2Department of Cardiology, Faculty of Medicine, Eskişehir Osmangazi University, Eskişehir, Türkiye
3Department of Cardiology, The Ibn Rochd University Hospital Center, Casablanca, Morocco
4Division of Cardiology, Netcare Sunninghill, Sunward Park Hospitals, School of Clinical Medicine, Faculty of Health Sciences and the University of the Witwatersrand and Charlotte Maxeke Johannesburg Academic Hospital, Johannesburg, South Africa
5Department of Internal Medicine and Cardiology, University of Nairobi, Nairobi, Kenya
6Department of Cardiovascular Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University Section of Heart Failure and Transplant, Heart, Vascular, and Thoracic Institute, Cleveland Clinic Abu Dhabi, United Arab Emirates
7International Advisor, RCP for Iraq, Chair, RCP Iraq Members and Fellows Network Head, Scientific Committee, Iraqi Red Crescent Society Iraq, Baghdad, Iraq
8Department of Cardiology, National Heart Institute, Cairo, Egypt
9Advanced Heart Failure and Transplantation Unit, Chest Diseases Hospital, Ministry of Health, Kuwait City, Kuwait
10Department of Cardiology, Faculty of Medicine, Cairo University, Cairo, Egypt
11Department of Cardiology, Faculty of Medicine, Dokuz Eylül University, İzmir, Türkiye
12Department of Cardiology, Abdali Medical Center, Amman, Jordan
Abstract
Heart failure (HF) remains a serious health and socioeconomic problem in the Middle East and Africa (MEA). The age-standardized prevalence rate for HF in the MEA region is higher compared to countries in Eastern Europe, Latin America, and Southeast Asia. Also cardiovascular-related deaths remain high compared to their global counterparts. Moreover, in MEA, 66% of HF readmissions are elicited by potentially preventable factors, including delay in seeking medical attention, nonadherence to HF medication, suboptimal discharge planning, inadequate follow-up, and poor social support. Patient support in the form of activation, counseling, and caregiver education has been shown to improve outcomes in patients with HF. A multidisciplinary meeting with experts from different countries across the MEA region was convened to identify the current gaps and unmet needs for patient support for HF in the region. The panel provided insights into the real-world challenges in HF patient support and contributed strategic recommendations for optimizing HF care.
Highlights
- Nearly three-fourths of patients with HF are diagnosed with New York Heart Association class III and IV disease, emphasizing the high unmet need for patient support in HF in the MEA.
- Delay in seeking medical attention, nonadherence to HF medication, suboptimal discharge planning, inadequate follow-up, and poor social support are the potentially preventable factors for HF readmissions.
- The expert panel provided insight on practical challenges and recommendations to overcome the gaps in HF patient support.
Introduction
Heart failure (HF) remains a serious public health problem in the world, affecting 64.3 million individuals, and this number is expected to increase during the next few decades.1 The age-standardized prevalence rate (per 100 000) of HF in the Middle East and Africa (MEA) region is relatively high (972.3) compared to Latin America (709.8-870.7), Eastern Europe (703.8), and Southeast Asia (655.0).1 According to the Gulf CARE registry study, 59% of the patients had reduced ejection fraction (EF), 21% had midrange EF, and 20% had preserved EF.2 In MEA, the increasing prevalence rate of HF is driven by the increase in risk factors such as hypertension, diabetes mellitus, hyperlipidemia, coronary artery disease, obesity, smoking, and a sedentary lifestyle.2,
Despite significant advances in HF prevention and therapeutic armamentarium, mortality rates remain high, with 17% to 45% of deaths occurring within 1 year of diagnosis—the majority of deaths occur within 5 years of admission.4,
Similar to developed countries (North America, Latin America, Australia, and Japan) in MEA, particularly in the Middle East, HF accounts for up to 1.31% of all hospitalizations.5,
In MEA countries, there are some variations in the use of essential medications for HF.2,
Appropriate patient support in HF seems to reduce the risk of rehospitalization and prolong survival relative to standard care. Hence, to identify the current gaps and unmet needs for patient support for HF in the MEA region, a multidisciplinary meeting with experts from different countries across the region was convened. The panel aimed to gain insights into the real-world challenges in HF patient support and contribute strategic recommendations for optimizing HF care.
Methodology
An expert panel of 14 members with expertise in the management of HF across the MEA region [2 experts from Egypt, 2 from Saudi Arabia, 2 from Türkiye, and 1 each from Iraq, Jordan, Kenya, Kuwait, Lebanon, Morocco, South Africa, and the United Arab Emirates (UAE)] provided insights on practical challenges and recommendations to overcome the gaps in HF patient support. This article is an outcome of the literature review, expert group discussion, and consensus recommendations for bridging gaps in HF patient support in the MEA region.
Patient Journey in Heart Failure
Patient journeys in HF differ from individual to individual, varying from symptoms of HF, mode of onset, etiology, comorbidities, and social/financial factors. Heart failure may present as a gradual functional decline with recurrent episodes of acute deterioration, frequent hospitalizations, recovery, and seemingly unexpected or sudden death.4 Patients are distressed when HF is diagnosed.
Despite their younger age, most patients presenting with acute HF from the MEA region have 1 or more comorbid conditions, particularly hypertension, diabetes mellitus, hyperlipidemia, and coronary artery disease.2 At initial presentation, although most patients exhibit classic symptoms and signs of HF, the disease often remains undiagnosed at the primary care physician (PCP) level.2 In most cases, the diagnosis is made during an emergency hospital admission,2 and is associated with prolonged hospital stays18 and subsequent frequent hospitalizations.2,
Approximately 22%-52% of patients in MEA receive suboptimal treatment (deviation from guideline-directed medical therapy),
In MEA, most patients lack awareness about the disease, and to overcome low awareness, patients diagnosed with HF need explanations regarding their condition and the methods used to treat it, the lifestyle factors that need attention, a support system, and guidance in preparing them to resume their normal activities.
Role of PCP to Diagnose and Leverage Early Referral to Cardiologists
Most patients with HF will initially present themselves to general physicians (GPs) or PCPs. Therefore, the role of GPs or PCPs is crucial for diagnosing HF and the early referral of patients with HF to the cardiologist.
The condition poses a major diagnostic challenge for PCPs22 because, in the early stages of the disease, the symptoms and signs may be less obvious; therefore, they are particularly difficult to diagnose with the limited availability of the necessary investigative modalities, especially in low-middle income countries (LMICs). Accurate and early diagnosis is important since early treatment can delay or reverse disease progression. Lack of awareness among PCPs and GPs regarding the identification of risk factors for HF symptoms, and specialist referral remains a crucial challenge in the MEA. Clinical inertia about HF among PCPs is another big challenge. In the MEA region, non-HF specialists are treating the majority of the patients with HF, and only very few countries have developed structured HF programs with specialized HF clinics run by certified cardiologists and other disciplines.14
Intervention Programs for Improving Heart Failure Care
The experts recommended different intervention programs for improving patient care in HF management.
Patient Support Programs in Heart Failure Management
Patient support programs (PSPs) are enhanced self-management programs designed for direct patient or patient–caregiver engagement to support patients in managing their disease and complex medication regimens, improve medication adherence, and reduce potential complications and related costs.23,
A meta-analysis revealed that medication adherence, clinical, and humanistic outcomes were positively impacted by PSPs.23 A study by Lorig et al revealed that implementing PSPs can improve communication between patients and their physicians.25 In MEA countries like Lebanon and Saudi Arabia, self-care management is poor in patients with HF.26,
Psychological Counseling in Patients with Heart Failure
Heart failure is a chronic condition that affects not only the physical health but also the psychological well-being of the patient, because patients with HF often cope with numerous changes, including the consequences of the disease or its treatment on their QOL and functioning. Heart failure decreases the opportunities to participate in social life, leading to a deterioration of social interaction, social isolation, and a possible lack of social support.28 In addition, patients have to deal with adherence to a new lifestyle (exercise, smoking cessation, healthy eating, weight loss, and alcohol cessation).28 Among patients attending a chronic HF clinic, symptoms of anxiety and depression were found in more than 50% of the patients.29 A meta-analysis conducted on patients with HF reported clinically significant depression and anxiety in 21.5% and 28.79% of patients, respectively.30,
Studies reveal that counseling can improve patients’ psychological condition37 (reduction in anxiety and depression),38 decrease HF-related hospitalizations39,
Experts have also stated that patient counseling is a key component in the HF intervention, as counseling can help the patient to cope with or adjust to their current health situation (poor mental health, upsetting physical health condition, and difficult emotions). Studies have reported that nurse-led counseling is beneficial for the improvement of mental health status and QOL for patients with HF.42 Experts have unanimously suggested encouraging nurses to be involved in HF care, since they are an integral part of the patient journey in HF management; moreover, they are skilled at navigating both the emotional and physical needs of their patients.
Improving Quality of Life in Patients with Heart Failure Based on Outcomes from Evidence-Based assessment
Maintaining QOL is a robust and independent predictor of all-cause death and HF hospitalization across all regions of the world in mildly and severely symptomatic HF.43 In MEA, particularly in Africa, compared to their western counterparts, health-related QOL is markedly lower among patients with HF.43 A good QOL is as imperative, if not more, as survival for most patients living with HF.44 Guideline-recommended medical and behavioral interventions for HF, including self-care interventions, exercise training, and cardiac rehabilitation, can help to improve QOL.45
Self-Care Management (Maintenance and Management)
Growing evidence suggests that patients with HF who demonstrate self-care deficits in activities such as treatment compliance, maintaining fluid restrictions, and not identifying the warning symptoms of worsening HF early have frequent hospitalizations and decreased QOL.46 Most HF management programs emphasize that improved self-care is the key to success in order to improve adherence, QOL, and reduce mortality, morbidity, and ultimately health-care costs47,
A longer duration of self-management interventions was found to be more effective in improving several outcomes.57 Promoting effective self-care practices by all clinicians in patients with HF could improve QOL and reduce the economic and personal burden of recurrent hospitalizations. Hence, the concept of self-care is supported by international guidelines.58 Interventions using face-to-face communication59 and a multidisciplinary team of interventionists60 were found to be more effective than interventions without these strategies. However, in MEA countries like Lebanon, self-care remains suboptimal and warrants the development of novel strategies to improve it.26
Exercise Training Cardiac Rehabilitation
Research has repeatedly reinforced the usefulness of exercise training cardiac rehabilitation interventions in patients with stabilized HF in decreasing symptoms, improving QOL, reducing hospital admissions, and consequently reducing financial burden (
It was found to be a clinically effective and economical intervention for patients with HF.62 Additionally, providing group exercise training would allow patients to meet individuals who are experiencing similar life challenges and thus offer an additional network of support.
In MEA countries, currently, there are no national strategies regarding cardiac rehabilitation; however, very few health-care institutions have implemented this program.
Remote Health Monitoring
Technological advances have allowed increasingly sophisticated attempts to remotely monitor and manage HF.65 A meta-analysis has concluded that remote patient monitoring (RPM) programs for HF patients can reduce hospital admissions and mortality and simultaneously improve health-related QOL.66,
Patient Activation in Heart Failure
Patient activation or active engagement in their health management is critical for those with HF to improve their condition, given the complex and potentially progressive nature of the disease, the high presence of comorbidities, and the financial and emotional stress the disease places on patients and their families. Growing evidence suggests that patient education and activation in understanding their disease and imparting the knowledge, skills, and confidence to engage in managing one's health favorably impact patient behaviors and health outcomes among patients with HF.46,
Educational interventions may hold promise for improving patient activation.75 A randomized clinical trial (RCT) conducted on patients with HF to determine the efficacy of a patient activation intervention (a 6-month program delivered by advanced practice nurses) compared with usual care on activation, self-care management, hospitalizations, and emergency department visits demonstrated a significant increase in patient activation with the targeted interventions compared to usual care.76 A systematic review indicated strategies such as patient education to enhance self-care, follow-up monitoring by specially trained staff, and access to specialized HF clinics as the most efficacious approaches for the management of patients with HF to reduce HF hospitalization.60
The literature has revealed a variety of choices for self-management education interventions, including face-to-face education, multimedia-based education, telemonitoring, education accompanied by telephone support, nurse case management, and telemonitoring for activating or improving self-care among patients with HF (
In MEA, patient activation programs are conducted in some countries like Lebanon, Kuwait, Morocco, Egypt, Türkiye, and Saudi Arabia. In Lebanon and Türkiye, a program, named “Heart Failure Awareness Days” was conducted regularly before the coronavirus disease 2019 pandemic. As a part of the program activities such as lectures to patients, their relatives, and the general population about HF, workshops about “HF diets,” “open house” in HF clinics, panel debates with HF cardiologists, etc., were organized. In Kuwait, a monthlong program named “strengthen your heart” was conducted by visiting hospitals to educate patients and caregivers about different HF symptoms, self-care maintenance, etc. In Saudi Arabia, campaigns were conducted during special occasions like Ramadan, Women’s Day, etc. via social media through social media influencers (
Some of the real-world initiatives to leverage patient activation in HF recommended by experts are described in Box 1.
Role of Caregivers and Educators in Patient Support
Role of Caregivers
Caregivers play an important part in improving patient outcomes since the majority of patients with HF depend on caregivers’ support for successful HF self-care, which is essential for optimal patient outcomes.86,
Heart Failure Educators
Patient education is an essential component in HF management; hence, an HF educator who has knowledge and skills in the medical sciences, pedagogy, communication, and counseling plays a major role in empowering patients to manage their disease. A narrative review has identified patient educators as a potential option for improving patient health and well-being.92
In many Western countries, nurses experienced in HF management are playing an educator role to create awareness among patients, similar to certified diabetes educators. These education programs provided by nurses on the self-care behavior of HF patients were very effective in improving patient outcomes.48,
In South Africa, nurses provide support to the patients in HF education and medication adherence, giving more insights to the insurance companies about medications because, in South Africa, HF medication costs are not always covered by the funder. The nurse practitioners in this country are trying to extend their support to the patients by providing insights to the insurance companies about the critical need for these medications.
Role of Patient Advocacy Groups and Heart Failure Societies in Patient Support
Role of Patient Advocacy Groups
Patient advocacy groups (PAGs) are nonprofit groups that represent patients with a health condition or their caregivers. Patient advocacy groups are playing a crucial role in providing peer support for patients and families, reducing stigma, raising awareness, educating, raising funds for nonaffording patients, influencing policymakers, and impacting national research agendas by bringing the public's concerns about the disease to policymakers and the medical community.94 In addition, they also help patients manage their finances by assisting them in understanding medical bills and insurance coverage.94 Studies have also demonstrated positive effects of peer support on self-efficacy, activity, reducing pain, and decreasing emergency room visits.95
In Western countries, several PAGs, such as European Patient Advocacy Groups, Heart Failure Society of America, The Mended Hearts and the Mended
Despite a significant body of evidence that reinforced HF self-management is key for improving patient outcomes and decreasing hospitalizations, to date, there are major gaps in representing the voice of the HF patient in the MEA region. Though NGOs and medical societies from MEA are performing many activities in the health-care sector, the activities are still at a nascent stage in many countries. There is a need to have a separate group of people who will advocate the cause of patient support, and will work explicitly in these areas to increase transparency and credibility. The World Heart Federation also emphasized the need to involve PAGs, raise the HF profile on national agendas, raise awareness among patients, and influence decisions and policymakers.4
In Egypt, a few NGOs (the Egyptian Friends of National Heart Foundation of National Heart Institute and the Egyptian Society for Patients with HF) are supporting patients by promoting and facilitating health and educational activities (healthy living, medication adherence, lifestyle modifications, and using home monitoring devices) to improve adherence to therapy and clinical outcomes. Besides, they are also strengthening health systems by influencing policymakers. For example, in Egypt, with the support of PAGs, an NGO was able to procure HF medications free of cost for financially challenged patients by reaching out to the Egyptian Health Ministry and insurance providers.
Heart Failure Societies
Heart failure societies play a key role in the development and implementation of guidelines, increasing public and physicians’ awareness regarding prevention, investment in research, support in continuous medical education, organization of cardiology symposia and congresses, and achievement of national registries regarding main cardiac conditions to decrease the burden of cardiovascular diseases. Besides, the organizations can also enhance awareness among lawmakers and policymakers while advocating for changes to protect and improve the health of people. Globally, the European Society of Cardiology (ESC) is actively conducting several programs or campaigns in different countries to create awareness at the community, patient, and PCP levels.
In MEA countries like Lebanon, Jordan, Morocco, and Türkiye, the cardiology societies (members of ESC) are actively conducting programs or campaigns to create awareness at the patient level, community level and PCP level. The “Heart Failure Awareness Days” campaign organized by the HF Working Group of the Lebanese Society of Cardiology (LSC) in collaboration with the Lebanese Ministry of Health and Lebanese Nursing Order is an example of such a program designed to create awareness among patients and caregivers.96 This can has been initiated in 2011 by the HF Working Group of LSC and has been awarded by HFA-ESC 5 times up to date (best overall campaign, best poster, best social media activities, etc.). Further, case-based clinical presentations and lectures are organized by medical societies for physicians’ internists, pulmonologists, endocrinologists, and other specialists to increase awareness at the primary care level. Since 2012, the Turkish Society of Cardiology has actively participated in the initiative “HF Awareness Day” activities, organized press conferences, printed and distributed posters and booklets for patients, and arranged webinars for physicians. This significant event is now included in the regular activity program of the HF Working Group. Also, the Turkish HF Working Group has published national guidelines on specific HF topics in order to improve the implementation of optimal HF therapy.
The experts recommend all the HF societies in MEA collaborate with international medical societies to organize activities at the local and national levels to improve patient care in HF management.
Heart Failure Programs and Clinics
In the MEA region, mostly the Gulf countries like Saudi Arabia, Qatar, and the UAE have established structured HF programs with specialized clinics run by cardiologists who work with professionals like nurses, pharmacists, physiotherapists, and others certified in treating HF.14 For example, Saudi Arabia has at least 10 HF clinics dispersed throughout the country, and they have had a significant impact on the way patients with HF are treated and the patient outcomes.10,
In most MEA countries, nongovernmental organizations like cardiac medical societies have conducted several campaigns to increase awareness among the general population, HF patients, and GPs. In some countries, like Jordan, the UAE, Türkiye, and Saudi Arabia, governments have launched some programs to increase awareness and control cardiovascular disease. For example, in Türkiye, in 2017, the Turkish Ministry of Health (MoH), in colloboration with Turkish Society of Cardiology, has established a national heart health policy to decrease the burden of cardiovascular disease and its risk factors. The MoH leads the main public awareness campaigns, projects, and educational activities.101 Similar programs were conducted in countries like the UAE, Lebanon,102 Egypt,103 and Jordan.104
Additionally, in many countries, workshops and seminars on heart health and HF prevention are conducted in collaboration with health-care professionals and medical organizations. Some countries have dedicated national or regional heart health days during which various activities and events are organized to focus on heart health and HF prevention. In addition to public awareness initiatives, some governments in Gulf countries are offering training and continuing education programs for health-care professionals to improve HF management.
Conclusion
Heart failure remains a major public health problem in the MEA. Despite the continued impressive advances in the therapeutic management of HF, there is a high unmet need for patient support for HF in the MEA. In this region, up to three-fourths of patients with HF were diagnosed with NYHA class III and IV disease. There is low awareness about HF at the patient as well as PCP levels; thus, the probability of an early diagnosis is limited. Effective strategies at the patient and PCP levels are essential to bridge the gaps in HF patient support. Patient education is a crucial component in HF care and should be provided through effective and well-evaluated strategies through the adoption of digital health technologies. Patient support programs have been considered a promising approach in reducing rehospitalizations and even major adverse cardiovascular events. Incorporating HF educators into routine practice settings can add significantly to HF care and can improve communication between patients and the health-care provider. Patient advocacy groups can play a vital role in easing the burden by providing peer support for patients and their families. Given the important role that PSPs play in creating value for patients in terms of patient support, comprehensive efforts should be made to expand and endorse PSPs in the MEA.
Although some MEA nations have taken measures to increase public awareness and offer HF care, these initiatives have not been evaluated for their effectiveness, and the lack of literature on the outcomes of public awareness remains a significant gap. Monitoring and evaluating the effectiveness of these programs are essential to gauge their impact on public health and to identifying areas for improvement. By prioritizing the assessment of public awareness programs, MEA countries can strengthen their efforts to combat HF.
The recommendations by the experts for improved patient support for patients with HF in the MEA region are presented in the box below:
Footnotes
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