Symptom perception in heart failure: a scoping review on definition,factors and instruments

Abstract

Background:

Symptom perception in heart failure has been identified as crucial for effective self-care that is a modifiable factor related to decreased hospital readmission and improved survival.

Aims:

To review systematically the heart failure symptom perception literature and synthesise knowledge on definition, description, factors and instruments.

Methods:

We conducted a scoping review including studies reporting patient-reported symptom perception in adults with heart failure. Structured searches were conducted in Medline, PubMed, Embase, CINAHL, PsychINFO, Web of Science, Cochrane, JBI and grey literature. Two authors independently reviewed references for eligibility. Data were charted in tables and results narratively summarised.

Results:

The search yielded 3057 references, of which 106 were included. The definition of heart failure symptom perception comprised body listening, monitoring signs, recognising, interpreting and labelling symptoms, and furthermore awareness of and assigning meaning to the change. Symptom monitoring, recognition and interpretation were identified as challenging. Symptom perception facilitators include prior heart failure hospitalisation, heart failure self-care maintenance, symptom perception confidence, illness uncertainty and social support. Barriers include knowledge deficits, symptom clusters and lack of tools/materials. Factors with inconsistent impact on symptom perception include age, sex, education, experiences of living with heart failure, comorbidities, cognitive impairment, depression and symptom progression. One instrument measuring all dimensions of heart failure symptom perception was identified.

Conclusion:

Heart failure symptom perception definition and description have been elucidated. Several factors facilitating or hampering symptom perception are known. Further research is needed to determine a risk profile for poor symptom perception – which can then be taken into consideration when supporting heart failure self-care.

Keywords

Heart failure symptom perception body observation body analysis facilitators barriers

Introduction

Symptom perception is a necessary antecedent of self-care management and has emerged as essential for effective heart failure (HF) self-care (i.e. patient activities to maintaining physiological stability, perceiving and responding to symptoms).¹ Symptom perception has been described as involving body listening, monitoring signs to detect physical sensations and recognising, interpreting and labelling symptoms.¹ Symptom perception is challenging for patients with HF,^{2, 3} and failure to detect or interpret symptoms appropriately can result in inappropriate^{3, 4} or delayed responses (e.g. seeking care),⁴ and prolonged hospitalisation.⁵ In contrast, symptom recognition combined with appropriate responses decrease emergency room visits, HF hospitalisation and all-cause mortality.⁶ Self-care in HF remains suboptimal worldwide.⁷ Symptom perception needs to be operationalised. Understanding the factors influencing symptom perception may help identify patients at risk of poor symptom perception and develop tailored strategies for improving symptom perception. Reviewing the available instruments for assessing symptom perception may help in measuring this construct.

HF self-care theory,^{1, 8} modifying factors^9–11 and instruments measuring HF self-care^12–15 have been summarised. However, an overview focusing specifically on symptom perception is missing as the literature is embedded in the larger body of work on self-care. Two integrative reviews^{16, 17} have synthesised the literature on symptom recognition, interpretation and response.^{16, 17} These reviews identify some factors associated with symptom recognition,¹⁷ yet gaps remain regarding symptom perception definition, modifying factors and instruments measuring this construct.

This study aims to operationalise symptom perception by examining the scope of work on HF symptom perception relating to four research questions:

How has HF symptom perception been defined?

How has HF symptom perception been described?

What factors are associated with HF symptom perception?

What instruments have been used to measure HF symptom perception?

Methods

We conducted a scoping review and followed standard reporting guidelines for scoping reviews.¹⁸ The sequential process included identifying the research question, identifying and selecting relevant studies, data charting and comprehensively summarising results.¹⁹ The protocol is available on request from the corresponding author. Studies of symptom perception in adults living with HF were considered for inclusion along with expert opinion and position papers. Article eligibility criteria are detailed in Table 1.

Table 1.

Eligibility criteria applied to the scoping review.

Inclusion criteria	Exclusion criteria
Population Adults with HF Concept Studies reporting on symptom perception or related elements, i.e. symptom recognition, symptom detection, symptom awareness, somatic perception or somatic awareness Studies on symptom perception definition or description Studies reporting barriers or facilitators to HF symptom perception Studies on instruments measuring HF symptom perception (regardless of reported psychometric properties) Design Any study design including opinion and position papers Language English, French, Swedish, German, Italian and Spanish	Concept Studies limited to symptom intensity, symptom severity or distress description Studies of interventions supporting symptom perception Studies of symptom perception outcomes Context Remote monitoring Symptoms monitored by healthcare professionals

Inclusion criteria

Exclusion criteria

Population
Adults with HF
Concept
Studies reporting on symptom perception or related elements, i.e. symptom recognition, symptom detection, symptom awareness, somatic perception or somatic awareness
Studies on symptom perception definition or description
Studies reporting barriers or facilitators to HF symptom perception
Studies on instruments measuring HF symptom perception (regardless of reported psychometric properties)
Design
Any study design including opinion and position papers
Language
English, French, Swedish, German, Italian and Spanish

Concept
Studies limited to symptom intensity, symptom severity or distress description
Studies of interventions supporting symptom perception
Studies of symptom perception outcomes
Context
Remote monitoring
Symptoms monitored by healthcare professionals

HF: heart failure.

Literature searches were developed with a medical librarian (CJ). An initial limited search was conducted in Medline OvidSP. Relevant articles were identified (GCS) and discussed with the second reviewer (ML). Subsequently, keywords and index terms of the retrieved papers were analysed and finalised for a full search in eight bibliographic databases and five unpublished grey literature databases in October 2017 (Table 2). Full descriptions including keywords and search strategies are provided in the Supplementary files. The search was actualised on 21 August 2018 in the seven major bibliographic databases (Medline, PubMed, Embase, CINAHL, PsychINFO, Web of Science, Cochrane). During article review and data charting, additional articles were identified in the reference lists of retrieved articles and included in the review process. Authors were contacted to obtain full text articles as needed.

Table 2.

Literature search sources.

Bibliographic databases	Grey literature databases
Medline OvidSP Epub ahead of print, in-process and other non-indexed citations, Ovid MEDLINE(R) daily and Ovid MEDLINE(R) 1946 to present PubMed Search limited to the references not indexed for Medline Embase.com CINAHL full text Ebsco PsycINFO OvidSP 1806 to August week 2 2018 Web of Science core collection Cochrane Library Wiley Cochrane Database of systematic reviews issue 8 of 12, August 2018 Cochrane Central Register of Controlled Trials issue 7 of 12, July 2018 Database of abstracts of reviews of effect : issue 2 of 4, April 2015 Joanna Briggs Institute Database OvidSP	ProQuest (dissertations and theses) BASE – Bielefeld University Library Clinicaltrials.gov DART – Europe e-theses portal ICTRP – the WHO International Clinical Trials Registry Platform

Bibliographic databases

Grey literature databases

Medline OvidSP Epub ahead of print, in-process and other non-indexed citations, Ovid MEDLINE(R) daily and Ovid MEDLINE(R) 1946 to present
PubMed
Search limited to the references
not indexed for Medline
Embase.com
CINAHL full text Ebsco
PsycINFO OvidSP
1806 to August week 2 2018
Web of Science core collection
Cochrane Library Wiley
Cochrane Database of systematic reviews issue 8 of 12, August 2018
Cochrane Central Register of Controlled Trials issue 7 of 12, July 2018
Database of abstracts of reviews of effect : issue 2 of 4, April 2015
Joanna Briggs Institute Database OvidSP

ProQuest (dissertations and theses)
BASE – Bielefeld University Library
Clinicaltrials.gov
DART – Europe e-theses portal
ICTRP – the WHO International Clinical Trials Registry Platform

References were imported into citation management software (Endnote X7.7.1, Clarivate Analytics) and duplicates were removed. Two reviewers (GCS, ML) independently reviewed titles and abstracts of retrieved references and determined eligibility per inclusion/exclusion criteria without conducting a quality appraisal. Selected references underwent full text review to determine final inclusion. Web-based software (Rayyan),²⁰ was employed to document and track the study selection process. Both reviewers independently labelled each included reference according to the related research question(s). Data were extracted using structured forms for each research question (see categories used for data extraction in the Supplementary files). Articles were randomly assigned to three independent reviewers (GCS, ML, JG) for charting the data. Data charting quality was assessed by dual extraction and charting. In total, 10% of manuscripts underwent parallel data extraction by independent reviewers. Examination revealed that data extracted in parallel were comparable for all the references. Data on each research question were summarised narratively by GCS and results were discussed with both reviewers and PSK. Disagreements were resolved through discussion during monthly meetings throughout the review and extraction process.

Results

Following removal of duplicates, 3057 references were identified and screened by title and abstract. After initial review, 2544 references were excluded per inclusion/exclusion criteria. The remaining 513 references underwent full text review and 106 references were included for data extraction and charting. Reasons for excluding the 407 references are reported in the Prisma flow diagram (Figure 1).¹⁸

Figure 1.

Prisma flow diagram¹⁸ of study selection process.

Manuscript types included 46 observational studies,^{2, 7, 14, 21–63} 27 qualitative studies,^{4, 64–89} 12 literature reviews,^{16, 17, 90–99} eight mixed-methods studies,^{3, 13, 100–105} six manuscripts without a reported study design,^106–111 two pilot studies,^{112, 113} two theories,^{1, 8} one quasi-experimental study,¹¹⁴ one conceptual framework¹⁰ and one case study.¹¹⁵ Some of the 106 references related to more than one of the research questions. Twelve included references related to HF symptom perception definition,^{1, 8, 17, 27, 34, 43, 54, 75, 80, 100, 102, 106} 68 to description,^{2–4, 7, 10, 16, 17, 21–42, 49, 64–74, 76–79, 81–87, 89–98, 100–102, 107, 108, 115} 41 to factors^{1, 3, 10, 16, 17, 21, 22, 24, 26–29, 36, 37, 39, 44–48, 50, 66, 73–75, 88, 89, 93, 95, 96, 98, 99, 102–105, 107–111} and 23 to instruments.^{3, 13, 14, 32, 39, 44, 50-63, 112–114} An overview of symptom perception definition, description, factors and instruments is shown in Figure 2.

Figure 2.

Heart failure (HF) symptom perception definition, description, factors and instruments.

HF symptom perception definition

Several definitions of HF symptom perception are reported in the literature. The situation-specific theory of HF self-care¹ and related publications^{17, 102} defined symptom perception as ‘. . .body listening, monitoring signs, as well as recognition, interpretation, and labeling of symptoms’.^{1(p. 227)} This definition was supported by moderate relationships between symptom monitoring and symptom recognition and evaluation (r=0.34, P<0.01).⁴³ Another definition of symptom perception was: ‘. . .a combination of being aware there is a change and assigning meaning to the change’.^{80(p. 93)} One may consider HF symptom perception is defined by body observation and body analysis. Body observation includes body listening and monitoring HF signs/symptoms (i.e. a behavioural process) while body analysis relates to recognising, interpreting and labelling symptoms – as well as assigning meaning (i.e. a cognitive process). Next, we identified several concepts including symptom perception elements. Awareness, interpretation and measurement composed self-care monitoring;⁵⁴ body listening and coherence related to symptom recognition;¹⁰⁰ sensitivity to physical sensations and bodily activity secondary to physiological change²⁷ related to somatic awareness while symptom recognition and interpretation of its severity composed situation awareness.⁷⁵

Difficulties in body observation and body analysis and consequences

Most studies report that body observation is not systematic in patients with HF.^{4, 10, 17, 24, 25, 28, 29, 39, 41, 66, 67, 70, 83, 90, 96, 98} Only a minority of patients monitor symptoms regularly^{24, 64, 80} and considered symptom monitoring to be important⁸⁶ for controlling HF.^{64, 74, 78} In a large study, 16 of 22 studies (from 15 countries) reported irregular weight monitoring in more than half of patients.⁷ Physical and/or cognitive difficulties were reported in monitoring/recording weight without assistance.⁸² Furthermore, adherence to symptom monitoring was difficult^{2, 73, 92} and challenges include insufficient knowledge of HF signs/symptoms,^{42, 93, 100} poor oedema assessment skills,^{17, 39} forgetfulness,^{39, 49} worry about HF,^{39, 49} lack of time⁴⁹ and lack of trust in health professionals’ expertise and support.⁹³ Some patients did not recall having monitored their symptoms during the period preceding a HF exacerbation⁸⁰ and most patients experiencing weight gain did not report changes.²²

Body analysis following body observation is often poor because patients have difficulty recognising signs and symptoms related to chronic HF^{4, 21, 31, 33, 36, 66, 67, 74, 81, 83, 93, 98, 101, 107} as well as signs of decompensation.^{17, 23, 34–36, 42, 65} Patients have difficulty quantifying subtle changes in dyspnoea¹⁰⁸ and noting changes in symptom status.^{10, 26, 32, 97} In fact, objective and subjective reports of thoracic fluid retention (i.e. pleural fluid accumulation measured through intrathoracic impedance-derived fluid index vs. daily reported signs and symptoms) is discordant in 44% of cases.¹⁰² Cumulatively, these factors contribute to inaccurate interpretation of symptoms.^{17, 71, 73, 74, 76, 80, 93, 102} Body analysing made patients uncertain,⁸⁹ as some patients find it challenging to determine whether a symptom is clinically meaningful¹⁰⁰ – particularly for vague or non-specific symptoms.⁸⁷ Patients are often uncertain in situations when symptoms require interpretation³⁰ when clinical status deteriorates warranting medical attention.^{34, 72, 80, 90} Moreover, discrimination of HF symptoms from symptoms related to other comorbidities remains a challenge^{66, 79, 92–94, 102} and many patients inaccurately attribute their symptoms to something other than HF^{23, 81, 85} such as age,^{16, 27, 31, 84, 89, 91, 96, 107} comorbidities,^{4, 27, 31, 37, 38, 79, 93} medication,^{76, 91, 93} stress,¹⁰² fatigue³⁸ or the weather.¹⁰²

Response to body observation and body analysis varies. Some responses are more active in nature and may include resting, relaxing or changing their daily routine.^{25, 31, 38, 80, 82} Other responses are more avoidant in nature such as ignoring symptoms^{68, 74, 81} or adopting a ‘wait and see’ strategy¹⁰² in hopes that symptoms will resolve spontaneously.^{3, 4, 72, 81} These strategies can delay help-seeking,^{38, 97} or patients may only seek medical support if symptoms do not resolve,⁸² or symptoms escalate interfering with daily life activities,²⁷ or become unmanageable,^{76, 80} leading to emergency situations^{67, 79, 115} and hospitalisation.¹⁰⁷ Only some patients seek medical attention to understand or interpret the significance of symptoms⁷⁰ and learned about it when seeking care.⁷⁷

Factors impacting symptom perception

Facilitators

Identified facilitators of HF symptom perception include prior HF hospitalisation, HF self-care maintenance, symptom perception confidence, uncertainty about the meaning of illness-related events and social support. Somatic perception improved with the overall number of hospital admissions (r=0.42, P<0.001) as well as cardiac-related admissions within the past 6 months (r=0.36, P=0.002).¹⁷ Symptom monitoring and treatment-seeking were poorer in patients without prior HF hospitalisations (sβ=−0.21, P=0.02).²⁹ Self-care maintenance and symptom perception confidence has been shown to help explain variability in symptom perception.⁴⁶ The frequency of symptom monitoring predicts symptom monitoring at one month follow-up (odds ratio (OR) 9.18, 95% confidence interval (CI) 2.15–39.3).²⁴ Furthermore, patients with higher illness uncertainty were shown to pay more attention to somatic changes (r=0.36, P<0.01).^{17, 27} In addition, social support was reported to improve symptom perception as patients living with others are more likely to report dyspnoea⁴⁵ and are able to recognise changes in signs and symptoms better compared to patients living alone (P=0.014).^{17, 36} Informal caregivers may also assist with weight monitoring and symptom recognition.⁸⁸

Barriers

Identified barriers of HF symptom perception are knowledge deficits as well as symptom clusters and lack of tools/materials. Insufficient HF knowledge is associated with poor symptom monitoring and treatment-seeking (P=0.028).²⁹ Symptom clusters refers to the experience of several concurrent symptoms,¹¹⁶ and such clusters may complicate symptom perception.¹ Lack of tools/materials (e.g. patients without scale for weight monitoring)²⁸ poses additional barriers to symptom perception.

Factors with inconsistent impact on HF symptom perception

Age, sex, level of education, patient experiences of living with HF, comorbidities, cognitive impairment, depression as well as symptom progression/severity are inconsistently associated with HF symptom perception.

Sociodemographic factors

Results are inconsistent with regard to the relationship between older age and symptom perception. Several studies have demonstrated that older patients experience more difficulty in symptom perception.^{10, 16, 27, 46, 66, 96, 98, 104, 107} Some reported that older patients are challenged to discriminate HF from age-related changes.^{89, 95, 98} Furthermore, older persons perceive lower symptom severity,⁵⁰ are less likely to detect, interpret¹⁰⁴ or report dyspnoea.⁴⁵ However, younger patients appear less able to detect changes in thoracic fluid.¹⁰² Similarly, there is no clear association between age and either somatic awareness,¹⁷ body awareness,^{44, 95} monitoring activities^{24, 29, 39, 66} or symptom recognition.³⁶ There is no consensus on age as a determinant of symptom perception.^{24, 29, 46}

With regard to the role of sex on symptom perception, one study found better HF symptom interpretation in men compared to women.¹⁰⁵ However, other studies failed to identify sex differences in body awareness,^{44, 95} symptom awareness,¹¹⁰ sign/symptom change recognition,³⁶ attribution of symptoms,^{37, 48} symptom monitoring and treatment-seeking,²⁹ or in detecting changes in thoracic fluid levels.¹⁰² Furthermore, sex did not predict symptom monitoring.²⁴

Person-related factors

Data on the impact of educational level are inconsistent. One study has found that education did not predict symptom monitoring²⁴ while others suggest that higher educational levels facilitate symptom recognition.^{17, 36}

Patient experiences of living with HF have been proposed to affect symptom perception. Longer disease duration was associated with increased somatic perception,¹⁰³ symptom recognition²¹ – as experience may facilitate symptom interpretation.¹⁰ Also, prior personal experience with the situation and situation awareness seem to influence mental simulation.⁷⁵ Another study failed to identify a relationship between HF duration and thoracic fluid detection.¹⁰²

Condition-related factors

Comorbidities may reduce patients’ ability to identify HF symptoms.^{3, 74, 107, 111} Sensory problems (e.g. hearing loss,⁹⁹ impaired vision)^{10, 99} and disturbed body balance¹⁰ hamper symptom monitoring and recognition. Fatigue and sleepiness, may negatively affect symptom monitoring,¹⁰ recognition and interpretation.^{37, 75} Again, one study failed to identify an association between comorbidities and perception of thoracic fluid accumulation.¹⁰²

Regarding cognitive impairment, some studies indicate cognitive impairment results in poor symptom recognition and interpretation.^{1, 10, 98, 99, 109–111} In contrast, some studies report no relationship between cognition and either symptom monitoring,²² thoracic fluid detection¹⁰² or symptom recognition.²⁶

Regarding depression, compared to HF patients without depressive symptoms, patients with depression are less likely to monitor body weight (P=0.041).⁴⁷ Depression also appears to hamper symptom recognition,^{75, 111} while mania, alexithymia and psychotic illness may diminish symptom perception.¹⁰⁸ However, other studies have found no relationship between depression and either body awareness⁴⁴ or thoracic fluid detection.¹⁰² Moreover, others reported contrasting results, with anxiety and depression associated with even increased symptom perception,¹⁰⁸ likelihood to report dyspnoea⁴⁵ and symptom recognition.¹¹⁰

For symptom progression/severity, some authors have reported that slowly progressing symptom severity impairs somatic awareness¹⁷ and symptom recognition.^{3, 17, 73, 107} Study results based on functional performance data (i.e. New York Heart Association (NYHA) class), however, have been heterogeneous. Several studies report that worse functional ability (higher NYHA class) is associated with increased somatic perception¹⁷ and symptom recognition,³⁶ yet others report no association with symptom monitoring,²⁴ decreased symptom recognition⁴⁸ and no difference in thoracic fluid detection.¹⁰²

In summary, while a substantial number of factors have been identified in relation to symptom perception (Table 3), the key drivers of symptom perception have yet to be determined.

Table 3.

References relating to symptom perception factors.

Authors, year, country, type of publication	Design, methods, symptom perception metrics	Main aim of the study	Sample size (main characteristics) OR Number of included articles (main characteristics)	Facilitators to symptom perception	Barriers to symptom perception	Neutral factors not reported to be related to, associated to or predictive of symptom perception
Qualitative studies
Buck et al.,⁸⁸ 2017, USA, journal article	Interviews guided by the situation-specific theory of HF self-care, iterative thematic analysis	Qualitatively examine how HF patient and informal caregiver dyads mutually engage in managing the patient’s HF at home	N=54 persons (27 dyads, mean age patients 76.6±9.6, caregivers 64.12±14.3, 56% male patients, 26% male caregivers)	Caregivers’ identification of patient symptoms; alerting patients about symptoms and taking action to respond to symptoms	Not described
Culjis,⁶⁶ 2013, USA, dissertation	Interpretive qualitative study, thematic analysis	Describe the lived experiences of older men with HF who are managing symptoms near end-of-life, describe and learn how older men manage symptoms	N=30 persons (n=15 older men, age range 75–95, veterans with late stage HF receiving palliative care all in NYHA III/IV; n=15 caregivers, 93% female)	Not described	Old men (88–95) less vigilant in monitoring activities (weight, diet, symptom recognition) than younger older men (75–82)
Reeder et al.,⁷³ 2014, USA, conference abstract	Semi-structured interviews	Explore patients’ perspectives of scenarios of deteriorating symptoms leading to hospitalisation for acute decompensated HF	N=60 hospitalised for acute decompensated HF (main characteristics not described)	Early warning signs or sudden onset impacted symptom recognition	Not described
Riegel et al.,⁷⁵ 2013, USA, journal article	Qualitative descriptive approach	Explore the process used by adults with chronic HF to make decisions about their symptoms	N=36 (age range 40–98, 50% male, 95% NYHA II/III)	Those who recognised the importance of the situation at hand and that a decision was needed were more likely to simulate options mentally and take actionMental simulation seemed to be based on situation awareness and was influenced by prior personal experience with the situation	Individuals who recognised a symptom but not its importance were unlikely to describe mentally simulating a plan of action. Sleepiness and depression affected decision making by confounding symptom recognition
Riegel and Carlson,⁷⁴ 2002, USA, journal article	Structured interview, content analysis	Explore how HF influences patients’ lives, assess how they perform self-care, and determine how their life situation facilitates or impedes HF self-care	N=26 (mean age 74.4±10.05, 65% male, 73% NYHA II/III)	Not described	Comorbidities: trouble determining if a particular symptom was related to HF, perhaps because of other diagnoses
Winters,⁸⁹ 1999, USA, journal article	Qualitative study with interpretive approach, semi-structured interviews	Describe the uncertainty experienced by men and women with HF and to extend the theoretical understanding of uncertainty in chronic illness	N=22 (age range 38–88, 68% male, 86% NYHA II/III)	Not described	Thoughts about aging influenced symptoms recognition.Some attributed fatigue and dyspnoea with exertion to the aging process
Observational studies
Baas et al.,⁴⁴ 2004, USA, journal article	Two prospective longitudinal studies, body awareness questionnaire	Describe body awareness in 90 persons with HF or after transplant	N=90 (n=38 HF persons, HF subsample: mean age 51.8, 50% male, LVEF 27%)	Not described	Not described	No significant differences for age or sex groups.No relationship with positive moods and negative emotional states
Carlson et al.,²¹ 2001, USA, journal article	The self-management of HF questionnaire	Describe HF self-care abilities and the difficulties that persons with HF experience in practicing self-care and compare those newly diagnosed with HF with those experienced with the diagnosis (>2 months)	N=139 patients (mean age 69.27±13, 53% male, 61% NYHA II/III)	Experience in living with HF improved confidence to recognise signs and symptoms if they occurred (P=0.04)	Patients newly diagnosed with HF had more difficulty recognising their symptoms as being related to HF (P<0.001)
Dolansky et al.,²² 2016, USA, journal article	Daily weighing adherence, weight gain symptom awareness and management behaviour (self-care of HF index v.6.2)	Examine whether cognition is associated with adherence to daily weighing and weight gain incidence and explore self-reported symptom perception and management when a weight increase occurs	N=301 patients (mean age 68.7±9.7, 60% male, 85% NYHA II/III)	Not described	Not described	None of the cognitive domains (baseline attention, executive function, memory) predicted adherence to daily weighing
Gallagher,²⁴ 2010, Australia, journal article	Symptom monitoring tool determining frequency of monitoring five key HF symptoms (fatigue, shortness of breath at rest/during activities, weight, swelling)	Determine the level of self-management and frequency of symptom monitoring and factors associated in patients with moderate severity HF living in the community	N=63 patients recently admitted or enrolled in treatment for heart failure (mean age 78.38±8.54, 57% male, 57% NYHA II)	The frequency of monitoring at baseline predicted symptom monitoring at one month (OR 9.18, CI 2.15–39.3). The model explained 31% of the variance in symptom monitoring (Cox and Snell R²=0.31)	Not described	Age, gender, education in years, symptom severity, number of comorbid illnesses, self-efficacy for self-management, sense of coherence
Harkness et al.,²⁶ 2014, Canada, journal article	Self-care of HF index v.6.2	Determine whether mild cognitive impairment is associated with self-care management in a sample of community dwelling older patients with HF	N=100 patients (mean age 72.4±9.8, 68% male, 50% NYHA II)	Not described	Not described	No differences in engagement of self-care management behaviours related to symptom recognition relating to mild cognitive impairment
Jurgens,²⁷ 2006, USA, journal article	The HF somatic awareness scale	Explore relationships among somatic awareness, uncertainty, symptom pattern, age, sex, history of HF, and care-seeking delay patterns among patients with acute HF	N=201 patients hospitalised for HF symptom management (mean age 70±12, 56% male, 61% NYHA II/III)	Acute symptom duration positively correlated with HF somatic awareness (r=0.256, P<0.01)Uncertainty correlated with HF somatic awareness (r=0.361, P<0.01)	Older age negatively correlated with HF somatic awareness(r=−0.186, P<0.05)
Jurgens et al.,⁴⁵ 2016, USA, conference abstract	Secondary analysis of data from two prospective cohort studies, the HF somatic perception scale dyspnoea subscale	Identify clinical and psychosocial factors related to the presence or absence of dyspnoea among patients with chronic HF	N=274 patients (mean age 55.4±13.6 62.8% male, 76% NYHA III/IV)	Being married or partnered (OR 2.07; P=0.03),having NYHA III/IV versus II class (OR 2.90; P<0.01) and anxiety (OR 1.30 per point; P<0.01)increased likelihood to report dyspnoea	Older age (OR 0.96 per year; P=0.02) decreased likely to report dyspnoea
Jurivich et al.,²⁸ 2001, USA, conference abstract	Five short questions regarding weight management	Examine barriers to weight management in chronic HF patients	N=153 HF cognitively intact frail patients (sample characteristics non described)	Not described	Lack of a home scale
Kato et al.,²⁹ 2011, Japan, conference abstract	Five items from the modified version (for Japan) of the European heart failure self-care behaviour scale to measure daily weighing, and contacting healthcare professional as HF symptoms increase	Clarify which factors can be related with poor behaviours for symptom monitoring and treatment-seeking among Japanese patients with HF	N=135 patients (mean age 62.8±13.7 70% male, mean LVEF 42.3±17.2%)	Not described	Younger age (standard partial regression coefficients (sβ)=−0.22, P=0.01), no prior hospitalisation for HF (sβ=−0.21, P=0.02), and preserved LVEF (sβ=0.22, P=0.01) were independent predictors for poor symptom monitoring and treatment-seeking behaviours.Inadequate knowledge on HF was also associated with the poor behaviours (P=0.028).	Gender, aetiology of HF, diabetes mellitus or chronic kidney disease were not related to the behaviours
Lee et al.,⁵⁰ 2015, Taiwan, journal article	Fluid overload symptoms scale	Develop and test the reliability and validity of a scale about fluid overload symptoms in patients with HF	N=56 patients (mean age 71.02±13.61, 60% male, 77% NYHA II/III)	Not described	Older patients tend to have lower perception of symptom severity
Lee et al.,⁴⁶ 2017, USA, conference abstract	The self-care of HF index v.7.1	Identify determinants of symptom perception in patients with HF	N=349 HF community-living adults (mean age 62±13.8, 69% male)	Younger age, longer duration of HF (>1 year), higher HF self-care maintenance, and higher symptom perception confidence were determinants of HF symptom perception. These factors explained 48.3% of symptom perception variance (P<0.001)	Older age, newly diagnosed patients with evidence of poor treatment adherence and patients with low self-care self-efficacy are determinants of poor symptom perception
Makaya et al.,⁴⁷ 2013, Japan, conference abstract	European heart failure self-care behaviour scale	Evaluate the impact of depressive symptoms on self-care behaviour in HF patients	N=187 patients (mean age 66.7±13.9, 64% male)	Not described	Depressed patients had poorer self-monitoring of body weight (P=0.041) than those without depression
Samir and Nour,³⁶ 2011, Egypt, journal article	Self-management of heart failure tool	Describe HF patients’ abilities to manage their disease	N=120 patients (60% of patients’ age ranged 50–60, 67% men, 64% NYHA II/III)	Differences between NYHA class and recognising change with higher recognition in NYHA III (P=0.037) and in education with higher recognition in diploma and university graduates (P=0.05)	Less recognising change in symptoms for those living alone comparing with those living with others (P=0.014)	No statistical difference in recognising change in symptoms regarding sex or age
Sethares,⁴⁸ 2009, USA, conference abstract	The HF somatic awareness scale, the modified response to symptoms questionnaire	Describe correlations between symptom severity, uncertainty and cognitive and emotional reasons for delay in seeking treatment for symptoms of HF	N=123 chronic HF subjects with acute HF decompensation (mean age 75.8±12.3 54% male)	Not described	Symptom severity was correlated with not recognising the importance of symptoms (r=0.21, P=0.05)	No gender differences in attribution of symptoms
Sethares,³⁷ 2008, USA, conference abstract	The HF somatic awareness scale, the modified response to symptoms questionnaire	Describe symptom severity, attribution and the effect of symptom severity and attribution on delay in seeking treatment for symptoms of HF	N=68 chronic HF subjects (mean age 74.3±14.2, 53% male)	Not described	Tiredness might confound proper interpretation of HF symptoms	Men and women did not differ in symptom attribution (P=0.26)
van der Wal et al.,³⁹ 2007, The Netherlands, journal article	Revised HF compliance scale	Assess compliance with medication, diet, and daily weighing	N=954 patients hospitalised for symptomatic HF (mean age 71±11, 62% male, 96% NYHA II/III)	Not described	Older patients (⩾65 years) forget to weigh more often (30% older vs. 15% younger, P⩽0.01)
Mixed-methods studies
Evans,¹⁰³ 2016, USA, Dissertation	The HF somatic perception scale	Examine somatic awareness and self-symptom recognition in stage D HF patients, comparing patients newly diagnosed with HF to those with chronic HF	Stage D HF patients newly diagnosed (n=9, ⩽2 years) and chronic HF patients (n=11, >2 years)(mean age 61±9, 55% male)	Length of time from diagnosis was positively correlated with the HF somatic perception total score (r=0.53, P=0.02)	Not described
Jurgens et al.,³ 2009, USA, journal article	The HF somatic perception scale, the modified response to symptoms questionnaire	Describe contextual factors related to symptom recognition and response among elders hospitalised with decompensated HF	N=77 (mean age 75.9±7.7, 52% male, 81% NYHA III/IV)	Not described	Comorbid illness such as chronic lung disease and obesity, incorrect symptom attribution, and a gradual progression of symptom severity were factors hampering the identification of the HF symptoms in a subgroup of n=10
Riegel et al.,¹⁰⁴ 2010, USA, journal article	Sample divided at the median to compare younger older patients, Borg measure of perceived exertion and 100 mm VAS for shortness of breath	Assess whether aging is associated with less ability to detect and interpret afferent physiological information	N=29 HF persons (mean age 68.7±14.4, 72% male, 59% NYHA II)	Not described	Older patients (⩾73 years) had more difficulty in detecting and interpreting shortness of breath than younger patients
Riegel et al.,¹⁰⁵ 2010, USA, journal article	The self-care of HF index v.4	Describe HF self-care in men and women and to identify gender-specific barriers and facilitators influencing HF self-care	N=27 (mean age 68.7±14.7, 70% male, 59% NYHA II)	The men were better than the women at interpreting their symptoms as being related to HF and in initiating treatment	Not described
Riegel et al.,¹⁰² 2018, USA, journal article	The HF somatic perception scale, thoracic fluid accumulation measured with an implantable cardioverter defibrillator (OptiVol)	Explore symptom perception in patients with chronic HF: to evaluate the accuracy of HF patients’ abilities to detect changes in fluid retention, to explore factors associated with inaccurate detection	N=36 HF outpatients, n=18 with OptiVol data available for analysis (mean age 64±15.2, 67% male, 57% NYHA III)	Not described	Those with a mismatch were younger (53.9±15.2 vs. 72.5±7.9 years, P=0.004)	No differences between the groups in sex, depression, Charlson comorbidity index scores, cognition scores, Iowa gambling task decision-making scores, symptoms or symptom variability, duration of HF, and weight monitoring frequency
Reviews, conceptual framework and theory
Evans,⁹⁵ 2016, USA, journal article	Integrative review	Understand how symptom recognition impacts healthcare utilization in adult patients with HF	N=26 articles, 10 reported as descriptive or qualitative studies, 13 reported as observational designs, 1 RCT, 2 systematic reviews	Not described	Older adults have difficulty differentiating symptoms of HF from age-related changes	Sex not associated with any significant differences in symptom recognition. No difference in body awareness when examined for age, sex and treatment
Falk et al.,⁹⁶ 2013, Sweden, journal article	Integrative review	Explore and summarise the current literature examining self-reported symptoms, illness experience, and self-care management in older patients with HF	N=23 articles, 5 qualitative designs, 18 cross-sectional or pre-post test designs	Not described	Limited HF knowledge undermined the importance of regular symptom monitoring. Older patients have more difficulty in detecting and interpreting symptoms of dyspnoea
Herber et al.,⁹³ 2017, Germany, journal article	Qualitative meta-summary	Integrate the findings of qualitative studies pertaining to barriers and facilitators to self-care	N=31 articles, 23 qualitative, 8 mixed-methods	Worsening symptoms acted as a facilitator in some patients and led to an increase in vigilance. Men were better than women at interpreting their symptoms as being related to HF	Not described
Lam and Smeltzer,¹⁶ 2013, USA, journal article	Integrative review	Examine research to date on self-reported patterns of symptom recognition and treatment-seeking behaviors in HF patients	N=14 descriptive studies, 7 retrospective, 7 prospective	Not described	Older age groups were less likely to recognise symptoms
Lee and Riegel,¹⁷ 2017, USA, journal article	Integrative review	Describe the research conducted on HF symptom perception to further understanding of this new concept	N=21 studies, 9 descriptive studies, 7 two-group randomised studies, 3 mixed-methods, 2 qualitative studies	Those living with others recognised changes in signs and symptoms better than those who lived alone (P=0.014). Those with college education recognised symptoms better. NYHA (r=0.35, P=0.002), number of hospital admissions (r=0.42, P<0.001) and cardiac-related admissions within a 6-month period (r=0.36, P=0.002) positively correlated with somatic perception. Higher uncertainty positively correlated with awareness of somatic changes (r=0.36, P<0.001) Smaller symptom duration (less than 72 hours) more likely to be aware of somatic changes (r=0.26, P=0.001)	Age negatively correlated with somatic awareness (r=−0.19, P=0.015) Gradual symptom progression as a barrier to symptom detection
Moser and Watkins,¹⁰ 2008, USA, journal article	Conceptual framework	Addressing the complex set of factors that influence decisions among patients with HF		Experience is necessary for patients to interpret their symptoms correctly	Cognitive impairment may contribute to failed symptom perception, recognition and interpretation. Daily weighing is difficult for those with impaired vision and balance. Elderly individuals might perceive symptoms less intensely than younger people. Increased daytime sleepiness interferes with ability to monitor symptoms. Chronic lung disease, depression, neuropathy make symptom interpretation difficult
Riegel et al.,¹ 2016, USA, journal article	Situation-specific theory	Describe the revised, updated situation-specific theory of HF self-care	85 Articles	Not described	Older patients have issues with sensing and interpreting early symptoms. Age-related impairment in interoception has been suggested as one mechanism for poor symptom perception. The sheer volume of symptoms experienced complicates symptom perception. Persons with mild cognitive impairment have difficulty in recognizing symptoms of an exacerbation
Woods et al.,⁹⁸ 2016, Australia, Journal article	Narrative literature review	Identify and analyse the literature on HF patients’ experiences of non-pharmacological self-care	N=18 papers, 14 primary articles (6 quantitative studies, 5 qualitative, 3 mixed-methods studies) and 4 literature reviews	Not described	Poor self-care monitoring in persons aged >75, elderly have problems with sensing and attributing worsening HF symptoms to their condition. Relating to cognition, some patients were deemed to be unaware of their worsening symptoms
Zavertnik,⁹⁹ 2014, USA, journal article	Integrative review	Examine the evidence specific to self-care in older adults, 65 years or older, with HF and to indicate best nursing practice interventions for use in this population	N=9 articles, 3 RCT, 2 non-RCT trials, 4 qualitative studies	Not described	Hearing and vision loss and decreased cognition impact older patients’ ability to attend to internal physical symptoms and may result in poor early symptom detection
Non-reported study designs
Dickson et al.,¹⁰⁹ 2007, USA, journal article		Explore cognitive deficits known to exist in persons with HF		Not described	Deficits in memory, attention, and executive function may impair the perception and interpretation of early symptoms
Jurgens et al.,¹⁰⁷ 2010, USA, journal article		Discuss the relationship between self-care and HF symptom management and to provide nursing strategies for assessment and promotion of self-care in older adults with HF		Not described	Sedentary lifestyles may limit the experience or perception of dyspnea or fatigue. An insidious increase in chronic symptoms may also make a change in severity difficult to detect. Comorbid illness complicates determining the source and meaning of symptoms
Riegel et al.,¹¹⁰ 2011, USA, journal article		Review what is known about HF self-care in terms of predictors and outcomes, and to discuss their implications on clinical practice, public health and policy		Anxiety and depression have been suggested to increase somatic awareness. Individuals with high negative affectivity are thought to be internally focused and more likely to notice somatic and visceral changes including early HF symptoms	Comorbidities and neural deficits may affect symptom monitoring and interpretation	No detection of difference of awareness of HF symptoms between men and women
Rushton et al.,¹¹¹ 2011, UK, journal article		Explore challenges of comorbidity by taking a look at the care of HF patients		Not described	Comorbidity impacts symptom recognition and makes difficult to distinguish what symptom relates to which condition. Depression can delay symptom recognition
Skotzko,¹⁰⁸ 2009, USA, journal article		Non described		Depressive disorders, anxiety disorders, personality disorders (histrionic, borderline, dependent) may be associated with amplification of perception of HF symptoms	Mania, alexithymia, chronic psychotic illness may be associated with diminished perception of chronic HF symptoms

Table 3 provides a summary of the study characteristics of all articles included reporting on factors related to symptom perception.

HF: heart failure; LVEF: left ventricular ejection fraction; NYHA: New York Heart Association classification; OR: odds ratio; RCT: randomised controlled trial; v: version.

HF symptom perception instruments

HF symptom perception instruments intend to measure one or several dimensions of HF symptom perception (Table 4). Several instruments used for HF self-care assessment contain items related to symptom perception dimensions.^{13, 14, 51, 53, 59, 60} The 39-item self-care of heart failure index v.7.2 contains the 11-item symptom perception subscale dedicated to HF symptom perception. This subscale aligns with the self-care situation-specific theory definition of symptom perception⁵¹ and covers all dimensions of the HF symptom perception definition. It comprises nine items on monitoring behaviours and two symptom recognition items, and has demonstrated adequate construct validity using a two-factor model (CFI 0.96, RMSEA 0.050, 90% CI 0.039–0.062) and good internal consistency (multidimensional scale global reliability index 0.85).⁵¹

Table 4.

HF symptom perception instruments and related symptom perception dimensions.

Instrument	Body observation		Body analysis
	Body listening	Monitoring signs	Recognising symptoms	Interpreting symptoms	Labelling symptoms¹
	Being aware there is a change			Assigning meaning to the change⁸⁰
Heart failure self-care instruments
Self-care of heart failure index v. 6.2¹³		×	×	×
European heart failure self-care behaviour scale¹⁴		×
Self-care of heart failure index v. 7.2⁵¹	×	×	×	×	×
Caregiver contribution to heart failure self-care⁵³	×	×
Self-management of heart failure tool⁵⁹			×	×	×
Caregiver contribution to self-care of heart failure index⁶⁰		×	×	×
Instruments related to symptom perception concepts
Heart failure somatic awareness scale⁵⁵	×	×
Heart failure somatic perception scale^{56, 58}	×	×
Body awareness questionnaire⁴⁴	×
Revised heart failure compliance scale³⁹		×
Self-evaluation of symptoms, signs and compliance to therapy for heart failure surveillance³²	×	×
Modified response to symptoms questionnaire³			×	×
Dyspnoea visual analogue scale⁶³		×
Heart failure self-monitoring instruments
Fluid overload symptoms scale⁵⁰	×	×
HeartMapp⁵²		×
Evaluation scale for self-monitoring by patients with chronic heart failure⁵⁴	×	×	×	×
Heart failure symptom tracker (HFaST)⁵⁷	×	×
Weight management scale⁶¹		×
Heart failure symptom-tracker mobile application⁶²	×	×
Heart failure monitoring instruments¹¹²		×
Application for self–monitoring and interpreting HF signs and symptoms¹¹³	×	×	×	×
Heart health diary¹¹⁴	×	×

Other instruments relate to concepts of symptom perception. The HF somatic awareness scale⁵⁵ and the HF somatic perception scale^{56, 58} measure patient awareness of signs and symptoms and perceived symptom severity. The body awareness questionnaire includes a scale on body attentiveness that has been tested in patients with HF.⁴⁴ The revised HF compliance scale includes an item on daily weighing.³⁹ The self-evaluation of symptoms, signs and compliance to therapy for HF surveillance identifies worsening HF symptoms and discriminates between chronic and acute volume overload.³² The modified response to symptoms questionnaire contains items related to the cognitive response to symptoms.³ The dyspnoea visual analogue scale uses a 100 mm visual analogue scale to quantify perceived dyspnoea severity. In the latter, meaningful changes (i.e. a little less or a little more difficulty) correspond to 21.1 mm (95% CI 12.3–29.9 mm).⁶³

Nine HF self-monitoring instruments were found.^{50, 52, 54, 57, 61, 62, 112–114} The evaluation scale for self-monitoring by patients with chronic HF measures self-monitoring.⁵⁴ The heart health diary was developed to monitor common signs and symptoms of HF (i.e. weight, blood pressure, pulse, blood sugar, fatigue, shortness of breath, cough, oedema and chest pain).¹¹⁴ We identified several mobile health applications:^{52, 62, 113} HeartMapp can be used to monitor weight and vital signs,⁵² the HF symptom-tracker mobile application was designed to monitor weight and symptoms and was tested for acceptability in patients older than 60 years of age,⁶² another smartphone application for self-monitoring and interpreting HF signs and symptoms has acceptable usability scored in 75-year-old and older adults with HF.¹¹³ Other instruments focusing on specific HF signs and symptoms are the fluid overload symptoms scale,⁵⁰ weight management scale⁶¹ and HF monitoring instruments¹¹² to facilitate HF symptom recognition and reporting of dyspnoea and weight gain to providers. The HF symptom tracker (HFaST) supports ongoing evaluation of symptom changes over the previous 24 hours compared to usual patient experiences.⁵⁷

Discussion

This scoping review maps the literature on HF symptom perception to report on definition, description, related factors and instruments, and updates the state of the science provided in previous reviews. Importantly, HF symptoms often undetected by patients lead to negative health sequelae.¹⁶

In line with previous reviews, this scoping review highlights facilitators of HF symptom perception including more prior HF hospitalisation, higher levels of illness uncertainty and living with others.¹⁷ We report further that both self-care maintenance and symptom perception confidence facilitate symptom perception, while symptom clusters represent a barrier to accurate symptom perception. Importantly, this scoping review identified sociodemographic, person-related and condition-related factors with inconsistent findings across studies with regard to their impact on symptom perception. Younger age,⁴⁶ higher education,¹⁷ longer duration of HF,⁴⁶ shorter symptom duration,¹⁷ worse functional class¹⁷ were previously reported as facilitators; aging,¹⁷ comorbid conditions,¹⁷ gradual symptom progression¹⁷ were previously reported as barriers. The greater number of references included in this scoping review and the different dimensions of HF symptom perception considered may have allowed these findings.

This review reports on several studies that did not identify a relationship between sociodemographic factors (i.e. age and sex) and HF symptom perception.^{36, 44} Several studies on the relationship between age and symptom perception are reported with conflicting results. Concerning sex, only one study reported men to be better than women in symptom interpretation,¹⁰⁵ while five studies^{24, 29, 36, 44, 48} – all with larger sample sizes – report no relationship between sex and symptom perception. Also, person-related factors such as education were not found to be related to symptom perception.²⁴ Patient experiences of living with HF seem to facilitate symptom perception,^{21, 46, 103} but one study found no relationship between HF duration and thoracic fluid detection.¹⁰² Yet we know that congestion is not readily detected by patients.¹¹⁷ Similarly, condition-related factors such as comorbidities and cognition were not reported to be associated with patients’ detection of thoracic fluid accumulation.¹⁰² With regard to comorbidities, sensory problems and fatigue/sleepiness that are plausible barriers to symptom perception negatively affect symptom perception.^{10, 75} None of the primary studies included in our scoping review^{22, 26, 102} found any relationship between cognitive impairment and symptom perception. Further research should elucidate the role of depression as well as symptom progression/severity in symptom perception. Overall, further research is needed regarding the impact of sociodemographic, person-related and condition-related factors on symptom perception to determine a patient risk profile.

Several facilitators and barriers of HF symptom perception converge with the broader literature on HF self-care⁹ as well as factors relating to self-care in chronic conditions.¹¹⁸ In line with findings of this scoping review, confidence and social support have been reported to facilitate HF self-care⁹ and self-care in other chronic conditions.¹¹⁸ Habits integrated into daily routines are important for self-care¹¹⁸ – that may relate to HF self-care maintenance thereby facilitating symptom perception (e.g. weighing oneself regularly). Experience and skills, as well as functional and cognitive abilities, influence HF self-care⁹ and self-care in chronic illness more broadly.¹¹⁸ In the present review, prior HF hospitalisation facilitates symptom perception. Furthermore, greater experience of living with HF, as well as cognitive impairment, are inconsistent factors of symptom perception – which contrasts with the broader literature.¹¹⁸ Nevertheless, disparate results across studies on symptom perception factors neither provide insight into experience nor cognitive abilities as a potential facilitator of symptom perception.

Overall, we identified one instrument⁵¹ measuring all dimensions of HF symptom perception, yet further psychometric testing in other HF patient samples and additional languages seem warranted.

For other chronic conditions, these results may contribute to address current research gaps related to self-care monitoring,¹¹⁹ describing symptom perception challenges and related behaviours. As in other chronic conditions,¹²⁰ HF symptom perception is related to emotional distress which may guide symptom response.⁸⁰ Symptom response is challenging in other chronic conditions such as atrial fibrillation¹²¹ and stroke.¹²² Some have postulated that difficulty interpreting non-specific symptoms results in delays in seeking care.^{121, 122} Definitions of HF symptom perception converge on the concepts of detecting and interpreting symptoms in chronic conditions.¹¹⁹

Limitations of this scoping review include the lack of a structured quality appraisal of included articles, which is appropriate for scoping reviews.¹⁹ A quality appraisal could be useful for supporting interpretation of data in further reviews. Also, we did not consider studies reporting on symptom intensity, severity or descriptions of distress relevant to be included as they do not directly relate to symptom perception within the HF self-care process.

Relative strengths of this review include the systematic searching process that included unpublished (grey) literature thus minimising publication bias. Including grey literature as well as conference abstracts allowed us to identify articles not yet published in August 2018 which we tracked for inclusion in this report. In particular, the first author (GCS) reran the search in August 2019 in the three major bibliographic databases (i.e. Medline, Embase, Web of Science) yielding the majority of the references included in the initial search. After screening the new references published in 2018 and 2019, five additional references^123–127 were identified. Importantly, the five additional references were not deemed to alter significantly the overall synthesis findings of the scoping review and are not included in this review as the screening deviated slightly from the structured systematic search process. Furthermore, references in multiple languages were included providing a comprehensive, broad and culturally inclusive perspective. References were screened and selected by independent reviewers and data charting as well as results reporting followed a structured, systematic way – helping to ensured internal validity.

Symptom perception in HF is established, has been described and well defined. Several symptom perception factors are known, and further work is needed to dissect the relative effect of factors and elucidate inconsistent results related to the facilitators and barriers to HF symptom perception. This will be important to determining patient risk profiles related to poor symptom perception. In addition, further work is needed on symptom perception measurement in HF for both research and clinical use. Deepening our understanding of symptom perception, its factors and measurement will be important for strengthening person-centered self-care support in HF and reducing negative health sequelae resulting from unravelled limitations to symptom perception.

Supplemental Material

Supplemental_material – Supplemental material for Symptom perception in heart failure: a scoping review on definition, factors and instruments

Supplemental material, Supplemental_material for Symptom perception in heart failure: a scoping review on definition, factors and instruments by Gabrielle Cécile Santos, Maria Liljeroos, Andrew A Dwyer, Cécile Jaques, Josepha Girard, Anna Strömberg, Roger Hullin and Petra Schäfer-Keller in European Journal of Cardiovascular Nursing

Footnotes

Acknowledgements

The authors would like to acknowledge Dr François Mooser for his support with administrative issues along the study and related to the submission of this work. GCS is grateful for expert feedback received during presentations of this work during doctoral seminars at the Institute of Higher Education and Research in Healthcare (IUFRS), University of Lausanne and during Swiss PhD in nursing science education (SPINE) doctoral days as well as during research seminars at the University of Applied Sciences and Arts Western Switzerland (HES-SO) School of Health Sciences, Fribourg.

Implications for practice

Heart failure symptom monitoring, recognising and interpreting is challenging for persons.

Persons’ characteristics can be detected to identify those at risk for poor heart failure symptom perception.

The self-care of heart failure index v.7.2 and its symptom perception subscale can be used to measure self-care and symptom perception in heart failure.

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was supported by the School of Health Sciences Fribourg, HES-SO University of Applied Sciences and Arts Western Switzerland (to GCS, PSK, JG) and county council Sörmland Sweden (to ML) to dedicate a part of their positions’ time to the scoping review.

Supplementary material

Supplementary material for this article is available online.

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