RESEARCH ARTICLES

Peregrination (Via Crucis) to a diagnosis of leprosy

Camilla Maria Ferreira de Aquino^I; Edrienny Patrícia Alves Accioly Rocha^II; Marília Cruz Gouveia Guerra^III; Maria Wanderleya de Lavor Coriolano^IV; Eliane Maria Ribeiro de Vasconcelos^V; Eloine Nascimento de Alencar^VI

^I Nurse. Master from the Integrated Graduate Program in Public Health. Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: camilla.aquino@yahoo.com.br
^II Nurse. Master the Integrated Graduate Program in Nursing. Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: edriennyaccioly@yahoo.com.br
^III Nurse. Specialization in Child Health. Maternal and Child Institute of Pernambuco, Recife, Pernambuco, Brazil. Master Student from the Graduate Program in Nursing. Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: mariliaenfermeira@hotmail.com
^IV Nurse. PhD in Child and Adolescent Health. Associate Professor, Department of Nursing of the Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: wandenf@yahoo.com.br
^V Nurse. PhD in Nursing. Associate Professor, Department of Nursing. Federal University of Pernambuco, Recife, Pernambuco, Brazil. Vice-Coordinator of the Master's Program in Nursing. Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: emr.vasconcelos@gmail.com
^VI Nurse. PhD in Antrhopology. University of Salamanca- Spain. Associate Professor, Department of Nursing. Federal University of Pernambuco. Recife, Pernambuco, Brazil. E-mail: eloinealencar@yahoo.com.br
^VII Extracted from the monograph of Undergraduate Course of Nursing, Federal University of Pernambuco.

DOI: http://dx.doi.org/10.12957/reuerj.2015.12581

ABSTRACT

The aim of this qualitative, descriptive study was to identify the difficulties associated with the peregrinations of persons with suspected leprosy in their efforts to obtain diagnosis and treatment, until receiving a definitive diagnosis, as reported by healthcare users being treated for leprosy. Data was obtained between December 2009 and January 2010, through interviews of 16 patients with leprosy at the Lessa de Andrade Clinic in Recife, and analyzed according to Bardin's Index. Three themes were outlined: peregrination until correct diagnosis of leprosy; role of health professionals; and outcome of the peregrination. It was concluded that incorrect and delayed diagnoses attest to the lack of preparedness, among health professionals at all levels of complexity, to suspect and diagnose leprosy. This points to a need for continuing professional development, especially for primary health care workers. Keywords: Leprosy; delayed diagnosis; treatment; continuing professional development.

INTRODUCTION

Leprosy is an ancient disease whose healing process is scientifically established, but it remains a challenge to global public health. In 2013, the resolution of the World Health Assembly on Neglected Tropical Diseases ratified the State's role in the elimination and control of this group of diseases, giving rise to the Bangkok Declaration towards a Leprosy-Free World, whose goal is to achieve eradication of the disease by 2015^1,2.

After two decades of implementation of multidrug treatment regimens, leprosy remains as an endemic disease in Brazil, with a prevalence of 1.51 new cases per 10,000 inhabitants in 2012, which is above the recommendation of the World Health Organization (WHO) of less than one case, thus consisting a priority public health problem of the Ministry of Health^3-5.

Previously, Brazil had set the goal of eliminating leprosy in 2011, with no success. This country remains second in the ranking of absolute number of cases and first in the ranking of proportion of cases in the population. Although the diagnosis is mainly clinical, of easy detection as to the differential diagnoses, and it has effective, free and easy to administer therapy, these advantages do not have direct impact on epidemiological data^6,7.

People with signs and symptoms consistent with leprosy should be encouraged to seek the nearest health unit, and primary care must be the preferred gateway of Health Care Networks, in which health workers should receive, welcome, and take responsibility for users and their family members. Thus, it is expected that the disease can be early diagnosed before clinical signs, for the prevention of disabilities and deformities resulting from the disease if not treated or diagnosed late⁸.

But some shortcomings are observed in the daily practice of health services, which justifies the choice of the theme of this study. It was chosen from the observation of the authors during internship at referral centers, when we identified the long road users faced, roving in several professionals and services before the correct diagnosis of leprosy.

From this issue, the authors sought a better understanding about the factors involved in the maintenance of this scenario from the subjective dimension of users with leprosy. Thus, the study aimed to identify the difficulties presented by leprosy patient in seeking diagnosis and treatment.

LITERATURE REVIEW

The term pilgrimage has a double connotation. It may be related to journeys motivated by devotion to a shrine or a holy place^9-11, and the Via Crucis is the pilgrimage most widely recognized by Christians¹². In another reference, the Western concept of pilgrimage was influenced by Homer's Odyssey¹³, assigning it the sense of a journey full of difficulties, marked by suffering and the overwhelming desire to achieve the aimed point.

This quest is marked by obstacles as described by several authors who researched the way the users of the Unified Health System (SUS) go through for the correct diagnosis of clinical conditions including leprosy^14-18.

Leprosy is a contagious infectious disease caused by Mycobacterium leprae, which is an obligatory intracellular bacillus that is characterized by dermatological and neurological injuries, leading to neurological, ophthalmic and motor sequelae, if not treated early^19,20. The diagnosis is made based on the clinical evaluation and, when necessary, methods such as histopathology and skin smear examination are used, especially when there are doubtful cases. To receive the appropriate therapy, the patient is classified as paucibacillary (PB) ot multibacillary (MB)²¹.

However, transcending the technical-scientific or biomedical definitions, the stigmatization of the disease needs to be considered. It is inherent in the term leprosy, strongly associated with deformities caused by the disease and its historicity²⁰, that may hinder the search of individuals for treatment or delayed diagnosis by professionals or by the individual²² after identifying the cardinal signs of leprosy (patches and/or abnormal sensitivity)^23-25. The social stigma of leprosy is reduced by early diagnosis. Thus, the introduction of multidrug therapy (MDT) and the effective treatment of reactional episodes have prevented the appearance of deformities and disabilities²⁶.

Since the Ministry of Health determines that leprosy is a priority health condition and the diagnosis is primarily clinical, by identifying signs and symptoms both by the physician and the nurse, at all levels of complexity, preferably in primary care, from the Family Health Strategy (ESF)¹, it is expected that Brazil is committed to international goals for the elimination of this disease ².

METHODOLOGY

This is a descriptive study with a qualitative approach, which is defined as a methodology that allows to know the subjective dimensions of a study as they are presented in their meaning and context, based on the characteristics of a given population or phenomenon^27,28. We chose this method because of the realization that this design was the most suitable to the study of the problem, since it oscillates between two extremes, the objectivity and the subjectivity of the analysis of the collected material.

Prior to data collection, the study was approved by the Research Ethics Committee of the Health Sciences Center of the Federal University of Pernambuco with registration in the CAAE: 0236.0.172.000-09.

The study was conducted in the city of Recife, capital of Pernambuco state, from December 2009 to January 2010, in a clinic, characterized as the reference unit and counter-reference for patients with leprosy.

The studied group was intentional, selected from the confirmed diagnosis of leprosy in individuals that arrived at the clinic to the administration of supervised monthly dose during medical and nursing consultations. Data collection was carried out through semi-structured interviews with a main guiding question and four secondary guiding questions. The interviews were recorded and then transcribed.

The data were submitted to thematic content analysis, which followed the phases: pre-analysis, preparation and systematization of initial ideas; material exploration, represented by systemic administration of the decisions taken in the previous step of coding, which comprises coding, discount or enumeration, according to pre-formulated rules; treatment of the obtained results, to make data significant and valid^29,30. After these steps, a detailed analysis of the dialogues enabled to identify the units of meaning and to group them into three themes: pilgrimage until the correct diagnosis of leprosy; health professional's performance; and consequence of pilgrimage (Via Crucis).

The identity of interviewees was preserved by replacing their names in the presentation of the cutouts of their answers by famous places of pilgrimage of different religions, which represents the arduous journey traveled by leprosy patients. Ex: Fatima, Santiago de Compostela, etc.

RESULTS AND DISCUSSION

We interviewed 16 users using the sampling criteria of data saturation. As for the profile of participants, nine individuals were female and seven were males. As to age group, only one patient was under 18 years old, five were from 18 to 35 years old and ten were between 35 and 65 years old. Regarding occupation, ten were formally employed and six were not working at the time of collection, but admitted performing domestic work or informal services.

Main Topic 1: Pilgrimage until the diagnosis of leprosy

The results point in the studied context that individuals with leprosy had gone through a long pilgrimage in search for diagnosis. This finding can be explained by ignorance of the population on the clinical signs of leprosy, delaying the search for health services³¹, and also by operational failures within the health care, especially within primary care, set by the ESF.

Since I was a child, I have had it (the spot). [...] There was a spot in the knee, too. When I was 12, I got burned and I didn't feel it. But my mother didn't care and I just found out at the age of 17, when I got pregnant. (Mecca)

The statement above identifies the need for greater attention to the demands that are not presented by users who come to the ESF, in order to grasp through qualified listening demands that are not always perceived. The fact that the disease was diagnosed in pregnancy portrays that only then there was a physical examination, which enabled the suspicion that it was leprosy.

Another perspective, related to the difficulty in diagnosing the disease, is the wide spectrum of manifestations presented by the disease³¹, which hampers the diagnosis in the first months and years¹⁹, dragging the patient for a long period of diagnostic tests and lists, as illustrated by the declarations:

It has been many years, I felt a great pain on my face and I went to the dentist, I had my tooth extracted, I went to the ENT doctor and he treated my ear, I did a CAT scan, MRI and nothing. [...] From the first pain until the stain it has been 17 years. (Jerusalem)

First, when wounds began to appear on my body, I went to a private clinic [...] they thought it was many others diseases, but it was not. They kept taking my money [...] for a month. (Rome)

After analyzing all lines, the diversity of time for the diagnosis of leprosy, reported spontaneously by patients, called the authors' attention. It ranged from one month to 17 years. Other studies have found this problem and consider that the period of a year or more for the diagnosis of leprosy is too long ^32-34.

Main Topic 2: Health Professional's Performance

The diagnosis of leprosy should be done preferably in primary health care⁸, although it can also be diagnosed in hospitals and private clinics. Diagnosis is predominantly clinical, based on complaints, signs and symptoms detected by dermatological and neurological examination and by evaluating muscle strength of the upper and lower limbs¹.

The health workers' performance, as described in the interviews, was divided into two secondary topics: correct diagnosis at the first visit and misdiagnosis.

Secondary topic 1: Correct diagnosis at the first visit

The health worker responsible for anamnesis and diagnosis should be prepared to recognize the characteristic signs and symptoms of leprosy and to perform tests to eliminate the differential diagnosis.

Besides the technical performance of the professional, it is highlighted relevant communication with the user in order to grasp the complaints and singularities, and it is also important that the worker has knowledge about the signs and symptoms of leprosy.

I realized I had a clear spot on my back. [...] I had a biopsy [...], then I got the result [...], and I started to take the medicine. And I did not try any other doctor. (Santiago de Compostela)

The positive diagnoses for leprosy at the first visit were performed by specialist physicians, since in all cases, when the user realized the injury, he/she sought a specialist, rather than use primary care as first search, which should be the preferred gateway.

I saw that I had a stain, an areola and a red edge and I found that there was no sensitivity there. [...] I sought for a doctor in private healthcare plan. He made a clinical examination and he found that it was leprosy. (Varanasi).

I found out four months ago, because a spot appeared on my foot and I went to the dermatologist in the private clinic and she prescribed an exam and found it was leprosy. (Fatima)

The reports presented show the proper and rapid diagnosis of leprosy, through the search of these two users in the private health service. Study identified that users had searched in the Unified Health System (SUS) on average 2.7 times for medical consultation, from the onset of symptoms to diagnosis of leprosy, and 4.5 times in private health services³⁵. Secondary topic 2: Misdiagnosis

This aspect was reported by the research participants, highlighting the difficulties of suspicion before signs and symptoms of leprosy.

I saw I had a little spot, a little bit reddish, but it did not itch, it did not hurt ... [...] I went to the clinic and he prescribed medicine and an ointment [...]. He thought it was fungus or allergy [...] he referred to the dermatologist to be sure. (Lourdes)

The doctor did not believe it was leprosy. He thought it was Lupus, allergy, I did many tests - a huge folder full of tests. (Jerusalem)

The myriad of suggested diagnoses that did not mentioned leprosy is consistent with the differential diagnosis of the disease. Skin and neural manifestations of leprosy are broad, but specific exams and tests can be performed clinically in the first visit of the user and, in general, it is not necessary to request laboratory tests. They can be requested to define the treatment and monitoring of patients outcomes¹.

Main Topic 3: Consequences of pilgrimage (Via Crucis)

Leprosy is a long-duration and slow-evolution disease, with sequelae that lead to emotional and social disorders to the patient and their families ^1,34.

A significant portion of users reported physical damage as a result from the disease. Deformities and disabilities are the main problems of leprosy, and the percentage of patients with physical disabilities is an important epidemiological indicator to identify the quality of health services³⁶.

Sequelae are the result of several factors, which include the very evolution of the bacillus in the nerves without proper treatment, due to the late diagnosis, lack of self-care and deficiency of educational measures that may promote a better quality of life of individuals with leprosy ^1,3,34,36.

The following statements portray some of these neural sequelae that hinder severely patients' routines:

I feel dormancy in legs, hands, nose and ear. (Aparecida)

I felt tingling in my leg and a wound arose in it and I need to make a dressing. My leg hurts a lot. (Juazeiro do Norte)

It is not only the natural course of the disease and its complications that cause injury to the patient. The high frequency of misdiagnosis has a consequence; they are iatrogenic consequences of pilgrimage. Clear cases of iatrogenic, which is injury caused by a medical act³⁶, were cited by respondents:

I had most of my teeth extracted because of the pain [...] I have almost no tooth [... ] I have now with ear, eye problems [...]. I'm doing physiotherapy. (Jerusalem)

I had an injury that became infected, I went to the doctor that attended close to home [...] the doctor said, put an antibacterial medicine [...] I went home. Over time, it became infected, I had to amputate the foot [...] I use a prosthesis. I lost part of shin down. (Aparecida)

The reports presented in this study show the main complications of the disease, such as amputations, wounds and limitations, which show the importance of early diagnosis of the disease from the health education for the population and continuing education for health workers in all health care levels. These aspects that can directly impact in the reduction of waiting time and pilgrimage for the diagnosis of leprosy, resulting in lower rates of disabilities and deformities.

CONCLUSION

This study sought to highlight the pilgrimage of leprosy patients until the diagnosis, revealing factors that predispose this condition, through three emerging themes of the speeches of the interviewees: Pilgrimage until the correct diagnosis of leprosy; Health professional's performance; and Consequences of pilgrimage (via crucis).

As for the study limitations, we can mention the fact that participants were recruited from a reference unit, which serves more severe cases and complications. The profile of users that are treated in the family health units may be different.

According to the presented reports, many users tried various health care facilities, for months or years, before receiving the correct diagnosis. This finding suggests the presence of unskilled professionals, in public and private health services, to recognize the dermatological and neurological changes of leprosy, with its multiplicity of signs and symptoms that can be confused with other diseases, leading to misdiagnosis. However, the fact that this is an endemic disease in the country and the region should lead to clinical suspicion for the diagnosis of disease.

Spontaneous search of patients to the reference units, before seeking diagnosis in primary care or instead of being detected by the ESF through the action of community health workers and graduated professionals during home visits, causes overload in the service and therefore reduction of its quality and points out shortcomings of the role of primary care in the establishment of bonds and accountability for individuals and families.

Thus, the pilgrimage of users with leprosy is indicative of unprepared professionals at all levels of complexity, as well as their need for continuing education. At the level of primary care, it is necessary to develop more participatory educational activities between health professionals, especially nurses, along with the assisted population, and to encourage training of community health workers in identifying suspected cases of the disease.

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