The symptom perception processes of monitoring, awareness, and evaluation in patients with heart failure: a qualitative descriptive study.

AIMS: Patients with heart failure (HF) experience various signs and symptoms and have difficulties in perceiving them. Integrating insights from patients who have engaged in the process of symptom perception is crucial for enhancing our understanding of the theoretical concept of symptom perception. This study aimed to describe how patients with HF perceive symptoms through the processes of monitoring, awareness, and evaluation and what influences the process. METHODS AND RESULTS: Using a qualitative descriptive design, we conducted in-person semi-structured interviews with a purposeful sample of 40 adults experiencing an unplanned hospitalization for a HF symptom exacerbation. We elicited how patients monitor, become aware of, and evaluate symptoms prior to hospitalization. Data were analysed using directed qualitative content analysis. One overarching theme and three major themes emerged. Patients demonstrated Body listening, which involved active and individualized symptom monitoring tactics to observe bodily changes outside one's usual range. Trajectory of bodily change involved the patterns or characteristics of bodily changes that became apparent to patients. Three subthemes-sudden and alarming change, gradual change, and fluctuating change emerged. Patients evaluated symptoms through an Exclusionary process, sequentially attributing symptoms to a cause through a cognitive process of excluding possible causes until the most plausible cause remained. Facilitators and barriers to symptom monitoring, awareness, and evaluation were identified. CONCLUSION: This study elaborates the comprehensive symptom perception process used by adults with HF. Tailored nursing interventions should be developed based on the factors identified in each phase of the process to improve symptom perception in HF.

Patient generated health data use in clinical practice: A systematic review.

BACKGROUND: Precision health calls for collecting and analyzing large amounts of data to capture an individual's unique behavior, lifestyle, genetics, and environmental context. The diffusion of digital tools has led to a significant growth of patient generated health data (PGHD), defined as health-related data created, gathered or inferred by or from patients and for which the patient controls data collection and data sharing. PURPOSE: We assessed the current evidence of the impact of PGHD use in clinical practice and provide recommendations for the formal integration of PGHD in clinical care. METHODS: We searched PubMed, Ovid, Embase, CINAHL, Web of Science, and Scopus up to May 2018. Inclusion criteria were applied and four reviewers screened titles and abstracts and consequently full articles. FINDINGS: Our systematic literature review identified 21 studies that examined the use of PGHD in clinical settings. Integration of PGHD into electronic records was extremely limited, and decision support capabilities were for the most part basic. DISCUSSION: PGHD and other types of patient-reported data will be part of the health care system narrative and we must continue efforts to understand its impact on health outcomes, costs, and patient satisfaction. Nursing scientists need to lead the process of defining the role of PGHD in the era of precision health.

Patterns of adherence to diuretics, dietary sodium and fluid intake recommendations in adults with heart failure.

BACKGROUND: Three behaviors advocated to minimize fluid-related hospitalizations in patients with heart failure (HF) are restricted sodium and fluid intake and consistent oral diuretic use. Adherence to behaviors intended to decrease risk of hospitalization is believed to vary over time, but surprisingly little research has addressed patterns of adherence in HF patients. OBJECTIVE: To describe patterns over time of 3 recommended self-care behaviors (i.e., diet, fluid intake, and diuretic dosing) in adults with HF and to determine how time and behavior influenced adherence rates. METHODS: We enrolled 24 adults hospitalized for a HF exacerbation and discharged on a loop diuretic into a descriptive, longitudinal pilot study. Over 3-months, diuretic use was measured using electronic event monitoring, and participants were telephoned regularly to assess sodium and fluid intake. Data were summarized for each 2-week intervals. RESULTS: The overall adherence rates were 42.4% for low sodium diet, 96.4% for fluid restriction, and 84.7% for the diuretic regimen. Early after hospital discharge, medication adherence was the highest, and dietary adherence was the lowest, but adherence to diet and diuretic use decreased significantly over time. CONCLUSION: Although participants were just discharged from the hospital after an acute exacerbation of HF, all three behavioral patterns decreased markedly over the 3-month follow-up period.

Psychometric Testing of the Revised Self-Care of Heart Failure Index.

BACKGROUND: Self-care is essential in people with chronic heart failure (HF). The process of self-care was refined in the revised situation specific theory of HF self-care, so we updated the instrument measuring self-care to match the updated theory. The aim of this study was to test the psychometric properties of the revised 29-item Self-Care of Heart Failure Index (SCHFI). METHODS: A cross-sectional design was used in the primary psychometric analysis using data collected at 5 sites in the United States. A longitudinal design was used at the site collecting test-retest data. We tested SCHFI validity with confirmatory factor analysis and predictive validity in relation to health-related quality of life. We tested SCHFI reliability with Cronbach α, global reliability index, and test-retest reliability. RESULTS: Participants included 631 adults with HF (mean age, 65 ± 14.3 years; 63% male). A series of confirmatory factor analyses supported the factorial structure of the SCHFI with 3 scales: Self-Care Maintenance (with consulting behavior and dietary behavior dimensions), Symptom Perception (with monitoring behavior and symptom recognition dimensions), and Self-Care Management (with recommended behavior and problem-solving behavior dimensions). Reliability estimates were 0.70 or greater for all scales. Predictive validity was supportive with significant correlations between SCHFI scores and health-related quality-of-life scores. CONCLUSIONS: Our analysis supports validity and reliability of the SCHFI v7.2. It is freely available to users on the website: www.self-care-measures.com.

Development and initial testing of the self-care of chronic illness inventory.

AIM: The aim was to develop and psychometrically test the self-care of chronic illness Inventory, a generic measure of self-care. BACKGROUND: Existing measures of self-care are disease-specific or behaviour-specific; no generic measure of self-care exists. DESIGN: Cross-sectional survey. METHODS: We developed a 20-item self-report instrument based on the Middle Range Theory of Self-Care of Chronic Illness, with three separate scales measuring Self-Care Maintenance, Self-Care Monitoring, and Self-Care Management. Each of the three scales is scored separately and standardized 0-100 with higher scores indicating better self-care. After demonstrating content validity, psychometric testing was conducted in a convenience sample of 407 adults (enrolled from inpatient and outpatient settings at five sites in the United States and ResearchMatch.org). Dimensionality testing with confirmatory factor analysis preceded reliability testing. RESULTS: The Self-Care Maintenance scale (eight items, two dimensions: illness-related and health-promoting behaviour) fit well when tested with a two-factor confirmatory model. The Self-Care Monitoring scale (five items, single factor) fitted well. The Self-Care Management scale (seven items, two factors: autonomous and consulting behaviour), when tested with a two-factor confirmatory model, fitted adequately. A simultaneous confirmatory factor analysis on the combined set of items supported the more general model. CONCLUSION: The self-care of chronic illness inventory is adequate in reliability and validity. We suggest further testing in diverse populations of patients with chronic illnesses.

A mixed methods study of symptom perception in patients with chronic heart failure.

BACKGROUND: Early heart failure (HF) symptoms are frequently unrecognized for reasons that are unclear. We explored symptom perception in patients with chronic HF. METHODS: We enrolled 36 HF out-patients into a longitudinal sequential explanatory mixed methods study. We used objectively measured thoracic fluid accumulation and daily reports of signs and symptoms to evaluate accuracy of detected changes in fluid retention. Patterns of symptom interpretation and response were explored in telephone interviews conducted every 2 weeks for 3-months. RESULTS: In this sample, 44% had a mismatch between objective and subjective fluid retention; younger persons were more likely to have mismatch. In interviews, two patterns were identified: those able to interpret and respond appropriately to symptoms were higher in decision-making skill and the quality of social support received. CONCLUSION: Many HF patients were poor at interpreting and managing their symptoms. These results suggest a subgroup of patients to target for intervention.

State of the Science in Heart Failure Symptom Perception Research: An Integrative Review.

BACKGROUND: Heart failure (HF) is a common condition requiring self-care to maintain physical stability, prevent hospitalization, and improve quality of life. Symptom perception, a domain of HF self-care newly added to the Situation-Specific Theory of HF Self-Care, is defined as a comprehensive process of monitoring and recognizing physical sensations and interpreting and labeling the meaning of the sensations. OBJECTIVE: The purpose of this integrative review was to describe the research conducted on HF symptom perception to further understanding of this new concept. METHOD: A literature search was conducted using 8 databases. The search term of HF was combined with symptom, plus symptom perception subconcepts of monitoring, somatic awareness, detection, recognition, interpretation, and appraisal. Only peer-reviewed original articles published in English with full-text availability were included. No historical limits were imposed. Study subjects were adults. Twenty-one studies met the inclusion criteria. Each study was categorized into either symptom monitoring or symptom recognition and interpretation. RESULTS: Although daily weighing and HF-related symptom-monitoring behaviors were insufficient in HF patients, use of a symptom diary improved HF self-care, symptom distress and functional class, and decreased mortality, hospital stay, and medical costs. Most HF patients had trouble recognizing an exacerbation of symptoms. Aging, comorbid conditions, and gradual symptom progression made it difficult to recognize and correctly interpret a symptom exacerbation. Living with others, higher education, higher uncertainty, shorter symptom duration, worse functional class, and an increased number of previous hospitalizations were positively associated with symptom recognition. CONCLUSIONS: Existing research fails to capture all of the elements in the theoretical definition of symptom perception.