Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up?

Jon Stone, A. Carson, R. Duncan, R. Coleman, R. Roberts, C. Warlow, C. Hibberd, G. Murray, R. Cull, A. Pelosi, J. Cavanagh, K. Matthews, R. Goldbeck, R. Smyth, J. Walker, A. D. MacMahon, M. Sharpe

    Research output: Contribution to journalArticle

    150 Citations (Scopus)

    Abstract

    It has been previously reported that a substantial proportion of newly referred neurology out-patients have symptoms that are considered by the assessing neurologist as unexplained by 'organic disease'. There has however been much controversy about how often such patients subsequently develop a disease diagnosis that, with hindsight, would have explained the symptoms. We aimed to determine in a large sample of new neurology out-patients: (i) what proportion are assessed as having symptoms unexplained by disease and the diagnoses given to them; and (ii) how often a neurological disorder emerged which, with hindsight, explained the original symptoms. We carried out a prospective cohort study of patients referred from primary care to National Health Service neurology clinics in Scotland, UK. Measures were: (i) the proportion of patients with symptoms rated by the assessing neurologist as 'not at all' or only 'somewhat explained' by 'organic disease' and the neurological diagnoses recorded at initial assessment; and (ii) the frequency of unexpected new diagnoses made over the following 18 months (according to the primary-care physician). One thousand four hundred and forty-four patients (30% of all new patients) were rated as having symptoms 'not at all' or only 'somewhat explained' by 'organic disease'. The most common categories of diagnosis were: (i) organic neurological disease but with symptoms unexplained by it (26%); (ii) headache disorders (26%); and (iii) conversion symptoms (motor, sensory or non-epileptic attacks) (18%). At follow-up only 4 out of 1030 patients (0.4%) had acquired an organic disease diagnosis that was unexpected at initial assessment and plausibly the cause of the patients' original symptoms. Eight patients had died at follow-up; five of whom had initial diagnoses of non-epileptic attacks. Seven other types of diagnostic change with very different implications to a 'missed diagnosis' were found and a new classification of diagnostic revision is presented. One-third of new neurology out-patients are assessed as having symptoms 'unexplained by organic disease'. A new diagnosis, which with hindsight explained the original symptoms, rarely became apparent to the patient's primary care doctor in the 18 months following the initial hospital consultation.

    Original languageEnglish
    Pages (from-to)2878-2888
    Number of pages11
    JournalBrain Research
    Volume132
    DOIs
    Publication statusPublished - 2009

    Keywords

    • conversion disorder
    • neurology
    • medically unexplained symptoms
    • misdiagnosis
    • prognosis
    • WIDESPREAD BODY PAIN
    • UNITED-KINGDOM
    • REFERRALS
    • HYSTERIA
    • OUTPATIENTS
    • PREVALENCE
    • MORTALITY
    • CLINICS
    • CARE

    Cite this

    Stone, Jon ; Carson, A. ; Duncan, R. ; Coleman, R. ; Roberts, R. ; Warlow, C. ; Hibberd, C. ; Murray, G. ; Cull, R. ; Pelosi, A. ; Cavanagh, J. ; Matthews, K. ; Goldbeck, R. ; Smyth, R. ; Walker, J. ; MacMahon, A. D. ; Sharpe, M. / Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up?. In: Brain Research. 2009 ; Vol. 132. pp. 2878-2888.
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    abstract = "It has been previously reported that a substantial proportion of newly referred neurology out-patients have symptoms that are considered by the assessing neurologist as unexplained by 'organic disease'. There has however been much controversy about how often such patients subsequently develop a disease diagnosis that, with hindsight, would have explained the symptoms. We aimed to determine in a large sample of new neurology out-patients: (i) what proportion are assessed as having symptoms unexplained by disease and the diagnoses given to them; and (ii) how often a neurological disorder emerged which, with hindsight, explained the original symptoms. We carried out a prospective cohort study of patients referred from primary care to National Health Service neurology clinics in Scotland, UK. Measures were: (i) the proportion of patients with symptoms rated by the assessing neurologist as 'not at all' or only 'somewhat explained' by 'organic disease' and the neurological diagnoses recorded at initial assessment; and (ii) the frequency of unexpected new diagnoses made over the following 18 months (according to the primary-care physician). One thousand four hundred and forty-four patients (30{\%} of all new patients) were rated as having symptoms 'not at all' or only 'somewhat explained' by 'organic disease'. The most common categories of diagnosis were: (i) organic neurological disease but with symptoms unexplained by it (26{\%}); (ii) headache disorders (26{\%}); and (iii) conversion symptoms (motor, sensory or non-epileptic attacks) (18{\%}). At follow-up only 4 out of 1030 patients (0.4{\%}) had acquired an organic disease diagnosis that was unexpected at initial assessment and plausibly the cause of the patients' original symptoms. Eight patients had died at follow-up; five of whom had initial diagnoses of non-epileptic attacks. Seven other types of diagnostic change with very different implications to a 'missed diagnosis' were found and a new classification of diagnostic revision is presented. One-third of new neurology out-patients are assessed as having symptoms 'unexplained by organic disease'. A new diagnosis, which with hindsight explained the original symptoms, rarely became apparent to the patient's primary care doctor in the 18 months following the initial hospital consultation.",
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    author = "Jon Stone and A. Carson and R. Duncan and R. Coleman and R. Roberts and C. Warlow and C. Hibberd and G. Murray and R. Cull and A. Pelosi and J. Cavanagh and K. Matthews and R. Goldbeck and R. Smyth and J. Walker and MacMahon, {A. D.} and M. Sharpe",
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    Stone, J, Carson, A, Duncan, R, Coleman, R, Roberts, R, Warlow, C, Hibberd, C, Murray, G, Cull, R, Pelosi, A, Cavanagh, J, Matthews, K, Goldbeck, R, Smyth, R, Walker, J, MacMahon, AD & Sharpe, M 2009, 'Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up?', Brain Research, vol. 132, pp. 2878-2888. https://doi.org/10.1093/brain/awp220

    Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up? / Stone, Jon; Carson, A.; Duncan, R.; Coleman, R.; Roberts, R.; Warlow, C.; Hibberd, C.; Murray, G.; Cull, R.; Pelosi, A.; Cavanagh, J.; Matthews, K.; Goldbeck, R.; Smyth, R.; Walker, J.; MacMahon, A. D.; Sharpe, M.

    In: Brain Research, Vol. 132, 2009, p. 2878-2888.

    Research output: Contribution to journalArticle

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    T1 - Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up?

    AU - Stone, Jon

    AU - Carson, A.

    AU - Duncan, R.

    AU - Coleman, R.

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    AU - Hibberd, C.

    AU - Murray, G.

    AU - Cull, R.

    AU - Pelosi, A.

    AU - Cavanagh, J.

    AU - Matthews, K.

    AU - Goldbeck, R.

    AU - Smyth, R.

    AU - Walker, J.

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    N2 - It has been previously reported that a substantial proportion of newly referred neurology out-patients have symptoms that are considered by the assessing neurologist as unexplained by 'organic disease'. There has however been much controversy about how often such patients subsequently develop a disease diagnosis that, with hindsight, would have explained the symptoms. We aimed to determine in a large sample of new neurology out-patients: (i) what proportion are assessed as having symptoms unexplained by disease and the diagnoses given to them; and (ii) how often a neurological disorder emerged which, with hindsight, explained the original symptoms. We carried out a prospective cohort study of patients referred from primary care to National Health Service neurology clinics in Scotland, UK. Measures were: (i) the proportion of patients with symptoms rated by the assessing neurologist as 'not at all' or only 'somewhat explained' by 'organic disease' and the neurological diagnoses recorded at initial assessment; and (ii) the frequency of unexpected new diagnoses made over the following 18 months (according to the primary-care physician). One thousand four hundred and forty-four patients (30% of all new patients) were rated as having symptoms 'not at all' or only 'somewhat explained' by 'organic disease'. The most common categories of diagnosis were: (i) organic neurological disease but with symptoms unexplained by it (26%); (ii) headache disorders (26%); and (iii) conversion symptoms (motor, sensory or non-epileptic attacks) (18%). At follow-up only 4 out of 1030 patients (0.4%) had acquired an organic disease diagnosis that was unexpected at initial assessment and plausibly the cause of the patients' original symptoms. Eight patients had died at follow-up; five of whom had initial diagnoses of non-epileptic attacks. Seven other types of diagnostic change with very different implications to a 'missed diagnosis' were found and a new classification of diagnostic revision is presented. One-third of new neurology out-patients are assessed as having symptoms 'unexplained by organic disease'. A new diagnosis, which with hindsight explained the original symptoms, rarely became apparent to the patient's primary care doctor in the 18 months following the initial hospital consultation.

    AB - It has been previously reported that a substantial proportion of newly referred neurology out-patients have symptoms that are considered by the assessing neurologist as unexplained by 'organic disease'. There has however been much controversy about how often such patients subsequently develop a disease diagnosis that, with hindsight, would have explained the symptoms. We aimed to determine in a large sample of new neurology out-patients: (i) what proportion are assessed as having symptoms unexplained by disease and the diagnoses given to them; and (ii) how often a neurological disorder emerged which, with hindsight, explained the original symptoms. We carried out a prospective cohort study of patients referred from primary care to National Health Service neurology clinics in Scotland, UK. Measures were: (i) the proportion of patients with symptoms rated by the assessing neurologist as 'not at all' or only 'somewhat explained' by 'organic disease' and the neurological diagnoses recorded at initial assessment; and (ii) the frequency of unexpected new diagnoses made over the following 18 months (according to the primary-care physician). One thousand four hundred and forty-four patients (30% of all new patients) were rated as having symptoms 'not at all' or only 'somewhat explained' by 'organic disease'. The most common categories of diagnosis were: (i) organic neurological disease but with symptoms unexplained by it (26%); (ii) headache disorders (26%); and (iii) conversion symptoms (motor, sensory or non-epileptic attacks) (18%). At follow-up only 4 out of 1030 patients (0.4%) had acquired an organic disease diagnosis that was unexpected at initial assessment and plausibly the cause of the patients' original symptoms. Eight patients had died at follow-up; five of whom had initial diagnoses of non-epileptic attacks. Seven other types of diagnostic change with very different implications to a 'missed diagnosis' were found and a new classification of diagnostic revision is presented. One-third of new neurology out-patients are assessed as having symptoms 'unexplained by organic disease'. A new diagnosis, which with hindsight explained the original symptoms, rarely became apparent to the patient's primary care doctor in the 18 months following the initial hospital consultation.

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    KW - medically unexplained symptoms

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    KW - WIDESPREAD BODY PAIN

    KW - UNITED-KINGDOM

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    KW - OUTPATIENTS

    KW - PREVALENCE

    KW - MORTALITY

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    KW - CARE

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