Referrals to neurologists for headaches not due to...

Jourlial of Neturology, Neurosurgery, and Psychiatry 1981 ;44:1061-1067

Referrals to neurologists for headaches not due tostructural diseaseRAY FITZPATRICK, ANTHONY HOPKINS

From the Social Research Unit, Bedford College, London and the Department of Neurological Sciences,St Bartholomew's Hospital, Londont

SUMMARY Patients attending neurological clinics with headaches that proved not to be due toclearly defined structural disease were interviewed before and after the consultation and approxi-mately one year later. Their expectations of the consultation were ill-formed. About two-thirds ofthe patients had fears about organic disease although few had psychiatric morbidity. These fearswere generally dispelled by the consultation. About one-third of the patients were dissatisfied by theconsultation, nearly all by what the neurologist said rather than by what technical procedures he didor did not undertake. Women with a long history of migraine, with significant psychiatric morbiditv,and who had initiated the referral themselves were particularly likely to be dissatisfied. Althoughmost patients were still having headaches one year later, visits to the general practitioner for thissymptom had greatly declined.

Headache is one of the commonest ailments sufferedby Man in the developed countries. Most episodes,of course, are either ignored or self treated withsimple analgesics. Wadsworth1 and Banks et a12found, in their surveys of symptoms in the com-munity, that headache was the symptom most oftendealt with by lay medication. However, some findtheir headaches so frequent, or so severe, at least bytheir own terms of reference, that they seek medicaladvice. From the second national study on morbid-ity in general practice,3 it can be calculated that thepatient consulting rate for all types of headache was16 per thousand per year.4 As a comparison, thepatient consulting rate for epilepsy, anothercommon neurological disturbance, was only 2 9 perthousand per year.Some patients consulting their general prac-

titioners are referred to a neurologist or to a hospitalphysician for specialist consultation and advice,although clinical experience informs the professionthat the chances of finding a clearly defined"explanation" for the headaches are slim. Since theSecond World War, neurological services havebecome developed in Europe and in the United

Address for reprint requests: Dr Anthony Hopkins, Depart-ment of Neurological Sciences, St Bartholomew's Hospital,London ECIA 7BE, UK.

Received 1 April 1981 and in revised form 10 August 1981Accepted 1 September 1981

States. Neurologists are available in larger numbers,and so, in common with general practitioners, spenda greater proportion of their time advising aboutsymptoms that often do not appear to have a basis inclearly defined abnormal physiology or pathology.It has been calculated that in the United Kingdomthere are twenty times more referrals to hospitalsfor headache and migraine than for multiplesclerosis.4

Appreciation of these figures, of the apparentlyincreasing expectations of satisfaction of symptomsnot due to definable organic disease, and doubtsabout the worth of neurological consultation in thesecircumstances have led us to evaluate the role ofreferral to neurologists in the management ofheadaches. This paper reports the characteristics ofpatients referred for headaches, the typical forms ofmanagement, and the outcomes of such referral.

Methods

The 42 neurologists holding consultant contracts inneurology in the North East and North West ThamesHealth Regions were approached by one of us and theaims of the project explained. Twenty-four neurologistsagreed to co-operate, 18 of whom actually provided uswith patients for the study sample from their outpatientclinics.Our criteria for inclusion in the study were any patient

who (a) was a new referral for headache as a predominantsymptom rather than a "follow-up", (b) was aged 16 yr

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or over, (c) was not suspected, after investigation, ofhaving a serious space occupying lesion. Liaison with theclerical staff of I1 hospitals informed us of the appoint-ment time and date of 111 patients who met our first twocriteria; two were excluded because the neurologistsuspected an expanding lesion, although we subsequentlylearned that in neither case did investigations reveal thesuspected lesion. Thus 109 patients were interviewedbriefly at the hospital before seeing the neurologist. Wesuccessfully contacted 102 patients at home approxi-mately three weeks later, of whom seven refused toparticipate in a second interview. Thus second (main)interviews were completed with 95 (87 %) of the original109 patients. The patients whom we were unable tointerview on the second occasion did not differ from themain sample in any item of information that we couldobtain about them. Sixty-eight per cent of the samplewere obtained from referrals to London Teaching Hospi-tals and 32% from London and provincial generalhospitals. In the first interview we obtained informationfrom the patients about symptoms, worries about symp-toms and their expectations of the neurologist. In thesecond interview we obtained a fuller account of theirhistory of headaches, prior experience of medical andnon-medical treatment, circumstances of referral, andsatisfaction with their hospital visit. We used a non-schedule standardised interview which was tape-recordedand analysed with rating scales developed from a pilotstudy. In the second interview we also obtained astandardised account of the patient's recent psychiatricstate by means of the Present State Examination (PSE),an instrument developed by Wing et a15 which hashigh reliability in eliciting and recording psychiatricsymptoms. The significance of all relationships betweenvariables reported in the results was measured by meansof the chi-square test.

Results

DEMOGRAPHIC AND SOCIAL CHARACTERISTICSOF THE SAMPLEFigure I shows the age and sex distribution of thesample compared with that of England and Wales.

Fitzpatrick, Hopkins

As with other studies of headache sufferers, themajority (69%) were female, most of them in theyounger age groups.The social class background of the sample (using

the Hope-Goldthorpe Scale6 is shown in fig 2. Thereis an excess of patients from social groupings 2 and3. This excess of middle-class patients is even moresalient if we consider only those in the sample whowere diagnosed as migraine, 47% (27/58) of whomwere of social group 2 and 3, more than twice asmany as expected from the social class distributionof the country as a whole.

25

20

15

10

Social class (Hope-G6ldthorpeclassification

* Number of patients in sampleNurrbers expected from distribution

L of social classes in England and W2lesFig 2 Distribution of social class ofpatients referredfor headaches.f

CLINICAL CHARACTERISTICSFigure 3 shows the diagnosis made by the neurol-ogists, and the presence or absence of three factors-unilaterality of headaches, sickness and aura.Although the neurologists made the diagnosis ofmigraine in 58 patients, fig 3 indicates that this mayhave been ill-founded in some cases. Only 21patients suffered classical migraine as defined bythe Ad Hoc Committee on Classification ofHeadaches.7

25-

20

15m

5

16-29 30-44 45-64 65+ 16-29 30-44 45-64 65+Males Female

Numbers of patients in sample

Numbers expected from distributionof ages and sex in England and Wales

Fig 1 Distribution of age and sex ofpatients referredfor headaches.

Migrane Tension Migrcine Migraneousheadache plus tension neuralgia

58pts 35pts 6pts 3pts24. Miscellaneous

20 diagnosis16

1248LUrilateralheadache Iv To o * o oSickness *O a 0 ;3Aura LL- Ox 0'

. 00 ( '60 o60 .

I

1 > LI

Fig 3 Diagnosis made by hospital doctors inneurological clinics in relation to the presence or absenceof certain symptoms-unilaterality ofheadache, nauseaor vomiting, a specific neurological aura.


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Referrals for headaches

Figure 4 shows the reported frequency andtypical duration of headaches suffered by thesample, compared with those found by Waters8 inhis survey of headache in the community. Thosepatients referred have headaches that were bothmore frequent and longer lasting. Forty per cent ofour sample were suffering from headaches twiceweekly or more frequently compared to only 5 % inthe community survey. Thirteen of the 109 patientsin the sample reported headaches that were con-stantly present. Thirty per cent had suffered head-aches for more than ten years before referral, 38%for between one and ten years, and 320% for lessthan one year.

70

60 f

50

20

4 4-12 12-24 24 : i >Durationof cttacks (hours) y

_ Number of patients 0 oa-) 5* in sample 0

a' a 0Number expected from 0V) Iheadache population Vin community Frequency of attacks

Fig 4 Duration andfrequency of headaches amongstpatients referred to hospital compared with headaches itthe community.8

PSYCHIATRIC MORBIDITYWe made judgements, on the basis of the interviews,of the degree of psychiatric morbidity suffered bythe sample. The results of these ratings are shownin table 1. All disorders were affective. The divisioninto depression or anxiety was made on the basis ofthe grouping of scores of the PSE. An alternativeclassification of the sample was made solely on thebasis of the PSE scores. Wing et a19 indicates thata score of 11 or more is found in 92% of psychiatricoutpatient and inpatient samples, but in only 130%in a general population. It can thus be used as acut-off score for an operational definition of psychi-atric "caseness" in the sense used by Brown andHarris,10 "a psychiatrist would not be surprised tosee her in an outpatient clinic". The interviewersratings of psychiatric morbidity and the PSE scorewere highly correlated-80 of the 95 patients wereplaced in the same position by both methods ofclassification. Only one patient was rated as showingsevere psychiatric morbidity by the interviewer butscored in the low/normal group in the PSE.

Table 1 Psychiatric morbidity in sample of referredpatients with headache

A. Interriewer's ratingNormal 60

Mild Moderate to SevereDepression 14 5Anxiety 4 1Depression and Anxiety 7 4B. Present State Examination ScoresScores0-5 616-10 19>11 15

For the purposes of analysis we grouped togetherthe 18 patients who were rated as extensivelypsychiatrically impaired by either method. Twelveof the 18 patients were currently receiving aprescription for at least one psychotropic drugprescribed by their general practitioner and onepatient was taking a psychotropic drug prescribedby a psychiatrist. However, in only six of these18 patients was any mention made in the referralletter to the patient's psychiatric state or of thecurrent psychotropic drug treatment.

There were no differences in psychiatric morbiditybetween men and women, and no age group in thissample was particularly likely to have psychiatricsymptoms. However, we did find that working classpatients (Hope-Goldthorpe classes 6, 7) were morelikely than middle class patients to have psychiatricsymptoms (p < 0-02) and were strongly representedin the group of 18 "cases" of psychiatric impairment(p < 001). Seven out of the 13 patients who hadcontinuous headaches were in this group of 18"cases". Those patients whom the neurologistdiagnosed as having tension headache or tensionheadache and migraine combined were rather morelikely to have psychiatric symptoms but the differ-ence was not significant.

ANXIETIES ABOUT ORGANIC DISEASENeurologists are aware that many patients present-ing in their clinics with headache are afraid thatthey may have some serious intracranial disease suchas a brain tumour or an impending cerebralhaemorrhage. Eighteen patients told us of peopleknown to them who had experienced headacheswhich were subsequently associated with suchconditions. We rated the presence of such fears fromour interviews with patients prior to their seeing theneurologist. We were concerned to assess fears aboutserious illness, rather than situational anxiety pro-duced by the hospital visit. We took the followingfactors into account to rate fear of disease-spontaneous mention of organic disease, indicationof "recognition" or "relief" from our questioning

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about it, emotional tone of voice in discussing ideasabout serious illness, evidence that worry aboutserious illness was disruptive to the person's life andinvolved thoughts that could not easily be controlledor dismissed, evidence of other people being awareof the concern, evidence of focus on particulardiseases and/or known cases of serious disease.We rated 65 (60 %) of the sample, with high

inter-rater reliability, as having fears about seriousillness and 44 (40%) as having insignificant or nofears.

Certain factors were correlated with worry aboutorganic illness. Patients having headaches more oftenthan twice a week were more worried (p < 001)than those whose headaches were less frequent;women were more likely to be worried than men(p < 0 05); those subsequently diagnosed as havingtension headaches were rather more likely to beworried than those with migraine as a diagnosis(p < 0-1); those with headaches for less than twoyears were rather more likely to be worried thanthose with headaches for longer periods (p < 0 2).We also considered the relationship between

psychiatric morbidity and fear about serious illness.Those rated as anxious or depressed were morelikely to be afraid of serious illness (p < 005).However, there was no relationship between theextent of psychiatric symptoms and the likelihoodof being afraid of serious illness. All five patientsrated as being anxious were worried about organicdisease, and 12 out of 19 of those rated as beingdepressed. However, the majority (57%) of thosewhom we rated as afraid of serious illness did nothave psychiatric symptoms. Clearly such concernsdo not necessarily arise from psychiatric morbidity.

General practitioners did not recognise worriesabout organic disease, or, if they did, they did notthink this worth spelling out in the referral letter. Ofthe 65 patients that we rated as being worried aboutorganic illness, mention was made of patients' fearsor an explicit request made for help in reassuringthe patient in only 11 of the letters.

MANAGEMENT AT HOSPITAL

Sixty-three of the sample of 109 were seen by a con-sultant, and 46 by a junior doctor. In 47 cases thehospital doctor undertook investigations, which areshown in table 2. Six of the 47 were investigated forproblems unrelated to the presenting headache. Themajority (62) were not investigated in any way.Patients were somewhat less likely to undergoinvestigations if they were seen by a consultant(38 %) than if they were seen by a junior doctor(48 %). Similarly, if we only consider the cases thatwere investigated, consultants usually chose a skullradiograph as a sole investigation-571% of their


Table 2 Number of investigations initiated by theneurologist (some patients received more than one test)

(For headache unless otherwise stated)Skull radiograph 30EEG 13Blood count 8ECG and radiograph for hypertension 2Referral to eye department for unusual eye-signs 2Liver function test IThyroid function test I

investigations-whereas only 24 %of junior doctors'investigations comprised a skull radiograph alone.They more often arranged more complex or multipleinvestigations.At least 27 different proprietary drugs were

prescribed by the hospital doctors for the sample.The types of drugs are shown in table 3. Forty percent (14/35) of those diagnosed as tension headacheand 16% (9/58) of those diagnosed as migraine werenot prescribed any medication. Forty-eight of 109patients were seen at one or more follow-upconsultations.

Table 3 Types of medication prescribed by hospitaldoctors for 93 patients with migraine or tensionheadache

Migraine Tension headache(58 patients) (35 patients)

Prophylactic medication(pizotifen, clonidine,propranolol) 24 0

Ergotamine tartrate 16 0Anti-emetic 14 0Analgesics 13 2Benzodiazepines 2 8Antidepressants 5 9No medication prescribed 9 (16%) 14 (40%)(27 different drugs prescribed)

PATIENT SATISFACTIONWe rated how satisfied patients were with their visitto the neurological clinic on the basis of their viewsexpressed in the main home interview. Twenty-fiveper cent (24/95) of patients were rated as dissatisfiedwith the medical aspects of their visit to the hospital.The most commonly cited grounds for dissatisfaction(12/24) was that the doctor had been too superficialor routine in questioning them about aspects of theirhistories that they considered relevant. Six out ofthe 24 focused their critical comments on receivingphysical examinations that they considered toocursory, and seven patients expressed dissatisfactionmainly in terms of inadequate investigations (onepatient expressed equal dissatisfaction on twogrounds).


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Demographic and social variables such as age,sex, social class, education and marital status werenot significantly related to satisfaction, nor were thefollowing variables related to patient management-whether or not the patient was investigated, whetheror not a follow-up visit was arranged, whether or notthe patient was seen by a consultant rather than bya doctor in training, whether or not the referral wasto a teaching hospital.There were, however, certain features clearly

associated with patient dissatisfaction. Those witha history of headaches for more than one year weremuch more likely to be dissatisfied than those withshorter histories (p < 0 01). Patients with migrainewere more likely to be dissatisfied than those withtension headaches (p < 0 02). Patients with sig-nificant psychiatric symptoms were also more dis-satisfied (p < 0 02).At the first interview before the patients had seen

the neurologist, we attempted to ascertain thepatients' views of their problems. Twenty-threepatients clearly defined their problem in terms ofmigraine. The remainder of the sample varied intheir degree of uncertainty and lack of clarity regard-ing their illness. The former group-those clearlydefining their problem as migraine-were muchmore likely (p < 0 001) to be the respondents whomwe were later to rate as dissatisfied with the con-tribution made by the hospital doctors. It is alsointeresting that these were often the patients whohad made a specific request for specialist referral(p < 0 05).We separately rated patients' satisfaction with

information received during their hospital visits-for example about the implications of the diagnosisand the future. Twenty-seven per cent were dis-satisfied about this aspect of their care. The mostcommonly expressed criticisms by thisgroup were thatthey were not told what their diagnosis meant, and thatthere was no discussion of the causes of their dis-order or of actions that the patient might take toavoid or alleviate episodes of headache.

Thirty-four patients were rated as dissatisfied onone or other of the two aspects of their visit, butonly 16 were dissatisfied on both aspects so we donot feel we are reporting a response set. Moreover,those who expressed critical comments regardingthe hospital visit were not found to have been anymore critical than others about their generalpractitioner.

REASSURANCEOf the 65 patients who expressed fears about seriousillness, 39 (60%) were rated as completely reassuredafter the consultation. Eighteen (28%) were partlyreassured but expressed some remaining concerns.

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Eight (12%) of the sample were rated as whollyunreassured about concerns of serious illness. Noneof our measures of patient characteristics or of formof medical management seemed to be associated withfailure of reassurance. However, those patients whowere rated as critical of information received at thehospital were much more likely (p < 0 01) to havefelt less than completely reassured.

LONG-TERM OUTCOMEWe attempted to assess the long-term outcome forthis sample of referrals. We succeeded in re-inter-viewing 74 of the sample one year after their hospitalvisit. A fuller analysis of this follow-up will bereported elsewhere but one indication of outcome,which supports the results of a study by Groveet all' on referrals for tension headache, is thatthere was a considerable reduction in numbers ofconsultations with the general practitioner forheadache in the year after referral (fig 5). Forty-

Fig 5 Effect of neurological consultation on generalpractitioner consultations for headache.

seven out of the 74 patients did not consult theirgeneral practitioner for headache in the year afterreferral and a further 14 patients visited the doctorless often than they had prior to referral. However,only 17 patients reported that their headaches haddisappeared in the year after the hospital visit. Thusa substantial number of patients reduced the numberof visits to their doctor despite continuing toexperience headaches. The possibility exists thatthis was due to despair with orthodox medicine andthat patients resorted to faith healing, osteopathy,hypnotism or herbalism. However, only sevenpatients reported seeking such help, suggesting thatdisillusionment with orthodox medicine was nota common response.


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Discussion

With increasing national wealth, many peopleexpect to be free from all symptoms even if suchsymptoms do not have any clearly defined basis instructural disease. Consultants in all specialities seesuch patients-the gastroenterologists see patientswith the irritable bowel syndrome and chronicconstipation, the cardiologists see those with non-descript chest pain, and the psychiatrists see thosewho are simply unhappy. The neurologist's equiv-alent is those with headaches, and this paper focuseson one particular aspect of management of suchpatients-a specialist consultation and its outcome.As the management of symptoms, rather than themanagement of diseases, is proving to be anincreasing part of a consultant's work, it is importantto analyse the way in which this work is done, andits success.A distinction has often been made in medical

sociology between "disease" which is a descriptionof a pathological diagnosis within the framework ofpresent medical knowledge and "illness" which isthe layman's perspective on his problem. Thisdistinction draws our attention to areas of potentialcontrast or indeed conflict between patients anddoctors. It might be predicted that the managementby the neurologist of headache not due to structuraldisease would be an instance of such conflict and itwas from this perspective that we set out in this studyto explore the needs and expectations that patientsthemselves expressed. At the preliminary interviewwe attempted to assess the expectations of thepatients of the neurologist. However, with fewexceptions we found the patients unfamiliar anduncomfortable with the task of expressing theirneeds at the time they come to hospital, insisting,for example, that it was "a matter for the doctor todecide". In any case, few had any substantial notionof the role of the neurologist, and indeed only 46%knew the kind of specialist that they were about tosee. Only after the experience did ideas emerge andclarify-a phenomenon also reported of the illnessbehaviour of general practice patients.12 Neitherthose whom we rated as initially clear about thenature of their headaches, nor the group who hadthemselves requested their referral had any moreprecise or explicitly formulated expectations thanothers. Nevertheless, it was possible to delineatemore indirectly a number of analytically separateneeds that the neurological referral could be said tobe fulfilling with varying degrees of success.

First, nearly two-thirds of the sample were foundto have significant fears about serious illness-a problem of which neurologists are well aware.This level of "nosophobia" is high but is of the


same order as reported by Mayou13 in outpatientsclinics in cardiology and venereology. We noteda statistical association with our ratings of anxietyand depression, but found that many patientsapparently psychologically "normal" also had suchfears. The PSE is based on hospital psychiatric"caseness". As Williams et al'4 have pointed out,methods of conceptualising and measuring forms ofmorbidity more relevant to the distressed person inthe community must be developed.The majority of patients were reassured, and such

reassurance was gained through the experience ofseeing the specialist per se, rather than through anyparticular procedure he carried out. This, and the"vanishingly small chance that a person withheadache and normal findings on neurologicalexamination will have anything discovered by CTbrain scan, or skull roentgenogram"'5 should besufficient to allow neurologists to continue to relyupon a careful history and physical examination.Our finding that patients who were rated as un-reassured also felt that they had not learned enoughfrom the consultation about the headaches shouldalso encourage neurologists to spend more time onexplanation and less on arranging investigations.16The communication of diagnosis and of the

implications for the individual was clearly a secondimportant function of the hospital visit and one inregard to which a substantial number of patientswere critical. Such criticism is not surprising whenneurologists' own conceptual model of tensionheadache and migraine is largely speculative.Figure 3 indicates the idiosyncratic use of variablesusually considered to be important in the diagnosisof migraine. Factor analysis of clinical variables inpatients prone to headaches has also failed to revealclearly defined syndromes.17 Given the imprecisestate of medical knowledge in this field, doctorscould well explicitly admit to their patients that onlya limited amount of personalised advice can usefullybe offered. Greater use could perhaps be made ofinstructional pamphlets.18

This comment is particularly relevant to that groupof patients whom we found most critical of theirhospital visit whom, without any implication ofdisparagement, we may follow McIntyre'9 in calling"expert" migraine sufferers. Apparent in many oftheir reflections on the hospital visit was an under-lying theme based on their long-term experience-that migraine constitutes a complex combination oforganic and psycho-social factors that require to betreated properly by an investigation in depth of anindividual's unique medical and social biography.This perspective clearly clashes with that of thedoctor, who, in terms of a standard agenda ofdiagnosis and treatment of migraine, may gain little


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from such an exhaustive approach to individualhistory. In this sense, there is an immense potentialfor conflict between the perspective of "illness" heldby such patients, and the doctors concerned with"disease". Inspection of our data and of the variablesrelated to dissatisfaction with the consultation canbe used to construct a paradigm of the dissatisfiedpatient-an anxious or depressed migraine suffererwith a history longer than one year, who knows afair amount about the illness and who herself hasinitiated referral. From personal experience, it isjust this group of patients who seek referral tospecial Migraine Clinics. Henryk-Gutt and LinfordRees20 have already demonstrated differences inscores on scales, designed to assess personality and"hostility" between those attending a MigraineClinic, and migraine sufferers in general. In order tojustify the establishment of such clinics, the outcomeof referrals to them should be studied.One "latent" function of specialist referral which

we intend to explore further is the reduction of thesubsequent "burden" on the general practitionerthat is clearly indicated by these results and those ofGrove et al.1"

Finally, we draw attention to the social dis-tribution of usage of neurological referral. We foundthat amongst migraine sufferers middle class patientswere over-represented; this has also been reportedby Waters for attendances in general practice.21Conversely, although under-represented in oursample, working class patients were more likely topresent with headache as part of a wider clinicalhistory of psychiatric symptoms, in the managementof which the neurologist would seem to have aminimal role. Usage of medical services is oftendiscussed in terms of under and over utilisation. Ourresults indicate that research should also includeappropriate utilisation. Research of this natureindicates above all that discussion of rational andeffective use of specialist resources will have to cometo terms with fundamental issues of "need", "want",and "demand".22 The first step of such a discussionmust be a recognition of the complexity andmultiplicity of needs and their origins.

We thank Olivia Harvard Watts for conductingmany of the interviews, Professor George Brown foradvice and encouragement, Dr Elaine Murphy fortraining in the use of the PSE, and the patients anddoctors for allowing us to interview them.

This work was supported by a grant from theDepartment of Health and Social Security.

References

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2 Banks MH, Beresford SA, Morrell DC, Waller JJ,Watkins CJ. Factors influencing the demand forprimary medical care in women aged 20-44 years:a preliminary report. Int J Epidemiol 1976;4:189-95.

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12 Stimson G, Webb B. Going to see the doctor. London:Routledge and Kegan Paul, 1975.

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18 Editorial. Pamphlets for patients. Postgrad Med 1974;56:220.

19 McIntyre S, Oldman D. Coping with migraine. In:Davis A, Horobin G, eds. Medical Encounters.London: Croom Helm, 1977.

20 Henryk-Gutt R, Linford-Rees W. Psychological aspectsof migraine. J Psychosomat Res 1973 ;17:141-53.

21 Waters WE. Epidemiology of migraine. In: Pearce J,ed. Modern topics in Migraine. London: Heinemann,1975.

22 Jeffers JR, Bognanno MF, Bartlett JC. On the demandversus the need for medical services and the conceptof 'shortage'. Amer JPubl Health 1971 ;61:46-63.

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