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