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H.C. is a 66-year-old woman diagnosed with fibromyalgia syndrome [FMS] in 2007 as a secondary complication from Lyme disease. In the beginning, she was not concerned because she knew little about the condition and how painful it can be. Eventually the symptoms worsened, she described having parasthesia, painful pressure, and generalized ache. It affects mostly her neck and left shoulder, which she cannot look to her left side and has difficulty performing tasks with her left arm. H.C.’s role performance is also compromised; she is the primary caretaker for her frail husband and pets. Her pain flares up unpredictably and when she is having any stress, the pain is extremely intense. It is so disruptive that it affects her daily activities, small business, interpersonal relationships, concentration, mood, sleep, appetite, and physical mobility. Not only pain brings her down emotionally, those that doubt her “invisible” condition exists because they can’t see it. H.C. is worried that if her body develops tolerance to Lyrica (pregabalin), her pain medication for FMS, that she will have nothing to control her pain therefore disrupting her quality of life. H.C. is among an estimated 10 million individuals in the United States affected by FMS according to the MJ Consulting Group (2008). There is an significant health disparity, women are the most disproportionably affected by FMS; the female to male ratio is 7:1 (Centers for Disease Control [CDC], 2008) It is required to understand what FMS is about because the “invisible” problem mentioned earlier in H.C.’s story is the most significant barrier for health and wellness. Often affected individuals tend to look well outwardly (Cunningham & Jillings, 2006). The etiology is not known but is associated with precipitating factors such as Lyme disease and stress. FMS is the second most frequently given diagnosis in rheumatology (Nelson & Tucker, 2008). According to the National Fibromyalgia Association [NFA] (2008), FMS is described as, “A chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia clients experience a range of symptoms of varying intensities that wax and wane over time” (para. 1). FMS was once referred as fibrositis, the name was changed because it is now understood to be a chronic pain syndrome, not an inflammatory disease FMS is “invisible” because it is difficult to diagnose, and there are no current lab/imaging studies that can identify FMS. There is no cure, and the varying characterizations of FMS makes managing care of a client quite challenging. Besides relying on assessing client subjective information, the 1990 Criteria for the Classification of FMS is the only standard definition for it’s diagnosing (Wolfe et al., 1990). Now it is the year 2008, after 18 years of encouraging research, the classification needs revision. Because of that many health care professionals either know little about FMS or don’t know how to manage it. “The gaps and barriers identified among healthcare providers include a substantial lack of awareness about the disorder and a lack of confidence in the ability of the physicians ability to diagnosis it. As a result, misdiagnosis, fragmentation of patient care, and an increased cost of care are plaguing the management of fibromyalgia syndrome . . . Each of these barriers contributes to poor patient care and outcomes” On December 2007, a breakthrough occurred when a partnership made up of The Johns Hopkins University Schools of Medicine and Nursing and the NFA created “The Fibromyalgia Circle of Care Initiative” [FCCI] to address the ongoing challenges faced by healthcare providers in the diagnosis and management of FMS patients (Motarjeme, 2007). Recently on October 25th, 2008, the partnership officially launched FCCI (MJ Consulting Group, 2008). The outcomes- based educational initiatives will educate providers about the disease state and the latest therapeutic options; thus, driving accurate and early diagnosis of fibromyalgia for the ten million U.S. citizens impacted by this disorder (MJ Consulting Group, 2008). After lacking clarity regarding FMS diagnosis/management, other barriers of health and wellness include fragmentation of care, financial constraints, unpredictability and variability of symptoms, reduced physical mobility, detrimental side effects of medications, and client’s lack of knowledge (Cunningham & Jillings, 2006). In addition, inadequate support from family, friends, employers, and health care professionals questioning the existence of FMS poses a significant barrier to health and wellness (Cunningham & Jillings, 2006). Because of the debilitating nature and barriers FMS presents, it has a serious impact on clients, families, friends, and employers, as well as society at large. Hoffman and Dukes (2008) reported that people with FMS had a health status burden that was greater in magnitude compared to those with health conditions that are widely accepted as impairing (p. 6). In addition, the average women responding to a survey had less functional ability related to activities of daily living and independent activities of living than the average community dwelling woman in her 80’s (Jones et. al, 2008). FMS clients might have difficulties in interpersonal relationships, which can aggravate symptoms and lead to maladaptive illness behaviors such as ending pleasurable activities and reductions in activity and exercise (Dadabhoy & Clauw, 2006). In the worse cases, clients become involved in the disability and compensation systems, a decision that almost ensures their condition will not improve (Hadler, 1996). Cunningham and Jillings (2006) concluded, “The complexity of symptoms and their interrelated effects greatly affected patient physical, emotional, and psychological well-being; affected relationships with family and friends; undermined economic status; and terminated careers” (p. Better-known organizations specializing in health promotion such as Healthy People 2010 and the Centers for Disease Control [CDC] recognized the impact of FMS as a major health promotion issue. Both programs place fibromyalgia in the same category with arthritis. Even if it is known that FMS is not an inflammatory disease, it may often co-occur (up to 25-65%) with other rheumatic conditions (CDC, 2008). FMS affects health and well being in three indicators provided by Healthy People 2010 such as physical activity, mental health, and barriers to access (Healthy People 2010, n.d.). Physical activity involves activities of daily living, work, leisure activities, appetite, and mobility. Mental health is also a big concern; inadequate coping can lead to depression, anxiety, ineffective role performance, affected interpersonal relationships, and changes in patience, mood, and deprived sleep. After a diagnosis has been confirmed, most recent studies recommend a multidisciplinary approach is needed for a treatment program. Treatment programs vary in length, some brief in 1- ½ days or longer as in weeks or month in duration (Luedtke et al., 2005). Since FMS is incurable, and therapeutic management could alleviate symptoms, this leaves the bulk of responsibility to the scope of nursing practice. Health promotion becomes the main priority for the medical-surgical nurse to carry out when caring for FMS clients. Olshanky (2007) states, “We must work individually to promote health within the boundaries of an individual’s capacity. For example, a person with limited mobility due to a chronic disorder will have different goals and will define health within the limits of this mobility, but this person can be encouraged to achieve an appropriate and attainable level of health” (p. 2). Unfortunately there are no clear-cut “textbook” evidence-based medical-surgical nursing practice guidelines for FMS. This is because of the lack of clarity regarding FMS diagnosis/management discussed earlier. However, there are evidence-based results on the fundamental role that nurses perform when caring for Being a client advocate is the most important medical-surgical nursing role concerning FMS. Dell (2007) states, “Patients with fibromyalgia not only need to understand their illness, but they also need to know that you understand it” (p. 64). It is mandatory for the nurse to recognize the most reliable indicator of pain is what the patient says it is. A quote from Naomi Wolf perfectly reflect what a FMS client often deal with when suffering chronic pain, “Pain is real when you get other people to believe in it. If no one believes in it but you, your pain is madness or hysteria” (Wolf, 2008). It is essential for a client advocate to have strong therapeutic communication skills and allowing time for the patient to be heard. A leading nursing researcher for FMS clients, shared, “For our brief program (1.5 days), we have found the nurses to play a pivotal role in building a trusting relationship with the patients. Many people have reported that they have felt mis-understood or demeaned by health care providers. So we have built in “extra” time in the nurse’s interview so the patients will be allowed to tell their story . . . The telling of their personal story is one of the first steps of treatment for many of these folks. They need to share their experience before moving on. So key responses from the nurses can help build therapeutic rapport” (C. Luedtke, personal communication October 27, 2008). During the therapeutic communication, the medical-surgical nurse becomes a caregiver and coordinator of care. Both roles go hand in hand using the nursing process. The responsibilities include assessment, diagnosis, collaboration, planning outcomes, implementation, and evaluation. When assessing an FMS client, it centers on medical history, current symptoms, past/current medications, and the impact of symptoms on physical/emotional functioning (Leudtke et. al, 2005). Collaboration involves the clients, nurses, physicians, physical/occupational therapists, psychologists, and pharmacists (C. Luedtke, personal The nurse as an educator is critical to facilitate health promotion for individual clients. The teaching plan would include what FMS is about, correcting any misconceptions, symptoms, how it is diagnosed, current research on possible causes/treatment, and various pharmacological/nonpharmacological therapies. The nurse also teaches the client how to perform self-management of their symptoms. It is important for the nurse to include family members because it provides additional support and improving interpersonal relationships. The nursing role as an educator also involves being a change agent. The change agent duties include teaching clients on lifestyle modification such as dietary and sleep habits, and helping the family to adjust to new role changes. A lot of the treatment programs have cognitive behavior therapy to help clients develop coping strategies and learn how to avoid behavior/environmental factors that would cause a flaring up of symptoms. Usually educating clients and cognitive behavior therapy would take place in a health and wellness/rehabilitation clinic. Finally a continuing care planner determines if a client needs a long-term treatment program, evaluation on effectiveness regarding treatment, and discharge planning with realistic To consider an outcome most applicable to all FMS clients, one needs to understand how the health promotion issue falls on the health-illness continuum (Figure 1). The continuum is a general concept how health ranges from optimal wellness at one end to illness resulting in death the other end. Dadabhoy and Clauw (2006) states, “At one end of the continuum, there is the individual with fibromyalgia that responds to a single medication, or a graded, low-impact exercise program. At the other end of the continuum is the tertiary-care patient with high levels of distress, who has no sense of control over their illness, little social support, and has looked to the disability and compensation systems to solve their problem. For this individual, and many others in between the two poles, multimodal programs that integrate nonpharmacologic and pharmacologic therapies are required” (p. 370). Note. From “Ignatavicius, D.D. & Workman, M.L. (2006). Medical-Surgical Nursing: Critical Thinking for Collaborative Care (5th ed., Vol. 1) Philadelphia, PA: Elsevier Inc. Chapter 1, p.3” The key is to look at H.C.’s story and the earlier discussion about the overall impact that FMS have on clients. The client’s quality of life would be the most affected. Refer to Table 1 for the utilization of the Gordon’s Health Pattern, NOC levels, and the nursing care indicators. Table 1 is tailored to guide the medical-surgical nurse to assess where the client initially fits in the health-illness continuum and to evaluate if the outcomes are met. The nursing care indicators in Table 1 are the most applicable concerning quality of life and represent the impacts/barriers Care Recipient:____________________.
Gordon’s Health Pattern: Health Perception-Health Management Pattern- (p.738)
Level 1 Domain-Perceived Health (V): (p.138) Outcome that describe impressions of an individual’s
health and health care.
Level 2 Class-Health & Life Quality (U): (p.138) Outcome that describe an individual’s perceived health
status and related life circumstances.
Level 3 Outcome: Quality of Life-2000: (p.578) Extent of positive perception of current life
circumstances.
OUTCOME TARGET RATING: Maintain at:______ Increase to: ______.
Initial rating:______.
Evaluation rating:______.
Did Evaluation Rating meet or exceed the outcome target rating? Yes:______ or No:______
Quality of Life Overall Rating Scale(s)-Not at all satisfied to Completely satisfied (s): Not at all satisfied(1) Somewhat satisfied(2) Moderately satisfied(3) Very satisfied(4) Completely satisfied(5) INDICATORS: (p.578) 200016 Independence in activities of daily living Note. From “Moorhead, S., Johnson, M., et al (2008) Nursing Outcomes Classification (NOC) (4th ed.) St. Louis, Missouri: Mosby, Inc. of Elsevier Inc.” When the initial assessment takes place, questions should be constructed on each of the nursing care indicators to measure the client’s quality of life. Each indicator would be rated on the quality of life overall rating scale in Table 1 and added up to make the initial rating. The nurse will be able to determine where the client falls on the health-illness continuum to make a realistic goal to either maintain or increase the rating score. Next, the nurse will collaborate and develop an individualized care plan with members of the health care team. Then the client will enter a treatment program of varying length depending on how severely the quality of life is affected. Finally, the nurse will be able to make an evaluation rating to measure if the client has maintained or improved towards optimal wellness in the health-illness continuum using the same indicators in Table 1. If the evaluation rating did not meet to maintain or improve, the nurse will have to develop new goals and plan of care with the members of the health care team. In conclusion, as Cunningham and Jillings (2006) point out, “Many horizons remain to be explored as we strive to make sense of this illness and structure and test interventions that will effectively address the needs of clients. By applying research findings to nursing practice, we can develop new approaches to client-centered interventions that are sensitive and collaborative in nature” (p.270). The recent release of Lyrica, and new drugs under research along with new programs such as the Fibromyalgia Circle of Care Initiative signals that FMS is gaining needed attention. It is a sign pointing in the right direction giving H.C. and many other FMS clients hope that their quality of life will improve. In the meantime, the nurse will continue to serve a frontline role to assist FMS clients to achieve optimal wellness. Centers for Disease Control. [CDC] (2008). Arthritis-types overview. Retrieved October 20, 2008, from the CDC website: http://www.cdc.gov/arthritis/arthritis/fibromyalgia.htm Cunningham, M.M., & Jillings, C. (2006). Individuals’ descriptions of living with fibromyalgia. Clinical Nursing Research, 15(4), 258-273. Dadabhoy, D., & Clauw, D.J. (2006). Therapy insight: fibromyalgia---different type of pain needing a different type of treatment. Nature Clinical Practice Rheumatology, 2(7), 364- Dell, D.D. (2007). Getting to the point about fibromyalgia. Nursing, 37(2), 61-64. Hadler, N.M. (1996). If you have to prove you are ill, you can’t get well: the object lesson of fibromyalgia. Spine, 21(20), 2397-2400. Healthy People 2010 (n.d.). Leading Health Indicators. Retrieved October, 27, 2008 from the http://www.healthypeople.gov/Document/html/uih/uih_bw/uih_4.htm#physactiv Hoffman, D.L., & Dukes, E.M. (2008). The health status burden of people with fibromyalgia: a review of studies that assessed health status with the SF-36 or the SF-12. International Journal of Clinical Practice, 62(1), 115-126. Ignatavicius, D.D. & Workman, M.L. (2006). Medical-Surgical Nursing: Critical Thinking for Collaborative Care (5th ed., Vol. 1) Philadelphia, PA: Elsevier Inc. Chapter 24, p.418- Jones. J, Rutledge, D.N., Jones, K.D., Matallana, L., & Rooks, D.S. (2008). Self-assessed physical function levels of women with fibromyalgia. Women’s Health Issues, 18, 406- Longley, K. (2006). Fibromyalgia: aetiology, diagnosis, symptoms and management. British Journal of Nursing, 15(13), 729-733. Luedtke, C.A., Thompson, J.M., Postier, J.A., Neubauer, B.L., Drach, S., & Newell, L. (2005). A Description of a brief multidisciplinary treatment program for fibromyalgia. Pain MJ Consulting Group. (2008). Retrieved October 27, 2008, from the MarketWatch website: http://www.marketwatch.com/news/story/johns-hopkins-national-fibromyalgia- association/story.aspx?guid=%7B6C437F77-A224-45BD-9DB9- Morehead, S., Johnson, M., et al (2008). Nursing Outcomes Classification (NOC)(4th ed.) St. Louis, Missouri: Mosby, Inc. of Elsevier Inc. Motarjeme, R. (2007). “Circle of care” collaborative aims to reduce barriers to recognition and treatment of fibromyalgia. MJ Consulting Group Retrieved October 27, 2008, from: http://www.mjconsultinggroup.com/News/PR_12-5-07.pdf National Fibromyalgia Association. (2008). What is fibromyalgia? Retrieved October 22, 2008, from the National Fibromyalgia Association website: http://www.fmaware.org/site/PageServer?pagename=fibromyalgia Nelson, P.J., & Tucker, S. (2006). Developing an intervention to alter catastrophizing in persons with fibromyalgia. Orthopaedic Nursing, 25(3), 205-214. Olshanky, E. (2007). Nurses and health promotion. Journal of Professional Nursing, 23(1), 1-2. Russell, J. (2007). New council to target barriers in care for patients with fibromyalgia. Retrieved from the National Fibromyalgia Association website: http://www.fmaware.org/site/News2?page=NewsArticle&id=6795 Wolf, N. (n.d.). Brainy Quote. Retrieved October 29, 2008, from Brainy Quote Web Site: http://www.brainyquote.com/quotes/quotes/n/naomiwolf166263.html Wolfe, F., Smythe H.A., Yunus, M.B., Bennett, R.M., Bombardier, C., Goldenberg, D.L., et al. (1990). The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the multicenter criteria committee. 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