Heart Failure Clinics Often Missing Where They’re Most Needed: HFSA Report

In the United States, some of the areas in greatest need of heart failure care—based on disease prevalence and associated mortality—are those least likely to have clinics dedicated to managing it, according to a report from the Heart Failure Society of America (HFSA).

Several states in the South and Appalachia, including Alabama, Arkansas, Louisiana, Mississippi, and West Virginia, rank among those with the heaviest burden of HF, yet they have only one to three clinics each registered in the HFSA Heart Failure Clinic Database. Clinics instead tend to be clustered in coastal and Midwestern metropolitan areas.

“Addressing this gap requires not just more clinics to be registered, but perhaps different models: telehealth-anchored hub-and-spoke networks, APP [advance practice provider]-led community programs with specialist remote oversight, and digital health platforms that extend specialist expertise to geographically isolated patients,” the newly released report states.

Access is the key consideration, Richard Soucier, MD (Saint Francis Hospital and Medical Center, Hartford, CT), chair of the HFSA Clinic Committee that developed the report, told TCTMD. “A lot of that access doesn’t need to be direct access,” he added. “A lot of us have developed remote care clinics.”

It also doesn’t necessarily need to be physicians managing patients with HF, he pointed out, highlighting the contributions of not only advanced HF cardiologists at academic medical centers, but also APPs who have experience caring for this group. 

“There are providers out there, even in those communities that we haven’t identified yet, who are interested and facile in this,” Soucier said. “I think step one is to get the patients to identify who those providers are and then get the patients who are in the community plugged into those services.”

Inaugural Report

Soucier said that even though HF management has advanced “astronomically” over the last 20 years, “implementation of all of these new therapies is really lacking.” He noted that only a small fraction of patients who have heart failure with reduced ejection fraction (HFrEF), for example, receive optimal guideline-directed medical therapy.

The idea behind the report was to start to identify where the areas of expertise are “so that we can get as many patients as possible into the hands of people who are used to managing this disease,” Soucier said.

The inaugural “State of Heart Failure Clinics in the United States” report incorporates information from 306 HF clinics that are involved with HFSA quality and benchmarking initiatives and are included in the HFSA Heart Failure Clinic Database. These clinics care for a total of about 626,000 patients across 47 states and the District of Columbia; no clinics from Delaware, Idaho, and Wyoming have registered yet. The report also pulled in data from the Centers for Medicare & Medicaid Services (CMS), the US Census, and published literature.

Most of the registered HF clinics (61%) are in urban areas, with the rest in suburban and rural areas (31% and 8%, respectively).

Nearly half of the programs (48%) operate out of academic medical centers, 22% out of tertiary centers, and 27% in community hospital or outpatient settings. Overall, these clinics care for an average of 2,208 patients each per year. The average number of cardiologists within these clinics is highest for academic medical centers (5.5), followed by tertiary centers (3.9) and community-based programs (1.6).

The proportions of clinics that use ventricular assist devices or perform transplantation are 74% and 50%, respectively. Most (62%) are active in clinic research.

When it comes to how these clinics are distributed across the country, there remains a disconnect between areas with the heaviest HF burden—in general, states in the southern US and rural areas—and the availability of HF care. The highest numbers of registered clinics are found in Texas (25), California (23), New York (21), and Florida (20). At the other end, the following states each have only one registered HF clinic: Alaska, Arkansas, Hawaii, Mississippi, Montana, North Dakota, Rhode Island, and Vermont.

The size of the care team, the number of patients managed, and the capabilities (ie, use of advanced therapies, subspecialty care, and pulmonary artery monitoring) tended to decline with increasing rurality. Telehealth was an exception—it was offered by 92% of clinics, with high use across settings.

We’re probably just looking at the tip of the iceberg with this data. Richard Soucier

The disparities based on rurality “should not be read as implying access is only a rural problem,” the authors note. “Underresourced urban neighborhoods can sit within a metropolitan area that shows a high raw clinic count on the map yet remain functionally distant from specialty HF care because of the nongeographic barriers above—insurance status, transportation, referral pathways, and language access.”

Soucier et al highlight that these statistics do not represent “a census of all HF specialty care in the United States,” as community-based and rural programs are underrepresented in the database. In fact, HFSA has identified about 2,800 other HF clinics in the country that have not yet enrolled.

Moreover, the database does not yet track cardio-oncology or adult congenital heart disease services as separate fields, differentiate between advanced HF/transplant subspecialists and general cardiologists when examining staffing in these clinics, or capture HF care delivered within general cardiology practices.

“The true scope of specialty HF care delivery nationally is therefore likely wider than the clinic count alone suggests,” the authors say.

Soucier said that there are regular updates planned for this look at HF clinics across the US. “We’re probably just looking at the tip of the iceberg with this data,” he underscored. “I think there probably is a deficiency in care in rural America, but I don’t know if it’s as pronounced as this data is making it seem.”

HFSA is actively trying to identify other clinics to include in the database, Soucier noted. “I’m hoping that, as this publication comes out, the word gets out there and people start contributing to this in a meaningful manner so we can really get an accurate assessment of who’s out there and how we can direct patients towards those resources.”