The general practitioners perspective regarding registration of persistent somatic symptoms in primary care: a survey

Up to 50% of primary care visits in Western societies are related to symptoms that cannot be fully explained by well-known biomedical pathology [1‐4]. While most of these symptoms are self-limiting, 2.5–10% of cases persist without clear medical explanation [5‐9]. These persistent somatic symptoms (PSS) are accompanied by increasing disease burden for both the patient and the healthcare system [10]. Differentiation from well-known chronic medical conditions and classification of symptoms as PSS is challenging [11]. Challenges arise from similarities between symptoms of PSS and other conditions, possible co-existence with a well-documented medical disorder, the heterogeneity of symptoms, lack of universal guidelines and the lack of biomarkers [3, 12‐14]. Delayed identification of PSS impedes early management of symptoms, which in turn can result in inappropriate healthcare utilization and high costs [15‐17]. Additionally, it may hinder reusability of electronic health records (EHR) for research, quality monitoring and proactive population health management [17‐20].

Across medical and psychological specialties, a variety of terminology and aetiology is reflected in different concepts of PSS. While some countries have specific guidelines for PSS, widely accepted guidelines for classifying (and treating) PSS are missing [3]. PSS is currently diagnosed as either a somatic disease or a mental disorder, since diagnostic classifications are inherently dualistic in nature [21]. In the medical field, patients may be classified under umbrella terms such as ‘medically unexplained physical symptoms’ (MUPS), ‘functional somatic symptoms’, and ‘somatically fixed’ [9, 22], which indicate a negative symptomology – i.e. a lack of medical pathology [23]. PSS may also be classified as syndromes such as irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) or fibromyalgia (FM). Ongoing debate about terminology has redirected the most recent versions of the diagnostic and statistical manual of mental disorders (DSM-5) [24] and the international classification of disease (ICD-11) [25] towards no longer requiring the explicit exclusion of any underlying medical condition (this only applies to PSS-related classifications in the mental health chapter). Both focus on positive symptomology, such as maladaptive cognitions, emotions and/or behaviours related to the somatic symptoms [3, 13], as described in the DSM-5 as the so-called B-criteria of somatic symptom disorder (SSD) [24, 26]. Still, consensus on labelling and addressing these symptoms is limited. In this paper, the term ‘persistent somatic symptoms’ (PSS) is used since the descriptive nature of the term transcends the problem of dualism. Moreover, recent research has found that this term is generally preferred over other terms [27].

In the Dutch health care system, as well as in many (Western) countries, the GP serves as a gatekeeper for health care in general. The classification of symptoms and illnesses in EHRs by Dutch GPs is based on the International Classification of Primary Care (ICPC) system [28]. Since medical practice historically operates according to mind–body dualism, physicians are required to locate complaints either in the body or the mind [21]. Accordingly, most symptoms and disorders – physical and psychological – have a domain specific diagnostic code in the ICPC. Nonetheless, the current ICPC lacks a specific and clearly defined code for PSS and the ICPC system instructs to register symptoms not fulfilling the criteria for a diagnosis on a symptom level [28, 29]. Arguably, registration of cases with PSS is less straight forward due to the multi-domain nature of PSS even though the ICPC does contain a chapter with multi-domain codes (A-chapter). Nonetheless, there are international codes available for some PSS-related syndromes (such as, IBS), and the Dutch ICPC also contains codes for FM and CFS [28].

While several studies have documented ample diagnostic variation regarding patients with PSS in general practice [30, 31], it is not well documented which codes or other methods GPs use for registration of PSS and if they find their current approach to registration satisfactory. The primary aim of the present study was, therefore, to explore how GPs currently register PSS. The secondary aim was to gauge GPs’ perspective on their needs to improve classification, registration and care for PSS.

Of the approximately 12,000 active GPs in the Netherlands, an estimated 2,000 GPs were reached through our distribution method. In total, 259 GPs (13%) fully completed the survey, with exception to the fourth item (4) which was completed by 189 GPs. Table 1 displays the characteristics of the total sample. Of the GPs who filled out the survey, 60.2% were female, which reflects the current trend towards increasing numbers of female GPs in the Netherlands [35]. GPs from all regions in the Netherlands completed the survey. GPs years since graduation is reasonably evenly distributed over 5-year periods, varying between the smallest group of GPs graduating between 26 to 30 years since participating in the survey (8.5%) and the largest group of GPs graduating between 6 to 10 years before participation (17.8%).

Registration of PSS in primary care is currently ambiguous. Specific complaints presented by patients with PSS are primarily coded on a symptom-specific level. Approximately half of GPs expressed a need for more coding options for PSS and over half of GPs reported a need for further training, tools or other support regarding PSS. Since many of the latter already exist, improvements should be directed at new options for registration, specifically coding, and increasing and spreading knowledge about PSS, guidelines, available tools and referral options.