Managing heart failure (HF) presents daily challenges for many patients. Reasons range from a lack of understanding about treatments to the inability to care for themselves due to symptoms. Clinicians increasingly recognize the difficulties faced by their heart failure patients and are taking measures to intervene.
HF affects 23 million people worldwide yet it remains an enigma to many who live with it. HF patients often have considerable knowledge deficits that limit their ability to manage their condition. One analysis found that study participants had difficulty remembering basic information about HF, attributed symptoms to other conditions, underestimated the importance of weight management or monitoring and lacked knowledge of other aspects of HF as well (Heart 2014; 100:716-721).
“Knowledge of heart failure is still remarkably poor in patients and caregivers,” says lead researcher Alexander Clark, PhD, of the University of Alberta in Edmonton in Canada. “The biggest deficits involve objective monitoring of symptoms, such as daily weights.”
Many people, for example, confuse heart failure with sudden cardiac death or a heart attack and few know the trajectory of the condition. “One-third of patients with HF think it’s going to get better,” he adds. “Few acknowledge the chronic nature of HF.”
Patients may wait several days after symptoms appear to seek help. By the time they reach the hospital, they are very sick. Clark says HF patients spend an average of 13 days in the hospital recovering. They also may not understand the importance of lifestyle changes.
“Heart failure happened over a period of time, and habits developed over time are very hard to break, especially if you don’t know what the impact of something is,” says Susan Beausoliel, RN, MS, of Partners HealthCare at Home, an agency offering in-home medical support services in Waltham, Mass.
She cites salt intake as an example. Many patients with HF are instructed to lower their sodium intake, but some understand that to mean removing the salt shaker from the table. They are unaware of the need to read food labels and avoid certain types of foods with high sodium content.
Support system crucial
Clark et al’s study found, and other experts agree, that the support of caregivers is key to treatment adherence. HF management regimens are often very complex, and as the condition progresses, support becomes even more crucial.
“HF requires a truly supportive environment, where patients may need help with activities of daily living, assistance with medications, doctor appointments,” says Biykem Bozkurt, MD, PhD, of Baylor College of Medicine in Houston. “They may have limitations with mobility because of shortness of breath, fatigue or congestion.”
Bozkurt considers living with advanced heart failure as debilitating as living with advanced cancer. Patients often need to make very drastic changes, such as changing or stopping employment and preparing for treatments. These changes are often not possible without the support of loved ones.
Medication compliance is another challenge. Patients with HF often have numerous comorbidities, such as diabetes, obesity and chronic obstructive pulmonary disease. “Taking 10 to 25 different medications each day is not uncommon,” says Clark, and caregivers can help patients understand and sort through those medications and other aspects of the treatment regimen.
Another vital contribution caregivers make is awareness of changes in patients’ conditions that may not be obvious to clinicians. “Providers may think a patient is doing well because he or she looks great at an appointment, but what they don’t see is how long it took to get dressed or what they look like on other days, or what’s in the cabinet or refrigerator,” Beausoliel says.
Home monitoring helps
Remote patient monitoring is one option that potentially can keep HF patients at home and avoid hospital stays. Partners HealthCare at Home, founded by Brigham and Women’s Hospital and Massachusetts General Hospital, uses home telemonitoring for many of its HF patients.
Patients who get the monitoring devices are those at risk for readmission or who have been readmitted over the past six months, have a fairly significant level of heart failure and have a willing caregiver who can ensure daily monitoring. Patients receive a device hooked to a blood pressure cuff and a scale. Every day, they put the blood pressure cuff on, stand on the scale and answer some questions. Their weight,