Heart Failure Patients: User Journey

• Congestion is crucial in detecting the healthcare conditions of people suffering from heart failure.
• Congestion is not that easy to detect especially if the patients only have minor symptoms.
• Congestion can affect the functionality of the heart and can lead to poor health conditions.

Diagnosis

• Getting physical examination is crucial to determine the level of heart congestion.
• Doctors usually check the patients' heart rate, blood pressure, weight, dyspnea, and edema.
• Patient's weight, symptoms of obesity, sleeping problems, sleep-disordered breathing (SDB), CHF-associated comorbidity are some of the conditions that indicate the progress of heart failure.
• Doctors also verify the patient's dyspnea, orthopnea, systemic edema, third heart sound, and jugular venous pressure to determine the functionality of the other organs.
• Other clinical tests used to get the clinical congestion score include the Stevenson classification, the Lucas score, the Rhode score, the EVEREST score, and the Gheorghiade score.
• However, the EVEREST score gives the most reliable results.

• Test are done frequently to verify the status of the patient.
• The patients are usually submitted to a lung ultrasound (LUS), as it gives the fastest and most reliable results, to determine whether the BNP or NT-proBNP hormones are necessary for the patient.
•  Chest X-rays are also done frequently to monitor the heart condition of the patient.
• When a patient is diagnosed with heart failure, they go through 3-phases: the transition phase of the left ventricular remodeling, the plateau phase, and early death.

Hospitalization

• Admitting patient that suffer from heart failure to the hospital is necessary to observe their condition.
• The multimodal congestion assessment is done upon admission, during the decongestion treatment, and before discharging the patient.
•  Clinical test are frequently done throughout the decongestion phase of the patient. Some of the most common tests include the EVEREST score, the quantitative dyspnea evaluation, plasma volume estimation, ultrasounds, echocardiography, and liver and kidney biomarkers. The patient is also regularly given varying doses of the BNP or NT-proBNP hormones.
• According to multiple studies, regularly monitoring the patient by using LUS and echocardiographies can reduce the risk of death and their re-hospitalization
• LUS tests are done to monitor the diuretic or vasodilator therapy to determine when the patient can be discharged.

Outpatient

• After getting discharged, the patient is required to visit a cardiologist, a general practitioner, or a HF nurse within 2 weeks of their discharge.
• This practice is important to avoid re-hospitalization or death.
• Clinical tests like looking at biological biomarkers, implantable hemodynamic monitoring, and/or lung bioimpedance monitoring are performed on the patients to supervise their health conditions after their discharge.
• If the patient's heart congestion starts getting worse, they need to visit their physicians to get an assessment.

Re-Hospitalization

• Based on studies, almost 35% of patients are getting re-hospitalized due to their heart failure problem.
• Healthcare institutions have started introducing patient-centered telemedicine to reduce the risk of hospital re-admission.
• Telemedicine allows a 24/7 patient monitoring by trained nurses and physicians in order to guide the patient in their recovery and prevent emergencies.
• The champion trial, used to treat hemodynamic congestion, gives better results to HF patients and also shows that it can reduce the re-hospitalization rate of patients.
• The patients who are re-admitted to the hospital are more susceptible to complications and dying.
•  Male patients, older patients, and psychologically unstable patients are more at risk of a re-hospitalization. Some other factors include avoiding a proper check-up by their physicians, the prescription of prognostic medications, and the consumption of alcohol.
• Patients suffering from sleep-disordered breathing (SDB) are also at risks of re-hospitalization.

People

•  Primary-care physicians and nurse practitioners are considered to be primary care providers for patients with congestive heart failure (CHF), and greet the patients outside of the hospital setting. They are considered to be the most constant support for heart failure patients and are the first line of defense at the beginning of patient's journey.
• Patients enrolled in telemedicine programs will most often communicate with community health workers who are tasked with "improving self-care and reducing readmissions in many chronic diseases". Telemedicine programs are usually administered either for prevention or aftercare following a heart failure when the patients are at home.
• During the hospital stay, heart failure patients usually interact with the following doctors: cardiologists, internists, echocardiographers, cardiovascular surgeons, neurologists, anesthesiologists, and emergency medicine physicians. Doctors will either manage the care of heart failure patients who were hospitalized due to the risks to their health, or perform surgeries to help with heart failure.
• Additionally, hospital stay also includes nurses, interns, residents, and family members. Nurses, interns, and residents will provide side care to heart failure patients, such as laboratory procedures, different smaller checks, pre-op and post-op procedures, etc.
•  Palliative care patients benefit heavily from family caregivers. The typical palliative care staff includes doctors, nurses, and psychologists who showcase "comfort-giving behaviors to maximize patient comfort" at the end of the patients' lives.
•  Insurers and pharmacists are also possible people involved in heart failure management process. Their involvement and the phases of their involvement depend on the type of insurance the person is using, and the type of medication needed to manage heart failure.

Tools

• According to the American Heart Association, heart failure patients are encouraged to use HF Path, a self management tool that "empowers heart failure patients to better manage and live with their condition."
• The tool is available as an app and teaches heart failure patients about heart failure and managing their health, helps them track their weight, medications, and symptoms, and connects them with other patients who have heart failure. It is used throughout the patient journey, and can be used to prevent heart failure as well as monitor progress after getting diagnosed with heart failure.
•  Heart Failure Society of America provides two different tools for heart failure patients. The first is an app that contains digital materials designed to "help providers integrate patient information into their practice", and the second one is a heart failure patient app that records symptoms, vital signs, and medications.
• The patient app can be used by both those who have already been diagnosed with heart failure as well as those who are worried about their health. Therefore, it can be used throughout the patient journey, and can be used to prevent heart failure as well as monitor progress after getting diagnosed with heart failure, much like the HF Path app.
•  Implantable devices for monitoring heart activity are also used to monitor heart activity. The main advantages of implantable devices include "the ability to track measures longitudinally over time, average these values over the course of a day and more accurately reflect a patient’s clinical status".
•  These tools are specifically used by patients after they've been diagnosed with heart failure and when they are discharged from the hospital, and are known as home monitoring devices.

Depression

• The prevalence of depression is very high in heart failure (HF) patients. A 2017 study found that as much as 48% of people diagnosed with HF suffer from depression, while a 2016 review determined that the aggregated point prevalence of depression is 21%, with a wide variation (from 9% to 60%) of the reported figures across different studies. Female HF patients experience higher levels of depression compared to males and whites have a higher incidence of depression compared to blacks.
• Depression is a major pain point because it negatively impacts the quality of life of HF patients. In fact, depression is a "strong predictor of short-term decreases" of quality of life, even after controlling for all other variables. Additionally, HF patients with depression tend to have poorer treatment outcomes than those without. The poor outcomes are likely to persist even after a treatment of selective serotonin re-uptake inhibitors (SSRIs) is administered.
• The reduced quality of life that is a result of depression can partially be explained by poor motivation of patients to take actions to better manage their condition. For example, depression in HF patients is associated with decreased medication adherence which has been shown to reduce the quality of life.

Anxiety

• Anxiety, while often overlooked by clinical studies, is another pain point of patients suffering from heart failure. Nearly 30% of patients have clinically significant anxiety, while 13% "meet diagnostic criteria for anxiety disorders"
• Anxiety leads to increased hospitalization and mortality rates of HF patients. Additionally, anxiety negatively impacts the quality of breath (it is often associated with shortness of breath) which sometimes leads to chest pain and panic. The chest pain and the physical feeling of panic are very similar to heart failure symptoms commonly experienced by these patients, which is why they seek hospital treatment, fearing that their disease is progressing.
• The problem of anxiety and depression is further exacerbated by the fact that these conditions are often under-diagnosed and under-treated in patients suffering from heart failure. There is very little research in the medical field on the best way to treat these conditions in that specific population. Therefore, anxiety and depression represent significant unmet needs of heart failure patients.

Multiple Illnesses

• The majority of patients suffering from heart failure also have other chronic conditions which need to be treated with medications. Therefore, they often report significant difficulties with differentiating the symptoms of heart failure from symptoms of other diseases and from side-effects of medications.
• According to the American Heart Association, "the average heart failure patient takes an average of seven prescription medications per day", more than a third of them also take herbal supplements and seven out of eight use over-the-counter medications. The risk of averse interactions between different drugs rises to as much as 82% when patients are taking seven or more medications during the same time period.
• Multiple illnesses are a major challenge for HF patients because they increase the difficulty of "managing complex medication regimes". Additionally, patients often feel that their other illnesses were not given equal attention during their treatment for heart failure. This has the potential to affect their feelings toward healthcare professionals, and can make patients feel like their entire identity is limited to their heart failure diagnosis.

Research Strategy