Open access peer-reviewed chapter
Abstract
As an integral part of disease monitoring and management of patients with chronic inflammatory arthritis, patient education is highly recommended to help patients optimize their health and well-being rather than be limited to the disease. Rheumatology nurses have been shown to play a major role in patient education, thus enabling them to increase their knowledge about their health condition as well as change their health behavior. Since patients with chronic inflammatory arthritis have different educational needs, patient education can be provided in a variety of ways tailored to the specific and unique needs of each patient. The extent to which nurses in various regions of the world are involved in patient education depends on both their professional background and the organization of the relevant health system.
Keywords
- nurse-led education
- patients
- chronic inflammatory arthritis
- educational needs
- disease management
1. Introduction
The need for patient education is widely recognized [1]. It is an important aspect of nursing care that would allow patients to manage their disease and improve their health outcomes [2], thus maintaining a better quality of life (QoL) [3].
To improve the health of patients with chronic diseases, such as chronic inflammatory arthritis (CIA), patient education provided by healthcare professionals plays a tremendous role [4]. CIA has an adverse effect on the physical and psychological functioning of individuals; this negative impact increases the severity of the disease [5], worsens the prognosis, and is often associated with a significant socioeconomic burden. CIA has a lasting impact on the daily activities and quality of life of over 100,000 people in Bulgaria [6].
The fast development of medicine and technology in recent decades has highlighted the need for a well-trained, highly skilled nursing workforce capable of adapting to new changes and challenges. The introduction of biologic disease-modifying antirheumatic drugs (bDMARDs) in recent years has led to a dramatic improvement in the treatment of CIA. The application of this new class of medications in rheumatology is associated with continued learning and knowledge advancement in this field attained by healthcare providers as well as by patients and their families.
bDMARDs are effective in the treatment of CIA, including rheumatoid arthritis (RA), spondyloarthritis (SpA), and psoriatic arthritis (PsA); they make it possible to achieve control of disease activity and manage functional impairment in order to improve disease prognosis [7]. In the context of rheumatology, nurses, together with physicians and other healthcare professionals, participate in the treatment of CIA [8], with nurses playing a major role in the patient education [9]. Patient education is highly recommended for better management of chronic diseases such as CIA, as it would help patients master specific skills necessary to manage the disease [7].
The chronic course of the disease suggests that patients with CIA are constantly in need of education throughout their entire illness—an education that is tailored to their individual needs for learning and information [10]. Nurses contribute to patient education by teaching patients to self-inject medications [11, 12]; their support may also be helpful for the maintenance of a healthier lifestyle by encouraging patients to increase their physical activity [13] or quit smoking [14]. In addition, patient education enables nurses to provide patients with the information and emotional support they need [12].
There is a large body of evidence suggesting that patient education programs, based on long-term interactions with nurses, provide knowledge to patients during the entire course of their illness and may also positively change their lifestyle [13, 15].
2. Characteristics of patient education
Focus
Problem-oriented
Compliance with regulated principles and recommendations
Dynamism and relevance
Applicability
Measurability
Formation of attitudes and behaviors as part of coping with the disease process
As defined by the European League Against Rheumatism (EULAR), patient education “is a planned interactive learning process designed to support and enable people to manage their life with CIA and optimize their health and well-being, rather than be limited to the disease” [16], and it has become the core principle in rheumatology. This overarching principle applies to other chronic diseases as well [17, 18].
Through provision of education, health professionals convey information to patients and their caregivers in order to improve patients’ health and encourage them to make decisions in relation to the care provided to them. During the process of education, patients can put in practice their knowledge, skills, values, and attitudes associated with specific or general medical topics related to the adoption of a healthier lifestyle and appropriate use of medicines [19].
Perception of patient education as an integral part of CIA treatment ensures that patients will be able to perform self-management activities and will adhere to their treatment. Patient education aims at improving patients’ self-efficacy as a prerequisite for self-management [5].
A number of authors consider patient education as an integral part of disease management in people with CIA [16, 20, 21, 22, 23, 24, 25, 26]. It is, however, emphasized that educational needs may differ from one individual to another and may change over the course of the disease. It is recommended that patient education should begin immediately after the patient has been diagnosed or as early as possible; it also should be individually tailored and should address different aspects of the disease [3]. It has also been shown that patients need knowledge in order to exercise appropriate behavior and practices to manage their symptoms and complaints associated with their disease. Patients therefore seek information about their illness and its treatment, including pharmacological and non-pharmacological treatment options; they search for information about managing the psychological and emotional impacts of the illness and information about nutrition, exercise, pain control, and how to lead a stress-free life. Studies have also shown that patients’ educational needs depend on the characteristics of their diagnosis, sex, age, and duration of illness [10].
Being an essential part of nursing practice, patient education lies at the heart of all self-management interventions adapted to the type and severity of disease, individual social circumstances, and available resources [27]. Efforts to conduct effective education should be the task of both health professionals and the patients themselves.
2.1 The role of the nurse in patient education
In 2012, the European League Against Rheumatism (EULAR) released its recommendations on the role of nurses in the management of CIA, which includes rheumatoid arthritis (RA), ankylosing spondylitis (AS), and psoriatic arthritis (PsA). According to a 2018 update of these recommendations, patients should have access to a nurse for needs-based education and self-management support to improve knowledge about CIA and its management throughout the entire course of their disease. The recommendations focus on rheumatology nursing care and aim at educating patients based on their needs and satisfaction with care; these recommendations also aim at ensuring timely access to care, facilitating disease management, increasing care efficiency, providing psychosocial support, and promoting self-management [9].
The implementation of EULAR recommendations is based on the specialized training of rheumatology nurses. It has been noted, however, that the implementation of the recommendations varies in different regions of the world and they are least followed in Southern, Eastern, and Central Europe [8].
The EULAR recommendations state that non-pharmacological treatment should include patient education; they also highlight that providing information to patients is an important part of the treatment and emphasize the opportunity for implementation of educational programs as additional interventions in the treatment of early arthritis and ankylosing spondylitis (AS) [28, 29].
There are three overarching principles and eight recommendations included in the updated EULAR recommendations.
The principles define the nurse as an integral member of the healthcare team who provides evidence-based care and encourages shared decision-making when counseling a patient.
2.1.1 Overarching principles
Rheumatology nurses are part of a healthcare team
Being part of a multidisciplinary team, rheumatology nurses play an integrated role in patient care; they work in collaboration with the patient (and their family) and the rheumatologist or are involved in the process as part of a larger healthcare team [30].
Rheumatology nurses provide evidence-based care
Evidence-based nursing care provided by rheumatology nurses includes: (i) research evidence; (ii) clinical nursing experience; (iii) patients’ experiences, preferences, and values; and (iv) the local context [31, 32].
Rheumatology nursing is based on shared decision-making with the patient
Collaborative decision-making between the healthcare provider and the patient is crucial for providing quality health care [33, 34], with a commitment to understanding patient’s values and preferences.
2.1.2 Updated recommendations
Recommendation 1 states that patients should have access to a nurse for needs-based education to improve knowledge of CIA and its management throughout the course of their disease. The positive contribution of patient education refers to a number of educational activities, such as therapeutic and health education and health promotion, with the principal aim of improving patients’ knowledge and skills related to disease control so that they can manage their lives themselves [16].
According to Recommendation 2, patients should have access to nurse consultations in order to enhance satisfaction with care. In terms of ensuring quality of care, patients’ satisfaction with nursing care is given top priority and is considered of utmost importance. Maintaining a long-term patient–nurse relationship makes patients more confident and comfortable in managing their treatment, which emphasizes nurses’ holistic and professional approach to care [35].
Recommendation 3 states: Patients should have the opportunity of timely access to a nurse for needs-based support; this includes telehealth. The opportunity for patients to use new forms of communication, such as telehealth, provides them with access to a competent healthcare team and a sense of personalized care and support [36].
Recommendation 4 states :Nurses should participate in comprehensive disease management to control disease activity, reduce symptoms and improve patient-preferred outcomes; this leads to cost-effective care. The role of nurses as part of the healthcare team is to provide patient education and control and management of the disease, which may help lower the healthcare costs [24].
Recommendation 5: Nurses should address psychosocial issues to reduce patients’ symptoms of anxiety and depression. Dealing with symptoms of anxiety and depression requires nurses to identify them and support patients with psychosocial issues by means of referring them to special treatment or counselling [37].
Recommendation 6: Nurses should support self-management skills to increase patients’ self-efficacy. Self-management involves the patient’s ability to understand the disease and gain adequate knowledge and skills to manage the physical and psychosocial effects of the disease and to make lifestyle changes [38]. By mastering self-management skills, patients can achieve and maintain an independent lifestyle and become more confident and empowered to manage their illness.
The remaining two recommendations apply to education and access to advanced training in rheumatology for nurses so that they can maintain and improve their knowledge and skills and be encouraged to take on extended roles in compliance with national regulations.
In addition, rheumatology nurses play a major role in patient education with regard to infection prevention in screening for comorbidities and increasing the prescription of vaccines by the rheumatologist or general practitioner (GP). Therefore, rheumatology nurses help increase patients’ safety skills related to the administration of bDMARDs [7].
2.2 Goals of patient education
The main goal of patient education is to provide comprehensive care to patients with CIA.
Setting appropriate goals and objectives is crucial for the proper conduct of the educational process. Nurses need to have a good knowledge and understanding of educational goals, content, and materials. According to Wingard R., the effectiveness of patient education depends on the proper formulation of specific, measurable, and achievable goals [39]. By using appropriate tools to assess patient needs, nurses set goals and educational strategies aimed at providing appropriate patient care [40].
Understanding the impact of nurse-led education and its effect on the patient
Through education and training, nurses help patients take control of their health and thus improve their health status. Patient education should provide adequate information aimed at increasing the understanding of disease and provoking behavior directed toward protection and improvement of health [40]. Studies have shown that patients receive much of the information related to their health mainly from the nurse [41]. In this way, nurses have the opportunity to better assess patients’ educational needs and prepare them for learning [42]. Analyzing the nurse–patient interaction including promoting autonomy and empowerment, with the ability to adapt to the new life situation
An important aspect of caring for people with inflammatory arthritis (IA) is empowering them to acquire a good understanding of their disease and build abilities to deal effectively with the physical and psychological challenges of the disease. Nurses are in closest contact with patients; they spend much more time with them than any other member of the healthcare team, which helps them build trusting relationships with each other. Patient’s autonomy to make decisions is influenced by the nurse–patient relationship, which also has an effect on the quality and satisfaction of care received. Patient education, as a leading component of nursing care, has a positive impact on the patient’s life and can bring about lasting changes in their life [19]. Supporting patients in their self-management skills, including changes in lifestyle, physical activity, nutrition, and fighting bad habits such as smoking and alcohol consumption
Collaboration with patients in promoting healthy behavior includes avoiding harmful substances (e.g., alcohol and tobacco), maintaining physical activity, and developing healthy eating habits [43]; it also turns out to be the foundation on which nurses can empower patients and support their self-efficacy. Patient self-management support focuses on self-care, self-efficacy, and empowerment. The support provided by nurses can strengthen patients’ willpower as this can be done by acquiring the right knowledge and problem-solving skills. Interventions should be individually targeted and tailored to patient’s specific needs; they should also take into account various social and economic factors. Evaluation of the nurse’s role as part of a multidisciplinary team
As members of a multidisciplinary team, nurses are involved in the education, management, psychosocial support, and promotion of self-care in patients with CIA.
Patient education and counseling
To be effective patient educators, nurses must have special training in rheumatology and be familiar with the theoretical basis of patient education, which ensures the use of personalized tools for each individual patient in order to achieve optimal outcomes [44]. Involvement of all members of the healthcare team can contribute to the ongoing patient education, with each team member having some educational component to provide to the patient. Nurse-led education offers adequate resources including knowledge to improve skills needed to be involved in disease management. Formation of motivation to learn and cope with health problems
Knowledge and education are essential to motivate people to make changes in their lives. A better educated patient tends to take greater care of themselves by developing skills aimed at understanding and managing their own health throughout their entire life [45]. The drive to improve their own knowledge and skills encourages patients to be active participants in the management of their health. Receiving adequate information increases patients’ confidence and satisfaction; it also represents an important incentive to encourage patients to participate actively in their healthcare process [46]. Formation in the patient of willingness and need for a higher level of knowledge and self-efficacy
Patient education aims at providing relevant clinical information in order to increase the understanding of the disease and health promoting behavior [40]. With the right support, patients can learn how to use the resources provided in health programs.
Maintaining the quality of life of patients with CIA
Many educational programs have demonstrated improvement in patients’ understanding of their health status as well as in their knowledge, which has resulted in slowing or halting disease progression and maintaining quality of life [47]. Patient activation leads to an improvement of self-management; it is also associated with disease prevention, increased interest toward seeking health information and results in better quality of life, greater satisfaction with care, improved adherence to treatment, better knowledge, enhanced health status, and lower use of health services [48]. Studies confirm that nurse-led patient education provides opportunities and perspectives for a better life [49] as a prerequisite for maintaining a good quality of life.
2.3 Learning objectives
Acquiring knowledge, skills, and habits related to disease management by patients with CIA
Knowledge and skills allow patients to be involved in the management and treatment of the disease. Patients’ knowledge as part of a complex intervention influences patients’ beliefs and behaviors and is related to medical treatment [50]. Nurses can help patients acquire skills necessary to achieve health goals related to disease management.
Providing information and education to increase knowledge about the disease
Patients with inflammatory arthritis have high information demands; they seek up-to-date and individualized information [51]. Keeping patients informed about their health condition promotes the activation of self-management.
Improvement in care quality and patient safety
Patient education has been shown to improve patients’ quality of life, increase their understanding of their treatment program, and encourage self-management [40], with the potential to involve them in the management of their disease.
Conducting and achieving positive changes in patients’ self-care behaviors and health status
Involvement in disease control and management as well as providing information, awareness, and support prove to be a solid foundation for increasing patients’ sense of empowerment [52]. Patient education helps increase patients’ knowledge about their own health condition and provides an opportunity for them to change their health behaviors [50].
Building trusting relationships with patients
Nurses inspire a sense of safety, trust, hope, and confidence in patients. Patients prefer discussing issues with nurses rather than with doctors, which is why patient–nurse relations predominate over patient–doctor relations [52].
Adapting the treatment regimen to the disease activity
In the management of CIA, it is recommended to adapt treatment regimen to the disease activity. It involves adequate treatment and provision of appropriate educational support [53], thus encouraging patients to self-care.
Providing psycho-emotional support to patients
The first step in satisfying patients’ psychological needs is identifying psychological distress, which means recognizing the necessity for specialized training in this field. Nurses and other members of the healthcare team should be trained to provide adequate psychological support to patients with IA [54].
Use of resources appropriate for the patient
Patients may have different preferences for resources or may suffer specific limitations (visual or hearing impairment or limited motor skills) to which resources need to be tailored.
Assessment of patient’s needs, concerns, their willingness to learn, and their preferences
Patients should be offered only the amount of information they can handle at a time. There is a need to develop a care and support plan for the entire course of the disease that includes readiness for education and treatment preferences.
Assessment of patient’s abilities and provision of individualized treatment
Individual patient education cannot be substituted for any other resource.
Checking the patient’s understanding after patient education and analysis of possible obstacles to learning
Maintenance of knowledge and skills acquired in educational programs is important. Key elements to effective patient education include use of an open communication style, compliance with standards, and dealing with barriers to learning [55]. Continuous measurement of learning outcomes is necessary to improve patients’ health literacy. The feedback received from patients is a commonly used way to measure learning outcomes. The effectiveness of patient education may be affected by multiple factors, such as patient’s learning ability, literacy level, cultural environment, lack of resources and educational tools, lack of sufficient time, and so forth [56].
3. Patient education (PE): EULAR recommendations
In 2015, EULAR developed eight recommendations for education of patients with inflammatory arthritis; these are guidelines on the provision of PE and training of healthcare professionals to perform PE across Europe.
PE includes all educational activities provided to patients such as therapeutic training, health education, and health promotion. Patients are considered to be active participants in the management of their own disease.
PE achieves not only transfer of knowledge and control of disease; it also empowers patients to manage their disease, adapt to their condition, and maintain a better quality of life.
It has been shown that provision of PE varies across European countries. In some countries, PE is used only to provide knowledge, thus aiming at patient adherence to treatment. The extent to which different healthcare professionals (HP) are involved in PE according to their competence, availability, and education, as well as the organization of the relevant health system, is also essential. The implementation of the EULAR recommendations for education of patients with inflammatory arthritis would allow standardization and improvement of education for people with IA across Europe [16].
Based on evidence and expert opinion, two overarching principles and eight recommendations have been developed.
3.1 Overarching principles
PE is a planned interactive learning process designed to support and enable people to manage their life with IA and optimize their health and well-being.
Communication and shared decision-making between people with IA and their healthcare professionals are essential for effective PE.
EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA)
Recommendation 1: PE as an integral part of standard care
PE should be provided for people with IA as an integral part of standard care in order to enhance patient involvement in disease management. PE improves adherence to treatment and helps recognize side effects of medications.
Recommendation 2: PE throughout the course of the disease
All people with IA should have access to PE throughout the entire course of their disease, including at the time of diagnosis, in case of change in the pharmacological treatment or when required by the patient’s physical or psychological condition.
Recommendation 3: personalized and needs-based physical training
The content and delivery of PE should be individually tailored and needs-based for people with IA.
Recommendation 4: Modes of delivery of PE
PE for people with IA should include individual and/or group sessions, which can be provided through face-to-face or online interactions and supplemented by phone calls and written or multimedia material.
Recommendation 5: theoretical framework and evidence for PE
PE programs for IA patients should have a theoretical framework and be evidence-based. Interventions can be: educational programs, self-management programs (SMPs), cognitive behavioral therapy (CBT), or stress management.
Recommendation 6: PE results
The effectiveness of PE for people with IA should be evaluated, and the outcomes must reflect the objectives of the PE program.
Recommendation 7: competence in providing PE
PE should be carried out by competent healthcare specialists—for the most part, they should be HP and/or trained patients.
Recommendation 8: competence to teach PE
Providers of PE for people with IA should have access to and undertake specific training in order to obtain and maintain knowledge and skills.
Patient education, as defined in the recommendations, can facilitate patients to make informed choices in order to manage their disease [57].
4. Patient education practice guidelines for healthcare professionals
The guidelines address the following important questions:
What are the PE guidelines?
A patient education guide to evidence-based practice for healthcare professionals
Who should use the guidelines?
Any healthcare professional who provides patient education
Where should the guidelines be used?
In any setting where patients learn how to achieve healthcare goals
When should the guidelines be used?
Any time patient instructions are being given such as disease information, test preparation/results, treatment, accessing care, appointments, and resources
Why should the guidelines be used?
Provides care for consumers in achieving optimal levels of health.
How do you use the guidelines?
By following the steps in each section of the guidelines (assessment, planning, implementation, and evaluation)
The Patient Education Practice Guidelines for Healthcare Professionals was developed by the Health Care Education Association (HCEA). The guidelines are based on the four components of the patient education process.
The education process includes assessment, planning, implementation, and evaluation (APIE) [58].
The first step involves
The second step is to develop a
The third step in the process is the
Lastly, an
5. Forms of education
Patient education is offered to patients in groups or individually. Group education facilitates patients’ learning from each other, while individual education offers easier responsiveness to patients’ personal needs. In rheumatology, individual patient education is often carried out by nurses and covers a wide variety of different aspects of medical treatment. Individual consultations with an expert nurse have shown to have a positive impact on patients’ ability to control and manage their disease [59]. The following training tools can be used: brochures or other printed materials, podcasts, videos, presentations, posters, or diagrams or discussion with the patient to create individual tools for the patient’s needs. It is important to obtain patient feedback in order to gain information on the materials provided to the patient.
6. Conclusion
The role of nurses in CIA management varies considerably across countries and regions due to a variety of factors such as educational level, training, and experience.
EULAR recommendations support the involvement of nurses in the overall management of the disease and promotion of self-management to achieve a greater sense of self-efficacy and patient empowerment.
To improve the process of health care provided by nurses, it is appropriate to ensure continuous training in order to maintain and upgrade basic and advanced knowledge and skills in compliance with the recommendation of the EULAR for the improvement of their competencies, thus ensuring better quality of health care provided.
The guidelines provided above are applicable to the work of nurses practicing in the field of rheumatology, kinesitherapy, balneotherapy, and so on.
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