Primary care and specialist management options

Primary care and specialist management options

BaillieÁre's Clinical Rheumatology Vol. 13, No. 3, pp. 469±477, 1999 11 Primary care and specialist management options Lionel Schachna MBBS, FRACP ...

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BaillieÁre's Clinical Rheumatology Vol. 13, No. 3, pp. 469±477, 1999

11 Primary care and specialist management options Lionel Schachna

MBBS, FRACP

Rheumatology Registrar

Geo€rey Littlejohn*

MBBS (Hons), MD, MPH, FRACP, FRCP (Edin)

Director, Rheumatology/Associate Professor of Medicine Rheumatology Department/Monash University Centre for In¯ammatory Disease, Department of Medicine, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria, Australia

Fibromyalgia syndrome varies from being a mild intermittent disorder to one that is severe and protracted. Much of the management of the more common milder type is best done at the primary care level with the expectancy of improvement in key symptoms and a generally good prognosis. Careful appraisal of the dimensions of ®bromyalgia is needed with an individualized management strategy. Critical to good outcome is the need for an understandable explanation of the mechanism of ®bromyalgia and introduction to self-management skills that include exercise and techniques that minimize aberrant responses to psychosocial stressors. The primary care practitioner is well placed to identify risk factors that associate with ®bromyalgia in order to minimize emotional distress accompanying illness or psychosocial predicaments. Little formal research has been done on these important areas. In contrast, there is much information on management of ®bromyalgia when it presents to specialist practice. More complex and expensive approaches result in variable changes in the outcome of ®bromyalgia. Key words: ®bromyalgia; management; primary care; psychosocial; emotional distress; interdisciplinary.

Fibromyalgia syndrome is a heterogeneous disorder that requires an individualized approach to its management. Various clinical endpoints, such as reduced pain and improvements in functional capacity and psychological status, are all valid in di€erent patients.1 The complex algorithm between clinical presentations, therapies and outcomes2 in ®bromyalgia may explain why there is little evidence for standard approaches to alter long-term outcome measures3 and why most patients seek out unproven therapies.4 Despite this apparent negative situation we believe that, with appropriate management, ®bromyalgia should be viewed as a potentially reversible disorder.5 This is particularly so if antecedents of ®bromyalgia are recognized and treated.

* To whom correspondence should be addressed. 1521±6942/99/030469+09 $12.00/00

c 1999 Harcourt Publishers Ltd. *

470 L. Schachna and G. Littlejohn Table 1. Risk factors (`yellow ¯ags') for ®bromyalgia. . . . . . . . . . . .

Family history Previous pain syndrome Medical condition causing prognostic concern, for example, SLE or RA Current community epidemic with perceived environmental attribution Pain-related work predicament Spinal injury Poor coping skills/dicult life predicament Past depression/anxiety Persisting post-`viral' symptoms Sleep disturbance Signi®cant emotional distress

ANTECEDENTS TO FIBROMYALGIA IN THE PRIMARY CARE SETTING Very few studies have addressed ®bromyalgia in the primary care setting. However, it is in general practice where most patients ®rst present and where a medical label is usually attached. There are a number of apparent risk factors for the development of ®bromyalgia, which represent `yellow ¯ags' alerting the primary care practitioner to consider ®bromyalgia when individuals present with suggestive symptoms (Table 1). Practice point Prevention of or early intervention in ®bromyalgia is possible if clinicians are aware of the factors preceding or accompanying the condition. In population-based studies, a positive family history is associated with an increased incidence of ®bromyalgia, with daughters of mothers with ®bromyalgia, in particular, identi®ed as an at-risk group.6 Episodes of persistent pain, such as headache or pelvic pain due to endometriosis7, may precede ®bromyalgia. Symptoms of ®bromyalgia should be anticipated in those rheumatic conditions that typically evoke anxiety concerning prognosis, such as rheumatoid arthritis8 and systemic lupus erythematosus9, and may potentially lead to inappropriate therapy. Where `epidemics' of ®bromyalgia or regional pain syndromes occur, the primary care practitioner should be aware of the increased propensity for others in the community to develop similar problems.10 This appears to re¯ect community beliefs and attributions concerning causal relationships between environmental factors and ®bromyalgia symptoms. While occupational hazards dominate recorded epidemics, other recent examples include infectious diseases11 and breast implants.12 When this perception of causation interacts with complex social safety-net provisions, the seeking of validation and compensation may further reinforce the problem. The approach of the primary care health provider may be critical to outcome in this highly charged and emotional situation. Even endemic work-injury, through a number of mechanisms, including fear of loss of work-ability, is a potent risk factor for development of ®bromyalgia. Major depression or anxiety disorders occur in 30% of patients with ®bromyalgia13 and are independently associated with increased pain severity in ®bromyalgia.14

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Practice point The role of stress in ®bromyalgia may not be obvious to the patient. Although both have been thought to be reactive responses to chronic pain, it is now recognized that they often need to be managed in their own right. Emotional distress needs to be recognized by the primary care practitioner, who is often in the best position to assess more subtle and pervasive emotional stressors. Fibromyalgia has been described as a neurophysiological disorder on a continuum between psychological distress and a somatization disorder.15 Physical trauma, particularly neck injury16, has been identi®ed as a triggering event prior to the onset of ®bromyalgia. Those with a traumatic onset ®bromyalgia report greater severity of pain, a€ective symptoms and disability and are more likely to use physical therapy, nerve blocks and opioids.17 Persistence of ¯u-like symptoms beyond that expected should alert one to the possibility of ®bromyalgia. DIAGNOSIS IN PRIMARY CARE The criteria used for classi®cation of ®bromyalgia for research purposes18 are not always appropriate at the primary care level. It has been recognized that patients with incomplete forms of ®bromyalgia (i.e. those without American College of Rheumatology (ACR) criteria) should be managed similarly.19 The occurrence of widespread pain and mechanical allodynia is, however, essential for diagnosis. Ancillary clinical features occur variably in individual patients. Recently, the severity of fatigue that is present in more than 90% of patients has been highlighted.20 In addition, the signi®cance of any marginally abnormal investigations, such as antinuclear antibody results, needs to be carefully interpreted.21 The decision to apply the label `®bromyalgia' to an individual is of importance. For medical illnesses in general, a diagnostic label is an appropriate entry point into a therapeutic paradigm. In some ®bromyalgia patients the label acts to create a `disease' in the patient's mind which might then be linked, often through invalid information, to persistence of symptoms and disability. In fact, the nature and causality of disability in ®bromyalgia patients, and particularly their entitlement to disability support pensions, worker's compensation or other safety net provisions, is a topic of ongoing debate.22,23 In the primary care setting, patients with symptoms of ®bromyalgia do not necessarily need to be given a speci®c label by their health care professional in order to be given appropriate counselling and strategies which focus on lifestyle factors such as ®tness and stress management skills. Similar simple approaches, particularly where `yellow' ¯ags have been identi®ed, allow for an excellent outcome in a large percentage. However, when symptoms are persistent, patient education encompassing a pathophysiological model of ®bromyalgia gives the patient an appreciation of the rationale of the multiple dimensions of management. MANAGEMENT Many with ®bromyalgia opt for self-management strategies and nominally elect to be `non-patients'. Although the clinical characteristics of ®bromyalgia `non-patients' are

472 L. Schachna and G. Littlejohn

Practice point Fibromyalgia is ideally managed predominantly at the primary care level. similar to those who present to the health care profession, they report lower levels of anxiety, depression and fatigue24 and a lower number of previous emotionallytraumatic life events.25 Additionally, they are more likely to have resolution of symptoms within 2 years.26 Their coping and other self-management strategies would appear to be more robust. Others with ®bromyalgia require validation of their diagnosis in order to initiate an e€ective management plan. It is useful to consider di€erent levels of management roughly re¯ecting severity of presentation including disability (Table 2). As the management level increases, the primary care practitioner will interact with an increasing number of specialists, including rheumatologists. Practice point Explanation of the nature of ®bromyalgia to the patient is critical to optimal management.

Table 2. Management levels for ®bromyalgia. Level 1 . Validate diagnosis . Evaluate severity and dimensions of ®bromyalgia . Educate as to pathophysiology . Emphasize process of sensitization . Emphasize usual good outcome . Provide counselling, advice on life-style, exercise, stretching, sleep, simple relaxation skills Level 2 . All of above . Simple time-contingent non-narcotic analgesia . Low-dose nocturnal tricyclic antidepressant . Low-dose morning SSRI medication (routine dose if depressed) . Physical therapy . Muscle, spine, acupuncture, global . Low-level pain management programme . Psychologist, others . Consider advice from psychiatrist if major depression/anxiety . Other approaches . Hypnotherapy, biofeedback, cognitive-behavioural therapy Level 3 . All of above . Formalized interdisciplinary programme . Education, cognitive-behavioural therapy, exercise, medication, occupation

Level 1 management The intensity and complexity of management strategies depend on the individual's presentation and the level of functional impairment.27 Psychosocial factors, in

Primary care and specialist management options 473

particular responses to stressors, should be identi®ed and the impact of the condition on the individual's home, recreation and work activities requires careful assessment.28 Discussing a relevant model of ®bromyalgia for the patient may be of critical importance and may be all that is required for the patient to develop a selfmanagement strategy leading to improvement in symptoms and functional ability.29 The explanation must be delivered at an appropriate educational level with concordant sources of information from the primary care physician, physical therapists and selfhelp groups such as the Arthritis Foundation. Early in the therapeutic paradigm, addressing the process of sensitization reassures the patient that there is an underlying and treatable cause for ongoing symptoms. It then allows for issues such as emotional distress and sleep disturbance to be discussed without the perception by the patient that the problem is being dismissed as a psychological or `imaginary' process. The patient is thereby able to separate triggering factors such as illness or injury from the resultant process in which symptoms develop. At this level of management, the introduction of a regular aerobic exercise programme can have signi®cant impact on symptoms.30 Approximately 80% of patients with ®bromyalgia fall below the average level of ®tness established by the American Heart Association.31 Although the results of exercise programmes have not all been uniformly positive for all outcome measures, a cardiovascular ®tness programme appears to be superior to general ¯exibility or relaxation therapy.32 The primary care practitioner is well positioned to provide simple advice on stress management and can counsel patients on dealing with the symptoms of ®bromyalgia and with any antecedents to the problem. This approach may also be successful in specialty practice even if ®bromyalgia has been long-standing.33 Practice point All patients should be told that ®bromyalgia is a potentially reversible condition. Level 2 management Depending on the response to the above regimen and the impact of the problem on the patient's lifestyle, a more structured treatment programme may be necessary. Prominent sleep disturbances34,35 might require a regular sleep/wake schedule, regular exercise, avoiding stimulants and heavy meals prior to sleep and elimination of environmental impediments to sleep. Where there is sleep apnoea36 referral to a sleep centre may be considered, or if there are periodic leg movements disturbing sleep then nocturnal benzodiazepine may be prescribed.37 Practice point Medications and physical therapy are adjuncts to a management programme that focuses on exercise, relaxation and lifestyle. Despite the widespread use of pharmacotherapy in ®bromyalgia38, the positive e€ects lessen over time. Non-steroidal anti-in¯ammatory drugs have a limited role, and

474 L. Schachna and G. Littlejohn

opioids should be avoided. Low-dose tricyclic antidepressant drugs, as well as the combination of amitriptyline and ¯uoxetine, have been shown in randomized, controlled trials to improve pain, fatigue and quality of sleep.39 Tricyclic antidepressants (TCAs) are non-addicting, should be taken 2±3 hours before sleep, have a 1±3 week delay until a therapeutic e€ect and, at best, are valuable in only 50% of patients.40 The mechanism of action is unclear, although it is likely to be due to e€ects on descending noradrenergic and dopaminergic pathways that modulate signalling of pain in the spinal cord.41 For those patients who are intolerant of TCAs, data are emerging of the value of using serotonin-selective re-uptake inhibitors (SSRIs).42 It has recently been proposed that alternating compounds or combination therapies analogous to treatment of rheumatoid arthritis may lead to a more durable response.43 Based on the recent demonstration of variable responses of ®bromyalgia patients to diverse pharmacological agents, there may be disparate pain-processing mechanisms operating in di€erent patients.44 A fuller review of the scienti®c basis of pharmacotherapy in ®bromyalgia is contained in Chapter 12 (Buskila). Non-pharmacological therapies of modest e€ectiveness, observed in controlled studies, include EMG biofeedback45, hypnotherapy46 and cognitive behavioural therapy47,48, but these would usually be beyond the expertise of the primary care practitioner. If muscle factors dominate, then massage, more formal exercise and trigger-point therapy with injection of local anaesthetic and/or stretching all need consideration. If spinal factors dominate, then short-term physical therapy of di€erent types may help. There is little evidence as to indications for and response rates to these approaches in ®bromyalgia patients, and they certainly should not occur without the basic level 1 programme. Referral to a psychologist who understands the ®bromyalgia construct may aid management of emotional distress. Depression may require advice from a psychiatrist. Global health-enhancing measures through yoga, Tai-chi, Feldenkrais technique and others all appear useful in some, but little evidence for overall ecacy exists. Although this stage of management continues at the primary care level, it is often in conjunction with other healthcare professionals. A team approach is thus established through networking and appears cost-e€ective over the short term. Practice point The multidimensional nature of ®bromyalgia necessitates the implementation of management programmes that simultaneously address a number of issues associated with the condition.

Level 3 management A smaller number of ®bromyalgia patients will continue to have ongoing pain and functional impairment despite the above approaches. At this level, realistic goals need to be set, because major improvement in all features of ®bromyalgia is unlikely to occur with current therapies available. Management at the third level comprises an interdisciplinary multidimensional programme49 including formal group sessions.50 The structure of this type of programme depends on community resources and individual

Primary care and specialist management options 475

Practice point Simple ®bromyalgia has a good outlook but complex ®bromyalgia where disability predominates, requires more intensive management strategies. skills. It may involve many persons, be expensive and institution-based, or it may involve fewer personnel, be cheaper and be located in the community through networking. More data are required on the clinical bene®t and cost of these approaches. Although the major aim of treatment is restoration of function, di€erent outcomes need to be chosen for individual situations. For instance, return to work might be a valid outcome for ®bromyalgia associated with work injury, whereas relief of pain, improvement of sleep or improved household function may be alternative outcomes. Fibromyalgia is ideally diagnosed and managed at the primary care level. However, uncertainty about the diagnosis or about speci®c management issues may lead to referral to a rheumatologist or other specialist. The majority of patients, after appropriate diagnosis and institution of a management plan, should be referred back to the primary care health practitioner for ongoing care. The patient with ®bromyalgia must be encouraged to take control of their therapy and not become dependent on healthcare providers. Positive changes from an attitude of hopelessness and passivity are associated with improvements in clinical outcomes.51 Research agenda . there is little research regarding management of ®bromyalgia in primary care practice . does data on ®bromyalgia management in specialist practice translate into primary care practice? . no valid measures of the severity of ®bromyalgia exist, and yet severity may be the crucial predictor of outcome at the primary care consultation . what outcome variables are important, valid and reliable in ®bromyalgia?

Practice points . prevention of or early intervention in ®bromyalgia is possible if clinicians are aware of the factors preceding or accompanying the condition . the role of stress in ®bromyalgia may not be obvious to the patient . ®bromyalgia is ideally managed predominantly at the primary care level . explanation of the nature of ®bromyalgia to the patient is critical to optimal management . all patients should be told that ®bromyalgia is potentially a reversible condition . medications and physical therapy are adjuncts to a management programme that focuses on exercise, relaxation and lifestyle . the multidimensional nature of ®bromyalgia necessitates the implementation of management programmes that simultaneously address a number of issues associated with the condition . simple ®bromyalgia has a good outlook, but complex ®bromyalgia, where disability predominates, requires more intensive management strategies

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Fibromyalgia is easily `medicalized'. The specialist may have the advantage of many years of experience in managing patients with ®bromyalgia and may be intuitively more aware of the prognosis in di€erent presentations. A danger, however, exists for the patient who heads higher up the specialist ladder, and patients managed in tertiary care institutions have a poorer outlook than those managed in the community. Unfortunately, much of our knowledge of outcomes in ®bromyalgia is derived from cohorts of tertiary care patients. There is therefore a critical need to evaluate management strategies at the community care level, where we would expect the impact on selected outcome measures to be better than in the tertiary care setting. REFERENCES * 1. Littlejohn GO. A database for ®bromyalgia. Rheumatic Disease Clinics of North America 1995; 21: 527±557. 2. Hewett JE, Buckelew SP, Johnson JC et al. Selection of measures suitable for evaluating change in ®bromyalgia clinical trials. Journal of Rheumatology 1995; 22: 2307±2312. * 3. Alarcon GS & Bradley LA. Advances in the treatment of ®bromyalgia: current status and future directions. American Journal of Medical Sciences 1998; 315: 397±414. 4. Nicassio PM, Schuman C, Kim J et al. Psychosocial factors associated with complementary treatment use in ®bromyalgia. Journal of Rheumatology 1997; 24: 2008±2013. 5. Kennedy M & Felson DT. A prospective long-term study of ®bromyalgia syndrome. Arthritis and Rheumatism 1996; 39: 682±685. 6. Buskila D, Neumann L, Hazanov I & Carmi R. Familial aggregation in the FM syndrome. Seminars in Arthritis and Rheumatism 1996; 26: 605±611. 7. Alagiri M, Chottiner S, Ratner V et al. Interstitial cystitis: unexplained associations with other chronic disease and pain syndromes. Urology 1997; 49: 52±57. 8. Robbins JM, Kirmayer LJ & Kapusta MA. Illness worry and disability in ®bromyalgia syndrome. International Journal of Psychiatry in Medicine 1990; 20: 49±63. 9. Gladman DD, Urowitz MB, Gough J & MacKinnon A. Fibromyalgia is a major contributor to quality of life in lupus. Journal of Rheumatology 1997; 24: 2145±2148. 10. Littlejohn GO. Fibrositis/®bromyalgia syndrome in the workplace. Rheumatic Disease Clinics of North America 1989; 15: 45±60. 11. Hsu VM, Patella SJ & Sigal LH. `Chronic Lyme disease' as the incorrect diagnosis in patients with ®bromyalgia. Arthritis and Rheumatism 1993; 36: 1493±1500. 12. Wallace AM, Lee J & Dobke MK. Pain after breast surgery: a survey of 282 women. Pain 1996; 66: 195±205. 13. Hudson JI, Goldenberg DL, Pope HG Jr et al. Comorbidity of ®bromyalgia with medical and psychiatric disorders. American Journal of Medicine 1992; 92: 362±367. 14. Kurtze N, Gundersen KT & Svebak S. The role of anxiety and depression in fatigue and patterns of pain among subgroups of ®bromyalgia patients. British Journal of Medical Psychology 1998; 71: 185±194. 15. Win®eld JB. Fibromyalgia: what's next? Arthritis Care and Research 1997; 10: 219±221. *16. Buskila D, Neumann L, Vaisberg G et al. Increased rates of FM following cervical spine injury: a controlled study of 161 cases of traumatic injury. Arthritis and Rheumatism 1997; 40: 446±452. *17. Turk DC, Okifuji A, Starz TW & Freeman TR. E€ects of type of type of symptom onset on psychological distress and disability in FM patients. Pain 1996; 68: 423±430. 18. Wolfe F, Smythe HA, Yunus MB et al. The American College of Rheumatology 1990 criteria for the classi®cation of ®bromyalgia. Arthritis and Rheumatism 1990; 33: 160±172. 19. Yunus MB, Inanici F & Aldag JC. Incomplete ®bromyalgia syndrome: a clinical and psychological comparison with ®bromyalgia. Arthritis and Rheumatism 1998; 41: S258. 20. Sigal LH, Chang DJ & Sloan V. 18 tender points and the `18-wheeler' sign: clues to the diagnosis of ®bromyalgia. Journal of the American Medical Association 1998; 279: 434. 21. Tan EM, Feltkamp TE, Smolen JS et al. Range of antinuclear antibodies in `healthy' individuals. Arthritis and Rheumatism 1997; 40: 1601±1611. 22. Wolfe E. The ®bromyalgia problem [editorial]. Journal of Rheumatology 1997; 24: 1247±1249. 23. Hadler NM. Fibromyalgia: La maladie est Morte. Vive le malade! Journal of Rheumatology 1997; 24: 1250±1251. *24. Aaron LA, Bradley LA, Alarcon GA et al. Psychiatric diagnoses in patients with ®bromyalgia are related to health care-seeking behaviour rather than to illness. Arthritis and Rheumatism 1996; 39: 436±445.

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