UPDATE ARTICLES

The challenges of rheumatologic nursing: a perspective on emerging care

Alessandra Sant'Anna Nunes^I; Helena Maria Scherlowski Leal David^II

^I Master's Degree in Nursing at Rio de Janeiro State University (UERJ – Universidade do Estado do Rio de Janeiro). Assistant Professor at the Department of Medical-Surgical Nursing, Faculty of Nursing, Rio de Janeiro State University (UERJ) Brazil. E-mail: asantnunes@gmail.com
^II PhD in Collective Health. Assistant Professor at the Department of Public Health Nursing and at the Nursing Graduate Program Faculty of Nursing, Rio de Janeiro State University (UERJ). Brazil. E-mail: helena.david@uol.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2014.12459

ABSTRACT: Chronic diseases comprise a group of chronic conditions that are usually related to multiple causes and present clinical courses that change over time, with possible exacerbation periods, which can generate disabilities. They require interventions associated with changes in lifestyle, in a process of continuous care that does not always lead to a cure. This paper aims at considering the challenges to nursing in the care of patients with chronic diseases in the field of rheumatology and at describing the main strategies to promote more effective care to that group. We can conclude that improving health care for patients with chronic diseases, such as the rheumatic ones highlighted here, requires both the implementation of more effective policies and the redesigning of processes and supply systems of actions and services.

Keywords: Emerging care; nursing; rheumatology; technological innovations.

INTRODUCTION

The present article aims to present considerations about the nursing challenges on the care of patients with chronic diseases in the rheumatologic area and to describe the main strategies to promote a more effective attention to this group.

Chronic diseases comprise a set of chronic conditions that in general are related to multiple causes, characterized by gradual onset, usually uncertain prognosis, with long or indefinite duration. They present a clinical course that changes over time, with possible periods of exacerbation, and may generate incapacities. They require: Interventions associated to changes in lifestyle, in a continuous attention process that does not always lead to the cure.¹

Currently, chronic conditions are responsible for 60% of all the burden of diseases in the world. The increase in the prevalence of these deteriorations is so vertiginous that, by the year 2020, 80% of the disease burden in developing countries will probably be caused by chronic problems. In these countries, adherence to treatment is only of 20%, leading to adverse statistics in the health area, with very high costs to society, the government and the families. Until today, throughout the world, the health systems do not hold a management plan of chronic conditions; they simply treat the symptoms when they appear.²

Recognizing the opportunity to improve the health services for chronic conditions, the World Health Organization (WHO) starter the project Innovative Care for Chronic Conditions (ICCC) – a comprehensive model for updating health services to address chronic conditions with a focus on adherence to long-term care.

The increase in life expectancy and in chronic diseases in the Western world has brought a greater demand for health care at all levels. This demand led to innovations in the organization and the provision of health actions, in which nurses and other healthcare professionals began to assume extended roles. This approach allows greater flexibility for care provisions, given that the patient is considered the center of the process of care and the traditional opinion of the central professional becomes less and less important.³

Thus, more and more the nurse's care becomes relevant in the treatment effectiveness of patients with chronic diseases, always based in protocols directed to their needs, aiming to give support to innovation challenges in this area. These challenges range from clinical decision making at first contact to the rehabilitation of the patient.

Based on the treatment effectiveness of such patients in chronic conditions, the nurses act in the perspective of an extended care, assume their own patient, establish and program nursing interventions. This care model has been successfully used in the management of other chronic diseases, in which patients require regular follow-up and monitoring, such as diabetes, chronic obstructive disease and heart failure.⁴

A chronic disease management program and the life quality evaluation have been proposed, due to the complexity of these conditions. It is pressing the need for interventions aiming to reduce the disease progression and decrease hospitalization, mortality and costs, mitigating the negative impacts of the disease for the individual, their family and society.⁵

This has been an attention style that allows the application of innovative measures for customized care - a new extended model, applied through adherence strategies, management, maintenance and monitoring of patients in chronic conditions.

Perspectives

A new extended model: ICCC

The new extended care model represents an important step for those responsible for policy making, health areas planning and other relevant agents to the development of actions aimed to reduce threats posed by chronic conditions.²

Eight essential elements to improve health systems are proposed by the new expanded model. They are: Supporting a paradigm shift; managing the political environment; developing an integrated health system; aligning sectoral policies to maximize health outcomes; making better use of human resources in the health sector; centralizing treatment in the patient and in the family; supporting patients in their communities; emphasizing prevention with strategies to minimize the onset of chronic conditions and their complications.²

It is noteworthy that in addition to the essential elements to enhance health systems, it is also vital to implement an Care Network to People with Chronic Diseases. However, the proper functioning of the Health Care Networks (RAS - Rede de Atenção à Saúde) primarily depends on the existence of a shared work among primary care professionals and focal experts. By focal experts, it is understood not only doctors, but also other professionals, such as nurses, whose performance is known to be effective and efficient.⁶

The implementation of the Care Network to People with Chronic Diseases is intended to promote changes in health care, which are critical and more linked to the changes in the work process of the teams, which must happen at all points of care, since the Primary Health Care (PHC), undergoing the Specialized Outpatient Care (SOC), urgency and hospital and home care.¹

The deep understanding of the user population of a service is an essential element for care organization. This makes it possible to break the care based on the offer of disorganized appointments and procedures, a characteristic of fragmented systems.¹

There are many chronic diseases affecting the Brazilian population and the knowledge of the epidemiology involving each, as well as their care needs, is essential for an assistance with more quality and effectiveness. In this perspective, this article addresses the elements that affect the chronic patient with rheumatologic disease.

Challenges of the rheumatologic disease

A historical clipping is necessary for the discussion of the nursing challenges in reumatology. Around 1980, in the United Kingdom, nursing care in rheumatology began in Leeds, where patients were part of a clinical trial and, when completed, they returned to the rheumatologic general outpatient clinic, and started looking for the nurses for their appointments follow-up.⁷

This movement led to the creation of nursing clinics, which worked alongside the clinics of rheumatologists and provided education, advice and support to the patient. This care model was replicated throughout the United Kingdom, with the hiring of specialized nurses, in rheumatology centers, for the monitoring of these patients.

Also in the United Kingdom, a systematic review was conducted to determine the effectiveness of nurse-led treatment in patients with rheumatoid arthritis (RA), i.e., whether they produced effects that were similar to traditional medical care. To meet this goal they sought studies that compared a particular intervention with another successful and already established one in health care.

All the studies assessed the effectiveness of the nurse-led care - clinical or specialized nurses - and all the patients receiving health care had rheumatoid arthritis with variable time and had been attended for clinical or drug use monitoring. This study concluded that there are not enough evidences to define if there is significant difference in the care provided by the nurse, when compared to the one developed by other professionals, mainly the medical professionals, and highlights that the limiting factor is the lack of good quality randomized clinical studies to supply evidences of the effectiveness of nurse care in patients with rheumatoid arthritis⁸.

In order to make some considerations about the role of nurses in the management of rheumatologic diseases, RA is an example, in which more than 90% of patients suffer from symptoms in their hand joints and which can be seriously disabling in performing the daily, work or leisure activities.

An integral management has been defended and used to deal with the consequences of the RA. Patients must be involved as partners in their care and the emotional and physical dimensions of their illness must be addressed and recognized by them.

And a second aspect of the study deals with the implications for clinical and policy practice, and states that the nurse included in a multidisciplinary appointment must focus especially on patients who exhibit needs that require extensive advice, considering that the cost reduction should not be expected directly after the inclusion of the nurse, since the performance of new health actions, by new professionals, represent, at first, additional costs to health systems.⁹

However, the studies allow to say that, although there is, initially, no cost reduction, the care provided by the specialized nurse is effective and must be incorporated into the structure of the new health care model in the rheumatology area and in all others involving the chronic patient care.

Basic knowledge of rheumatology in the specialized outpatient care

The rheumatology nurse specialist must be well informed of the processes and practice principles relevant to the specialty of rheumatology, be able to identify and manage several problems that patients with rheumatic diseases may develop, such as: management of pain, change in comfort with the emergence of rigidity, change in the energy level with fatigue, changes in physical mobility, self-concept disturbance, self-management decisions, ethnocultural diversity of the perception of the disease for patients and their family, self-care, participate in health policy, planning and development of actions.¹⁰

The assessment of the patient and the treatment plan are of paramount importance for success in nursing care in rheumatology. A summary of the main points that involve the assessment and treatment of the patient, proposed by the American Nurses Association and by Arthritis Association Health Professionals, is presented in Figure 1.¹¹

SOURCE: Result standards for the rheumatologic nursing practice.¹²
FIGURE 1: Assessment and treatment of patients with rheumatologic disease proposed by the American Nurses Association.

In addition to the careful evaluation and the specialized treatment plan, one of the key roles of the rheumatology nurse specialist is to promote adherence to treatment and understanding of the risks and benefits of drug therapy, encouraging their effective and reliable use.¹²

Lack of adherence to treatment has become a basic problem that affects many patients with chronic diseases. Nevertheless, there are still very few studies that address this subject. To date, few techniques have proven effective in increasing adherence to treatment, making this challenge ever greater for specialized nurses. In summary, the meta-analysis studies and the systematic review assessing interventions to increase adherence to the treatment concluded that there is not only one strategy but a sum of strategies, led by several experts, that can effectively contribute to overcome such problem.¹³

Among the strategies mentioned by several authors, it should be highlighted the education and support of patients with chronic diseases, such as rheumatology. It is clear that rheumatology nurse specialist play an important role in the education and support of patients with RA¹⁴. However, there is still lack of knowledge from the educational perspective of whether we should provide it to rheumatologic patients.

In a study with drug therapy that evaluated the satisfaction of patients about the information that had been provided by the nurses about the use of anti-rheumatologic drugs prescribed to them, around half was not satisfied with the information given. The main reason for dissatisfaction with the educational program was that the nurse did not focus on the emotional well-being of patients with RA, but on issues related to treatment.¹⁵

The results provided a useful view for the education of patients with rheumatologic disease, by emphasizing that the nurses must only avoid the transmission of information on a daily basis and encourage the discussion of the patient's feelings and concerns, especially with newly diagnosed patients. The patient's education must balance the information that patients need to adhere to the treatment and the knowledge about their disease with their need for emotional support.¹⁵

Studies indicate that the knowledge of the patients and their caregivers about their illness is rudimentary and limited to the sequels presented by the patients, observing a lack of preparation of the caregivers.

It should be once more noted the importance of health education among patients and their families / caregivers on the themes - disease, signs and symptoms recognition, risk factors control and home care after hospital discharge.¹⁶

Aiming to reach the expected balance for the treatment, nurses at the Hospital of Common Illnesses rheumatologic clinic at the New York University noticed the necessity to offer the patients more information on their health condition than what he was, routinely, given during the clinical visits they received. The key objective of the project developed by these professionals was to support the patient's inclusion in the therapeutical decision and to encourage their participation in the treatment planning. For this purpose, the team of nurses developed an educational program based on some topics related to arthritis, such as: medicine use, pain control, nutrition, sexual health, stress, physical therapy and psychosocial problems.¹⁴

It should be highlighted, therefore, the educative dimension, part of the nurse´s practice, as a central element for their work in rheumatology. Without dispensing clinical knowledge, it is a matter of providing the patient with a limiting impairment and with no perspective of cure, only of control, not only a cognitive support that maintains and encourages autonomy in daily self-care, including the one medicated¹⁷, but also the offer of a space for interaction and acceptance of emotional demands, reaffirming the integral character of nursing care.

CCONCLUSION

It can be concluded that the improvement of health care for bearers of chronic diseases, in here with emphasis to the rheumatologic, will demand the implementation of more effective guidelines and the redesign of processes and of systems of action and service offers. The referral of patients to specialized care is a key component of the health system, and we know what still needs to be perfected in the public system. The care for patients with medium and high complexity chronic diseases, which are serviced on specialized outpatient attention, still need to be further studied and expanded. The effectiveness of the treatment for complex health problems may be greater when they include the care guidelines, the provider's role, the uniform coding of actions and services, with emphasis on patient education, what includes the specialty reference management pre-appointment and the monitoring of the care management process.

Finally, the treatment of rheumatic diseases becomes more effective when performed by a multidisciplinary team, with regular monitoring of the patient, involving adherence to medicinal therapy, mild to moderate physical exercise, physiotherapy, joint protection, self-management of care (including medication), health education and psychosocial support. This factor, therefore, summons nursing to undertake this added challenge, with a view to the best possible care for people's health, at both individual and collective levels.

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