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I JOURNAL OF 1.1A'ROSY Volume 66, Number 1 Printed in the U.S.A. (ISSN 0148-916X) INTERNATIONAL JOURNAL OF LEPROSY And Other Mycobacterial Diseases VOLUME 66, NUMBER 1 ^ MARCH 1998 Delay in Presentation and Start of Treatment in Leprosy Patients: a Case-Control Study of Disabled and Non-disabled Patients in Three Different Settings in Ethicpia 1 Wehib Bekri, Shibru Gebre. Asrat Mengiste, Paul R. Saunderson, and Sahilu Zewge' Leprosy is a disease of the skin and pe- ripheral nerves which can cause severe dis- ability and disfigurement, leading to major social and economic problems for those af- fected by it. The damage to peripheral nerves often can be prevented or reversed in patients presenting early, but a significant number of cases already have irreversible nerve damage when they first come into contact with the health services. Thus, an important task in the prevention of disabil- ity (POD) is to determine the reasons why people may present late to the health ser- vices and then to design various interven- tions aimed at promoting early reporting and speedy diagnosis. If patients can be di- agnosed at an earlier stage, it is likely that a significant amount of nerve damage could be prevented, more than could be prevented by any other intervention at a later stage (`'). ' Received for publication on 3 September 1997. Accepted for publication in revised form on 19 No- vember 1997. = W. Bekri, M.D., Bisidimo Hospital, P.O. Box 22, Bisidimo, Harm-, Ethiopia. S. Gebre, M.D.; A. Men- giste, M.D.; P. R. Saunderson, M.R.C.P.; S. Zewge, ALERT, P.O. Box 165, Addis Ababa, Ethiopia. Reprint requests to Dr. Paul Saunderson. In comparing different programs through- out the world, the rates of disability in new cases are important indicators of the effec- tiveness of case finding. Within Ethiopia, rates vary quite widely; for example, the proportion of new cases with grade 2 dis- ability may be below 10% or above 20%. Wrong belief's about the dis e ase, low awareness of modern treatment, stigma, and the influence of traditional healers or com- munity leaders may each play an important role in the late reporting of new cases. These are complex factors and interact with each other in complex ways, but further knowledge of the importance of these and similar issues will be of help in improving health education activities and materials. Few studies of the knowledge and atti- tudes of leprosy patients in Ethiopia have been done. Recently, however, a study car- ried out in Shoa looked into this issue (As- sefa, Nash, Tefera; unpublished data, 1996). It showed that modern health service cover- age and utilization in the country are at low levels (below 50%) and that traditional be- liefs and practices are still widespread. They also found that patients may attend a general clinic, but then experience a delay I 1

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Page 1: OUA O .AOSY l br I rntd n th IEAIOA OUA O EOSYila.ilsl.br/pdfs/v66n1a01.pdf(ISS 0486 IEAIOA OUA O EOSY And Othr Mbtrl OUME UME ^ MAC 199 l n rnttn nd Strt f rtnt n pr tnt C-Cntrl Std

IJOURNAL OF 1.1A'ROSY Volume 66, Number 1

Printed in the U.S.A.(ISSN 0148-916X)

INTERNATIONALJOURNAL OF LEPROSY

And Other Mycobacterial Diseases

VOLUME 66, NUMBER 1^

MARCH 1998

Delay in Presentation and Start of Treatment inLeprosy Patients: a Case-Control Study of

Disabled and Non-disabled Patients inThree Different Settings in Ethicpia 1

Wehib Bekri, Shibru Gebre. Asrat Mengiste, Paul R. Saunderson, andSahilu Zewge'

Leprosy is a disease of the skin and pe-ripheral nerves which can cause severe dis-ability and disfigurement, leading to majorsocial and economic problems for those af-fected by it. The damage to peripheralnerves often can be prevented or reversed inpatients presenting early, but a significantnumber of cases already have irreversiblenerve damage when they first come intocontact with the health services. Thus, animportant task in the prevention of disabil-ity (POD) is to determine the reasons whypeople may present late to the health ser-vices and then to design various interven-tions aimed at promoting early reportingand speedy diagnosis. If patients can be di-agnosed at an earlier stage, it is likely that asignificant amount of nerve damage couldbe prevented, more than could be preventedby any other intervention at a later stage (`').

' Received for publication on 3 September 1997.Accepted for publication in revised form on 19 No-vember 1997.

= W. Bekri, M.D., Bisidimo Hospital, P.O. Box 22,Bisidimo, Harm-, Ethiopia. S. Gebre, M.D.; A. Men-giste, M.D.; P. R. Saunderson, M.R.C.P.; S. Zewge,ALERT, P.O. Box 165, Addis Ababa, Ethiopia.

Reprint requests to Dr. Paul Saunderson.

In comparing different programs through-out the world, the rates of disability in newcases are important indicators of the effec-tiveness of case finding. Within Ethiopia,rates vary quite widely; for example, theproportion of new cases with grade 2 dis-ability may be below 10% or above 20%.

Wrong belief's about the dis ease, lowawareness of modern treatment, stigma, andthe influence of traditional healers or com-munity leaders may each play an importantrole in the late reporting of new cases.These are complex factors and interact witheach other in complex ways, but furtherknowledge of the importance of these andsimilar issues will be of help in improvinghealth education activities and materials.

Few studies of the knowledge and atti-tudes of leprosy patients in Ethiopia havebeen done. Recently, however, a study car-ried out in Shoa looked into this issue (As-sefa, Nash, Tefera; unpublished data, 1996).It showed that modern health service cover-age and utilization in the country are at lowlevels (below 50%) and that traditional be-liefs and practices are still widespread.They also found that patients may attend ageneral clinic, but then experience a delay

I

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2^ International Journal of Leprosy^ 1998

Delay "A"

Delay "B"^Delay "C"

Firstclinic visit

Firstsymptom

Firstaction

Start oftreanneiit

Flo. I. The time line; total delay is denoted Delay —1'."

in being referred to a leprosy clinic. A pre-vious study in Shoa found a high degree ofstigma, without much evidence of outsideinfluence on traditional beliefs and prac-tices C).

MATERIALS AND METHODSThis case-control study compares three

areas within Ethiopia (Hararge, in thesoutheastern part of the country; West Shoa,an area immediately west of the capital,Addis Ababa, and the ALERT Hospital inAddis Ababa). Disability rates for the last10 years were reviewed. Patients attendingclinics were interviewed using a pretestedquestionnaire. Cases were patients diag-nosed between 1 January 1995 and the timeof the clinic visit who had a disability grade(DG) of 2 at the time of diagnosis; controlswere patients diagnosed during the sameperiod who had a DG of 0 at diagnosis.

A total of 273 patients were included inthe study; 105 cases and 168 controls fromthe three different areas were interviewed.One case gave such an extreme answer forthe timing of his disease (a total delay of 48years from first symptom to start of treat-ment) that he was excluded from the time-related analyses.

In Hararge, patients from 45 clinics wereinterviewed. In West Shoa 50 clinics werevisited. At ALERT, all new patients diag-nosed during the course of the study in theALERT outpatient department were exam-ined by one of the researchers and were en-tered into the study if they were either cases(DG 2) or controls (DG 0). Leprosy sus-pects who come to ALERT are a verymixed group, coming from all over thecountry, seeking a variety of other forms oftreatment.

Because of the fact that the ALERT pa-tients are a very heterogeneous group, whenthe areas are compared statistically only therural areas of Shoa and Hararge are com-pared. When cases and controls are com-

pared, however, all patients are analyzed.Because the data are not normally distrib-uted, the non parametric Kruskal-Wallismethod for comparing unpaired ranks wasused, calculated using the computer pro-gram Epi-Info v5.I.

Quantification of various types of delayThe basis for the quantification of the dif-

ferent types of delay was the time line,which was part of the patient questionnaire.This is a device enabling the interviewer todocument clearly the sequence and timingof the different events described by the in-terviewee. In this study, the timing of fourspecific events (as well as any other eventsmentioned by the patient) was noted (Fig.1). The different periods of delay were cal-culated in months for analysis.

The first symptom was noted accordingto the recall of the patient. The first actiondenotes the first act of health-seeking be-havior by the patient, whether attendance ata clinic or a traditional form of treatment; itdoes not include discussions with familyand friends or other activities, such as achange in work or dwelling, even if theseare caused by the development of the dis-ease.

The first clinic visit denotes a visit to agovernment or approved mission clinicwhere leprosy treatment may or may not beavailable; it does not include visits to pri-vate clinics, pharmacies or drug shops, al-though it was noted that these places mayoften correctly refer patients to the appro-priate clinic. The start of treatment denotesthe date of actually receiving, the first doseof multidrug therapy (MDT).

RESULTSDisability grades by area

The following rates of DG 2 in new caseshave been taken from the annual reports forthe last 7-10 years and averages have been

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66, 1^Bekri, et al.: Delays in Presentation and Treatment^3

TABLE 1. Sex, age, educational level and religion of cases and controls in the threesittilV areas.

Ilararge West Shoa ALEIZT

Cases(N = 52)

Contr .

(N = 104) % Cases(N = 3 -0)

Contr.(N = 36)

Cases(N^23) % Contr.

(N = 28) %

SexM 46 88 87 89 -2 73 27 75 17 74 18 64F 6 12 17 II 8 27 9 25 6 26 10 36

.4

Age0-14 0 0 3 3 0 0 8 22 0 0 0 0

15-29 9 17 33 32 15 50 18 50 14 61 17 6130-44 25 48 38 36 9 30 6 17 3 13 8 28>45 18 35 30 29 6 20 4 11 6 27 3 11

EducationLiterate 6 12 21 20 9 30 15 42 8 35 14 50Illiterate 46 88 82 80 21 70 21 58 15 65 14 50

ReligionChristian I 2 2 2 27 90 25 70 22 96 12 79Muslim 51 98 102 98 3 10 II 30 I 4 4 14Other 0 0 0 0 0 0 0 0 0 0 2 7

calculated: Hararge 6. 6%, ALERT 20.4%,and West Shoa 21.1%. Rates for DG 1 werenot compared because different methodolo-gies to test sensation are employed in thedifferent areas.

Description of sampled casesand controls

Table I describes the six study groups(cases and controls in the three areas). Itcan be seen that the most significant differ-ence is in religion, with Hararge beim!, apredominantly Muslim area and the otherareas largely Christian. The Hararge sampleis also less literate, older, and has a highermale: female ratio.

Within each area there are differences be-tween cases and controls: thus, cases tend

4 to be older than the controls (significant inall areas), less literate (in the ALERT sam-ple only: p <0.05) and Christian rather thanMuslim (in the ALERT and West Shoasamples only: p <0.05 and p <0.001, re-spectively).

Analysis of delayTable 2 shows the total delay and the

three components of delay experienced byboth cases and controls. The figures fromall three areas are pooled. There are highlysignificant differences in the delay at each

stage except the last, from clinic visit to thestart of MDT.

Table 3 gives the results of this compari-son for each area on its own. The medianvalues for each delay are shown to give aclearer picture than the mean, which is dis-torted by a few atypical values.

When the two rural areas (West Shoa andHararge) are compared, it appears that, forcases, the median total delay (T) is signifi-cantly greater in Shoa (36 months) than inHararge (24 months: p <0.01). For controls,the median total delay in West Shoa is alsogreater than in Hararge (13.5 versus 11months), but this difference is not signifi-cant.

Controls in West Shoa have a higher me-dian first component delay (A: betweenonset of symptoms and first action) thancontrols in Hararge (10 versus 5 months;p <0.005). The difference for cases (15months in West Shoa, 9.5 months inHararge) does not quite reach statistical sig-nificance.

Health service delays (misdiagnosis anddelays in referral)

Table 4 shows that delays due to failureto diagnose or to suspect leprosy within thehealth services are incurred by about 1 inevery 5 patients, for both cases and con-

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Delay.'Delay in months Significance of

differencebetween groups0 1-5 6-11 12-23 24-35 36+

TCases 0 1(1) 8 (8) 32 (31) 20(19) 43(41)Controls 41 (24) 38 (23) 45 (27) 23 (14) 21^(12) p <0.000001

ACases 3 (3) 31 (30) 13 (13) 24 (23) 16(15) 17(16)Controls 4 (2) 77 (46) 34 (20) 29 (17) 14 (8) 10 (7) p <0.001

BCases 37 (36) 13 (12) 21 (20) 18 (17) 7 (7) 8 (8)Controls 98 (58) 31 (19) 19(11) 12(8) 4 (2) 4 (2) p <0.000(11

CCases 61 (58) 22(21) 9 (9) 6 (6) 1^(1) 5(5)Controls 104 (62) 47 (29) 9 (5) 4 (2) 2(1) 2(1) NS''

T = Median total delay; A = delay from first symptom to first action; B = delay front first action to first clinicvisit; C = delay front first clinic visit to start of treatment.

'' NS = Not statistically significant.

trols. This is worrisome. One in every sixpatients takes longer than I month to act ona referral for leprosy treatment; this may bethe patient's own decision or it may relateto problems of access.

Case report. A 50-year-old woman firstnoticed an ulcer on her right foot in June

1991. She visited a nearby hospital after 3months and was given some injections. Al-though these did not help, she continued toattend the same hospital for 3 years. Whenthe ulcer became worse and she developedtypical skin patches of leprosy, she was di-agnosed as a leprosy patient and started on

TABLE 3. Median values (in months) for the total delay and components of delay forcases and controls by area.

4^ International Journal ()if Leprosy^ 1998

TABLE 2. Number of patients (%) experiencing delay among cases and controls fromall three areas; total delay and components of delay.

Delay Overall ALERT Hararge West Shoa

TCases 26 25 24 36Controls 12 18 11 13.5p Value <0.000001 NS'' <0.000001 <0.0001

ACases 12 12 9.5 15Controls 6 6 5 10p Value <0.001 NS <0.01 NS

BCases 6 10.5 6 0 (8.4)'Controls 0 0 0 (0.8)`p Value <0.00001 0.05 <0.0001 <0.01

CCases 0 (5.2)' 0 (5.6)' 0 (2.3)' I (10.0)`Controls 0 (23)` 0 (5.4)' (1.6)' I (2.1)`p Value NS NS NS NS

T = Median total delay; A = delay front first symptom to first action; B = delay front first action to first clinicvisit; C = delay from first clinic visit to start of treatment.

NS = Not statistically significant.In certain cases both median values are 0 and I but the distribution may he different; mean values are given

in parentheses.

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^ Clinic to treament

El3 First action to first clinic

Delay to first action

66, 1^Bekri, et al.: Delays in Presentation and 'Treatment^5

TAMA: 4.^Health service and referral delays for cases and controls of all areas.

Delay in months

0—I 2-5 % 6-11 % %

Delay indiagnosis

Cases 82 79 6 6 6 6 1() 9Controls 143 85 14 8 6 4 5 3

Delay inreferral

Cases 87 84 13 12 2 2Controls 141 84 21 13 4 2 2 I

treatment. The total delay was more than 5years.

Case report. A 22-year-old man experi-enced numbness of the hands and feet andnasal blockage. After I year he went to anearby hospital where he was advised to goto a leprosy clinic. However, he decided togo to a local healer who treated him formore than 1 year. After a delay of about 2years he went to a leprosy referral hospitaland was diagnosed. He was referred back toa peripheral clinic and then to another clinicbefore starting treatment, which added an-other 2 months to the delay.

Summary of delaysFigure 2 shows the components of delay

for cases and controls in each of the threeareas. Mean figures are used rather than themedian values since the latter will not give

the correct total delay. Taking all cases to-gether, the proportion of the total delay at-tributable to each component is as follows:delay until first action, 53% (controls 61%);delay between first action and first clinicvisit, 32% (controls 27%) and delay be-tween first clinic visit and start of treatment,15% (controls 12%).

Thus, disabled new cases have a signifi-cantly longer delay in presentation thanthose without disability. The total delayis longer (median 26 months versus 12months), and each component of the delay(except final delay between visiting a clinicand starting treatment) is also longer. Thefirst component of the delay, between onsetof symptoms and the first action, is the ma-jor contributor to the overall delay. It is alsoconcluded that leprosy patients, in general,present earlier in the Hararge area than in

Overall:^Cases

Cortrols

ALERT: Cases

Cortrols

West Shoa: Cases

Controls

Hararge: Cases

Controls

45400^5^10 15 20 25 30 35

Delay in months

FIG. 2. Components of delay for cases and controls in the three areas studied.

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6^ International Journal ofLeprosy^ 1998

TABLE 5. Presenting svmptoms in cases and controls, all areas combined.

Cases^

ControlsSymptoms^

105)^

(N= 168)

Skin: patches, nodules 58 55 139 82Sensory: pain, burning, dryness 21 19 11Damage: cracks, ulcers, weakness 25 24 11 7

West Shoa, and that it is a difference in thefirst component of delay that accounts formost of the overall difference.

Reasons for delay in reporting bypatients

In analyzing the data from the patientquestionnaire, very few items show a sig-nificant difference between cases and con-trols or, in other words, suggest reasons forthe delay in reporting. As mentioned earlier,cases tended to be older, less literate, andChristian. Gender was not associated withthe disability grade at diagnosis. Other fac-tors showing a difference between casesand controls are:

a) the presenting symptoms: Table 5shows the different presenting symptomsfor cases and controls. There is a signifi-cant, although clearly expected differencewith controls much more likely to presentwith skin symptoms rather than symptomsof damage (x= = 25.4, p <0.000005).

1)) which action was taken as the first ac-tion: Table 6 shows the different activitiesperformed first. Although traditional meth-ods are widely used, a significantly greaternumber of controls never used traditionalmethods (x 2 = 13.9, p <0.005).

Case report: A 30-year-old woman devel-oped numbness and ulcers on both feet inearly 1992. A year later she went to a localhealer and was advised to go to the nearbyleprosy clinic. However, she did not do thisbut went to another clinic where she gotsome injections. After more than 2 years,she went back to the same local healer fromwhom she had received the same advice.This time she went to the leprosy clinic andstarted treatment almost 4 years after herfirst symptoms.

c) distance from the clinic: The distancefrom the patient's home to the nearest clinicwas slightly less for controls than for cases(p = 0.011), but for both groups the median

value is within the range of I to 2 hours.d) other factors: A number of other fac-

tors were examined but no differences werenoted between cases and controls. Thesefactors included: 1) number of clinic visitsin the previous year for other complaints;45% of all patients had not attended a clinicin the previous year while 22% had at-tended more than twice, and 2) whether ornot the patient knew other leprosy patientsaround the home area; 51% of all patientsknew of a leprosy patient living nearby.This figure varied in the different areas, butnowhere was there a siwiificant differencebetween cases and controls (ALERT, 35%;West Shoa, 47%; Hararge, 58c/0).

e) knowledge and attitudes of patients:Various beliefs and attitudes were almostuniversal in this group of patients, takingcases and controls from all areas together:

Transmission. 84% believe that leprosy isinherited. Other possible causes mentionedare: had spirits/curses, sent by God, sexualcontact in the open air, infection/ contact(mentioned by only 6%).

Signs of leprosy. This question is con-founded by the translation of the word lep-rosy as an Amharic word meaning to cut ormutilate ( 5 ). Thus, 75% of all patients gaveloss of parts/deformities as the first sign ofleprosy. This was even true of many pa-tients who had given skin signs as the firstsymptoms that they had experienced them-selves.

Can leprosy be cured? This question isalso confounded by the confusion betweenbacteriological cure and reversal of the de-formities of leprosy. In this sample, only19% said they thought leprosy was curable.

Effect of health education. 8% of thislargely illiterate group had seen a posterabout leprosy, but those who had did not re-call having learned anything from it. Radiohad reached 10% in each area. In theHararge area several patients reported hear-ing that leprosy is curable, but in West Shoa

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66, I^Bekri, et al.: Delays in Presentation and Treatment^ 7

TABLE 6. First action of cases and controls, all areas combined.

Cases^ ControlsFirst action

(N= 105) (N= 168)

Clinic; never used traditional method 34 32 94 56lloly water 26 25 19 11

treatment 38 36 53 32Other 7 7

most patients could not recall any messagegiven by the program.

DISCUSSION

Previous studies ( 1 - ''. 7 ) have shown typi-cal delays in Ethiopia, India and Nepal ofaround 1.5 to 2.5 years, and we have founda median overall delay of 26 months in dis-abled new cases but a median delay of only12 months in those patients presentingwithout disability. Early case finding isknown to he the most important factor inpreventing disability from leprosy ("), andthis is strongly confirmed by this study.Some similar studies have been done inother chronic diseases in Africa, for exam-ple, tuberculosis ( 2 ), but the symptoms inthat case are more severe and make presen-tation inure pressing so that direct compari-son with leprosy is not possible.

We have shown that just over 50% of thedelay occurs before the patient takes anyaction, and this requires specific and tar-geted health education for the general pop-ulation. Disabled patients have a signifi-cantly longer delay before they take anyhealth-seeking action: perhaps they haveless knowledge or perhaps they have lessinitiative and are more fatalistic. The pa-tients from the two rural areas studied werealso very different in this respect, suggest-inL, that local attitudes and culture are im-portant factors. Former patients were agood source of advice for many patients,and this should he recognized and used inhealth promotion.

A further source of delay is the use ofsome form of traditional medicine, whichoverall accounted for just under one third ofthe delay. The ALERT patients had thelargest delay at this point, perhaps becausemany are coining from areas of the countrywith less leprosy control work. Again, dis-abled patients were more likely to incursuch a delay and to be delayed for a longer

period, suggesting that they have greaterfaith in these forms of treatment and per-haps less knowledge of, or belief in, mod-ern medicine. As can be seen most clearlyin Figure 2, controls in West Shoa have theshortest delay of all patients at this point.However, it seems to be a common practicein Shoa to seek traditional remedies evenafter being diagnosed with leprosy, whichmay interfere with compliance in somecases. Thus, 4.5% of patients in Shoa in-curred a delay of more than 6 months afterdiagnosis, as opposed to only 0.6% of pa-tients in Hararge.

Delay after attending a recognized clinicis a reason for concern. It accounts for over10% of the total delay. Surprisingly, pa-tients who already had a disability also in-curred greater delay in being referred forleprosy treatment within the health ser-vices, perhaps due to stigma among staff.

Previous studies have indicated some ofthe reasons why leprosy patients in Ethiopiaand elsewhere tend to be late in presenting,and the data presented here help to confirmthose findings. An additional aspect of thisstudy, which sheds more light on the rea-sons for late presentation, is the comparisonof two areas with very different rates of DG2 in new cases.

Stigma is a problem everywhere, but it isalso very variable and appears to be de-creasing in the Hararge area. There is de-creasing social isolation of leprosy patients,both for activities such as farming and trad-ing as well as social activities such as eatingtogether and chewiniy, "chat, - a commonleisure activity in the region. There is a lo-cal radio station and the leprosy hospital(Bisidimo) has had regular airtime to speakabout leprosy. The impression is also giventhat this is a rather homogeneous and close-knit community, and information is dis-cussed and disseminated by word of mouthmore readily than in other parts of Ethiopia.

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8^ international Journal of Leprosy^ 1998

In West Shoa, on the other hand, stigmaseems to remain very high and the patientsare much more isolated. The people appearto be more independent in thinking, andnew health-related information spreadsslowly and is not easily accepted within thecommunity. The Shoa area, in general, hasnumerous hot springs and these are widelyutilized as healing or "holy" waters, oftenlinked to nearby churches or monasteries.The Hararge area, in contrast, has very fewof these sites and bathing in this hot water ismuch less common as a traditional form oftreatment.

Stigma thus appears to vary between thetwo areas, but this is very difficult to mea-sure. It also seems not to be closely relatedto the underlying beliefs about leprosy,which were similar in both areas. Thus, re-ducing stigma is far more complex than im-parting knowledge and may relate to theway leprosy is managed by the health ser-vices and also the way in which patients arerehabilitated after cure (').

Many beliefs (such as that leprosy is in-herited, that it is not curable, that deformi-ties are the main sign of leprosy) areequally strong in the two areas and indicatethat, even in the face of these beliefs, pa-tients can present early for diagnosis. Veryfew patients had been consciously influ-enced by health education messages; thissuggests that health education campaignsmust he more sophisticated and more care-fully planned if they are to have any impact.The fact that many patients seek help fromtraditional practitioners suggests that theytoo should be involved in any program ofpublic education ( 4 ).

It is clear that as leprosy services are in-tegrated into the general health services theproper management of leprosy suspectsmust be addressed. Either clinic staff mustbe trained to make the diagnosis of leprosy,or they must have clear guidelines as towho must be referred and to whom. Be-cause of the problems with referral, itwould be ideal for diagnosis and the start oftreatment to be done at the rural clinic, withexamination by a specialist at a later stage.

SUMMARYThe delay incurred by leprosy patients

between the onset of symptoms and thestart of treatment has not been well charac-

terized. Because reducing this delay islikely to be the most productive of all activ-ities aimed at preventing disability, wecompared the various components of delayin disabled and nondisabled new leprosycases in a case-control study. Disabled pa-tients had a median overall delay of 26months, while nondisabled patients in-curred a delay of only 12 months. The totaldelay was divided into three components: a)the delay between the onset of symptomsand the first act of health-seeking behavior,which was significantly longer for disabledpatients; b) the delay between the first ac-tion and the first visit to a recognized clinic,which was also significantly longer for dis-abled patients; and c) the delay between thefirst clinic visit and the start of treatment,which was important in some cases: inthose patients whose delay was due to prob-lems within the health services, disabledpatients again had a significantly longer de-lay. The study also compared two rural ar-eas of Ethiopia, one with high and one withlow rates of disability in new cases. Highrates of disability (and greater delay instarting treatment) were thus associatedwith high levels of stigma, being from theChristian rather than the Muslim commu-nity, and the use of traditional medicine.There was, surprisingly, no association withknowledge about the transmission, symp-toms and curability of leprosy. Implicationsfor health promotion activities are dis-cussed.

RESUMENNo esti Bien caracterizado el retard() entre Ia apart-

ciOn de los sintomas en los pacicntcs con leprzt y el ini-cio del tratamicnto. Debido a quc Ia reducciOn en esteretardo es probablemente Ia mas productiva de las ac-tividades orientadas a prevenir las alteraciones dis-capacitztntes, nosotros comparamos los diferentes com-ponentes del retardo en nuevos casos de lepra con y sindiscapacidades. Los pacicntcs discapacitados tuvieronun retard() promedio de 26 meses, mientras que los pa-cientes sin discapacidad tuvieron un retard() de solo 12meses. El retardo total fue dividido en 3 componentes:(a) el retardo entre la apariciOn de los sintomas' y elprimer intent() de buscar ayuda tn6dica (significativa-nicntc mayor en los pacicntcs discapacitados); (b) elretard() entre la primera acciOn y la primera visita a unaclinica reconocida (tambien significativamente mayoren los pacicntcs incapacitados), y (c) el retardo entre Iaprimerzt visita a la clinica y el inicio del trzttamiento, locual fue importzmte en algunos casos: entre los pa-cicntcs cuyo retardo se debit") a problemzts dentro de

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66, 1^Bekri, et al.: Delays in Presentation and Treatment^9

los scrvicios de salud, los pacicntcs discapacitadosfueron los que sufrieron el retardo mas prolongado. Elestudio tambien comparo dos areas rurales de Etiopla,una con altas tasas de incapacidad entre los casosnuevos y otra con tasas bajas entre los mismos. Lastasas alias de incapacidad (y mayor retard() en el iniciodel tratamiento) estuvieron asociadas con altos nivelesde estigma y fueron predominantes mils en la comu-nidad cristiana que en la musulmana y en las comu-nidades que hacen use de la medicina tradicional. Sor-prcndentemcnte, no se encontr6 ninguna asociaciOncon el conocimiento de Ia transmisiOn, los sintomas yla curabilidad de Ia enfermedad. Sc discutcn las impli-caciones de las actividades rclacionadas con la promo-ciOn la salud.

RESUME

Lc delai cxistant chez les malades de la lepre entreIc debut des symptOmes et a raise en traitement n'a pasetc hien caracterise. Parcc que la reduction de ce delaicst sans doute Ia plus efticace de toutes activites dirigeesvers Ia prevention des incapacites, nous avons compareles diverses composantes du delai chez des nouveauxmalades avec et sans incapacites. Les malades avec in-capacites avaicnt un delai median de 26 mois, Landis quechez les malades sans incapacites ce deli n'etait quede 12 moil. Le Mai total a etc divise en trois com-posants: a) Ic delai entre le debut des symptOmes et Iapremiere action de recherche de soins, qui etait signi-ticativement plus long pour les patients avec incapac-ites; b) Ic alai entre la premiere action et Ia premierevisite a tine cliniquc reconnue, qui etait aussi significa-tivement plus long pour les patients avec incapacites;et c) le delai entre la premiere visite a une cliniquc et ledebut du traitement, qui elan important dans ccrtainscas: chez les patients dont le (Mai elan du a des pro-blemes an niveau des services de sante, les patientsavec incapacites avaicnt a nouveau un dclai significa-tivement plus long. L'etude a aussi compare deux re-gions rurales d'Ethiopie. rune avec des taux elevesd' incapacites parmi les nouveaux cas, l'autre avec destaux faiblcs. Les taux elel;es d' incapacites (et unplus long avant le debut du traitement) etaient done as-socies a un stigma important, an fait d'etre de Ia com-munaute chretienne plutOt que de la communautemusulmane, et it l'utilisation de medicaments tradi-tionnels. II n'y avait, de maniere surprenante, pas d'as-sociation avec les connaissances relatives a la trans-

mission, les symptOmes et la possibilite dc guerir lalepre. On discute les implications de tout cola pour lesactivites de promotion de la sante.

Acknowledgment. We thank Dr. Peter Lever, Mr.Leon Bijlmakers and Ms Prisca Zwanikken of TheRoyal Tropical Institute (KIT), Amsterdam, The Nether-lands, for their inspiration and help. We thank NSL andALERT for funding and facilitating the field work, andour two research assistants, Ato Negussie IT/Mariamand Ato Wondemu Kassyc. ALERT is supported byILEP members through NSL as coordinator.

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