Outcomes After Initial Heart Failure Consultation in Fontan Patients

Abstract

Purpose Many individuals with a Fontan palliation will require advanced heart failure (HF) care during their lifetime. There are no standardized guidelines dictating the threshold for referral to a formal HF or heart transplant (HTx) service. Delays in referral can result in irreversible end-organ damage or clinical instability such that transplant or ventricular assist device (VAD) implant is too risky. Understanding current referral patterns and outcomes will help delineate recommendations on timing for initiation of HF/HTx care. Methods Centers participating in the ACTION collaborative were invited to share data on characteristics of Fontan patients (any age) at the time of an initial consultation with a HF/HTx team; a follow-up survey was sent at 30 days to determine outcome after initial consultation. The primary outcome was “late referral”, defined as death or declined for HTx and/or VAD due to too sick; a secondary outcome of “care escalation” was defined as VAD implant, inotrope initiation or HTx listing. Characteristics at time of initial consultation were examined. Results From 7/2019 to 7/2021, 13 ACTION centers contributed data on 60 Fontan patients seen for an initial HF/HTx consultation. Table 1 shows the characteristics at time of initial consultation; 50% were inpatient consults and 33% of inpatients were already on inotropic support at time of consult. At 30 days, 12% were found to be late referrals (too sick for HTx/VAD = 6, died =1), and 38% had care escalation (initiated inotrope = 6 and/or VAD implant = 4 and/or HTx list = 16). Initial consult ≤ 1 year post-Fontan was associated with late referral (OR 8.8, 95% CI 1.6-47.7, p=0.012), while inpatient at initial consult was associated with late referral or care escalation (OR 3.1, 95% CI 1.1-8.8, p=0.040). Conclusion Over a third of Fontan patients seen for an initial consultation by a HF/HTx team have care escalation within 30 days, with 12% referred too late. Earlier referral for advanced HF care in Fontan patients, especially before hospitalization, is needed. Many individuals with a Fontan palliation will require advanced heart failure (HF) care during their lifetime. There are no standardized guidelines dictating the threshold for referral to a formal HF or heart transplant (HTx) service. Delays in referral can result in irreversible end-organ damage or clinical instability such that transplant or ventricular assist device (VAD) implant is too risky. Understanding current referral patterns and outcomes will help delineate recommendations on timing for initiation of HF/HTx care. Centers participating in the ACTION collaborative were invited to share data on characteristics of Fontan patients (any age) at the time of an initial consultation with a HF/HTx team; a follow-up survey was sent at 30 days to determine outcome after initial consultation. The primary outcome was “late referral”, defined as death or declined for HTx and/or VAD due to too sick; a secondary outcome of “care escalation” was defined as VAD implant, inotrope initiation or HTx listing. Characteristics at time of initial consultation were examined. From 7/2019 to 7/2021, 13 ACTION centers contributed data on 60 Fontan patients seen for an initial HF/HTx consultation. Table 1 shows the characteristics at time of initial consultation; 50% were inpatient consults and 33% of inpatients were already on inotropic support at time of consult. At 30 days, 12% were found to be late referrals (too sick for HTx/VAD = 6, died =1), and 38% had care escalation (initiated inotrope = 6 and/or VAD implant = 4 and/or HTx list = 16). Initial consult ≤ 1 year post-Fontan was associated with late referral (OR 8.8, 95% CI 1.6-47.7, p=0.012), while inpatient at initial consult was associated with late referral or care escalation (OR 3.1, 95% CI 1.1-8.8, p=0.040). Over a third of Fontan patients seen for an initial consultation by a HF/HTx team have care escalation within 30 days, with 12% referred too late. Earlier referral for advanced HF care in Fontan patients, especially before hospitalization, is needed.