Abstract

Background: Long delays in seeking medical care are common in patients with worsening symptoms of heart failure (HF) and lead to longer lengths of hospital stay, increased healthcare costs, and increased morbidity and mortality. However, patient-reported reasons for delay have rarely been explored. Objective: To describe patient-reported reasons for delay in seeking medical care for worsening symptoms. Methods: As part of a clinical trial designed to reduce HF readmission and mortality for worsening symptoms, we administered the HF Symptom Response Questionnaire to all patients prior to intervention. The instrument measures reasons why patients delay seeking treatment. All patients had a recent hospitalization for HF, were community dwelling in a rural location, and had no cognitive impairments as measured with the Mini-Cog. Results: A total of 614 HF patients (59% male, NYHA class III/IV 35%, 19% without a high school education, mean age 66±13 years, median b-type natriuretic peptide level 186 pg/ml [25th percentile = 72, 75th percentile = 462] were studied. The most common reasons for not seeking early treatment were symptom uncertainty (62.4%), symptoms seem vague or came on too gradually (67.4%), symptoms slightly different from last episode (55.2%) and the symptoms didn’t seem to be serious enough (62.2%). Other reasons include embarrassment at seeking treatment (23.9%), not wanting to second guess the doctor (21.7%), financial concerns (19.9%), transportation issues (16.4%), and other (10.7%). Reasons given in the other category included afraid/don’t like doctors or hospitals, care of pets at home, family needs them, not wanting to bother others, denial/don’t want to know/fear of knowing, and weather. Conclusions: Despite experiencing worsening HF symptoms of such intensity that hospitalization is required, most patients do not perceive that symptoms are intense or certain enough to warrant action. In many, treatment seeking decisions are superseded by factors not related to symptom appraisal such as family obligations, fear or denial, and embarrassment. Education to improve response to worsening HF symptoms requires skills in symptom appraisal, and counseling to overcome personal barriers to seeking treatment.

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