CLINICAL FOCUS

Medically unexplained symptoms: the need for effective communication and an integrated care strategy Kevin J Gormley

M

edically unexplained symptoms (MUS) is an accepted term that is used across health-care disciplines to describe individuals that present with either singular or multiple physical symptoms for which there is no apparent physical cause. It is relatively common for most people to experience many unexplained physical symptoms that generally pass without causing either worry or a need to use health services. For people with MUS, symptoms are enduring, painful, debilitating and require the expertise of health-care professionals.

Background and literature The incidence of MUS is particularly evident among patients complaining of gastrointestinal upset, irritable bowel or enduring neuralgic pain (Taillefer et al, 2003;

ABSTRACT

Much is already known about medically unexplained symptoms (MUS) in terms of incidence, presentation and current treatment. What needs to be urgently addressed is a strategy for dealing with patients and their conditions, particularly when they do not fall neatly into medical frameworks or pathologies where the syndrome can be easily explained. This article will consider the provision of health and social care support for patients with MUS within an interprofessional education context. The author will contend that a sensitive and valued service for this large client group is dependent upon services without professional boundaries and practitioners with a clinical interest that can work together and agree an appropriate way forward in terms of care, support and strategic service provision. The article will support the idea that clear guidelines through the National Institute for Health and Care Excellence can offer clear clinical direction for practitioners working in primary and secondary care settings to work together interprofessionally to ensure a seamless and sensitive service for people with this condition.

KEY WORDS

w Medically unexplained symptoms w Integrated care w Communication w Interprofessional care

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Page and Wessley, 2003;Van Damme et al, 2004; Gerson and Gerson, 2005; Lackner and Quigley, 2005). According to the Department of Health (DH) (2009; 2011a; 2011b) patients with MUS tend to access primary care services more frequently, and are subjected to excessive and unnecessary diagnostic investigations alongside numerous medical consultant referrals. DH (2011a) estimate that setting aside the duration or severity of the condition, the annual cost of supporting patients with MUS is around 11% of all adult health-care costs. This report highlights concern about the limited range of care options for patients with MUS and, more importantly, an absence of joined-up responses for both patients and their families. These studies contend that patients with MUS need to feel that health-care professionals can accept the presence of their symptoms despite an absence of any causative evidence and that this should warrant their attention. McFarlane et al (2008) argue that patients are concerned that their symptoms are often not taken seriously, which generates further discomfort and anxiety among patients (Henningson et al, 2007; Lackner and Quigley, 2005; Leiknes et al, 2007). Clearly MUS is a matter of concern, and from this premise the purpose of this article is to identify some emerging themes related to patients with MUS and consider the need for supportive services. Swanson et al (2010) contended that the signs and symptoms associated with MUS significantly affected the daily functioning of patients and that the resultant distress accounted for around 5% of patients attending primary care clinics. Bermingham et al (2010) agreed with this view and other studies (Reid et al, 2002; Page and Wessley, 2003; Ring et al, 2004; 2005; Verhaak et al, 2006; Smith et al, 2009). They concluded that around 20% of initial appointments with primary care services concern patients with symptoms that are medically unexplainable. Other studies contend that, aside from symptom reduction, many patients with MUS are seeking a level of professional legitimacy for their condition (Brown, 2004; Smith et al, 2009).

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Kevin J Gormley is Senior Lecturer, School of Nursing and Midwifery, Queen’s University Belfast   Email: [email protected]

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CLINICAL FOCUS

Legitimising MUS

The patient perspective Rhodes et al (1999) found that where patients were able to secure an identifiable organic basis for their pain, they were able to feel a level of relief and vindication. In contrast, where patients were unable to ascertain any such conclusive evidence they experienced a profound sense of ‘de-legitimisation’. Patients in this category expressed feelings of shame and guilt associated with their pain which, in turn, affected their sense of self and social identity. The motivation for finding a diagnosis may therefore be both practical and health-promoting. Glenton’s (2003) study of patients with chronic back pain concluded that, ironically, dependence on medicine is prolonged precisely because patients are not provided with a clear diagnostic explanation or treatment programme. To arrive at a point where the presence of MUS is deemed likely, patients tend to undergo many consultations and clinical investigations, each contributing to a process of elimination that will eventually determine the absence of any currently known classifiable disease. McGorm et al (2010) pointed out that referral of patients continues even though specialist opinions diagnose patient symptoms as medically unexplainable and unclassifiable (Rosendal et al, 2005; Nettleton, 2006; Creed, 2009; Frostholm et al, 2005; 2010; Hansen et al, 2011). The value of a health-care strategy that is principally about arriving at a disease diagnosis rather than obtaining expert information and guidance is, at the very least, questionable. Kirmayer et al (2004) argued that if clinical interventions succeed in eliminating symptoms, the lack of a clear explanation is not really important. It is neither appropriate nor reasonable to exclude a proportion of the population from effective health services simply because the condition they are presenting with does not have a classifiable label. Patients with MUS are often left with feelings that their pain and discomfort isn’t important and not deserving of professional care, and as a consequence have to tolerate negative attitudes and are sometimes treated as malingerers (Burton, 2003; Escobar et al, 2010; Govender et al, 2011). A level of expertise, sensitivity and compassion is required to deal with this challenge, and the focus of clinical practice needs to be sufficiently broad so as to allow for an inclusive health-care framework within which patients can be engaged and enabled to feel cared for.

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The clinical perspective The notion of an unspecified disease is clearly a dilemma for clinical practitioners and, in the first instance, any resolution seems to lie in accepting that the patient has a non-classifiable condition (Horrocks et al, 2002; Hatcher and Arroll, 2008; Hartman et al, 2009). This requires practitioners to accept without any dissonance that patients with MUS have a genuine health problem and that patients are neither a malingerer nor a hypochondriac and are entitled to the best and most appropriate care and support. It also means accepting that patients with MUS have tangible and real symptoms that can be measured and identified as being present; the difficulty is that, due to the unique sequence or presentation of these signs and or symptoms, they are presently not classifiable. For

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patients with this unusual set of symptoms, the challenge, first, is convincing themselves that there is something legitimately wrong, which is not easy given the culture and nature of MUS. The second chanllenge involves helping their families to understand the concept of MUS without generating either negative or unhelpful feelings (Salmon et al, 2007; 2009; Hatcher and Arroll, 2008).

Understanding the condition There is evidently a level of failure among friends and families to understand the condition, which is mostly a result of poor explanation and questionable health and social care response. This creates, on occasion, a dismal spiral of support, leading friends and relatives to explore other options with even less success such as special diets, exercise regimes, rest programmes and alternative therapies, each of which is based upon so called ‘success stories’ drawn down from magazines or the internet (Dowrick et al, 2004; Rief and Broadbent, 2007; Aiarzaguena et al, 2008; Arnold et al, 2009). Fortunately for patients with MUS, there is clearly a growing realisation of the scale of the incidence of the condition. To deal with this syndrome effectively requires a fundamental adjustment to services, particularly in the way that health and social care services are structured. Care and support needs to be made available for patients with MUS in a way that hitherto was not thought possible. Negative comments about ‘revolving door patients’ should not be tolerated (Ring et al, 2005; Salmon et al, 2007; 2009). The more fundamental challenge, however, is not necessarily what is either thought or written about patients with MUS; it is rather about dealing with professional tensions that often exist in dealing and coping with patients that do not fit neatly into traditional bodily systems, and accepting a need to refocus the inappropriate specialist services that have tended to emerge around them (Fink, 1992a; 1992b; Reid et al, 2002; Nettleton, 2006).

Integrated and meaningful interventions Much is known about MUS in terms of the incidence, presentation and usual treatment options. What is not so clear is an agreed strategy for assisting patients and their carers to deal with a reality that the cause of their ill-health is not known and that health-care responses have been, up until the present, purely reactive. It is also evident that practitioners charged with meeting the needs of this specific client group require additional skills and that these need to be inter-professional. Furthermore, care needs to be seamless, positive and joined up in a way that is comprehensive, appropriate and available to patients without gaps or duplications (Steinbrecher and Hiller, 2011) (see Box 1 for a summary). The DH (2011) guidelines did not make any contention that MUS does not exist or that attempts to provide a rational diagnosis are incorrect; the guidelines instead focused on eliminating inappropriate care strategies that are not the best use of resources. Nevertheless, there is good evidence that planned and patient-centred interventions can have a positive impact in assisting patients with MUS. To understand and manage the condition effectively, Escobar et al (2010) argued that, in the first instance, medically

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w Believe in patients; encourage them to build on and support their

and a level of relief of symptoms and anxieties w Selective use of pharmacotherapy. Lyles et al (2003) undertook a randomised control trial to develop and implement a 12-month intervention strategy designed to address the needs of patients with MUS and manage their symptoms in a primary care setting. Findings from this study revealed positive benefits from offering a range of physical, psychological and social interventions; these included an improvement in the wellbeing of patients and an alleviation of signs and symptoms of their condition. To be of value, these strands also required careful planning, robust personal assessment of need, simultaneous interventions and care delivery, and (of most benefit) regular review by teams of practitioners that remain committed to their patients despite setback and often delayed evidence of progress. Furthermore, for these strands to be effective, professional colleagues need to be comfortable with delivering a range of supportive services interventions.

w Patients with MUS require explanations and emotional support for their

Psychological support

Box 1. Effective care for medically unexplained symptoms: a summary Integrated support

w Primary care practitioners need to work towards legitimizing MUS as a recognisable and enduring condition

w Practitioners require additional skills to provide high impact interventions that meet the specific needs of this client group

w An interdisciplinary framework is an imperative that should also maximize service user and carer participation Legitimising MUS

w Share the patients uncertainty and concern; agree a management strategy of symptoms

w Introduce the idea that emotions can aggravate physical symptoms strengths

symptoms to make sense

Meaningful interventions

w Appropriate pharmacotherapeutic support w Improve access to psychological therapies: cognitive behavioural therapy can help with chronic pain and fatigue

w Consider multiple modalities and treatment strategies: personalise the plan—physical, medical, psychological and spiritual

w Employ pathways of care to support alternative therapies w Medically unexplained symptoms are just that—patients will present with symptoms that can be explained alongside those that cannot Communication and user participation

w Ensure peer support among health-care professionals to discuss effective management

w Communicate with other health and social care clinicians w Consider a shared plan agreed with the patient, carers and professionals w Share decisions, listen to patients acknowledge the importance of patient’s view

w Focus on the symptoms and their effects on personal functioning unexplained symptoms need to be understood and accepted as just that—patients will present with symptoms that can be explained alongside those that cannot.

Other forms of support Outside of reassurance, managing MUS requires a range of physical, psychological and community support (Smith et al, 2006; 2009; Salmon et al, 2009). Specifically, Heijmans et al (2011) argued that effective management of MUS requires the intervention of three interdependent strands of care.These are: w The creation of a therapeutic milieu built on trust, effective communication that enables good explanations for patients and their fullest involvement in treatment plans w Cognitive approaches that can provide further reassurance

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Salmon et al (2007) conducted a qualitative investigation of GPs’ attitudes towards patients with MUS and an often low take-up of further training opportunities. In the findings, the authors reported an absence of any evidence of negative attitudes toward patients with MUS. Respondents did, however, report limited confidence in delivering psychological support for patients.They also presented a view that this was a considerable barrier to engagement. Salmon et al (2007) concluded that, although complex, there is an issue about the confidence of practitioners to implement psychological support simultaneously with physical care, and that this might well be more important than any preconceived views or attitudes towards patients with this particular condition. Similar findings were reported in a qualitative study conducted by Wileman et al (2002). They concurred with the findings of Salmon et al (2007) when reporting that primary care therapists displayed a level of frustration at not being sufficiently prepared to effectively use psychological skills in the overall management of patients with MUS. At the very least, the findings from these studies (Salmon et al, 2007; Wileman et al, 2002) highlight the value of mandatory training and preparation before embarking on a strategic policy when dealing with matters such as this. Clearly, without a level of confidence among primary health care team members to deliver the necessary level of skill and support, it is reasonable to contend that such strategies are doomed to fail. In contrast, a number of other studies (Kroenke, 2003; Hartman et al, 2013; Shin et al, 2013; Stone, 2013a,b) report good evidence of stability and control of condition where there is evidence of rigorous identification of contributing factors. More importantly they report—where there is a management strategy in place that includes regularly scheduled appointments with a primary care therapist—the engagement of the individual for self-management skills, dealing with enduring symptoms, and the use of research-based complementary therapies.Similar findings, including insufficient training and a lack of national guidelines, were reported in a qualitative study conducted in Poland (Czachowski et al, 2012). The authors concluded that,

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CLINICAL FOCUS with sufficient training and financial resources, primary health care could prove beneficial in the management of patients with this condition. Heijmans et al (2011) contended that, despite the guidance provided by DH (2011a), there remains a need for clearer definitions to enable further research and investigative planning. It is further argued in a number of studies (Creed 2009, Hilderink et al, 2009; Naylor and Bell, 2010; Yu et al, 2010; Heijmans et al, 2011) that, in an era where services are seeking to improve quality and simultaneously reduce costs, research is needed to identify better and more cost-effective management strategies to address the real health needs of these patients (Lyles et al, 2003; Ring et al, 2004; 2005; Hilderink et al, 2009; Morriss et al, 2010; Yu et al, 2010; Heijmans et al, 2011). The UK guidelines (DH, 2009; 2011a; 2011b) considered the value of setting up MUS teams but concluded that there was risk in this practice in that teams might tend to label patients with MUS and that this strategy would encourage a silo management strategy. Instead, the report concurred with Barsky et al (2006), who argue that it is better to encourage inter-professional care that supports the contribution of service users and carers and also increases the use of therapeutic interventions such as motivational interviewing, explanation and scheduled health promoting appointments. Similarly, Allanson et al (2002) published the results of a pilot study that investigated the lack of adequate service provision for patients. They argued that the optimum management of patients in these circumstances was best provided through an interdisciplinary framework, which, at the very least, required a conducive or therapeutic environment to afford the best opportunity for patients to improve physical functioning. They proposed that such a service would benefit patients, relatives and would make better use of finite NHS resources.

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Communication and user participation It is clear that specific care and good support is necessary for patients with MUS and should be offered in ways that were previously not considered possible, beginning with an ethos of care that does not tolerate negativity towards this client group (Nettleton, 2006; Salmon et al, 2007; 2008; 2009; Hatcher and Arroll, 2008; Hartman et al, 2009). Clearly, services need to be much more flexible and responsive to the needs of patients with MUS in much the same way as services currently provide support for clients diagnosed with other more common diseases. Illness explanations must take into account the patient’s and carer’s concerns and simply giving symptoms a label—without offering meaningful reassurance and a plan of action consistent with the patient’s background knowledge and understanding—will not contribute towards resolving the patient’s concerns. Patients with MUS need to be engaged with health-care professionals to create collaborative opportunities for patients and carers to promote constructive treatment plans and quality assurance mechanisms that can measure effectively the value of care (Tritter, 2009; 2011). The engagement of patients needs to be suitably resourced and underpinned by focused evidence and transparent policy guidance.

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Conclusion This article has contended that clear guidelines are required to offer transparent direction for clinical practitioners in order to work together and develop the skills to ensure a seamless and sensitive service for people with MUS. Two themes have emerged, both of which encapsulate the challenges. First, patients need to avoid any feelings of guilt or being on the margins of health care. Second, professionals must assist patients and their families in understanding the difficulties associated with having to live with pain and discomfort that cannot be rationally explained. A common conceptual ‘ground’ needs to emerge whereby service users, carers and health-care professionals can jointly understand and discuss the presence of currently unexplainable symptoms in a shared way. More importantly, such a strategy should provide a means whereby practitioners can work towards repairing any damage caused by relationships that are less than positive and enable marginalized patients with MUS to make full and effective use of mainstream supportive services. This article has offered a review of primary health and social care support for patients with MUS. It would seem that a sensitive and valued service for this substantial client group is required, and that services should be available that are bereft of professional boundaries and where practitioners with a clinical interest can agree appropriate care strategies in agreeing appropriate strategic care and support.  BJCN Aiarzaguena J, Grandes G, Salazar A, Gaminde I, Sanchez A (2008) The diagnostic challenges presented by patients with medically unexplained symptoms in general practice. Scand J Prim Health Care 26(2): 99–105 Allanson J, Bass C,Wade DT (2002) Characteristics of patients with persistent severe disability and medically unexplained neurological symptoms: a pilot study. J Neurol Neurosurg Psychiatry 73(3): 307–9 Arnold I, De Waal M, Eeekhof J, Assendelft W, Spinhoven P, Van Herbert A (2009) Medically unexplained physical symptoms in primary care: a controlled study on the effectiveness of cognitive behavioural therapy by the family physician. Psychosomatics 50(5): 515–24 Barsky A, Orav E, Bates D (2006) Distinctive patterns of medical care utilization in patients who somatize. Med Care 44: 803–11 Bermingham S, Cohen A, Hague J, Parsonage M (2010) The cost of somatisation among the working-age population in England for the year 2008–09. Ment Health Fam Med 7(2): 71–84 Brown R (2004) Psychological mechanisms of medically unexplained symptoms: an integrative conceptual model. Psychol Bull 130(5): 793−812 Burton C (2003) Beyond somatisation: a review of the understanding and treatment of medically unexplained physical symptoms (MUPS). Br J Gen Pract. 53(488): 231–9 Creed F (2009) New research on medically unexplained symptoms: much remains to be done before DSM V and ICD-10 can provide a satisfactory new classification. J Psychosom Res 66(5): 359–61 Czachowski S, Piszczek E, Sowinska A, Hartman T (2012) Challenges in the management of patients with medically unexplained symptoms in Poland: a qualitative study. Family Practice 29(2): 228–34 Department of Health (DH) (2009) Psychological assessment and treatment for medically unexplained symptoms and long-term conditions. http://tinyurl.com/ nea4u8r (accessed 8 January 2014) Department of Health (DH) (2011a) Guidance for health care professionals on medically unexplained symptoms. http://tinyurl.com/o7wt3nu (accessed 8 January 2014) Department of Health (DH) (2011b) Improving access to psychological therapies IAPT: guidance for commissioning IAPT training 2011/12–2014/15. http:// tinyurl.com/psde8d7 (accessed 15 January 2014) Dowrick C, Ring A, Humphris G, Salmon P (2004) Normalisation of unexplained symptoms by general practitioners: a functional typology. Br J Gen Pract 54(500):165–70 Escobar J, Cook B, Chi-Nan C, et al (2010) Whether medically unexplained or not, three or more concurrent symptoms predict psychopathology and service use in community populations. J Psychosom Res 69(1): 1–8

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KEY POINTS w The subject of medically unexplained symptoms (MUS) requires considerably more open and honest discussion

w Limitations in existing resources should be recognised and replaced with joined-up services and care responses that clearly support patients with MUS and their families w Health and social care practitioners need further training that is delivered in a shared way w Decisions around treatment plans and targets must be considered and agreed with patients and their carers

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Medically unexplained symptoms: the need for effective communication and an integrated care strategy.

Much is already known about medically unexplained symptoms (MUS) in terms of incidence, presentation and current treatment. What needs to be urgently ...
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