Effectiveness of patient-centered self-care education for adults with heart failure on knowledge, self-care behaviors, quality of life, and readmissions: a systematic review protocol

Review objectives The objective of this review is to synthesize the best available evidence regarding the effectiveness of patient centered self-care education for adult patients with heart failure relating to heart failure knowledge, self-care behaviors centered on heart failure, heart failure-related quality of life, and heart failure readmissions within one year of an index hospitalization. A secondary objective of this review is to determine the most effective education approach for interventions included in the review to deliver patient-centered self-care education to adult patients with heart failure. Background Over the last decade, heart failure (HF) has become a growing epidemic.1 Currently, HF impacts over 5.7 million people in the United States;1 more than 15 million people in Europe;2 approximately 500,000 people in Canada;3 and 277,800 people in Australia.4 Despite evidence-based therapies in HF, the prevalence, incidence, and mortality have progressively increased over the past 25 years.5 The projected HF prevalence in 2030 is expected to further increase by 25 %.6 HF is a complex clinical syndrome that is caused by cardiac dysfunction either in systole, diastole, or both, resulting in impairment of the left ventricle causing dilatation, hypertrophy, or both.7 The symptoms of HF are characterized by dyspnea, fluid retention, edema and fatigue.7 HF is associated with adverse outcomes, including high rates of hospitalization, readmission, and mortality, in addition to poor quality of life. Noncompliance with a complex medical regimen, sodium and fluid restriction, lifestyle recommendations, a lack of understanding of the HF disease process, and a lack of knowledge about signs and symptoms related to decompensation can lead to recurrent worsening of HF symptoms, hospital readmission, and impaired quality of life.8,9 HF is the most common disease resulting in hospital admission for patients who are 65 years and older.9 Hospital readmission is the consecutive admission to the same hospital, a different hospital, or another acute care facility related to a specific condition for which treatment was rendered on a previous hospitalization.10 Approximately 25% of patients with HF are readmitted within 30 days following hospital discharge, and 50% are readmitted within 6 months of discharge.9,11 The 30-day hospital readmission rate for patients with HF in the United States is currently reported to be 24.7%.10 These high rates of readmission are capturing attention as subsequent hospitalizations lead to worsening morbidity and mortality, decreased quality of life, and increase costs of care. Readmissions may be secondary to improper or ineffective treatments, the education strategy used, a lack of patient participation in the medical regimen, the lack of knowledge related to or the inability to perform self-care behavior, or the failure on the part of the patient to take action in order to prevent further decompensation.12 Patient education is necessary for the effective management of HF symptoms.13 The evidence-based practice guidelines from the American College of Cardiology/American Heart Association (ACC/AHA),14 the Heart Failure Society of America (HFSA),7 and the European Society of Cardiology (ESC)2 recommend that patients with HF receive individualized education and counseling, placing emphasis on self-care. It has been shown that hospitalized patients with HF who received HF education had a 20% improvement in medication compliance after one year.15 Intensive, systematic, tailored, and planned education and support has been shown to be effective in improving self-care behaviors in patients with HF.16 The aim of HF patient education is to provide information that assists in acquiring the knowledge and skills necessary to understand and manage their condition. The components of HF patient education as outlined by current practice guidelines from ACC/AHA, HFSA, and ESC include the following: (a) an understanding of the causes of their HF; (b) medication indications; (c) the important of medication adherence; (d) potential causes of HF decompensation; (e) recognition of escalating symptoms; (f) HF disease management strategies; (g) low sodium diet; (h) restriction of alcohol intake; (i) restriction of fluid intake; (j) smoking cessation; (k) physical activity; (l) behavioral strategies to promote treatment adherence; and (m) the need for ongoing follow-up with a health care provider.2,7,14 HF education has been demonstrated to empower patients to take care of themselves, prevent and manage symptoms, prevent hospital readmission, reduce morbidity and mortality, reduce cost, and improve quality of life.17,18 HF education focused around symptom management is an essential component to improve patient outcomes. It includes the need for patients to understand the signs and symptoms to HF; recognize a new onset of symptoms or change in symptoms (such as weight gain greater than two pounds within two days or five pounds within one week, worsening shortness of breath, chest pain, edema, abdominal bloating, or fatigue); understand the importance of daily weights; and associate weight gain with volume overload and worsening HF. Patients need to understand how to respond to a change in symptoms, which at a minimum should include contacting their health care provider. HF patient education should also include information about the importance of medication adherence (consistently taking medication as prescribed), adjusting diuretics based on weight, maintaining a balanced exercise regime, sleep and rest cycles, and adhering to smoking cessation.19 Providing individualized education to patients with HF may aid in their understanding of the treatment plan and incorporation of self-care behaviors into daily routines. The Institute of Medicine defines patient-centered care as the provision of care that is respectful and responsive to a patient's preferences, needs, values, and perceives patients as leaders of their clinical care.20 It is important to understand how patients view their health and what outcomes they deem to be important. A core tenet of patient-centered care is that patients manage their own care, while collaborating with the health care team in making treatment decisions.21 Patient-centered care is the right care, the highest quality care, and the most cost effective care for a patient; provided through a team approach.22 Patient-centered care depends upon effective communication, empathy, and the development of a partnership between providers and the patient to improve patient care outcomes.23 The Institute of Medicine recommends the inclusion of a patient's cultural traditions, preference, values, social circumstances, and lifestyle into the patient-centered approach to care.20 Patient-centered care represents a care approach strategy geared towards meeting individual patient's needs and preferences as part of the treatment plan to achieve desired outcomes.24 Patient-centered care focuses on the patient, not the disease, while empowering individual patients to become knowledgeable and more informed about their diagnosis, successfully manage their symptoms, and engage in self care behaviors. Self-care is the process in which individuals perform daily activities to maintain health.25 Self-care includes the activities that individuals, families, and communities undertake with the intention of enhancing health, preventing disease, limiting illness, and restoring health.26 Appropriate self-care can minimize potential health problems, improve quality of life, and decrease costs in patients with HF.27 Self-care includes the principles of self-maintenance and self-management.25 HF self-maintenance is the ability of the individual patient to adhere to prescribed treatments while monitoring and recognizing symptoms of decompensation.28 HF self-management involves patients who are active in the management of their condition and make appropriate adjustments to their self-care behaviors or treatment plan based on self-assessment.28 Self-management is the process by which a patient utilizes obtained knowledge and skills to maintain a sense of wellness.28 These skills include coping with lifestyle changes necessary to be successful at living with a chronic condition, as well as having the ability to adjust and work through physical and emotional challenges while engaging in a daily routine to manage care needs at an optimal level.29 The goal of patient-centered self-care education is to inform and increase a patient's knowledge and self-care capabilities using an individualized approach in an effort to achieve desired outcomes: improved HF knowledge, improved self-care behaviors, improved quality of life, and reduced readmissions. HF education is the provision of information on HF to improve knowledge, clinical outcomes, patient's overall cardiac status, functional capacity, and quality of life, as well as to reduce mortality.7 A patient's HF knowledge can be measured by valid and reliable instruments such as the Atlanta Heart Failure Knowledge Test (A-HFKT).30 Self-care behaviors include medication adherence, symptom monitoring, dietary adherence, fluid restriction, weight monitoring, smoking cessation and management of symptoms.18 Self-care behavior can be measured by valid and reliable instruments such as the Self-Care Heart Failure Index (SCHFI),31 or the European Heart Failure Self-Care Behavior Scale (EHFScBS).32 Quality of life represents the interpretation of the ease with which patients are able to cope with the impact of a disease on a daily basis and maintain a normal lifestyle. Quality of life refers to a patient's perception of health and the impact of treatment on health status.33 Quality of life can be measured by valid and reliable instruments such as the generic Short Form 36 (SF-36),34 or HF specific instruments such as the Minnesota Living with Heart Failure Questionnaire (MLHFQ),35 or the Kansas City Cardiomyopathy Questionnaire (KCCQ).36 Hospital readmission is defined as the consecutive unplanned or planned admission to the same hospital or another acute care hospital related to a previous hospitalization regarding a specified condition.10 Patients are typically tracked at discharge, and each readmission for any cause within a prescribed time period is tallied. A search of Joanna Briggs Institute Library (the Database of Systematic Reviews and Implementation Reports), the Cochrane Library of Systematic Reviews, MEDLINE, and CINAHL for previously conducted systematic reviews identified six prior systematic reviews related to education for patients with HF.12,17,18,37-39 These reviews look at HF education interventions in general; none looked specifically at patient-centered, self-care education interventions. See Appendix I for details on the objectives, methods, results and conclusion of the identified systematic reviews. The identified systematic reviews contained studies published through 2010. None of the prior systematic reviews used a comprehensive search strategy; they included a search of grey literature to uncover all evidence related to the question asked and reduce the risk of publication bias. The current review will seek to identify all studies that evaluate the effectiveness of patient-centered, self-care education compared with general, non-individualized education strategies for adult patients with HF, while identifying any additional evidence created since the prior systematic reviews were conducted. This review will look specifically at the effects of patient-centered, self-care education on HF knowledge, self-care behaviors, quality of life, and readmissions. In addition, this review will seek to determine the most effective approach at delivering patient-centered, self-care education to adult patients with HF.