SYMptoms in chronic heart failure imPACT on burden of treatment (SYMPACT): a cross‐sectional survey

Abstract

AimsThis study aimed to describe patient-reported symptoms and burden of treatment (BoT) experienced by patients with chronic heart failure (CHF). BoT describes the illness workload, individual capacity to perform that work, and resultant impact on the individual. Overwhelming BoT is related to poor quality of life and worse clinical outcomes. This research is the first to explore symptoms and BoT in people with CHF, in the UK. Methods and resultsThis is a cross-sectional questionnaire survey of CHF patients. Participants completed the Heart Failure Symptom Survey (HFSS; max score 10) and the Minnesota Living with Heart Failure Questionnaire (MLHFQ; max scores: physical 40, emotional 25, and total 105), which measured symptoms. BoT was measured with the Patient Experience with Treatment and Self-management (PETS; max score 100) questionnaires. Participant characteristics and questionnaire results were summarized using descriptive statistics. Relationships between symptoms and BoT, summarized by the workload and impact indices, were explored using Spearman's and Pearson's correlation coefficients together with scatter plots. The survey was completed by 333 participants, mean age of 71 (±13) years old. The majority (89%) were recruited from secondary care NHS trusts, and 25% were female. All types of heart failure were represented. Mean symptom scores were as follows: HFSS burden score: 2.4 (±2.1), and MLHFQ scores: physical score 20 (±12.4), emotional score 9.9 (±8.1), and total score 41.3 (±26.3). The highest mean PETS domain scores were exercise [51.3 (±24.7)], diet [40.3 (±22.7)], difficulty with healthcare services [39.9 (±21.3)], and physical and mental fatigue [36.0 (±25.7)]. Pairwise correlations were observed between HFSS scores and MLHFQ physical and emotional sub-scores with PETS workload and impact indices. Positive correlations were weak to moderate (0.326-0.487) between workload index and symptoms, and moderate to strong between impact index and symptoms (0.553-0.725). The P value was 0.006, adjusted by Bonferroni's correction. Conclusions Symptoms are associated with BoT in CHF patients. Although symptom burden was low, CHF patients reported higher levels of burden around self-care activities of exercise, diet, healthcare interaction, as well as physical and mental fatigue due to engagement with self-care regimens. Observed higher levels of burden were in key self-care areas for CHF and suggest areas where service delivery and support of CHF patients may be improved to reduce BoT. Clinicians could individualize their consultations by focusing on troublesome symptoms, as well as alleviating illness workload, which may better enable patients to live well with CHF.

Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self‐care work

“…These findings provide evidence that symptoms interact with a person's ability to participate in the self-care work, providing explanations into why PETS workload index scores were lower than expected (Austin et al, 2022), through the identification of intervening factors. All participants described situations where symptoms of CHF had made the work of illness management more difficult, where the more intense symptoms became, the more difficult selfcare work became.…”

“…In our previous work (Austin et al, 2022), validated tools measuring treatment burden were used in a sample of people with CHF where interactions with symptoms were explored. Symptoms were measured with heart failure symptom survey (HFSS) (Pozehl et al, 2006) and Minnesota living with heart failure questionnaire (MLHFS) (Bilbao et al, 2016; Rector, 1987).…”

Effect of Luhong formula on the cardiac rehabilitation of patients with chronic heart failure

“…The disease is often induced by improper diet, overwork, and repeated attacks of exogenous pathogens, among others. These factors result in conditions that can be explained by the TCM symptoms heart-Qi deficiency and heart-Yang deficiency[ 21 , 22 ]. Our study revealed that the curative effects of Luhong formula on TCM syndromes and cardiac function were significantly better in the research group than in the control group, indicating the significant advantages of Luhong formula in relieving CHF symptoms and improving cardiac function.…”

Development and Validation of a Kidney-Transplant Specific Measure of Treatment Burden

“…Thus, results may be less generalizable to patients receiving transplants at other centers, including centers outside the United States. Interestingly, treatment burden as measured by the PETS has been found to be relevant to patients with chronic health conditions in other countries with different healthcare systems, including the United Kingdom and Norway [ 37 – 39 ]. Third, our cohort had relatively low representation of racial/ethnic minorities and the less formally educated, and future studies should include a more diverse cohort.…”