Organization of care for MUS patients
Bestall et al (2017) described the process of setting up and the early results of a novel liaison psychiatry service in primary care for people identified as frequent general practice attenders with long-term conditions or MUS. They retrospectively extracted data from the EHR on patient reported outcome and experience measures in a limited number of 19 patients and caregiver experience. The expert group developing this program acknowledged the need for long term and individualized care, translating in the need for a “patient” patient approach. Calling for this patience and longer term management goals may run against the grain of modern physicians and society geared towards quick and short term results. This should reflect in attitudes towards MUS patients.
This need for individualization was also substantiated by a narrative review of the literature between 1985 and 2000 on published evidence relevant to primary care dealing with a culturally diverse, challenging MUS patient population. No single approach will effectively treat all patients with MUS in primary care. Patient-centeredness and attention to biopsychosocial needs, patience and empathic communication are core characteristics. Patient-centered care can be the key to cultural competence too. A newer, cross cultural patient centered approach focuses on foundational communication skills, awareness of cross-cutting cultural and social issues, and health beliefs that are present in all cultures. This approach relies on identifying and negotiating different styles of communication, decision-making preferences, sexual and gender issues, roles of family, and issues of mistrust, prejudice, and racism, among other factors. They describe ‘cultural’ challenges that arise in the care of four patients from disparate cultures, then illustrate how to apply principles of patient centered care to these arising challenges [15].
Clinical assessment of MUS patients should include psychological concerns, family and cultural issues, screening for a history of a dysfunctional childhood and for symptoms of depression, anxiety and PTSD. This can be followed by confirmation that symptoms are real, even when linked to psychosocial stress [14] and an individualized treatment, including elements of reattribution, progressive muscle relaxation and related techniques, group or individual CBT, by either GP or mental health clinician) and medication. If indicated for depressive illness, antidepressants should be fully dosed, in insomnia low dose antidepressant medications (antidepressants with sedative properties) should be considered, while avoiding benzodiazepines. The time taken to develop one’s own clinical approach can contribute significantly to patient welfare and their family members, as well as to the GP’s own personal and professional growth [14].
Brownell et al (2016) presented an interim practical management guide (IPMG) that clinical practitioners may find useful. This framework was deduced from or based upon interview data of 12 family physicians and 18 specialists from different domains in two urban centers in 2 different Canadian provinces. Four key themes emerged from the interviews, namely the challenge of diagnosis, the challenge of management and treatment, the importance of communication and, finally, the importance of therapeutic relationship. Key points include the early consideration of a diagnosis of MUS, the limitation of investigations to essentials, a clear definition of the physician responsible for provision of clinical follow up, the assurance by this physician of ongoing patient commitment to care even if a diagnosis is not forthcoming, the development of a care framework for the patient to follow, including supportive lifestyle approaches, the education of the patient about MUS and the distinction between “being resigned to their fate” and commitment to managing symptoms while enhancing life quality, avoidance of exposing the patient to harmful treatments and invasive investigations and a focus on the importance of communication. The key point is to provide care within a framework. This framework should also allow sufficient contact time in order to address uncertainty and complexity in MUS patients. In the in-depth interviews of junior doctors in the UK gaps in service delivery were acknowledged and included insufficient time and resources to explore patient’s needs [37].
In a narrative review with management recommendations Croicu et al (2014) focused on the approach of patients with multiple and persistent physical symptoms, that commonly present in primary care. They stressed the need for collaboration with the patient for effective engagement setting treatment goals in a model of shared decision making. They also indicated screening and treatment of depression and anxiety disorders as a key component of management and that patients should be educated about how psychosocial stressors and somatic symptoms interact. Medically unexplained, persistent or multiple somatic symptoms should heighten a physician’s clinical suspicion of a co-morbid or potentially treatable depressive or anxiety disorder: other predictors of depression or anxiety include recent S tress, poor Self rated health, high Symptom Severity (conceptualized in a 4 S model), perception by the health care provider of a difficult patient encounter, repeated clinic visits and other chronic somatic symptoms [20]. Providers should avoid setting up a dichotomy between mental and physical causation of symptoms.
Olde Hartman et al (2017) addressed current problems in the management of undifferentiated MUS in primary care in a narrative review, encompassing guidelines and systematic reviews. They indicated the limited evidence base of the recommendations and several barriers to their implementation. More evidence is needed on the effect of strengthening the doctor-patient relationship on the course and prognosis of MUS, the influence of specific consultation skills, the effects of physical therapy and ways to deliver psychological treatment more effectively in primary care of patients with MUS. As an example, training GP’s to deliver brief reattribution type interventions in routine consultations improves their skills and attitudes but evidence of improved patient outcomes is lacking. Improving GP explanation of unexplained symptoms proved insufficient to reduce patient’s concerns in a thematic analysis of in depth interviews comparing a trained vs a control GP group. Patient’s decisions over how much, and what information they present to GPs limits the effectiveness of communication training [26]. Hence, Olde Hartman et al (2017) advocate that severe and complex cases should be managed in collaboration with specialists in a stepped-care approach, as psychological treatment delivered by specialists, especially CBT, has the strongest evidence for patient benefit.
Cooper et al (2017) provided an outline of the development and implementation of an ISTDP (Intensive Short Term Dynamic Psychotherapy) service for MUS across two community-based academic family medicine teaching clinics. Preliminary clinical and cost outcome data gathered over the service’s first 18 months were reported: patients reported significantly decreased somatic symptoms in the Patient Health Questionnaire-15, while family physicians’ visits as a proxy to medical consumption decreased in the six months follow after attending the MUS service in comparison to the 6 months prior and both patients and primary care physicians reported a high degree of satisfaction with the service. Assessment of MUS and functional syndromes requires a timely and thorough diagnostic process, in which the biopsychosocial model needs to be the framework but also including somatic reassurance. An example of such an integrated multidisciplinary path was described by Tobback et al (2017) and consists of an as simultaneous as possible somatic, rehabilitation, psychological (including psychodiagnostic testing) and sleep and sleepiness (through polysomnography and multiple sleep latency testing) assessment. This was followed by multidisciplinary discussion, leading to (an often composite) diagnosis and individualized treatment proposal. The concept also stresses the need for interaction with primary care, not in the least in order to allow early detection of somatoform disorders, in a stage that these may be more prone to change and improvement. This approach allowed for more differentiated and multifaceted diagnostication for patients referred with chronic fatigue and presumed chronic fatigue syndrome, identifying an array of CFS without comorbidity, comorbid sleep and psychiatric disorders and finally, previously unrecognized or unacknowledged primary sleep and/or psychiatric disorders, that warrant separate approaches [22].
Ryckegem et al (2017) explored the experiences and expectations of patients with CFS, a major MUS presentation, that were assessed in a dedicated tertiary care referral center for CFS and their general practitioners in semi-structured interviews using open explorative thematic coding. Ambiguities about CFS resulted in mixed feelings in patients, caregivers and the patient environment. A clear need for punctuality, continuity and relevance of reporting as well as of information and education, which also included a clear model of explanation, was identified. There is a need for structured information about the diagnostic process, e.g. through information leaflets. A central intermediator, which is often lacking in the effective implementation of the therapeutic program, seemed essential in order to address gaps in coordination of care.
Attention to diversity issues should be considered during all stages of health care planning, including recruiting and training of health-care staff and organizing and providing health care [31]. The characteristics of in-hospital care and treatment of immigrant patients were explored in semi-structured interviews with care providers regarding ethnic disparities in patient safety [32]. These patient safety events occur through insufficient acquisition in cultural competence (e.g cultural knowledge, attitudes, skills and resources) and are not merely due to ethnic considerations. Medical residents found it easier to “get by” without a professional interpreter even though they were aware of negative implications for quality of care. This was not only driven by time constraints or lack of availability but also by morality and cultural competence. Three key patterns were identified. Patient safety events occur because of a) inappropriate response by health care providers to objective characteristics in immigrant patients, such as low language proficiency, lack of health insurance or genetic conditions; b) misunderstandings between patients and care providers because of differences in illness perceptions and expectations about care and treatment, and c) inappropriate care because of providers’ prejudices against or stereotypical ideas regarding immigrant patients [32].
Discussion and recommendations
It seems important to recognize that diagnostic criteria used in the field of MUS are merely syndromal descriptions. This trend towards diagnostic reductionism which translates into labels such as chronic fatigue syndrome, fibromyalgia, DSM IV somatization disorder or DSM 5 somatic symptom disorder, needs to be superseded or at least complemented by an individual approach. Recognition of symptoms and the dimensions of illness and disability is more important than a debatable and debated diagnosis in search of a disease. This complexity in which cause and effect relationships are not clear and cause and effect seem to merge as they influence each other, as in the interaction between fatigue and pain, needs to be recognized and translated by the caregiver in the approach and communication of MUS patients. It may prove counterproductive to be too restrictive in the case definitions, in particular if the case definition tends to select for more severe cases, that may be less flexible to change.
In a descriptive review and editorial comment cultural and socioeconomic factors proved powerful predictors of individual somatic symptom perception and health care utilization in the domain of functional neurologic syndromes [21]. Dualistic health care systems with separation between somatic and mental health disciplines produce delayed diagnoses (with a mean estimated duration between onset of somatoform disorder and first psychotherapeutic and psychiatric treatment of 25 years) and increase stigma for mental disorders. They stress the need to include available and validated self-report instruments for screening and early diagnosis of functional disorders and somatic symptom disorders (Somatic Symptom Disorder B-criteria scale-12, Patient Health Questionnaire-15). The European Network to improve diagnosis, treatment and health care in patients with persistent somatic symptoms (EURONET-SOMA) published recommendations for core outcome domains in the evaluation of interventions. Early recognition and treatment prevent unnecessary suffering and inappropriate health care utilization. The approach of functional disorders requires explanatory models for the pathway from symptom perception to functional syndromes. Access to effective diagnosis and treatment for all patients, accounting for cultural background, an emphasis on patient empowerment and early participation in the treatment process are key to outcome improvements. This implies enhancements in interdisciplinary training and collaboration between somatic and mental health disciplines.
Future interventions in the communication between even trained GPs and their patients need to help patients to make sense of the complex nature of their problems, reassure that medical attention to psychosocial factors does not preclude vigilance to physical disease and establish a quality of relationship in which patients do not perceive psychosocial enquiry as inappropriate and that fosters an environment in which physicians can support patient self-management [26].
Literature offers evidence of the effectiveness of structural frameworks in approaching MUS patients [5, 8, 33].
Organization of MUS care needs to transcend different levels of care: specialist tertiary and secondary care and primary care involving different qualifications of caregivers need to be aligned. This is essential as in present day Descartian-inspired Western society most patients expect simple biomedical explanations for their unexplained symptoms and struggle, as well as their caregivers, with the complexity of the bio-psychosocial explanation. This includes drifting away from e.g a diagnosis of primary or co-morbid psychiatric conditions. This stresses the need for communication between all actors around the patient and substantiates the need for coordination, with a potential role of dedicated advanced nurse practitioners or case managers, providing the necessary glue in often fragmented and insufficiently interactive care systems, lacking integration. Optimal use of electronic carriers and platforms of information can enhance the integration of the roles of all health care providers involved, in order to ensure continuity and sharing of common views and strategies. The use of these communication tools requires the solution of specific technical and organizational issues and also specific training.
Research should focus on how the implementation of such a function of coordination can increase patient adherence, satisfaction and health-related quality of life and facilitate effective cooperation between the involved parties, to increase cost-effectiveness and the likelihood of desired outcomes of the diagnostic and therapeutic process [30]. Finally, expectations need to be tailored to realistic objectives, which often proves difficult in MUS patients. This again underscores the need for structured and longitudinal follow-up, coaching and encouraging patients along the long track to improvement. It should be recommended, as society as well as the medical community feels these patients are not prone to improvement of quality of life or socioprofessional reintegration, to prove the effectiveness of structured long-term follow up by health care professionals adequately trained in the field through relevant outcome measures (PROM and PREM). These should be included as a tool in follow up consultations; their use should not restricted to the generation of service statistics.
acknowledgments
The study was funded by the European Commission, Erasmus+ Strategic Partnership aimed at Medical Education on Medically Unexplained Symptoms and Intercultural Communication. /MUSIC/ Nr. 2018-2021.2018-1-NL01_KA203-038971