Empowering patients with cirrhosis: Lessons from the Lima HepatoClub
Year: 2025
Type: article
Abstract: Cirrhosis is a growing global health challenge, associated with high morbidity, frequent hospitalizations, and substantial economic burden. In 2019, there were an estimated 2.1 million incident cases and 1.69 billion prevalent cases worldwide, contributing to nearly 1.5 million deaths, ~200,000 more than a decade earlier. The burden varies across regions, largely driven by metabolic and alcohol-associated factors. In high-income North America, including the United States, prevalence was relatively low at about 10,994 per 100,000, with metabolic-associated steatotic liver disease as the leading cause. In contrast, Andean Latin America had one of the highest incidence rates globally, with 32.3 per 100,000, predominantly related to alcohol use.1 Decompensated cirrhosis requires complex multidisciplinary care. Avoidance of adverse outcomes and frequent hospitalizations depends on present caregivers being equipped with the tools and knowledge to execute complicated care at home—and nimble coordination of care from subspecialist providers. The optimal approach to decompensated cirrhosis remains elusive. Several strategies have been evaluated in high-resource settings. For example, Penrice and colleagues piloted a 90-day remote patient monitoring program (CiRPM—Cirrhosis Remote Patient Monitoring) for patients recently hospitalized with decompensated cirrhosis, using Bluetooth-enabled devices and tablet-based symptom tracking to guide nursing interventions. Engagement and satisfaction were high, and participants showed trends toward fewer readmissions and lower short- and long-term mortality.2 Similarly, a Danish randomized trial of a 6-month, family- and patient-centered program improved outpatient adherence and alcohol abstinence, with exploratory analysis suggesting reduced readmissions at 12 months.3 Qualitative work has further highlighted the role of infrastructure in shaping care delivery. Serper and colleagues found that high-complexity U.S. Veterans Affairs centers could offer comprehensive services, while smaller centers relied heavily on telehealth and referrals. Facilitators of high-quality care included electronic dashboards, nursing coordination, and telehealth, whereas barriers included staffing limitations, logistical challenges, and weak community integration.4 In another multicenter study, Shaw and colleagues examined the Patient Buddy App, a health information technology (HIT) designed to support cirrhosis care. While providers felt confident using the tool, they reported significant challenges related to connectivity, technical support, and follow-up time, underscoring the need to balance patient engagement with provider workload.5 Although promising, these interventions rely on specialized personnel whose effort is costly and proprietary digital infrastructure, with implementation challenges outside of pilot programs. They are often unfeasible in low- and middle-income countries (LMICs), where care remains largely reactive and preventive programs are rare. Recognizing this unmet need, a team in Lima, Peru, developed a patient-centered educational program to empower individuals with cirrhosis and their families to better understand and manage the disease, with the goal of reducing preventable hospitalizations. This program, now known as HepatoClub, reflects how low-cost, community-based strategies can transform liver care in resource-limited settings. INTRODUCING HEPATOCLUB HepatoClub began in 2017 at the Hospital de Emergencias de Villa El Salvador, a community-level hospital, under the name El Club de los Jueves (“Thursday Club”). The program aimed to teach patients and their families to recognize early signs of decompensation, adhere to therapy, and engage actively in their own care. After a hiatus during the COVID-19 pandemic, it was relaunched in 2022 as HepatoClub at Hospital Nacional Dos de Mayo, a major tertiary public hospital, expanding its reach to a broader patient population. The club’s guiding motto, “Nos vemos en la consulta y no en la emergencia” (“See you in the clinic, not in the emergency room”), captures its central goal: empowering patients to manage cirrhosis proactively and avoid preventable hospitalizations. STRUCTURE AND ACTIVITIES HepatoClub offers monthly educational sessions lasting 60–90 minutes, attended by patients and their families. The sessions are led primarily by gastroenterologists and supported by nutritionists, psychologists, nurses, endocrinologists, and physical therapists. The curriculum covers recognition of decompensating events, safe medication use and adherence, nutrition tailored to comorbidities such as diabetes and obesity, physical activity and fall prevention recommendations, as well as strategies for family support in daily care. Each participant receives educational materials, an attendance card, vaccination records, and a keychain illustrating warning signs for early decompensation. The sessions also include moments for celebration, such as birthdays and holidays, which create a sense of belonging and strengthen the support network. A detailed video explaining the structure, components, and workflow of the HepatoClub initiative is available at https://youtu.be/IRlLqou0oWw Patients are invited to join HepatoClub during outpatient visits or hospital stays. A dedicated coordinator, a trained volunteer family member of a former patient, serves as the primary contact for patients, fostering empathy and engagement. This group provides a channel for real-time support, early recognition of complications, and reinforcement of educational messages. HepatoClub members maintain communication through a WhatsApp group, where patients and caregivers can promptly report concerns. For instance, when a participant presents to the emergency department, the patient or family notifies the coordinator, who alerts the medical team to ensure rapid intervention, reinforcement of prior instructions, and continuity of care throughout hospitalization and discharge. In addition, members benefit from expedited appointment scheduling and shorter waiting times, which further encourage engagement. The process involved placing the patients on a dedicated list managed by the coordinator. On clinic days, when any of the three hepatology team members are available, an additional appointment is accommodated within the regular clinic schedule. OVERCOMING BARRIERS Operating HepatoClub in a tertiary public hospital posed greater challenges than in the original community-based setting. Resource limitations were evident, as no staff were exclusively assigned to hepatology or preventive care. Patients experienced many barriers: transportation insecurity, financial insecurity, or limited family support. Recruitment and follow-up were further complicated by the geographic dispersion of patients across hospital units. To overcome these barriers, the team posted the coordinator’s contact information in gastroenterology clinics, actively invited hospitalized patients to participate, and leveraged the chat group to maintain long-term engagement. Sustaining the program also required personal commitment from the medical team, who contributed volunteer time and occasionally financial support for snacks and materials. OUTCOMES AND IMPACT Between October 2022 and October 2023, 28 patients enrolled in HepatoClub. When comparing outcomes for the same patients before and after the program, focusing on those who attended at least 5 sessions, significant improvements were observed. The recurrence of variceal hemorrhage among 14 persons who had experienced it was observed in only one case. Among 14 patients with ascites, 8 achieved control. Beyond measurable outcomes, HepatoClub has evolved into a community where patients and families support one another. Participants share experiences, encourage adherence, and navigate challenges collectively, often beyond the formal scope of the program. A patient testimony is available at https://youtu.be/d3NQk3tvs_A CONCLUSIONS The future of cirrhosis management in LMICs will rely on low-cost, scalable programs that empower patients and families to share responsibility for disease management. HepatoClub provides a model for building community-based patient networks that sustain engagement through simple communication tools and foster resilience in the face of limited resources. By focusing on education, early recognition, and community empowerment, the program has possibly reduced preventable hospitalizations and reframed cirrhosis care as a proactive, collaborative effort. The club’s motto, “Nos vemos en la consulta y no en la emergencia” (“See you in the clinic, not in the emergency room”), encapsulates a new approach to liver care that challenges the misconception of cirrhosis as a condition synonymous with inevitable decline. Its principles could be scaled to multiple centers, eventually incorporating basic digital technologies to expand reach while preserving the personal connections that make the program so effective and rewarding—for both the patients and the clinicians.
Source: Hepatology Communications
Authors: Daniela Goyes, Julio Santiago-Marcelo
Institutions: Yale University, Hospital Nacional Dos de Mayo
Language: English
Subfield: Hepatology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,700
OpenAlex ID: W4414594573