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Running Head: RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 1
Rheumatic Disease Care and Nursing, Using Biologics
Rebekah Frazier
Azusa Pacific University, Inland Empire Regional Center
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 2
Rheumatic Disease Care and Nursing, Using Biologics
There are more than 100 diseases that can be classified as rheumatic, such as rheumatoid
arthritis (RA), lupus, lime disease and fibromyalgia, the category of rheumatic diseases is
expansive. While some of these diseases stem from random sources like lyme disease, which
come from tick bites, the majority of rheumatic diseases generate from autoimmune
dysfunctions. Essentially, rheumatic diseases are characterized by inflammation and functional
loss of supporting structures in the body (National Institute of Arthritis and Musculoskeletal and
Skin Diseases NIAMS, 2014). Specifically, the body parts that are affected tend to be muscles,
joints, tendons, bones and ligaments and show symptoms of swelling, stiffness and pain. This
translates to having daily issues with activities like walking, holding objects, sitting or getting
dressed. To accompany the vast list of rheumatic diseases, there are many different treatments
available for those who are afflicted with these painful diseases. Although there are many
available, some treatments for rheumatic diseases consist of NSAIDs (non-steroidal anti-
inflammatory drugs), antidepressants, corticosteroids, and biologics (Cedars-Sinai, 2015). The
purpose of this paper is to explore the nurse’s role in rheumatic treatment, regarding patient
education of the use of biologic treatments. The use of biological treatments is essential as an
alternative in treating patients who do not respond well to standard treatments. Considering that
everybody has a different body, each individual may not react successfully to certain traditional
or “standard” treatments, which is why biologic treatments are so important.
Both standard and biologic treatments are therapeutic for those afflicted with rheumatic
disease, however, it is important to note the basic mechanisms of each treatment and how they
differ. To start, the realm of standard treatments consists of NSAIDs, corticosteroids, and
antidepressants, which help alleviate the pain caused by rheumatic disease. Disease-specific
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 3
treatments are also standard treatments which are generally the first and main substances used to
treat specific rheumatic diseases, such as oral antibiotics which treats lyme disease.
Biologic Treatment
Biologic treatments are used mainly in treating RA, however, they are also used among a
large array of other rheumatic diseases. Examples of biologic treatments are disease-modifying
anti-rheumatic drugs) DMARDs and immunosuppresants. DMARDs essentially manipulate the
inflammatory response so that it reacts slower, or does not react in ways that will damage body
tissues. Immunosuppressants help reduce the response of the immune system so the body does
not try to attack its own tissue as it commonly does with most rheumatic diseases. Biologic
drugs can come from a variety of sources such as humans, animals, mirco-organisms,
recombinant therapeutic proteins, gene therapy, blood components, vaccines and many more.
The components that can comprise biologic treatments can be as commonplace as proteins and
nucleic acids or as complex as living cells and tissues. What sets biologic treatments apart from
standard treatments is that while standard treatments are synthesized chemically and have a
known structure, most biologics are complex mixtures that cannot be easily identified or
characterized. Mixtures like these are useful for those patients that do not merely respond to the
pain mediation of standard treatments, but require specific immune system manipulation.
Rheumatic Patients
Due to the nature of many rheumatic diseases, there can be severe damage to the lives of
those afflicted with rheumatic diseases. Attitudes, daily activities, social life, emotional status,
occupational capabilities, and physical fitness are just some aspects of life that may be affected
by rheumatic diseases. Explaining how rheumatic diseases may influence emotions, one study
states, “In addition to these cognitive perceptions, patients’ have emotional responses to illness
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 4
including anger, anxiety and depression (Lochting, Fjerstad & Garrat 2013, p. 2). There are
many musculoskeletal and joint issues that arise from rheumatic diseases, especially, disabilities
that may arise as a result of being diagnosed with a rheumatic disease. This can lead to feeling
helpless, useless, anxious or depressed. To reinforce the importance of attitudes, “The patient’s
beliefs and perceptions relating to their illness are associated with how the illness affects them
both physically and emotionally” (Lochting, et al., 2013, pgs. 2-3). Needless to say, the intense
pain that may be felt as a result of rheumatic diseases is enough to affect their attitudes about
their affliction, which is essentially something that will affect their outlook on life in general.
In addition to their attitude toward their affliction, rheumatic diseases can cause
emotional issues through their occupational capabilities. For example, imagine how a 30 year old
single mother will view her life if she cannot work everyday to provide for her daughter due to
the pain she experiences everyday. One study, that assessed occupations and the effect they have
on perceived health in women, noted that if participants were able to continue performing daily
occupations, they were able to perceive good health despite their diseases (Hammar &
Hakansson, 2013, p.85). Occupational capabilities can affect a person’s sense of autonomy if
they aren’t able to perform the necessary tasks to take care of themselves as an adult, such as
working. Another study explains physical limitations can affect autonomy, “In accordance with
previous research with individuals with physical disabilities, it was found that their experience of
autonomy is linked to the social situation” (Nyman & Lund 2007, p. 70). This further
demonstrates the effects occupational capabilities can have because if a person has physical
disabilities or limitations due to rheumatic diseases, they will not be able to perform activities
like work, which can affect their autonomy. If a patient continues to be afflicted with constant
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 5
pain, even more facets of their life may come to be affected if they do not receive adequate
treatment.
Rheumatics and Nursing
Although there are various treatments available to patients with rheumatic diseases, the
delivery of those treatments can vary and have different impacts. It is important to keep in mind
that while not everyone will react successfully to standard treatments, biologics can be
beneficial. While biologics may be helpful, nurses may use other types of care that can enhance
the effectiveness of treatment or influence parts of the body that are affected by rheumatic
disease, but not affected by biologics. One study explains, “The meaning of self-care for people
living with rheumatic diseases is to be in a constant ongoing dialogue with the body, where
emotions, thoughts and stimuli of the senses can be known and heard” (Arvidsson, et al., 2010, p.
1,267). This is an approach that nurses may use to delivering care, constantly monitoring how the
body is handling treatment. Therefore, the nurse’s role in providing care to patients with
rheumatic diseases will cover the holistic part of treating rheumatic disease.
There are many facets to consider, when examining each patient’s experience with
rheumatic disease. The nurse’s role is pivotal in providing education regarding these different
facets. There are some patients who have the luxury of having relatives, and close friends who
either take the time to research the patient’s condition, or have careers that interface with the
condition, such as health care professionals. Not all patients have this resource, leaving the nurse
to be one of the most frequent, if not only, sources of information regarding their condition. Due
to the fact that nurses provide frequent, individualized care throughout their shifts to each
patient, they interface with their patients more than doctors do. This places the nurse in a position
to literally spend more time at the patient’s bedside, monitoring the patient’s progression, and
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 6
building a relationship with the patient. One study that analyzed doctor and patient interaction
stated, “at least half of the appointments were purely instrumental in nature… both the physician
and the patient only discussed the medical reason for the visit without engaging in other more
personal non-medical communications.” (Desjarlais-deKlerk & Wallace, 2013 p. 3). This
reinforces that sometimes, even with the infrequent interactions that doctors have with patients,
sometimes these interactions aren’t as engaging of the patient’s comprehensive lifestyle. There
may be important factors that are crucial in approaches to treatment that may never be known if
the necessary time isn’t spent or the right questions aren’t asked.. Part of what nurses have to do
is to ask these necessary questions, in order to establish rapport and make the patient feel
comfortable. To emphasize the advantages of nursing, nurses spend more time with each patient.
Patient Education
Elaborating more on the advantages of nursing, patient education is central to lessening
hospital readmission rates, and increasing the effectiveness of patient self care outside of the
hospital setting. With as much contact that nurses have with their patients afflicted with
rheumatic disease, nurses have the opportunities to teach, correct and reinforce healthy lifestyle
principles. This is a great way to increase the potential that patients will learn what rheumatic
illnesses are, and how to maintain a fulfilling and healthy lifestyle while undergoing treatment.
One study that analyzed nurse-led rheumatology clinics found that, “They [nurses] also have
greater knowledge of the disease and treatment in addition to positive results in terms of disease
activity, functioning and health as well as less pain” (Larsson et al., 2014, p. 165). This
demonstrates that rheumatology nurses have a thorough understanding of rheumatic diseases and
can disseminate that information to patients, yielding positive results and well-being.
Considering that every patient is different and may require different treatments, the nurse may
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 7
need to provide different types of education, regarding the types of practices the patient may
need to engage in to sustain the most comfortable lifestyle possible. For instance, one patient
may be non-responsive to standard treatments, allergic to corticosteroids, and likes to run
everyday. The nurse may note that a side effect of a specific DMARD is not compatible with the
patient’s current lifestyle of running and provide education on healthy ways to continue physical
activities that make the patient happy and don’t interfere with the medication. The nurse may
also educate the patient on specific symptoms to monitor if or when they manifest, to avoid
further complications of rheumatic illness.
Due to the complicated and systemic aspect of rheumatic illness, patient education is one
of the most important jobs a nurse has in their scope of practice. However, for those patients that
do not respond to standard treatment, education may be different. Reinforcing this point, one
study notes, “The biological nurse needs to be well equipped with an in-depth nursing
knowledge, built upon a foundation of biologic therapy and disease activity experience/training”
(Palmer & Miedany, 2010, p. 478). Additionally, the same study states, “Assessing patients,
educating them regarding their proposed management and teaching them how to administer
subcutaneous injection would be their next challenge” (Palmer & Miedany, 2010, p. 479) This
displays the difference between self care of patients who use standard treatments and patients
who use biologics, because a lot of DMARDs come as shots, and patients would need to
administer these shots at home. Therefore, they would need to be properly educated on
appropriate ways to administer self injections on their own, while maintaining sanitary injection
practices. As previously discussed, there aren’t as many options for treatment for those who do
not respond well to standard treatments, except things like DMARDs, meditation or acupuncture.
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 8
The field of studying biologic treatments for rheumatic diseases must be broadened so that those
who suffer from rheumatic illness will have the best evidence-based treatments available.
Another important part of patient education is not only teaching patients that are
diagnosed with rheumatic illnesses, but also teaching their loved ones and support systems about
the illness, treatments and potential outcomes. If the patient is dependent on another person for
care, such as a child, the elderly, or an adult that cannot take care of themselves easily, it is
necessary to teach their primary caregivers about how to live well with these diseases. For
example, if an elderly patient who has memory issues but lives with their child, who is the
elderly patient’s primary caretaker, the elderly patient cannot be expected to know and remember
specific instructions for medication administration; it would be essential for the primary
caretaker to be informed of the plan of care upon discharge. Also informing the patient’s loved
ones, even if they aren’t the patient’s main caregiver is beneficial so that the patient’s family are
on the same page with the patient and hospital staff. This not only avoids confusion, but also
provides extra encouragement for the patient because the patient may not want to follow their
prescription or make the lifestyle choices necessary to live healthier. Some medications like
plaquenil, can cause nausea or vomiting, which can be an obstacle for some patients, which can
deter patients from wanting to take the medication (“Plaquenil Side Effects,” 2015). As well as
providing the encouragement in fulfilling the prescription, the patient’s family and loved ones
can also act as an advocate for the patient to see if a different medication can be prescribed.
Advocacy can come from different sources, and while advocacy that comes from family
is important, advocacy from the patient is equally important. Some patients do not have
resources that will go with them to each appointment, leaving the patient as their own advocate.
This requires different types of action, whether it to be asking the doctor for different
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 9
medications to treat their specific rheumatic disease, asking for community support groups for
people with rheumatic diseases, or simply following their prescription properly. Community
support groups can be beneficial for people with rheumatic diseases that find it hard or
unpleasant to interact socially. Often because of the intense pain that can penetrate the body, it
can become difficult or less desirable to go outside frequently, or visit with friends, all of which
are important activities that can alleviate mental anguish caused by rheumatic disease. One
article states, “In patients who attended at least 5 of all 10 sessions, an increase in expressing
positive feelings towards others was found at followup” (Savelkoul et al., 2004, p. 605). This
indicates a benefit in support groups for patients diagnosed with rheumatic diseases.
However, if patients feel such anguish, how are they to feel the motivation and drive to
socially interact? This is where it is important for the nurse to empower patients to do what is
necessary to live well, with rheumatic disease. If patients do not have the family support, and
they themselves do not support their own health, the nurse must become the advocate for the
patient. This can entail positive messages throughout the shift to lift the patient’s spirits, or
elaborating on the appeal of interacting with friends. Some patients may not completely envision
the entire picture, so they may not see how their decisions may influence the course of their
rheumatic disease. Other ways that nurses can provide empowerment to patients is to put the
situation in perspective for the patient by describing the possible effects of the disease and
elaborating on how helpful the medications or hospital staff’s suggestions will be.
Taking into consideration, the different actions the nurse can take to help patients with
rheumatic diseases, there are challenges nurses may face to successfully helping patients. First,
nurses may assume the patient’s level of concern about their rheumatic illness is greater than it
actually is. For instance, a nurse may think about the severity of a rheumatic disease such as
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 10
rheumatoid arthritis and imagine different outcomes such as osteoporosis and assume that
because of the severity, any patient would want to prevent those complications. However, one
study found, “RN’s are not always aware of their patients’ perspective and preferences when it
comes to participation in clinical decision-making, tending to overestimate their preferences in
assuming an active role,” (Florin et al., 2006, p. 1,498). This explains that some patients may not
care about their health status as much as nurses do. What nurses can do, is to first examine their
patients’ attitudes and attempt empowering or promoting, as previously discussed in this paper,
but from the patients’ perspectives., in order to fully address the patient’s concerns, whether
these concerns being health-related or not.
Another challenge nurses may face is that there aren’t as many supplemental resources
available to educate patients further on the severity of their rheumatic diseases. If a patient is
hospitalized for a complication or a severe reaction of their illness, then perhaps there is more
time and opportunity to educate them about their disease. However, if a patient is coming in to
have a prescription adjusted, obtain a new prescription, or have a physician examine an update
on their condition, there may not be much time to devote an hour long education session. One
program found that “The self-care promoting problem-based learning programme enabled people
with rheumatic diseases to improve their empowerment compared with the control group,” after
implementing an education program about rheumatic illnesses, the obstacles involved, and
solutions to living comfortably (Arvidsson, S., Bergman, Arvidsson, B., Fridlund, & Tingström,
2013, p. 1,500). What researchers can do is develop more of these programs, or further modify
this program to ensure more effective outcomes and possible resources available for rheumatic
illness patients.
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 11
Conclusion: Further research
In conclusion, patients diagnosed with rheumatic illnesses undergo numerous,
complicated changes that affect their daily living and functioning. This places different
repercussions on their lives, such as hopelessness and limited social interaction. The
rheumatology nurse must take on numerous roles to ensure the best outcome for their patient,
such as health educator, family connector, advocate, motivator and coach. Due to the different
obstacles that nurses face in delivering care to patients diagnosed with rheumatic illness, more
research should be conducted to create or improve education programs. These education
programs can not only provide education regarding disease pathology, treatment options, disease
complications, and social implications, but they also empower individuals afflicted with these
rheumatic illnesses to become proactive in their health. In addition to conducting further research
into education programs for rheumatic disease patients, further research in biologic treatment
must also be conducted. Research in both fields are vital and proactive steps in the future of
studying rheumatic diseases, and furthermore improving the options available and outcomes for
these patients afflicted with rheumatic illness.
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 12
References
Arvidsson, S., Bergman, S., Arvidsson, B., Fridlund, B., & Tingström, P. (2013). Effects of a
self-care promoting problem-based learning programme in people with rheumatic
diseases: a randomized controlled study. Journal of Advanced Nursing, 69(7), 1500-1514
15p. doi:10.1111/jan.12008
Arvidsson, S., Bergman, S., Arvidsson, B., Fridlund, B., & Tops, A. B. (2011). Experiences of
health-promoting self-care in people living with rheumatic diseases. Journal of
Advanced Nursing, 67(6), 1264-1272 9p. doi:10.1111/j.1365-2648.2010.05585.x
Cedars-Sinai. (2015). Rheumatic Disease Drug Therapy [Data File]. Retrieved from:
https://www.cedars-sinai.edu/Patients/Programs-and
Services/Rheumatology/Treatments/Drug-Therapy/
Desjarlais-deKlerk, K., & Wallace, J. E. (2013). Instrumental and socioemotional
communications in doctor-patient interactions in urban and rural clinics. BMC Health
Services Research, 13(261). doi:10.1186/1472-6963-13-261
Drugs.com. (2015). Plaquenil Side Effects [Data Set]. Retrieved from:
http://www.drugs.com/sfx/plaquenil-side-effects.html
Florin, J., Ehrenberg, A., & Ehnfors, M. (2006). Patient participation in clinical decision-making
in nursing: a comparative study of nurses' and patients' perceptions. Journal of Clinical
Nursing, 15(12), 1498-1508 11p. doi:10.1111/j.1365-2702.2005.01464.x
Larsson, I., Fridlund, B., Arvidsson, B., Teleman, A., & Bergman, S. (2014). Randomized
controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy.
Journal of Advanced Nursing, 70(1), 164-175 12p. doi:10.1111/jan.12183
Løchting, I., Fjerstad, E., & Garratt, A. M. (2013). Illness perceptions in patients receiving
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 13
rheumatology rehabilitation: Association with health and outcomes at 12 months. BMC
Musculoskeletal Disorders, 14(28). doi:10.1186/1471-2474-14-28
National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2014). Arthritis and
Rheumatic Diseases [Data File]. Retrieved
from:http://www.niams.nih.gov/health_info/arthritis/arthritis_rheumatic.asp
Nyman, A., & Lund, M. (2007). Influences of the social environment on engagement in
occupations: The experience of persons with rheumatoid arthritis. Scandinavian Journal
of Occupational Therapy, 14(1), 63-72 10p.
Ottenvall Hammar, I., & Håkansson, C. (2013). The importance for daily occupations of
perceiving good health: Perceptions among women with rheumatic diseases.
Scandinavian Journal of Occupational Therapy, 20(2), 82-92 11p.
doi:10.3109/11038128.2012.699978
Palmer, D., & El Miedany, Y. (2010). Biological nurse specialist: goodwill to good practice.
British Journal of Nursing, 19(8), 477-480 4p.
Salvelkoul, M., DeWitte, L.P. (2004). Mutual support groups in Rheumatic Diseases: effects and
participants’ perceptions. Arthritis & Rheumatism {Arthritis Care & Research}, 51(4),
605-608.
RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 14
I. Introduction: Rheumatic Disease
a. Background information about different types of rheumatic diseases
b. List different treatments
c. Thesis: The purpose of this paper is to explore the nurse’s role in rheumatic
treatment, regarding patient education of the use of biologic treatments.
II. Body
a. Biologic Treatments
i. Discuss what comprises biologics
ii. Discuss what biologics do for rheumatic disease patients
b. Rheumatic patients
i. Discuss impact rheumatic disease has on patients
ii. Mental impact/Emotional impact
iii. Autonomy and occupational meaning
c. Rheumatics and nursing
i. Treatment deliveries
ii. The nurse’s role
iii. Nurse vs Doctor
d. Patient Education
i. Family involvement
ii. Patient empowerment
iii. The challenges to nurses providing care
III. Conclusion: further research

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RFra_FinalPaper

  • 1. Running Head: RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 1 Rheumatic Disease Care and Nursing, Using Biologics Rebekah Frazier Azusa Pacific University, Inland Empire Regional Center
  • 2. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 2 Rheumatic Disease Care and Nursing, Using Biologics There are more than 100 diseases that can be classified as rheumatic, such as rheumatoid arthritis (RA), lupus, lime disease and fibromyalgia, the category of rheumatic diseases is expansive. While some of these diseases stem from random sources like lyme disease, which come from tick bites, the majority of rheumatic diseases generate from autoimmune dysfunctions. Essentially, rheumatic diseases are characterized by inflammation and functional loss of supporting structures in the body (National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS, 2014). Specifically, the body parts that are affected tend to be muscles, joints, tendons, bones and ligaments and show symptoms of swelling, stiffness and pain. This translates to having daily issues with activities like walking, holding objects, sitting or getting dressed. To accompany the vast list of rheumatic diseases, there are many different treatments available for those who are afflicted with these painful diseases. Although there are many available, some treatments for rheumatic diseases consist of NSAIDs (non-steroidal anti- inflammatory drugs), antidepressants, corticosteroids, and biologics (Cedars-Sinai, 2015). The purpose of this paper is to explore the nurse’s role in rheumatic treatment, regarding patient education of the use of biologic treatments. The use of biological treatments is essential as an alternative in treating patients who do not respond well to standard treatments. Considering that everybody has a different body, each individual may not react successfully to certain traditional or “standard” treatments, which is why biologic treatments are so important. Both standard and biologic treatments are therapeutic for those afflicted with rheumatic disease, however, it is important to note the basic mechanisms of each treatment and how they differ. To start, the realm of standard treatments consists of NSAIDs, corticosteroids, and antidepressants, which help alleviate the pain caused by rheumatic disease. Disease-specific
  • 3. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 3 treatments are also standard treatments which are generally the first and main substances used to treat specific rheumatic diseases, such as oral antibiotics which treats lyme disease. Biologic Treatment Biologic treatments are used mainly in treating RA, however, they are also used among a large array of other rheumatic diseases. Examples of biologic treatments are disease-modifying anti-rheumatic drugs) DMARDs and immunosuppresants. DMARDs essentially manipulate the inflammatory response so that it reacts slower, or does not react in ways that will damage body tissues. Immunosuppressants help reduce the response of the immune system so the body does not try to attack its own tissue as it commonly does with most rheumatic diseases. Biologic drugs can come from a variety of sources such as humans, animals, mirco-organisms, recombinant therapeutic proteins, gene therapy, blood components, vaccines and many more. The components that can comprise biologic treatments can be as commonplace as proteins and nucleic acids or as complex as living cells and tissues. What sets biologic treatments apart from standard treatments is that while standard treatments are synthesized chemically and have a known structure, most biologics are complex mixtures that cannot be easily identified or characterized. Mixtures like these are useful for those patients that do not merely respond to the pain mediation of standard treatments, but require specific immune system manipulation. Rheumatic Patients Due to the nature of many rheumatic diseases, there can be severe damage to the lives of those afflicted with rheumatic diseases. Attitudes, daily activities, social life, emotional status, occupational capabilities, and physical fitness are just some aspects of life that may be affected by rheumatic diseases. Explaining how rheumatic diseases may influence emotions, one study states, “In addition to these cognitive perceptions, patients’ have emotional responses to illness
  • 4. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 4 including anger, anxiety and depression (Lochting, Fjerstad & Garrat 2013, p. 2). There are many musculoskeletal and joint issues that arise from rheumatic diseases, especially, disabilities that may arise as a result of being diagnosed with a rheumatic disease. This can lead to feeling helpless, useless, anxious or depressed. To reinforce the importance of attitudes, “The patient’s beliefs and perceptions relating to their illness are associated with how the illness affects them both physically and emotionally” (Lochting, et al., 2013, pgs. 2-3). Needless to say, the intense pain that may be felt as a result of rheumatic diseases is enough to affect their attitudes about their affliction, which is essentially something that will affect their outlook on life in general. In addition to their attitude toward their affliction, rheumatic diseases can cause emotional issues through their occupational capabilities. For example, imagine how a 30 year old single mother will view her life if she cannot work everyday to provide for her daughter due to the pain she experiences everyday. One study, that assessed occupations and the effect they have on perceived health in women, noted that if participants were able to continue performing daily occupations, they were able to perceive good health despite their diseases (Hammar & Hakansson, 2013, p.85). Occupational capabilities can affect a person’s sense of autonomy if they aren’t able to perform the necessary tasks to take care of themselves as an adult, such as working. Another study explains physical limitations can affect autonomy, “In accordance with previous research with individuals with physical disabilities, it was found that their experience of autonomy is linked to the social situation” (Nyman & Lund 2007, p. 70). This further demonstrates the effects occupational capabilities can have because if a person has physical disabilities or limitations due to rheumatic diseases, they will not be able to perform activities like work, which can affect their autonomy. If a patient continues to be afflicted with constant
  • 5. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 5 pain, even more facets of their life may come to be affected if they do not receive adequate treatment. Rheumatics and Nursing Although there are various treatments available to patients with rheumatic diseases, the delivery of those treatments can vary and have different impacts. It is important to keep in mind that while not everyone will react successfully to standard treatments, biologics can be beneficial. While biologics may be helpful, nurses may use other types of care that can enhance the effectiveness of treatment or influence parts of the body that are affected by rheumatic disease, but not affected by biologics. One study explains, “The meaning of self-care for people living with rheumatic diseases is to be in a constant ongoing dialogue with the body, where emotions, thoughts and stimuli of the senses can be known and heard” (Arvidsson, et al., 2010, p. 1,267). This is an approach that nurses may use to delivering care, constantly monitoring how the body is handling treatment. Therefore, the nurse’s role in providing care to patients with rheumatic diseases will cover the holistic part of treating rheumatic disease. There are many facets to consider, when examining each patient’s experience with rheumatic disease. The nurse’s role is pivotal in providing education regarding these different facets. There are some patients who have the luxury of having relatives, and close friends who either take the time to research the patient’s condition, or have careers that interface with the condition, such as health care professionals. Not all patients have this resource, leaving the nurse to be one of the most frequent, if not only, sources of information regarding their condition. Due to the fact that nurses provide frequent, individualized care throughout their shifts to each patient, they interface with their patients more than doctors do. This places the nurse in a position to literally spend more time at the patient’s bedside, monitoring the patient’s progression, and
  • 6. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 6 building a relationship with the patient. One study that analyzed doctor and patient interaction stated, “at least half of the appointments were purely instrumental in nature… both the physician and the patient only discussed the medical reason for the visit without engaging in other more personal non-medical communications.” (Desjarlais-deKlerk & Wallace, 2013 p. 3). This reinforces that sometimes, even with the infrequent interactions that doctors have with patients, sometimes these interactions aren’t as engaging of the patient’s comprehensive lifestyle. There may be important factors that are crucial in approaches to treatment that may never be known if the necessary time isn’t spent or the right questions aren’t asked.. Part of what nurses have to do is to ask these necessary questions, in order to establish rapport and make the patient feel comfortable. To emphasize the advantages of nursing, nurses spend more time with each patient. Patient Education Elaborating more on the advantages of nursing, patient education is central to lessening hospital readmission rates, and increasing the effectiveness of patient self care outside of the hospital setting. With as much contact that nurses have with their patients afflicted with rheumatic disease, nurses have the opportunities to teach, correct and reinforce healthy lifestyle principles. This is a great way to increase the potential that patients will learn what rheumatic illnesses are, and how to maintain a fulfilling and healthy lifestyle while undergoing treatment. One study that analyzed nurse-led rheumatology clinics found that, “They [nurses] also have greater knowledge of the disease and treatment in addition to positive results in terms of disease activity, functioning and health as well as less pain” (Larsson et al., 2014, p. 165). This demonstrates that rheumatology nurses have a thorough understanding of rheumatic diseases and can disseminate that information to patients, yielding positive results and well-being. Considering that every patient is different and may require different treatments, the nurse may
  • 7. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 7 need to provide different types of education, regarding the types of practices the patient may need to engage in to sustain the most comfortable lifestyle possible. For instance, one patient may be non-responsive to standard treatments, allergic to corticosteroids, and likes to run everyday. The nurse may note that a side effect of a specific DMARD is not compatible with the patient’s current lifestyle of running and provide education on healthy ways to continue physical activities that make the patient happy and don’t interfere with the medication. The nurse may also educate the patient on specific symptoms to monitor if or when they manifest, to avoid further complications of rheumatic illness. Due to the complicated and systemic aspect of rheumatic illness, patient education is one of the most important jobs a nurse has in their scope of practice. However, for those patients that do not respond to standard treatment, education may be different. Reinforcing this point, one study notes, “The biological nurse needs to be well equipped with an in-depth nursing knowledge, built upon a foundation of biologic therapy and disease activity experience/training” (Palmer & Miedany, 2010, p. 478). Additionally, the same study states, “Assessing patients, educating them regarding their proposed management and teaching them how to administer subcutaneous injection would be their next challenge” (Palmer & Miedany, 2010, p. 479) This displays the difference between self care of patients who use standard treatments and patients who use biologics, because a lot of DMARDs come as shots, and patients would need to administer these shots at home. Therefore, they would need to be properly educated on appropriate ways to administer self injections on their own, while maintaining sanitary injection practices. As previously discussed, there aren’t as many options for treatment for those who do not respond well to standard treatments, except things like DMARDs, meditation or acupuncture.
  • 8. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 8 The field of studying biologic treatments for rheumatic diseases must be broadened so that those who suffer from rheumatic illness will have the best evidence-based treatments available. Another important part of patient education is not only teaching patients that are diagnosed with rheumatic illnesses, but also teaching their loved ones and support systems about the illness, treatments and potential outcomes. If the patient is dependent on another person for care, such as a child, the elderly, or an adult that cannot take care of themselves easily, it is necessary to teach their primary caregivers about how to live well with these diseases. For example, if an elderly patient who has memory issues but lives with their child, who is the elderly patient’s primary caretaker, the elderly patient cannot be expected to know and remember specific instructions for medication administration; it would be essential for the primary caretaker to be informed of the plan of care upon discharge. Also informing the patient’s loved ones, even if they aren’t the patient’s main caregiver is beneficial so that the patient’s family are on the same page with the patient and hospital staff. This not only avoids confusion, but also provides extra encouragement for the patient because the patient may not want to follow their prescription or make the lifestyle choices necessary to live healthier. Some medications like plaquenil, can cause nausea or vomiting, which can be an obstacle for some patients, which can deter patients from wanting to take the medication (“Plaquenil Side Effects,” 2015). As well as providing the encouragement in fulfilling the prescription, the patient’s family and loved ones can also act as an advocate for the patient to see if a different medication can be prescribed. Advocacy can come from different sources, and while advocacy that comes from family is important, advocacy from the patient is equally important. Some patients do not have resources that will go with them to each appointment, leaving the patient as their own advocate. This requires different types of action, whether it to be asking the doctor for different
  • 9. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 9 medications to treat their specific rheumatic disease, asking for community support groups for people with rheumatic diseases, or simply following their prescription properly. Community support groups can be beneficial for people with rheumatic diseases that find it hard or unpleasant to interact socially. Often because of the intense pain that can penetrate the body, it can become difficult or less desirable to go outside frequently, or visit with friends, all of which are important activities that can alleviate mental anguish caused by rheumatic disease. One article states, “In patients who attended at least 5 of all 10 sessions, an increase in expressing positive feelings towards others was found at followup” (Savelkoul et al., 2004, p. 605). This indicates a benefit in support groups for patients diagnosed with rheumatic diseases. However, if patients feel such anguish, how are they to feel the motivation and drive to socially interact? This is where it is important for the nurse to empower patients to do what is necessary to live well, with rheumatic disease. If patients do not have the family support, and they themselves do not support their own health, the nurse must become the advocate for the patient. This can entail positive messages throughout the shift to lift the patient’s spirits, or elaborating on the appeal of interacting with friends. Some patients may not completely envision the entire picture, so they may not see how their decisions may influence the course of their rheumatic disease. Other ways that nurses can provide empowerment to patients is to put the situation in perspective for the patient by describing the possible effects of the disease and elaborating on how helpful the medications or hospital staff’s suggestions will be. Taking into consideration, the different actions the nurse can take to help patients with rheumatic diseases, there are challenges nurses may face to successfully helping patients. First, nurses may assume the patient’s level of concern about their rheumatic illness is greater than it actually is. For instance, a nurse may think about the severity of a rheumatic disease such as
  • 10. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 10 rheumatoid arthritis and imagine different outcomes such as osteoporosis and assume that because of the severity, any patient would want to prevent those complications. However, one study found, “RN’s are not always aware of their patients’ perspective and preferences when it comes to participation in clinical decision-making, tending to overestimate their preferences in assuming an active role,” (Florin et al., 2006, p. 1,498). This explains that some patients may not care about their health status as much as nurses do. What nurses can do, is to first examine their patients’ attitudes and attempt empowering or promoting, as previously discussed in this paper, but from the patients’ perspectives., in order to fully address the patient’s concerns, whether these concerns being health-related or not. Another challenge nurses may face is that there aren’t as many supplemental resources available to educate patients further on the severity of their rheumatic diseases. If a patient is hospitalized for a complication or a severe reaction of their illness, then perhaps there is more time and opportunity to educate them about their disease. However, if a patient is coming in to have a prescription adjusted, obtain a new prescription, or have a physician examine an update on their condition, there may not be much time to devote an hour long education session. One program found that “The self-care promoting problem-based learning programme enabled people with rheumatic diseases to improve their empowerment compared with the control group,” after implementing an education program about rheumatic illnesses, the obstacles involved, and solutions to living comfortably (Arvidsson, S., Bergman, Arvidsson, B., Fridlund, & Tingström, 2013, p. 1,500). What researchers can do is develop more of these programs, or further modify this program to ensure more effective outcomes and possible resources available for rheumatic illness patients.
  • 11. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 11 Conclusion: Further research In conclusion, patients diagnosed with rheumatic illnesses undergo numerous, complicated changes that affect their daily living and functioning. This places different repercussions on their lives, such as hopelessness and limited social interaction. The rheumatology nurse must take on numerous roles to ensure the best outcome for their patient, such as health educator, family connector, advocate, motivator and coach. Due to the different obstacles that nurses face in delivering care to patients diagnosed with rheumatic illness, more research should be conducted to create or improve education programs. These education programs can not only provide education regarding disease pathology, treatment options, disease complications, and social implications, but they also empower individuals afflicted with these rheumatic illnesses to become proactive in their health. In addition to conducting further research into education programs for rheumatic disease patients, further research in biologic treatment must also be conducted. Research in both fields are vital and proactive steps in the future of studying rheumatic diseases, and furthermore improving the options available and outcomes for these patients afflicted with rheumatic illness.
  • 12. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 12 References Arvidsson, S., Bergman, S., Arvidsson, B., Fridlund, B., & Tingström, P. (2013). Effects of a self-care promoting problem-based learning programme in people with rheumatic diseases: a randomized controlled study. Journal of Advanced Nursing, 69(7), 1500-1514 15p. doi:10.1111/jan.12008 Arvidsson, S., Bergman, S., Arvidsson, B., Fridlund, B., & Tops, A. B. (2011). Experiences of health-promoting self-care in people living with rheumatic diseases. Journal of Advanced Nursing, 67(6), 1264-1272 9p. doi:10.1111/j.1365-2648.2010.05585.x Cedars-Sinai. (2015). Rheumatic Disease Drug Therapy [Data File]. Retrieved from: https://www.cedars-sinai.edu/Patients/Programs-and Services/Rheumatology/Treatments/Drug-Therapy/ Desjarlais-deKlerk, K., & Wallace, J. E. (2013). Instrumental and socioemotional communications in doctor-patient interactions in urban and rural clinics. BMC Health Services Research, 13(261). doi:10.1186/1472-6963-13-261 Drugs.com. (2015). Plaquenil Side Effects [Data Set]. Retrieved from: http://www.drugs.com/sfx/plaquenil-side-effects.html Florin, J., Ehrenberg, A., & Ehnfors, M. (2006). Patient participation in clinical decision-making in nursing: a comparative study of nurses' and patients' perceptions. Journal of Clinical Nursing, 15(12), 1498-1508 11p. doi:10.1111/j.1365-2702.2005.01464.x Larsson, I., Fridlund, B., Arvidsson, B., Teleman, A., & Bergman, S. (2014). Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy. Journal of Advanced Nursing, 70(1), 164-175 12p. doi:10.1111/jan.12183 Løchting, I., Fjerstad, E., & Garratt, A. M. (2013). Illness perceptions in patients receiving
  • 13. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 13 rheumatology rehabilitation: Association with health and outcomes at 12 months. BMC Musculoskeletal Disorders, 14(28). doi:10.1186/1471-2474-14-28 National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2014). Arthritis and Rheumatic Diseases [Data File]. Retrieved from:http://www.niams.nih.gov/health_info/arthritis/arthritis_rheumatic.asp Nyman, A., & Lund, M. (2007). Influences of the social environment on engagement in occupations: The experience of persons with rheumatoid arthritis. Scandinavian Journal of Occupational Therapy, 14(1), 63-72 10p. Ottenvall Hammar, I., & Håkansson, C. (2013). The importance for daily occupations of perceiving good health: Perceptions among women with rheumatic diseases. Scandinavian Journal of Occupational Therapy, 20(2), 82-92 11p. doi:10.3109/11038128.2012.699978 Palmer, D., & El Miedany, Y. (2010). Biological nurse specialist: goodwill to good practice. British Journal of Nursing, 19(8), 477-480 4p. Salvelkoul, M., DeWitte, L.P. (2004). Mutual support groups in Rheumatic Diseases: effects and participants’ perceptions. Arthritis & Rheumatism {Arthritis Care & Research}, 51(4), 605-608.
  • 14. RHEUMATIC DISEASE CARE AND NURSING USING BIOLOGICS 14 I. Introduction: Rheumatic Disease a. Background information about different types of rheumatic diseases b. List different treatments c. Thesis: The purpose of this paper is to explore the nurse’s role in rheumatic treatment, regarding patient education of the use of biologic treatments. II. Body a. Biologic Treatments i. Discuss what comprises biologics ii. Discuss what biologics do for rheumatic disease patients b. Rheumatic patients i. Discuss impact rheumatic disease has on patients ii. Mental impact/Emotional impact iii. Autonomy and occupational meaning c. Rheumatics and nursing i. Treatment deliveries ii. The nurse’s role iii. Nurse vs Doctor d. Patient Education i. Family involvement ii. Patient empowerment iii. The challenges to nurses providing care III. Conclusion: further research