Results

Of 364 new patients booked in the designated clinics during the study period 48 did not attend, leaving 316 eligible to participate. Of these, 12 refused, one was too cognitively impaired to be assessed, two patients were lost to assessment, and one found the assessment distressing and withdrew. This left 300 patients, a participation rate of 96% of attenders and 82% of referrals.

Of the patients included 174 (58%) were female. The mean age was 43 (range 14 to 88) years. Of the 300 patients 33 (11%) had symptoms which were considered to be not at all explained by organic disease and a further 57 (19%) had symptoms only somewhat explained by organic disease. This compared with 81 (27%) who had symptoms largely explained and 129 (43%) whose symptoms were completely explained by organic disease. At the 6 month case note review, there had been little change in the neurologists' opinion concerning organicity. In four cases expected organic causes were not confirmed by investigation. In a further six cases, where patients had been rated as having largely or completely explained symptoms, unexpected organic causes of disease were found. Thus, although the diagnosis changed the organicity rating did not. There were no cases in which an organic cause emerged for symptoms initially considered not at all or somewhat explained.

The GPs' reasons for referral are shown in table 1. When the reasons for referral were compared by organicity rating we found that about two thirds (14, 64%) of the 22 patients who had been referred at their own request had symptoms that were largely or completely explained by organic disease. Of those 28 patients referred to “reinforce my opinion of no neurological disease” 11 (39%) were considered by the neurologists to have symptoms which were largely or completely explained.

Patients' characteristics are shown in table 2. The groups did not differ substantially or significantly in terms of age or sex. Neither, were there statistically significant differences between them in their general health perception, physical function, or physical role function as measured by the SF-36. Patients whose symptoms had lower organicity ratings did, however, report a significantly greater number of physical symptoms, more bodily pain, and more impaired social functioning. A significantly greater number of patients in the low organicity groups were diagnosed as having anxiety and depressive disorders. This was reflected in their increased impairment on the vitality, emotional role function, and mental health scales of the SF-36.

Discussion

One third of new general neurology outpatient attenders had symptoms which were either not at all or only somewhat explained by organic disease. A 6 month case note review showed that further assessment and investigation had not disclosed an organic cause of disease in any of these patients. In the few cases in which opinion did change, this was only because expected organic causes of disease were not confirmed by further assessment and investigations. The neurologists' ratings of medically unexplained symptoms were therefore valid, at least in the short term.

In most cases, patients with unexplained symptoms had been referred because they needed neurological diagnosis and possible treatment. Given this, and the finding that 39% of the patients referred to as “reinforce my opinion of no neurological disease” in fact had definable organic disease, we suggest that specialist opinion has an important part to play in clarifying the clinical situation in these complex patients.

Self reported physical functioning was just as impaired in patients whose symptoms were of lower organicity as in those whose symptoms were associated with identified organic disease. Furthermore, patients with complaints of low organicity reported a greater number of physical symptoms, more pain, and were more likely to have emotional disorders. Symptom clusters of multiple, painful complaints, particularly in depressed or anxious patients, should be regarded as diagnostic pointers towards unexplained symptoms. It should be noted that this is a highly debilitating picture and comments such as “don't worry, there is nothing really wrong here” are likely to be disbelieved or annoy patients, who perceive themselves to be in great suffering. Therefore, clinically it is necessary to give some validation to the reality of the patients' symptoms before starting to explore aetiological models with them.

These findings must be considered in the context of potential methodological shortcomings. Firstly, although the clinics were considered representative of the overall service, and referrals were taken from a common pool, certain specialised clinics, in particular neurovascular and memory clinics, were not represented in the study sample. The sample may therefore not be fully representative of neurology outpatient referrals. This limitation notwithstanding, the very high participation rate of 96% of patients suggests that this sample is representative of new attenders to the general neurology outpatient clinics. Secondly, there must be some uncertainty about how the threshold for referral, or the view of what constitutes an appropriate referral among local GPs, compares with that of GPs elsewhere.

The finding that 30% of referred patients had symptoms that were not well explained by organic disease is in agreement with previous reports. Perkin,4 in his review of 7836 consecutive new neurological patients whom he had seen personally at Charing Cross Hospital, reported that 26% of patients received no medical diagnosis and a further 4% had symptoms of conversion hysteria. Similar findings have been shown in female in-patient neurological populations by Creedet al 14 The important new findings from our study are that this group of patients are disabled by their symptoms and have very high rates of emotional disorder.

This frequency of medically unexplained symptoms does not seem to be unique to general neurology. Two retrospective case note reviews indicate the frequency in other settings: in United States ambulatory care Kroenke and Mangelsdorff15 found that only 16% of physical complaints were explained by organic disease. In United Kingdom outpatient care, Hamilton et al 3 reported rates of 53%, 42%, and 32% in gastroenterology, neurology, and cardiology, respectively for the percentage of patients whose symptoms remained medically unexplained after assessment.

In our study, the patients with anxiety and depressive disorders were overrepresented among those whose symptoms were considered less organic. However, it should be noted both that emotional disorders were also common in patients with identifiable neurological disease and that many of the patients with unexplained symptoms did not have definite evidence of emotional disorder.

Given the substantial number of patients with symptoms largely unexplained by identifiable organic disease; disability at least as high as in those patients with a more definite explanation for their symptoms, and a greater likelihood of emotional disorder, we suggest that this group of patients has been neglected. Research into the treatment of symptoms not clearly explained by organic disease should therefore, in our opinion, enjoy a higher priority than it currently does.