Evaluation of the limitations in daily-life activities and quality of life in leprosy patients submitted to surgical neurolysis to treat neuritis

184 ABSTRACT | Neurolysis is indicated to reduce neural suffering and to prevent sequelae and disabilities in leprosy patients. The aim of this study was to determine the degree of limitation of daily activities and quality of life in leprosy patients submitted to neurolysis for neuritis treatment. The study included patients who underwent neurolysis from 1998 to 2011. We collected demographic and clinical information, data about activity limitations (Screening of Activity Limitation and Safety Awareness [SALSA]) and quality of life (WHO Quality of Life – Short Form-26 [WHOQOL-BREF]). Statistical analyses included frequency, central tendency and dispersion measures, Mann-Whitney and KruskalWallis’ tests, and Spearman’s correlation coefficient adopting p≤0.05. The sample consisted of 36 patients with a mean age of 44.0 years and three years of postoperative period. Six patients had disability grade 0, 18 patients had grade 1, and 12 patients had grade 2. The main difference between the SALSA scale occurred between grades 0 (mean 31.8) and 1 (mean 42.56). The results obtained in the analysis of the WHOQOL-BREF included the following domains: physical facets (mean 11.10), psychological facets (mean 13.41), social relationships (mean 15.15), and environmental facets (mean 11.63). The most affected facets of the WHOQOL-BREF were as follows: work ability (physical), negative feelings (psychological), sexual activity (social relationships), and financial resources (environmental). Despite the Evaluation of the limitations in daily-life activities and quality of life in leprosy patients submitted to surgical neurolysis to treat neuritis Avaliação da limitação das atividades diárias e qualidade de vida de pacientes com hanseníase submetidos à cirurgia de neurólise para tratamento das neurites Evaluación de las limitaciones de las actividades diarias y calidad de vida de pacientes leprosos sometidos a cirugia de neurólisis para el tratamiento de las neuritas

neurolysis, most subjects showed activity limitations, which were found to be higher in people with physical disabilities.The major dissatisfaction observed in the quality of life was in the physical domain, especially with regard to pain and the need for medical care.
Keywords | activities of daily living; leprosy; quality of life.

INTRODUCTION
Leprosy is characterized by a chronic infection caused by Mycobacterium leprae that mainly affects the skin and peripheral nerves 1 .In Brazil, the disease is a public health issue with 33,955 new cases found in 2011, which represents the second highest index worldwide 2 .
Manifestations of such a disease depend on the patient's cellular immunity and can be divided into five groups: two polar and three inter-polar groups.One pole consists of patients with better resistance to the bacillus and fewer skin lesions (tuberculoid leprosy), while the other includes individuals with immunity impairment and high bacteriological load (lepromatous or Virchowian leprosy).Among the poles, there are the inter-polar kinds with instable immunological reactions (tuberculoid dimorph or tuberculoid-borderline, dimorph-dimorph or borderline-borderline, and lepromatous-dimorph or lepromatous-borderline).The World Health Organization (WHO) proposes a score that is based upon the number of skin lesions and is divided into paucibacillary (PB) with five lesions or multibacillary (MB) with more than six lesions 3 .
For prevention and treatment of the neural damage, the WHO recommends oral corticotherapy and/or a surgical approach for nerve decompression (neurolysis) [6][7][8][9][10] .Until now, the evaluation of postoperative results of the neurolysis was based on pain decrease and sensorimotor function, without considering the person's perception of his/her position in life with regard to the person's culture and his/her system of values and expectations, as proposed by the International Classification of Functioning, Disability and Health (ICF) [9][10][11][12] .
This study aimed at identifying the grade of limitations in daily activities and quality of life in patients submitted to neurolysis for neuritis treatment in leprosy.

METHODOLOGY
This cross-sectional study was approved by the Research Ethics Committee of Hospital Universitário Clementino Fraga Filho at Universidade Federal do Rio de Janeiro (HUCFF/UFRJ) and registered under number 050/08.
The research included patients diagnosed with PB or MB leprosy who underwent neurolysis in any nervous trunk, aged between 18 years and 65 years, with more than six postoperative months.Patients submitted to another surgery (correction of claws and tendinous transferences), in reactional state or with plantar ulcers and other diabetic diseases (diabetes, congestive heart or coronary, renal, and liver failure, HIV, psoriasis, atopic dermatitis, and vitiligo), were excluded from the study.
At first, sociodemographic (gender, age, education, and income) and clinical (PCT discharge time, postoperative time, operational classification, recent disability grade, and nerves and limbs submitted to surgery) information was collected.
Limitation of activities was assessed by the Screening of Activity Limitation and Safety Awareness (SALSA) instrument, which is composed of 20 items and is formulated based on the ICF and validated in Brazilian Portuguese 12 .The results of the SALSA test vary from 1 to 80 points, and the scores can be explained as follows: from 10 to 24 (no significant limitation), 25 to 39 (mild limitation), 40 to 49 (moderate limitation), 50 to 59 (severe limitation), and 60 to 80 (extreme limitation) 12 .
The quality of life evaluation was carried out with the WHO Quality of Life -Short Form-26 (WHO-QOL-bref ) 10 .This is a self-administered questionnaire that comprises of 26 questions in which 24 of the questions have been divided into four domains (physical, psychological, social relationships, and environment) and two questions are general, concerning the person's quality of life and health condition.The WHOQOL-bref domains vary from 0 to 20 points and have facets valued from 1 to 5 in the Likert positive scale.The score of each domain was carried out according to the algorithm that was built and standardized by the WHOQOL group using the Statistical Package for the Social Sciences (SPSS) software, version 13.0 for Windows © .
The SPSS 13.0 was used for data processing.Frequency analysis, central tendency, and dispersion measures; Kolmogorov-Smirnov, Mann-Whitney, Kruskal-Wallis, and Spearman's correlation coefficient tests with p≤0.05 were included in this investigation.

Sociodemographic and clinical profile
From the hospital records, it was found that 76 patients were submitted to neurolysis, of whom 31 patients did not match the eligibility criteria for this study as 16 patients were not localized, 2 patients were deceased, 8 patients had undergone other surgeries, and 5 patients presented with other illnesses.With regard to losses, three patients failed to attend, two patients presented with complications, and four patients had incomplete records.Hence, a total of 36 subjects were finally included in the study sample.
The age group of the patients varied from 24 years to 65 years (mean=44.0,standard deviation [SD]=11.2),PCT discharge period ranged from 2 years to 24 years (mean=8.6,SD=5.9), and postoperative period ranged from one year to eight years (mean=3.0,SD=1.5).Sociodemographic and clinical data are presented in Table 1.

Limitations in activities and risk awareness
SALSA scale values varied from 24 to 70 points (mean=40.3,SD=10.6).From the group of assessed patients, 91.7% presented SALSA scores that were equal to or higher than 25, indicating that these patients showed mild to extreme degrees of limitation in their daily activities.Table 2 illustrates the distribution of classifications according to the SALSA score.
Patients without physical disabilities (grade 0) obtained a mean score of 31.8 points (SD=5.3),while those with disabilities (grade 1 or 2) obtained a mean score of 42.1 points (SD=10.6)with p=0.01.
In the investigation of the association between PCT discharge time and the SALSA scale, a weak correlation (r s =0.22) was seen, but the same was not verified when the postoperative time was considered in the investigation (r s =−0.06).

Quality of life
About the perception of the quality of life (question 1), 15 (41.7%) patients were neither satisfied nor dissatisfied, 13 (36.1%)were satisfied, and 8 (22.2%) were dissatisfied.With regard to the perception of their health condition (question 2), 18 (50%) patients were dissatisfied.
The individuals were more satisfied with the social relationships (mean=15.1,SD=3.5) and psychological (mean=13.4,SD=2.7) domains.Physical (mean=11.1,SD=3.4) and environmental (mean=11.6,SD=2.1) domains were the most damaged domains.The individual perception of quality of life (general quality of life) varied from 4.0 to 18.0 points with a mean of 11.3 points (SD=3.5).The physical (r s =0.71, p<0.001) and environmental (r s =0.56, p<0.001) domains had a higher effect on the perception of individuals with regard to their general quality of life.Results from the various facets are illustrated in Table 3.
The comparison of the WHOQOL-bref domains according to the sociodemographic and clinical variables are presented in Tables 4 and 5, respectively.

DISCUSSION
Little information is available about the impact on the life of patients submitted to neurolysis 7 .Only one qualitative and quantitative study assessed the patients' satisfaction after neurolysis; however, the main limitations of the research were the type of questionnaire that was used, the absence of pain characterization, information on quality of life, and restrictions to participate 13 .The present study approached daily life activities and quality of life, using two instruments that were validated and previously applied in leprosy 14,15 .The WHO-QOL-bref choice was based on the quality of the psychometric characteristics and internal reliability 10,16,17 .
Male gender predominance is in accordance with reference national data 18 , with 58.4% of these patients presenting sensorimotor sequelae.This fact may be associated with men's delay in seeking health services due to the fear of losing their roles as family providers 19 .Low  levels of education and income were also characteristics observed by Nascimento 20 .These features may be associated with the fact that leprosy can restrict education and work opportunities due to prejudice and stigma 21 .
Low income may also lead to difficult access to health services, favoring neural damage appearance 15,19,22 .
In the outcomes of the SALSA scale, 91.7% of the patients presented some limitation degree, and 77.7% of patients had mild to moderate limitations.This datum can be associated with a bigger number of male participants, MB, and with disability grades 1 and 2 19 .
With regard to the quality of life, the most damaged domain was the physical, followed by the environmental, psychological, and lastly, social relationships.This finding was also observed by Costa et al. 16 .Taking into consideration the physical domain facets, "pain and discomfort" and "medication dependence" were the most damaged.Pain has been a complaint seen in other studies after PCT discharge [23][24][25] .
In the environmental domain, the most mentioned dissatisfactions were in the following facets: "financial resources" and "transportation."Satisfaction with financial resources can be associated with work capacity and education.The "transportation" facet depends on the local socioeconomic condition and quality of services 26,27 .
In the psychological domain, presence of negative feelings may reflect nonconformity, sadness, shame, insecurity, and an empty feeling.The highest satisfaction observed with the "spirituality and beliefs" facet, is associated with the search for a way of confronting and relieving the health condition 28 .
In social relationships, dissatisfaction with sexual activities may reflect the impact that the disease has on the family environment, causing an effect not only on the individual's public life but also on his/her emotional life 16 .
The number of operated nerves does not seem to have an effect on activity limitation and quality of life.These findings are also in accordance with those observed by Alencar et al. 14 .
The main limitations in this study are associated with the absence of preoperative measures, the absence of a control group, as well as the absence of information about the sensorimotor function.It can also be mentioned the limitation of the WHOQOL-bref instrument, which was not designed to find a brief measure of quality of life, besides it does not have a cut point, people cannot say or write what they feel (limitation of the research instrument) 10 .

CONCLUSION
Although neurolysis is a part of the leprosy treatment, in this study, we observed that most of the participants presented limitations in daily activities, especially those with physical disabilities.This finding may be associated with the delay in diagnosing the disease or the absence of agreement at the adequate time to perform the surgery.With regard to the quality of life, the highest level of dissatisfaction was observed in the physical domain, especially concerning pain and the need for health care.It must be emphasized that neurolysis follow-up should not be limited to sensorimotor findings.Information collected with SALSA and WHOQOL-bref instruments may contribute to the postoperative follow-up, rehabilitation, and public policies, which may value a person's perceptions.

Table 1 .
Distribution of frequencies of the sociodemographic, clinical, and postoperative variables

Table 2 .
Distribution of the patients' frequencies according to the SALSA scale scoring SALSA: Screening of Activity Limitation and Safety Awareness

Table 3 .
Mean and confidence intervals of the four WHOQOL-BREF facets CI: confidence interval

Table 4 .
Mean scores (standard deviation) of the WHOQOL-bref facets according to the participants' demographic characteristics

Table 5 .
Mean scores (standard deviation) of the WHOQOL-bref facets according to clinical and postoperative variables General quality of life: individual perception of then quality of life; GIF: physical disability grades; *Mann-Whitney´s test; **Kruskal-Wallis´s test