,” “because if not reminded, patients tend to forget” relevant information. In this study, nurses and doctors elected disease management programs as one way to follow patients with HF and, therefore, help them improve their self-care behaviors (e.g., “it is important to perform several health education sessions” and “explain deeply what heart failure is, how it expresses, and what to do ( . . .) to live a normal life”).

4 Discussion

We designed a complex intervention to improve self-care in HF patients based on the results of a systematic literature review and a qualitative study using semi-structured interviews. The systematic literature review identified symptom-recognition education programs relevant for HF self-care. The qualitative study suggested that the themes derived from health management, behavior management, and support received should be part of these programs.

Self-care implies a decision to change one’s behavior in order to promote one’s health [2], as well as an adequate response to the early detection of signs and symptoms of diseases, such as HF [3]. Previous studies have shown that disease management programs can lead to improved self-care, and that patients need to be aware of the course of the disease, how to detect symptoms, and what to do when symptoms are observed [4 , 32]. However, as information can be forgotten, patients also need reinforcements, as suggested by the results of our qualitative study. The results from the systematic review also showed that the studies included for review had reinforcements over the follow-up period, suggesting that patients who received symptom-recognition education were more capable of detecting early signs of HF, as a strategy to improve self-care behaviors [27 , 33]. Therefore, this review was designed to identify whether symptom-recognition education for patients with HF could improve self-care behaviors by helping patients avoid symptom escalation.

The two studies performed here (the previously published qualitative study with interviews [16], and the systematic literature review), were not without limitations. First, both studies had small sample sizes. In the qualitative study, a convenience sample was used: five patients with HF admitted to a cardiology ward, two doctors, and three nurses with expertise in heart failure, even though the results were in accordance with another related study with a larger sample of HF patients [34]. As for the systematic review, only four studies were included in the final review. This small sample was mostly due to the limited timespan of the studies (which is part of the Joanna Briggs Institute Protocol) [17]. A meta-analysis on these studies could also not be performed, due to differences among participants, interventions, outcome measures (clinical heterogeneity), and designs (methodological heterogeneity). The results were thus presented in a narrative synthesis [17].

Despite these limitations, both studies supported the notion that disease-management programs are likely to help patients with HF learn how to detect and interpret signs and symptoms of the disease. The findings from these studies also showed that patient education, even simplified education [27], focusing on symptom recognition, improves self-care [28 –30].

Thus, despite the limitations present in both studies, the results obtained include the best evidence available. Therefore, a complex intervention was designed, and proposed to be tested in a pilot study. Although symptom perception and symptom monitoring can be difficult for patients with HF, previous studies have indicated that self-care behaviors can largely improve when these are implemented in management programs [27 –30]. Additionally, this was also supported by the themes that emerged in our qualitative study: health management, behavior management, and support received (suggesting reinforcements by telephone or during scheduled appointments) [16].

Therefore, and based on the European Society of Cardiology’s guidelines [35], the complex intervention designed here was directed at symptom perception and fluid management, as related to congestion. The intervention was composed of the following: (i) understanding signs and symptoms of HF; (ii) monitoring symptoms and fluid management; and (iii) knowing when to contact a doctor or nurse.

4.1 Understanding the signs and symptoms of HF

This topic focused on HF as a chronic disease, with a descending health trajectory, marked with an initial acute event and a diagnosis confirmed by a doctor. Here, healthcare providers focused on a change in self-care behaviors to stabilize disease progression and prevent hospital admissions [34, 36].

4.2 Monitoring symptoms and fluid management

As for this topic, the more frequent signs and symptoms of HF were addressed (dyspnea, fatigue, and weight gain –2 kg in three days or 5 kg in a week), as well as how to recognize them. Fluid restriction was also highlighted (no more than 1.5 L of liquids –water, juice, milk, yogurt, tea, coffee, and soup) in cases where it is difficult for a patient’s heart to pump a large volume of blood [35]. Further, patients were advised to monitor their weight daily, using a scale, and write it down on a monthly sheet. These strategies allowed patients with HF to evaluate their weight daily and helped them to identify symptoms of congestion, and therefore, initial signs of disease decompensation [6, 35].

4.3 Knowing when to contact a doctor or nurse

Patients were instructed that, upon detection of early signs and symptoms of HF, the doctor or nurse responsible for that patient’s disease management should be contacted. The disease trajectory was reinforced, and how to keep one’s physical condition as stable as possible, through continuous changes in self-care behaviors, was emphasized [35, 36].

The complex intervention was designed to be tested in a pilot study over three months, with two arms: a CG, who received usual care, and an IG, who received the educational intervention. Both groups had four evaluation points: baseline, one week after discharge via telephone follow-up, one month after discharge via nurse-led consultation, and three months after discharge via telephone follow-up. In each group and at all visits, patients were asked to complete two scales: the European Heart Failure Self-Care Behavior Scale [37, 38] and EQ-5D [39] for quality of life assessment.

5 Conclusions

The present study was structured to design and develop a complex intervention, as recommended by the Research Medical Council [15], and assembled data from a qualitative study and systematic literature review. Data from these studies suggest that education on symptom recognition can change self-care behaviors and is a key element in disease management by patients. A major limitation of the present study was that only one randomized controlled trial was included in the analysis. Such study design allows obtaining more suitable evidence for the aim of this study. In addition, studies similar to these are needed in order to obtain further evidence on the importance of symptom recognition education for HF patients.

Patients with HF must learn the signs and symptoms of HF, how to interpret those symptoms, and the appropriate actions to take when early signs and symptoms are detected. Further, maintaining a weight diary gives patients a tool with which they can better analyze their weight fluctuations, enabling them to understand and recognize the signs and symptoms of HF.

From these findings we suggest that future studies may benefit if a qualitative systematic review or a mixed-methods review on this topic are used. Similarly, studies with larger samples and multicenter research are needed.

Designing a complex intervention, based on these data, suggests that patient education focused on symptom recognition, combined with reinforcements, may lead to better self-care behaviors.

Footnotes

Acknowledgments

This study partially fulfilled degree requirements for successful completion of a Ph.D. in Nursing at Instituto de Ciências da Saúde, Universidade Católica Portuguesa, Porto, Portugal, by Joana Pereira Sousa (PhD candidate, MNSc, RN).

Miguel Pais-Vieira is affiliated to grant research: FCT IF/00098/2015 (MS), Bial 96/2016 (MS).

We would like to thank Editage () for English language editing.

Conflict of interest

None to report.

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