Healthcare seeking behaviour and delay in diagnosis of leprosy in a low endemic area of China

Transcription

1 Lepr Rev (2009) 80, Healthcare seeking behaviour and delay in diagnosis of leprosy in a low endemic area of China FUREN ZHANG*, **, SHUMIN CHEN*, YIPING SUN* & TONGSHENG CHU* *Shandong Provincial Institute of Dermatology, Shandong, P.R. China **Shandong Clinical College of Skin Diseases, Anhui Medical University, Shandong, P.R. China Accepted for publication 10 July 2009 Summary Delay in diagnosis of leprosy can increase the risk of nerve function impairments and promote the transmission of the infection in a community. In order to understand the factors associated with the delays in diagnosis of leprosy, a questionnaire-based interview was conducted to collect information on the delays among 88 newly diagnosed leprosy patients. The results showed that delay was common and associated with the high rate of disability in the study population. The total mean delay was months (median 36 months). The mean patient delay was 24 4 months (median 9 5 months) and the mean health service delay was 25 7 months (median 12 months). Patients with leprosy reported a variety of symptoms/signs at an early stage of the disease, particularly numbness and tingling. Ignorance of the illness was reported to be the main reason for the patient s delay. Health seeking actions ranged from 1 to 50 with a mean of 7 2 after becoming aware of the first symptom/sign. The effectiveness of early diagnosis of leprosy through health promotion in the population needs to be validated and continuous training on leprosy among healthcare providers is needed. Introduction Delay in diagnosis and start of effective treatment is very common and an important risk factor for disability in leprosy, 1 4 although the disability rate among newly diagnosed cases is not a reliable indicator for the performance of the leprosy control programme. 5 Delay in presentation is also a risk factor for new nerve function impairment during the follow-up. 6 In order to identify the reasons for the delays in diagnosis of leprosy for the design of an intervention strategy to improve the early diagnosis of leprosy, many studies have addressed the issue quantitatively and qianlitatively Delay in diagnosis is defined as the time Correspondence to: Shumin Chen, Shandong Provincial Institute of Dermatology, 57 Jiyan Lu, Jinan, Shandong, P.R. China ( chenshm@public.jn.sd.cn) /09/ $1.00 q Lepra

2 Healthcare seeking behaviour and delay in diagnosis 417 between the case being aware of the first symptom and confirmed diagnosis or start of treatment, 1 in which it can be categorisd into patient delay and health service delay. Health-seeking behaviour is a very complicated issue. Ignorance of general health problems, lack of awareness of leprosy, socioeconomic limitation; availability and accessibility of health services and stigmatisation in the general population may prevent people from seeking help. Health service delay may also be related to the low awareness, and lack of knowledge and skills of healthcare providers. Identifying what people with leprosy think and why and how they behave will help the programme managers design an appropriate intervention strategy. Leprosy has been under control, and the goal of elimination of leprosy was achieved in 1994 in Shandong province with a population of 9 3 million. In the past 15 years 50 new cases, on average, were detected each year. WHO Grade-2 disability rate among newly diagnosed leprosy patients is still above 20%, indicating that there is room to improve the early diagnosis of leprosy. In China, information on health-seeking behaviour related to leprosy is scant. 13 In this paper we presented our survey on the health seeking behaviours and the delay in diagnosis among newly diagnosed leprosy patients, to identify the factors associated with delay, so that intervention strategy could be designed to improve early diagnosis of leprosy in a low endemic area. Materials and Methods All the newly diagnosed patients around the province from August 2006 to August 2007 were recruited into the study. Once a person was diagnosed as having leprosy, local leprosy control staff started the treatment and made an arrangement for our interview. Generally this took several days to one week between the case being reported and the interview. Those who were referred to our institute by general health services or local leprosy control staff for confirmation of their diagnosis were interviewed in our institute. The study was conducted by two trained dermatological postgraduate students. The interview was performed with a self-designed questionnaire. Apart from demographic characteristics, delays and the reasons for these delays were explored, following a time line from the first symptom/sign recognised by the patient to the confirmation of diagnosis and effective treatment. The period was divided into two different phases. The phase from the first symptom/sign to the first visit to a health care service including rural doctors is labeled as patient delay. During the process, each help-seeking step was explored. Patients were asked to whom they went for treatment and the reasons for their actions were noted. If the patient had more than one action, the reason for each action was asked and recorded separately. The second phase is from the first visit to a healthcare provider to the confirmation of diagnosis, which is called health service delay. Following this time line the number of visits and the type of health services were noted; the treatment received and the results of the treatment were recorded. The period from diagnosis to effective treatment with multi-drug therapy is called treatment delay. In this study we only focused on patient delay and health service delay, because only one patient refused treatment after the diagnosis was made. Since delay in diagnosis was based upon the patients recall, it might subject to recall bias, especially for the patient with a long delay time. They may remember the year of their first

3 418 F. Zhang et al. symptom, rather than the month. In this case, we assumed the symptom started in the midpoint of the half year. After completion of the questionnaire, nerve function impairments were assessed. In the data analysis only WHO Grade-2 disability was used. All the data were entered into a database and analysed with SPSS software 13.0 version. Results DEMOGRAPHIC CHARACTERISTICS, TYPE OF LEPROSY AND DISABILITY In total 88 leprosy patients were diagnosed including 50 males and 38 females. The age of the 88 patients ranged from 19 to 84 years old with a mean of 47 3 years and a median of 46 years. The vast majority (87 5%) of the patients were married, and farmers accounted for 90 9%. Sixty-seven (76 1%) were multibacillary (MB) type of leprosy and 21 (23 9%) were paucibacillary leprosy (PB), with an MB to PB ratio of 3 2:1. At the time of diagnosis 38 (43 2%) of the patients had WHO Grade-2 disability. Fifty-nine (67 0%) patients reported that they did not know any contact with an index leprosy patient. The comparison of the demographic characteristics, type of leprosy, infectious source and the disability between male and female patients are presented in Table 1. DETECTION MODE AND THE FIRST SYMPTOM/SIGN OF THE DISEASE Out of the 88 newly detected cases, 69 (78 4%) were detected at skin clinics, 17 (19 3%) were referred from general health services and 2 (2 3%) through clue survey. When we asked the patient what was the symptom/sign noted first, 40 (45 5%) patients reported numbness or Table 1. Comparison of demographic characteristics, type of leprosy and disability between male and female patients Variable Male n ¼ 50 (%) Female n ¼ 38 (%) Total n ¼ 88 (%) P Age (Year) mean ^ SD 48 2 ^ ^ ^ Education level Illiterate 9 (18 0) 20 (52 6) 29 (33 0) Literate 41 (82 0) 18 (47 4) 59 (67 0) Marital status Married 43 (86 0) 34 (89 5) 77 (87 5) Single/widowed 7 (14 0) 4 (10 5) 11 (12 5) Occupation Farmers 44 (88 0) 36 (94 7) 80 (90 9) Others 6 (12 0) 2 (5 3) 8 (9 1) Type of leprosy MB 36 (72 0) 31 (81 6) 67 (76 1) PB 14 (28 0) 4 (10 5) 21 (23 9) Infectious source Household contact 5 (10 0) 4 (10 5) 9 (10 2) Social contact 11 (22 0) 9 (23 6) 20 (22 8) Unknown 34 (68 0) 25 (65 7) 59 (67 0) Disability (WHO grade 2) Yes 23 (46 0) 15 (39 5) 38 (43 2) No 27 (54 0) 23 (60 5) 50 (56 8) 0 665

4 Healthcare seeking behaviour and delay in diagnosis 419 tingling of extremities, followed by skin lesion(s) in 35 (39 8%), deformity of hand or face four patients, loss of eyebrow three patients, ulcer of hand or foot two patients, red lump on body (erythema nodosum leprosum, ENL) one patient and dry-hand one patient. There was no significant difference in detection mode and the first symptom/sign between male and female patients. Thirty-two MB patients (32/67, 47 8%) started with numbness/tingling as the first symptom compared with eight PB patients (8/21, 38 1%). HEALTHCARE SEEKING BEHAVIOURS AND DELAYS IN DIAGNOSIS After recognising the first symptom/sign 13 (14 8%) patients undertook self-medication, 25 (28 4%) visited rural doctors, 36 (40 9%) visited dermatologists and 27 (30 7%) visited different departments of general health services at different levels (from township hospitals to provincial hospitals and a variety of special health services, such as a bone hospital or a rheumatic disease hospital) based on their first symptom/sign. For example, seven patients visited neurologists for their numbness or deformities of the hand/foot or face (six of the patients were diagnosed as peripheral neuritis and definite diagnosis was not given in one). None of these patients went straight to leprosy services. The total delay of diagnosis ranged from, 1 month to 202 months, with a mean of months and a median of 36 months. Patient delay ranged from, 1 month to 190 months, with a mean of 24 4 months and a median of 9 5 months. Health service delay ranged from, 1 month to 29 9 months, with a mean of 25 7 months and a median of 12 months. The comparison of healthcare seeking behaviours and the delays in diagnosis between males and females are presented in Table 2. Ignorance of illness or waiting for the disappearance of the symptom was the reason for not seeking help in 82 (93 1%) patients, financial constrain in four, limitation of time in one, and difficulty of transportation in another one. We defined the delay as more than 12 months and tested the factors associated with this delay in diagnosis, because delay in excess of 12 months is a risk factor for nerve function impairments. 3 Sex, education level, infectious source and mode of detection were not associated with the total delay in diagnosis. There was no significant difference in delays among the different age groups of the patients. MB patients tended to be more delayed than PB patients (85 1% vs 47 6%, P, 0 001). Patients with visible deformity at diagnosis had a longer delay than patients without deformity (P ¼ 0 04). Patients who presented with Table 2. First action and delay in diagnosis Variable Male n ¼ 50 (%) Female n ¼ 38 (%) Total n ¼ 88 (%) P First action after symptom Self-medication 8 (16 0) 5 (13 2) 13 (14 8) Visit of rural doctors 8 (16 0) 9 (23 7) 17 (19 3) Visit of dermatologists 19 (38 0) 15 (39 5) 34 (38 6) Visit of general health services 15 (30 0) 9 (23 7) 24 (27 3) Delay in month (mean ^ SD) Total delay 48 9 ^ ^ ^ Patient delay 19 1 ^ ^ ^ Health service delay 29 9 ^ ^ ^

5 420 F. Zhang et al. numbness/tingling of extremities as the first symptom delayed longer than patients who presented with skin lesions and other symptoms (P, 0 01). HEALTHCARE SEEKING ACTIONS AND HEALTH SERVICE DELAY The number of health seeking actions ranged from one to 50 with a mean of 7 2 after becoming aware of the first symptom/sign. There was no significant difference in the number of health-seeking actions between male and female patients. Out of the 88 patients 23 (26 1%) were diagnosed at the time of their first visit to healthcare services, 40 (45 5%) were diagnosed at their second to fifth visits, eight (9 1%) were diagnosed at their sixth to tenth visit, and 17 (19 3%) at their eleventh or later visits. Of the 23 patients diagnosed at the first health service visits 22 were diagnosed at dermatological clinics and only one was suspected and referred by the general health service. At the second health service visits 18 patients were diagnosed, of which 17 were diagnosed by dermatological services and one was referred by the general health service. The remaining 47 patients had multiple health service visits before the diagnosis was made. During the process of healthcare seeking, many patients had to move from one healthcare service to another when they did not get better after treatment. In most patients the consultation of health services depends on the symptoms/signs and their beliefs relating to the problems they suffered. Table 3 shows the misdiagnoses made in different health services when the patients visited for the first three help-seeking actions. Discussion The results in the current study have confirmed that delay in diagnosis of leprosy is associated with disability: i.e. the longer delay the higher rate of the disability. 2,12 The total mean delay is 50 months, which is longer than those in most reports, 3,7,11,12 including the one reported in China. 13 The higher disability rate (43 2%) in this group of patients is due to the longer delay in diagnosis and causes concern. Delays and the associated factors in diagnosis of leprosy differ from study to study and cannot be compared directly due to the differences in study population, and the methodology used in data collection and analysis in a context of different cultural and socio-economic Table 3. Number of patients diagnosed at the first three health service visits First visit Second visit Third visit Health service visit No. patients Patients diagnosed No. patients Patients diagnosed No. patients Patients diagnosed Rural doctors Township hospital Dermatological services General health services* Total * Including some specialised health services such as a bone hospital.

6 Healthcare seeking behaviour and delay in diagnosis 421 situations. For example, in the study conducted in Bangladesh with a large sample, MB patients and elderly patients tend to be delayed in diagnosis, 3 while in the study conducted in Nigeria with a small sample such a relationship is not found and illiteracy is a risk factor for the delay in consultation of leprosy service. 7 WHO Grade-2 disability and MB classification are associated with longer delay among the patients in northern Bangladesh, but are not associated with the delay among the patients in West Bengal, India in the same study. 11 Recently Deps et al. have summarised the delays in presentation reported from both developing and developed areas. 12 In the current study MB patients have a longer delay than 3,7,11 13 PB patients, which is in line with other reports. Many personal and social factors have an impact on a patient s decision to seek health care. These factors may interact and may differ among different study populations and from person to person. It is apparent that many patients did not regard their symptoms as severe, and thought that the symptoms would disappear by themselves and did not seek treatment. 14 A health promotion campaign on leprosy for the general public aimed at encouraging people to selfreport when they suspect they may have leprosy has been advocated by WHO in a low endemic situation. 15 In the study conducted in Nigeria with 46 patients, family/friend was the first person to consider leprosy as the cause of the first symptom/sign in 45% of the interviewees, with a shorter patient delay of 4 5 months. 16 The study conducted in Bangladesh and India has also demonstrated that exposure to educational leaflets is associated with reduced delay. 11 However, a literature review identifying proven and potential interventions addressing patientrelated delay concludes that the evidence base available to inform the choice of small-scale interventions to promote early detection at the primary level is extremely limited. 17 In a low endemic area for leprosy, such as in Shandong and China as a whole, the issue of effectiveness and feasibility of early diagnosis of the few incidents of new cases, particularly related to patient delay, scattered amongst a large population remains to be addressed. About a quarter of the patients were diagnosed when they first sought advice about their health problems in health services, which is similar to the study conducted in Nigeria. 7 The mean of health-seeking visits before reaching diagnosis is 7 2, which is more than the study conducted in northern Nigeria, 14 and Brazil, 12 Bangladesh and India. 11 Some patients even visited health services up to ten times or more, reflecting the lack of awareness about leprosy, or paucity of knowledge and skills in diagnosis of leprosy among different medical professionals. In particular with dermatological services 44% of the patients in their first three health seeking actions are misdiagnosed, which confirms our previous assessment of knowledge and skills in the early diagnosis of leprosy among dermatologists (Table 3). 18 This has been found to be the main reason for delay in Nigeria, 7 Nepal, 8 Bangladesh and India. 11 One study conducted in the United Kingdom also reported that misdiagnoses as dermatological and neurological conditions were important causes of delay. 19 Leprosy can present with a variety of complaints at an early stage of the disease, which makes early diagnosis difficult. 20 Although efforts have been made to validate the duration of delay reported by patients by connecting significant family, local or national events or religious festivals to the symptoms/signs, there is still a tendency to under-estimate delay. 3 In practice, it is difficult to verify which symptom/sign is the early one. 16 If the determination of an early symptom/sign is not validated, the reliability of the delay will not be made easily. This issue has not been fully addressed in any previous studies on the delay in diagnosis of leprosy. Leprosy reaction, particularly with erythema nodosum leprosum (ENL), or Type 2 reaction, is an acute inflammatory condition. It may occur before, during and even after effective treatment, and probably the reason for seeking healthcare due to overt clinical

7 422 F. Zhang et al. symptoms of the problem, such as fever, fatigue and painful red nodules. 21,22 In the current study only two patients suffered from ENL at diagnosis, and one of them presented with ENL as the first symptom. Although we did not collect the information on the symptoms suggestive of Type 1 reaction, it seems that reactions are not an important trigger that causes people to seek health care in this group of patients. It is noted that numbness or tingling in extremities is reported as the first symptom of the disease in 40 (45 5%) of the patients in the current study. A number of points need to be considered in interpreting this finding. First, some patients may care more for abnormal feelings of the body, especially of the hand or foot, than skin lesions, which motivates them to seek medical help. Secondly, some patients may connect the numbness/tingling with weakness of their muscles, which has an impact on their daily activities. In our interview, some patients complained that they could not stand or walk steadily, as if they were standing or walking on a bulk of cotton, and some patients complained that they could not hold a cup firmly. Although it is difficult to verify which sign is the first, we believe numbness or tingling is an important early symptom of leprosy and needs to be considered as an early clue in the diagnosis. Thirdly, it is difficult for a patient to find anesthetic skin lesion(s) at an early stage, particularly the one(s) on covered areas of the body. As the disease develops, numbness or tingling starts and becomes the first complaint. Fourthly, sensory alteration really is an early symptom in the clinical development of leprosy, at least in some patients, because skin lesions and nerve involvement either may appear alone or may precede the other. 22 A report from Brazil has showed that 55% of patients notice the concomitant alterations of skin and sensation. 9 No matter which one is the first, this has an important meaning in the early diagnosis of leprosy and in training. Health providers should be informed that when a patient presents with numbness/tingling in extremities, other evidence suggestive of leprosy, such as skin lesions on covered areas of body, thickening of peripheral nerves and peripheral nerve function impairments should be searched for, rather than considering the possibility of peripheral neuritis only. When in doubt, a referral should be made. In conclusion, delays in the diagnosis of leprosy can occur at many stages from the development of symptoms to the consultation of healthcare services. To reduce patient delay, public health promotion is needed to increase the awareness of leprosy, but the effectiveness in identifying the few incident new cases scattered among a large population needs to be validated. To reduce the health service delay, healthcare providers at different levels, including specialists such as neurologists, should be trained to maintain a high index of suspicion of leprosy and improve diagnostic skills. Addressing both components of delays will decrease the time to diagnosis and ultimately the extent of transmission of the disease and reduce the risk of nerve function impairments. References 1 Bekri W, Gebre S, Mengiste A et al. Delay in diagnosis of leprosy and start of treatment in leprosy patients: a case control study of disabled and non-disabled patients in three different settings in Ethiopia. Int J Lepr Other Mycobact Dis, 1998; 66: Meima A, Richardus PR, Gebre S et al. Factors associated with impairments in new leprosy patients: the AMFES cohort. Lepr Rev, 1999; 70: Nicholls PG, Croft RP, Richardus JH et al. Delay in presentation, an indicator for nerve function status at registration and for treatment outcome-the experience of the Bangladesh Acute Nerve Damage Study cohort. Lepr Rev, 2003; 74:

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