Medically unexplained symptoms (MUS) is an umbrella term (Lidén and Yaghmaiy, 2017; Jones, 2019) that is often applied when people present with heterogeneous symptoms for which no organic disease can be detected (Murray et al, 2013). The explanation or lack thereof for MUS is paradoxical as diagnosis often arises because an alternative explanation is absent (Murray et al, 2013). Approximately 20% of new primary care consultations in the UK are cases of MUS, rising to approximately 52% of new referrals to secondary care (Jadhakhan et al, 2019). Individuals often have a history of multiple diagnoses (Nunes et al, 2013).
In the UK, there are no overarching National Institute for Health and Care Excellence (NICE) pathways or Scottish Intercollegiate Guidelines Network guidelines for MUS or associated physical or functional disorders. NICE provides links to related resources while NHS Education for Scotland (2020) and the Scottish Government (2024) have produced learning materials and policies to improve practice regarding conditions with commonalities with MUS.
In some settings in the UK, people living with MUS are referred to a liaison psychiatry team who work to provide care that connects mind and body (Wojcik, unpublished, 2022). However, Reid et al (2001) reported that GPs often felt such individuals should continue to be managed in primary care.
The lack of a clear guideline or pathway means that patients with MUS in the UK may be cared for in an ad-hoc way that is not necessarily evidence based. This has potential to add stressors to primary care health services, which the Royal College of General Practitioners (2023) describes as overwhelmed.
To this end, a literature review was undertaken to explore and understand the experiences of this group when interacting with healthcare providers.
Methods
A bank of search terms was cultivated by a scoping search of existing literature. A PICO (patient/population, intervention, comparison and outcomes) format of the terms was adopted, with Boolean operators and truncations in different combinations, and exclusion and inclusion criteria applied (Melnyk and Fineout-Overholt, 2018) (Tables 1and2).
Table 1. Patient/population, intervention, comparison and outcomes search
| Search terms, Boolean operators and truncations | ||||||
|---|---|---|---|---|---|---|
| P(population, problem) | AND | I(intervention) | AND | C(comparison, context, control) | AND | O(outcome) |
| PsychosomaticORMedically unexplained symptoms (MUS)ORMedically unexplained physical symptoms (MUPS)ORRare diseasesORSomatic symptom disorder (SSD) | DiagnosisORTreatmentORQuality of lifeORDefinitionORHealthcare provi* | Not applied | ExperienceORQualitative | |||
Table 2. Inclusion/exclusion criteria
| Inclusion | Rationale |
|---|---|
| English language | So can be read and understood by researcher without translation |
| 2010 onwards | More recent and up to date; number of results within scope of this study |
| Peer reviewed | Increase reliability and validity of studies |
| Full text available | The paper can be accessed and read in full |
| Exclusion | Rationale |
| Reviews | To be within the parameters of this study design |
| Duplicates | To save researcher time |
The terms were searched using the Discover search tool from EBSCO to target several databases simultaneously. Some subject searches were also conducted using the MeSH 2021 and CINAHL Headings platforms to enable a thorough search of the topic, as a consensus has not yet been reached regarding vocabulary for this.
The PRISMA framework was used to identify articles relevant to the search (Moher et al, 2009). The database searches resulted in 404 articles, and 14 were identified by hand searching relevant journals such as the Journal of Psychosomatic Research, British Journal of General Practice and Qualitative Health Research and forward and backward citation searches.
Of the 404 articles, 196 were screened by comparing the abstract to the inclusion criteria. Then, 106 articles were then excluded using the same method as the focus; criteria were clarified and 90 articles were read in whole, using an SQ3R checklist (survey, question, read, recite, review) adapted as guidance.
Eighty-three articles were then excluded, leaving seven, which were included and critically appraised and manually synthesised. Of the seven records included in the review, five were from the database search and two from other sources.
The seven records were Nunes et al (2013), Moulin et al (2015), Kornelsen et al (2016), Lidén and Yaghmaiy (2017), Houwen et al (2017), Sowińska and Czachowski (2018) and Houwen et al (2019).
Results and findings
This review included seven primary research studies published between 2013 and 2019. Most were conducted in European countries with one originating in Canada.
The following interlinked themes emerged and are presented in turn: meaning of diagnosis; expectations; communication; and healthful relationships. A summary of the findings relevant to nursing is presented.
Meaning of diagnosis
The ‘naming’ of a person's experience through a diagnosis or explanation is important to them. It provides individuals with validation and meaning of their experience (Nunes et al, 2013; Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017; Sowińska and Czachowski, 2018). However, it is also apparent that people with MUS do not want to be ‘reduced’ to a label or lose their sense of self (Lidén and Yaghmaiy, 2017).
Receiving a diagnosis can enable individuals to continue their life journey instead of remaining in a state of unknowing and, for most, this was the primary desire (Moulin et al, 2015; Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017). Some parents of adolescents with MUS expressed frustration at having no formal diagnosis as they perceived that this would enable them to take productive action (Moulin et al, 2015).
However, for many participants, even when a diagnosis or explanation is presented, it is often unclear (Nunes et al, 2013; Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017; Sowińska and Czachowski, 2018), poorly communicated (Houwen et al, 2019), and poorly understood (Moulin et al, 2015).
Kornelsen et al (2016) postulated that participants believe a diagnosis will enable them to begin specific treatment. Houwen et al (2019) added that clinical assessments should inform a ‘treatment strategy’, not just be in pursuit of a diagnosis. Lidén and Yaghmaiy (2017) further suggested that primary care practitioners should look beyond finding a diagnosis to focus on health promotion, long-term positive adaptations and coping strategies.
Therefore, having a diagnosis is significant as it is seen by patients as helping to facilitate the acceptance of MUS and to managing the condition in the long term (Moulin et al, 2015; Sowińska and Czachowski, 2018).
Within this theme, two distinct sub-themes were identified: psychological diagnosis; and anxiety and uncertainty.
Psychological diagnosis
When no physical cause can be found, a psychological explanation is often considered (Moulin et al, 2015; Kornelsen et al, 2016). Within the review, it appears that many patients with MUS are disappointed when their symptoms are attributed to psychological reasons, responding with widespread reservation and scepticism (Nunes et al, 2013; Moulin et al, 2015; Kornelsen et al, 2016; Sowińska and Czachowski, 2018).
Reasons for this include worry about the consequences and associated stigma (Moulin et al, 2015), the effect a label of a mental health disorder might have on their healthcare ‘trajectory’ and ‘prejudice’ on the part of primary care providers (Kornelsen et al, 2016; Houwen et al, 2017). Some felt dismissed when receiving a psychological explanation as this did not match their experiences of their symptoms, or they felt that they had been given the ultimate diagnosis by deduction (Kornelsen et al, 2016).
Some patients viewed this as the primary care provider ‘giving up on them’ or perceived the conversation to imply that it was ‘all in [their] head’ which led to self-doubt, questioning (Kornelsen et al, 2016) and a pressure to ‘fix themselves’ (Moulin et al, 2015; Kornelsen et al, 2016; Sowińska and Czachowski, 2018). Conversely, for some people living with MUS, a diagnosis of psychological origin brought power and freedom, but this appears to be influenced by the way the process is supported by primary health practitioners (Kornelsen et al, 2016). For many, this process of diagnosis is associated with great anxiety (Nunes et al, 2013).
Anxiety and uncertainty
People living with MUS have greater levels of anxiety than those with medically explained symptoms, and anxiety-inducing experiences are woven through their narratives (Houwen et al, 2019). Furthermore, Houwen et al (2019) identified a cycle of negative healthcare experiences that can contribute to anxiety levels, which are a ‘strong predictor of increasing healthcare use’.
The approach to exploring a diagnosis appears to be significant to these patients and should be underpinned by sympathetic understanding of the individuals' thoughts, fears, expectations, motivations and psychological needs during consultation (Nunes et al, 2013; Sowińska and Czachowski, 2018). These experiences can contribute to the anxiety and uncertainty felt by participants, which can be exacerbated when their experiences do not live up to expectations.
Expectations
The studies identified disparities between the expectations of people living with MUS engaging with healthcare systems and their actual experiences, beliefs and ideas. This centres around three main areas: management; conduct of primary healthcare providers; and the healthcare system itself.
Management
Participants approached healthcare services expecting a diagnosis or explanation through tests that would provide a foundation for the next steps (Nunes et al, 2013; Kornelsen et al, 2016; Houwen et al, 2017; Sowińska and Czachowski, 2018).
Nunes et al (2013) found that these patients expected more testing than they received but less medication than they were prescribed. The study by Moulin et al (2015) found that parents of adolescents with MUS felt they had to put pressure on doctors for more investigations and medications. However, arguably, continual testing in the presence of MUS is unnecessary because of the risks associated with investigations such as infection or radiation exposure as well as cost (Kornelsen et al, 2016; Houwen et al, 2017).
A concerning finding in the literature was that many of these patients did not receive a management plan, even when intervention as simple as ‘reassurance’ or ‘advice’ was considered (Nunes et al, 2013). Houwen et al (2017) found that any plans suggested by the individual were not given much attention. This contributed to patients reporting a sense of feeling lost in the healthcare system (Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017).
Conduct of primary care practitioners
The studies highlighted that the attitude and approach of the primary care practitioner was a significant factor in the degree to which people living with MUS felt their expectations had been met.
Some participants reported having felt uncomfortable during their consultations, specifically regarding a lack of attention and a sense that the clinician was unprepared for their needs (Houwen et al, 2017; Sowińska and Czachowski, 2018). Some patients perceived they had not been ‘taken seriously’ (Nunes et al, 2013; Houwen et al, 2017; Sowińska and Czachowski, 2018).
This links strongly with the theme of communication, which is discussed below.
Healthcare system
Within the selected studies, participants often described healthcare systems as having a lack of continuity. Some experienced: problems with the availability of appointments to see a primary health clinician (Lidén and Yaghmaiy, 2017); difficulties in access and referral to further services (Sowińska and Czachowski, 2018); and financial constraints caused by a prolonged care journey (Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017; Sowińska and Czachowski, 2018).
The patients may have met a different professional at each appointment or experienced multiple referrals, and reported feeling ‘lost’ and ‘isolated’ (Kornelsen et al, 2016), ‘wandering around’ (Moulin et al, 2015), ‘abandoned’ or even being a ‘medical orphan’ (Lidén and Yaghmaiy, 2017).
In one study, participants reported feeling having reached ‘a dead end’ (Kornelsen et al, 2016). These words illustrate powerfully that patients' experiences fell short of their expectations. Lidén and Yaghmaiy (2017) and Sowińska and Czachowski (2018) suggested that better continuity and access could be provided through long-term management plans. In addition, expectations could be better met through effective communication, which will now be explored.
Communication
People living with MUS frequently reported the need for their ideas, concerns and expectations to be actively listened to and were unlikely to engage if decisions did not match these (Nunes et al, 2013; Moulin et al, 2015; Houwen et al, 2017; Lidén and Yaghmaiy, 2017; Sowińska and Czachowski, 2018). Patients often felt as if health professionals were interested only in receiving their symptoms and presenting history. Establishing an underlying dialogue shows respect (Kornelsen et al, 2016), enables common ground and understanding to be found (Nunes et al, 2013) and can help prevent feelings of being ‘medically homeless’ (Lidén and Yaghmaiy, 2017).
‘Being heard’ was one of the most frequently cited desires of an encounter with primary health clinicians (Lidén and Yaghmaiy, 2017; Houwen et al, 2019). Some individuals highlighted the impact of attending an appointment with a psychologist as this was a person who listened to and understood them (Moulin et al, 2015; Sowińska and Czachowski, 2018) in contrast to the hesitation of others over referral to psychological services. This highlights the positive influence effective communication can have on both the mental and physical wellbeing of individuals (Houwen et al, 2017).
Some papers stated that individuals' narratives came across as ‘chaotic’ (Sowińska and Czachowski, 2018; Houwen et al, 2019) and ‘over dramatized’ (Nunes et al, 2013). The judgement inherent in these clinicians' words furthers the case for the negative communication experienced by these patients.
Appropriate communication enables an individual's reinterpretation and allocation of a new ‘storyline’ in their narrative (Lidén and Yaghmaiy, 2017). Even when being listened to, some patients found they lacked the shared language to articulate themselves appropriately (Lidén and Yaghmaiy, 2017). Therefore, people with MUS place a high value on the occasions when health professionals have been able to put their experiences into words (Nunes et al, 2013).
Non-verbal communication is also highly valued by these individuals as it shows interest (Nunes et al, 2013) and respect, and enables more personal conversation (Kornelsen et al, 2016; Houwen et al, 2017). Participants in the studies experienced a lack of non-verbal communication including primary care practitioners missing opportunities to show empathy (Nunes et al, 2013; Kornelsen et al, 2016; Houwen et al, 2017; Sowińska and Czachowski, 2018; Houwen et al, 2019) and displaying negative nuances such as eye-rolling (Kornelsen et al, 2016). Therefore, appropriate non-verbal cues need to be given and picked up to optimise communication with this group of patients.
Healthful relationships
Individuals exist in communities and relationships play a big role in their health (Lidén and Yaghmaiy, 2017). When people with MUS do not have one point of contact, visiting multiple professionals creates a challenging context in which to build a satisfactory relationship (Moulin et al, 2015; Kornelsen et al, 2016). These patients struggle to communicate their condition to those around them (Kornelsen et al, 2016), leading to their communities of support shrinking. Therefore, functioning relationships between practitioner and service user can be foundational to the healing process (Kornelsen et al, 2016). Healthful relationships cultivate better outcomes, higher satisfaction and less use of services (Kornelsen et al, 2016).
Having a healthful relationship with a primary care practitioner helps people living with MUS navigate services (Kornelsen et al, 2016). A good quality of interaction with this clinician can help individuals feel less defeated by uncertainty and they can maintain a sense of self when their dignity and distress are acknowledged (Lidén and Yaghmaiy, 2017). However, in the studies, the participants reported that they did not experience the authentic presence of the practitioner during consultations (Houwen et al, 2017). This theme has been apparent throughout this review.
Healthful relationships are formed on a foundation of trust and respect that is reciprocated (Kornelsen et al, 2016, Lidén and Yaghmaiy, 2017). Mutual respect facilitates shared understanding and decision-making, particularly in the exploratory stage of symptoms (Lidén and Yaghmaiy, 2017). However, in the studies reviewed, primary care practitioners and people with MUS often have different perspectives on the urgency and expectations of care, which can create dissonance and disengagement with services (Kornelsen et al, 2016). Such a lack of partnership can lead to the patients feeling ‘excluded’ and a ‘low priority’ (Lidén and Yaghmaiy, 2017) and result in them challenging the practitioner (Kornelsen et al, 2016; Lidén and Yaghmaiy, 2017).
Built on respect, healthful relationships are important in providing support in navigating the healthcare system and can have a therapeutic role (McCormack et al, 2020). When these foundations are not in place for people living with MUS, as this review shows, it can lead to conflict and mistrust of services and clinicians.
Discussion
The findings of this review indicate that the experiences of patients with MUS are complex and challenging for them. This group often experiences a diverse range of symptoms and high levels of anxiety and uncertainty.
The understanding and practice of caring for these patients appear to have no clear or appropriate evidence base or framework. Individuals approach health services with expectations which they report are rarely addressed or met. These include the desire for a management plan, a high-quality relationship with practitioners and a straightforward experience of navigating the healthcare system.
Moreover, people with MUS experience ineffective communication, which inhibits them from providing their own narratives in full in consultations with practitioners. They want healthful relationships with clinicians based on trust and respect and where decision making can be shared.
Implications for nursing
The studies reviewed only implicitly advocate a multidisciplinary team approach to help patients with MUS except for one (Lidén and Yaghmaiy 2017), and the role of the nurse did not emerge in this review.
The research reviewed relates only to primary care settings and practitioners, who are often GPs. Although this may reflect some limitations in the search strategy, within many of the studies it was apparent that the assessment, management, and treatment of people living with MUS are often conducted within a biophysical model of care, which influences their experiences. The biophysical model is typical of many Westernised healthcare systems that focus on the diseased body and curative solutions, rather than viewing the person as a whole. This is problematic with regard to understanding MUS (Houwen et al, 2017; Lidén and Yaghmaiy, 2017; Houwen et al, 2019). There is commonality among the papers in this review that, to overcome the barriers to caring for this group of patients, there needs to be a more holistic approach as embodied in person-centred practice (Houwen et al, 2017).
Most of the studies use these accounts to support calls for better practice and education for primary care clinicians in consultation skills (Houwen et al, 2017) and communication in the context of MUS (Nunes et al, 2013; Moulin et al, 2015; Kornelsen et al, 2016). These skills and attributes arguably are central to the role of the nurse, as outlined by the Nursing and Midwifery Council (2018) standards of proficiency.
The authors assert that issues arising in the themes of this literature review resonate strongly with elements in a person-centred nursing framework (McCormack et al, 2010). This includes the formation of healthful relationships, working with values and beliefs, and shared decision-making (McCormack and McCance, 2017), aligned with the needs of people with MUS. However, within the studies, only Nunes et al (2013) and Houwen et al (2017) went as far as explicitly recognising these concepts as ‘patient centred’.
A person-centred approach to the support of this group would include a commitment to healthful relationships (Houwen et al, 2017) and strengthening open and ongoing dialogue as well as practitioner reflection (Lidén and Yaghmaiy, 2017). This would include families, as individuals exist in communities (Nunes et al, 2013; Moulin et al, 2015). However, the lack of a shared language (Moulin et al, 2015) and no sound foundation for evidence-based practice (Lidén and Yaghmaiy, 2017) presented in the literature mean that much reflection on and revision of current practices are required.
Regarding liaison psychiatry, Parsonage et al (2012) called for ‘an enhanced role’ in community care to improve the services for people with MUS. In primary care, this change in skill mix has the potential to facilitate quality and continuity of care and contribute to reducing GPs' overwhelming workload (Freund et al, 2015). The presence of such principles in the literature suggests that nurses are well equipped to provide care that is person centred. Additionally, nurses working in primary care will already have expertise in the support and management of people living with long-term conditions in the community (Askerud and Conder, 2017).
The gaps in service delivery described by people living with MUS could be improved by having a specialised nurse role within primary care to provide sustained and person-centred support during a person's journey. A specialist nurse could facilitate the building of a healthful relationship, reducing the anxieties felt by this group when engaging with healthcare systems. A nurse who has time allocated to spend with patients and is equipped with advanced communication skills can listen to individuals expressing their whole story, avoiding repetitive retelling. Through ongoing open dialogue, a nurse could advocate for a person if required, enabling them to maintain their sense of self.
Developing such a nursing role has the potential to enhance effective coordination and facilitation of an individual's movement through the healthcare system. Connecting people who have MUS with specialists and relevant services would enable consistency and continuity in the care process, avoiding unnecessary tests and interventions. This could help combat their feelings of being ‘lost’ in the healthcare system. Having a specialist nurse role for these patients would provide a foundation for person-centred, holistic and multidisciplinary practice. Having such an emphasis on support and management rather than treatment could enable individuals to flourish—a key principle of person-centred nursing practice (McCormack and McCance, 2017).
Limitations
A limitation of this literature review is that none of the papers are from the UK, the context in which the authors are practising. However, the authors argue that findings are applicable as the literature presents a topic relatable across Western countries and health systems.
The authors contend that opportunities for further research exploring nursing practice in primary care should be pursued to provide an evidence-based foundation for person-centred care of people in the UK.
Conclusion
The definition of MUS is often ambiguous because of the diverse range of symptoms and the similarities with other conditions. Symptoms may have a profound impact on an individual's quality of life and patients often experience a high rate of anxiety and uncertainty from having their condition. This is compounded by difficulties in providing a diagnosis, and ongoing testing combined with the possibility of a psychological explanation.
This review highlights that the understanding and practice of care for people with MUS do not have an adequate evidence base or framework. Individuals approach healthcare services with expectations of their own that are rarely addressed or met. These include the desire for a management plan and an engaged GP; there are also difficulties in navigating the healthcare system as a whole. People have experienced not being listened to and negative non-verbal communication. They require the opportunity and encouragement to be able to provide their own narrative in full.
Participants in the studies reviewed highlighted a desire for healthful relationships with practitioners as these have a therapeutic effect. This can be achieved through shared decision-making based on trust and respect. However, this does not often happen in practice.
The findings of this review indicate a need for more research to inform an evidence base on which to build healthcare provision for people with MUS. Within this, there is scope for a person-centred nursing role.
KEY POINTS
- There is a lack of consensus and understanding of the experience of persons living with medically unexplained symptoms by health practitioners
- People with medically unexplained symptoms perceived diagnosis as a main objective and their experiences are shaped by stigma and how diagnosis is provided
- The expectations of these patients are rarely met and they often lack a management plan
- People living with medically unexplained symptoms often have negative experiences of communicating with health professionals, which can have a detrimental effect
- Healthful relationships are not facilitated but are desired and sought by people with these symptoms
CPD reflective questions
- What is your knowledge of medically unexplained symptoms and patients affected by them?
- How would you encounter people living with medically unexplained symptoms in your role and what would your process be on meeting a such a patient? Do you know the referral system, services, pathway of care or best practice?
- What could you adopt in your practice in the theme areas of diagnosis, expectations, communication and healthful relationships?
- As a nurse, what opportunities do you have to facilitate human flourishing for patients with medically unexplained symptoms through person-centred practice?