versión impresa ISSN 0080-6234
Rev. esc. enferm. USP vol.46 no.2 São Paulo abr. 2012
Acceso a los servicios de atención a la tuberculosis: análisis de satisfacción de los enfermos
Pedro Fredemir PalhaI; Laís Mara Caetano da SilvaII; Anneliese Domingues WysockiIII; Rubia Laine de Paula AndradeIV; Simone Teresinha ProttiV; Lúcia Marina ScatenaVI; Tereza Cristina Scatena VillaVII
IRN. Associate Professor, University of São Paulo at Ribeirão Preto, College of Nursing, WHO Collaborating Center for the Development of Nursing Research. Ribeirão Preto, SP, Brazil. email@example.com
IIUndergraduate student, University of São Paulo at Ribeirão Preto, College of Nursing, Teaching Degree Program. Undergraduate Research Fellowship from São Paulo Research Foundation (FAPESP). Ribeirão Preto, SP, Brazil. firstname.lastname@example.org
IIIRN. Master's student, University of São Paulo at Ribeirão Preto, College of Nursing, Nursing Graduate Program in Public Health. Ribeirão Preto, SP, Brazil. email@example.com
IVRN. Doctoral student, University of São Paulo at Ribeirão Preto, College of Nursing, Nursing Graduate Program in Public Health. Ribeirão Preto, SP, Brazil. firstname.lastname@example.org
VRN. Professor, Federal University of São Carlos. São Carlos, SP, Brazil. email@example.com
VIEngineer. Professor, Federal University of Triângulo Mineiro. Ribeirão Preto, SP, Brazil.firstname.lastname@example.org
VIIRN. Full Professor, University of São Paulo at Ribeirão Preto, College of Nursing, WHO Collaborator Center for the Development of Nursing Research. Ribeirão Preto, SP, Brazil. email@example.com
Tuberculosis remains a pubic health challenge. Uncountable efforts are made to control the disease, and patient treatment and accessibility to healthcare can hinder reaching a cure. The objective of this article is to analyze the satisfaction of tuberculosis patients regarding tuberculosis control services. This is an epidemiological, prospective study, using both a quantitative and qualitative approach. Data were collected using a semi-structured questionnaire. Participants included 77 patients. The quantitative data were positively evaluated, and the qualitative data permitted an understanding of the patients' experience regarding their accessibility and treatment. Aspects such as the criteria for performing Directly Observed Treatment and the proximity of the healthcare facility to the patients' residence affected their satisfaction, which implies the need to reorganize healthcare services in order to provide more appropriate care to tuberculosis patients.
Descriptors: Tuberculosis; Health Services Accessibility; Patient satisfaction; Public health nursing
La tuberculosis persiste como desafío para la salud pública. Se emprenden innumerables esfuerzos para el control de la patología, constituyéndose el tratamiento y el acceso del enfermo a servicios de salud como obstáculos para su curación. Se objetiva analizar la satisfacción de enfermos de tuberculosis en relación a los servicios que actúan en el control de la patología. Estudio epidemiológico, tipo averiguación prospectiva, de abordaje cualitativo y cuantitativo. Datos recolectados mediante cuestionario semiestructurado. Participaron del estudio 77 enfermos. Los datos cuantitativos mostraron evaluación positiva, los cualitativos permitieron comprender la vivencia de los pacientes respecto del acceso y tratamiento. Aspectos como criterios para la realización de Tratamiento Directamente Observado y proximidad del servicio al domicilio del paciente influyeron en la satisfacción, lo que marca la necesidad de reorganización de los servicios de salud para que favorezcan una atención adecuada a los pacientes de TB.
Descriptores: Tuberculosis; Accesibilidad a los Servicios de Salud; Satisfacción del paciente; Enfermería en salud pública
Tuberculosis (TB) persists as a neglected disease and a public health problem worldwide. Brazil ranks 19th among the 22 affected countries in number of cases(1), presenting a prevalence of 50 cases/100,000 inhabitants, an incidence of 45 cases/100,000 inhabitants and a mortality rate of 21/100,000 inhabitants. Brazil reported 71,100 new cases and 9,818 re-treatments to the World Health Organization (WHO) in 2009(2).
The state of São Paulo, Brazil reported 18,577 cases in 2010, of which 16,170 were new cases, 1,178 relapses, 1,062 started treatment again after abandoning it and 166 started the treatment again after the treatment failed(3). The healing rate was 77.7%, abandonment was 10.3% and death caused by TB was 2.8%(4).
The Brazilian Plan for Tuberculosis Control (PNCT)sª (2001-2005) recommended decentralizing services and introduced the possibility of interventions through cooperation between the Family Health Strategy (ESF) and the Community Health Agents Program (PACS). The work of these teams was emphasized to meet the needs of TB patients and their family members investing in the improvement of access to actions and services available for the diagnosis and treatment of TB(5).
Even though government agencies have made an effort to improve TB epidemiological indicators, there are various factors influencing access to, use and acceptance of the available services(6). These factors are related to patients (i.e. demographic, geographic, socio-economic, cultural, religious, and psychological characteristics), health workers (time since graduation, specialty, psychological characteristics, professional experience, type of practice), the organization of the Health Services (resources and their characteristics), and policies (type of health system, financing, distribution of resources, quantity, professional law and regulation), which are factors that determine patient satisfaction since these can either facilitate or hinder the achievement of goals that have been established by cities.
Access, the first stage of the journey undertaken by service users when they begin the search for satisfying a health need(7) is defined in this study as accessibility, that is, the ability of patients to obtain health care in a useful and convenient manner(8).
The way patients perceive and interpret care delivery is important information for the evaluation of the care provided by Health Services(9). The first studies in the field of health evaluation date from the 1970s and user satisfaction, which includes from the physician-patient relationship up to the quality of facilities and health workers, has been considered one of the indicators for evaluating the effectiveness of Health Services. It is therefore a way to reaffirm the principles related to individual rights and citizenship expressed in the concepts of humanization and patient rights and is also relevant for planning and managing health systems(10-11).
Satisfaction, defined as the level of congruence between the patients' expectations and their perceptions concerning care delivered, is considered to be a positive evaluation of the dimensions of health care and also a subjective perception that may be considered a reflection of reality(9). For some authors, user satisfaction has become one of the elements in the evaluation of health quality, along with evaluation of the health team and the community. It shows the need to take into account the satisfaction of patients as an objective in itself and not only as a way to produce adherence to the proposed treatment(10), which reveals the relevance of this study to verifying problems to be overcome, not only in health care delivery per se, but also in the way the health services organize care provided to TB patients.
In this way, studies addressing the evaluation of services through the measurement of the level of satisfaction among subjects concerning care delivery are sensitive indicators of quality and allow, based on the opinion of subjects about the structural aspects, process and outcomes, the planning and implementation of strategies to meet the needs and expectations of patients, improving access to services(10-12). In relation to TB, discussing issues concerning access and use of services, whether these are located at a central level or not, can be translated into improved healing rates and treatment success.
Few studies are found in the Brazilian or international literature addressing TB patients' satisfaction. In this context, this study evaluates TB patients' satisfaction concerning access and use of health services in a city considered priority for controlling the disease in the interior of São Paulo, Brazil.
This is a prospective epidemiological survey with quantitative and qualitative approaches whose axis is the satisfaction of TB patients concerning health services implementation of TB control actions.
The studied city has a health care network composed of 26 Primary Health Care (PHC) units, seven specialty outpatient clinics and 13 ESF units. TB care delivery is distributed into five health districts (North, South, East, West and Central) with fixed teams, but not exclusive to the program, composed of at least one physician, two nursing auxiliaries and one nurse(13).
TB patients older than 18 years old of age, excluding inmates, with more than one month in treatment in the TB Control Programs in the city, who consented to answer the data collection instrument and signed free and informed consent forms participated in the study. The study project was approved by the Ethics Research Committee at the University of São Paulo at Ribeirão Preto, College of Nursing (Protocol No. 0969/2008) according to Resolution 196/96.
Data were collected from December 2008 to January 2009, during which time 113 patients were under treatment. Among these, five refused to be interviewed, 12 did not meet the inclusion criteria because they were hospitalized with a severe condition, two died and 15 were not located. Therefore, 77 patients participated in the study. A semi-structured(14) questionnaire addressing the satisfaction of patients concerning health services providing TB control actions was used. The participants answered each question according to a pre-established Likert scale from zero to five. Zero corresponded to I do not know (answer the question), 1- very dissatisfied, 2 - dissatisfied, 3 - partially satisfied, 4 - satisfied, and 5 - very satisfied.
The questionnaire also included three qualitative questions for those under Directly Observed Treatment (DOT): How do you feel about DOT?; Would you refer some relative or friend to the health service(s) where you have your medical appointments to control the disease? Why?; What would you suggest to improve the treatment provided to TB patients in the health service(s) where you have your medical appointments? Fifteen TB patients who also answered the quantitative questions were interviewed to collect the qualitative information. These patients were randomly chosen until three questionnaires per health district were answered.
Data analysis was performed in two stages: in the first stage, a database was developed in Statistica 8.0, Statsoft, and tables of simple frequency, averages and graphics with confidence intervals related to each of the variables access to health services that implement TB control actions in the city.
The thematic content analysis was used to interpret qualitative data. This is a set of analysis techniques aimed to obtain systematic and objective procedures to describe the content of messages and permit inferring knowledge related to the conditions of the production/reception of messages(15).
There was a predominance of men, 54 out of 77 interviewees, and most were between 18 and 55 years old: 17 were 18 to 29 years old, 21 patients were 30 to 42 years old, 22 were 43 to 55 years old, the remaining were 55 years or older. Incomplete primary school predominated (19 individuals) in regard to level of education and in relation to occupation, 18 were unemployed, the same number of patients was self-employed, 15 reported other types of occupation and only 23 were formally employed while the remaining did not provide such information. The income of 34 patients was between one and three times the minimum wage current at the time (from R$ 415.00 to R$ 1,245.00)b.
A total of 34 patients had been undergoing treatment from one to three months and 29 from three to six months. Most (66) patients received DOT five times a week; 57 of these received the treatment at home and nine attended the health services for the treatment.
In relation to the clinical form of the disease, 59 reported pulmonary TB, 14 extra pulmonary TB and two presented both clinical forms. A total of 75 had medical consultations in the health service with a PNCT specialized team.
Figure 1 presents the levels of satisfaction found in the study. The variable with the lowest level of satisfaction (medium evaluation variable 48) is related to expenditure for transportation to attend medical consultations. The variables related to the distance from the residence to the health service, commuting time, transportation used (45 to 47), waiting time for consultations (50) and waiting time for diagnostic exams (sputum smear and X-ray) (53) presented similar averages (between 3.62 and 3.73), revealing that patients presented a regular level of satisfaction.
Availability of the service that was implementing the TB control actions for contingent or urgent consultations (variable 49) and office hours for TB patients (variable 54) presented similar averages (between 4.09 and 4.10), which means these were among the better-evaluated variables. Finally, time when DOT was provided (variable 55), place where DOT was provided (variable 56), duration of medical control consultations (variable 51) and time of the nursing consultation (variable 52) were those with the highest levels of satisfaction (4.22 to 4.32).
In relation to access, 35 patients reported being satisfied with the distance from their houses to the health service while 19 were partially satisfied. Expenditure for transportation was considered satisfactory by 16 and eight patients considered it partially satisfactory; 26 were satisfied with the type of transportation used to access the health service and 13 were partially satisfied.
Yet in regard to expenditure for transportation to attend monthly control consultations, one of the patients reported a lack of financial support, such as the supply of transportation tickets, as the following excerpt shows:
(...) There should be some financial support; support for transportation should certainly be more. (...) A social worker came here but never returned with an answer. Unfortunately, the support provided is very little (E9).
This report shows that financial support is essential for TB patients, since most of these individuals belong to a population stratum with low social and economic conditions. These conditions hinder regularity in monthly or weekly return visits (depending on adjustments implemented in the therapy) to the health services.
In relation to time spent commuting from home to the service providing TB treatment, 37 patients reported being satisfied, while 15 were very dissatisfied and 13 were partially satisfied.
The efficiency of services providing TB treatment in relation to wait time was positively evaluated, as the following excerpt shows:
I have private health care (...), sometimes I have to wait 40 minutes, one hour (in the private health care system), I'd get to the unit at 8am and she'd (physician) call me very punctually!(E12).
In addition to showing satisfaction in relation to organizational accessibility, the excerpt shows a context relatively common in health services linked to the Brazilian Single Health System (SUS), which is the responsibility to provide therapy and monitor TB patients in a timely manner.
Time spent in medical control consultations is considered satisfactory by 41 patients and as very satisfactory by 30 patients while time spent in nursing consultations is considered satisfactory by 35, very satisfactory by 32 and partially satisfactory by six patients.
A total of 33 patients were satisfied in relation to the performance of exams (sputum smear, blood and X-ray) while 16 were very satisfied, 14 partially satisfied and eight were dissatisfied.
The availability of services providing TB control actions for contingent or urgent consultations was considered satisfactory by 24 of the patients and very satisfactory by 20 patients while 12 patients did not know. Despite these results, patients reported some difficulties:
It's difficult for me because my son comes in a hurry (...) takes me to the service (...) goes back to work, he works at night, during the day, it's complicated, because there is one (unit) here nearby, very close... and I couldn't, can't ...(attend the consultation in the nearby unit) (E7) revealing a difficulty accessing the health services.
In relation to the services' office hours, 45 patients were satisfied, 19 very satisfied and seven partially satisfied. Wait time was considered satisfactory by 35 patients and very satisfactory and partially satisfactory by the same number of patients (15); seven patients were dissatisfied and five very dissatisfied.
In relation to the time when DOT is performed, one of the patients reported:
They used to come earlier, then they changed things with the personnel, but it's ok (...) we manage to attend any appointment we may have before the health workers' visit (E5).
The report reveals that patients always adjust their routine to that of the service and it is their responsibility to wait at home for the professionals who administer DOT.
Coupled with this, the reports also reveal the patients' desire not to be recognized as TB patients by the community, which reinforces the stigma of the disease within the population.
The bad thing about them coming is the neighborhood...people are very ignorant, loaded with prejudice... I think it's bad that they come here every day(E7).
Another fact that encourages the satisfaction of patients is the communication process that takes place between them and the health services:
(...) I got really upset (...) I take medicine home for the work holidays that precede weekends. There was a holiday right before the weekend and they did not inform me (...) I came here and it was closed. Then, I didn't have medication to take. (...) It was a lack of communication, they could have called me. I went after the medicine. I went to (unit 1), to (unit 2), explained my situation, through the hell of bureaucracy, it was a negative point (E14).
This report shows there is not a clear understanding between patients and the health services as the first depend on the health services' organizational culture. These processes do not encourage patients to feel cared for and respected; rather they lead to dissatisfaction and, as a consequence, increase the risk of patients abandoning their treatment.
Evaluating the satisfaction of TB patients based on the limitations of services enables us to qualify supply, improve the reliability of health services and adherence of patients to services as shown in the literature, which shows the relation between satisfaction and treatment adherence(16).
Misconceptions concerning care delivery developed during previous experiences, as well as aspects related to the organization of health services, which often do not provide care consonant with the needs of patients, socioeconomic aspects, expenditures related to transportation, distance between the patients' residence and the health unit, and the impossibility of missing work, are factors related to accessibility reported in various studies with different populations and which can affect the satisfaction of patients, and the search and use of services(17). Unsatisfactory previous experiences with the organization of health services, with the unsuitability of services supplied in relation to the needs of patients, socio-economic aspects, expenditures related to transportation, distance between the patients' residence and the health unit may inhibit the patients' access.
Adherence to treatment, in terms of attending medical control appointments or complying with therapy, is essential for treatment success and consequent cure, consequently breaking with the vicious cycle of TB.
This study reflects what has been reported by other studies addressing TB, that is, most interviewees were men, which confirms that a greater incidence of the disease is observed among men. In relation to age, the results also show a greater incidence of the disease among individuals 18 to 55 years old, that is, an economically active period of life, affecting populations that meet the needs of the job market.
The participants had a relatively low income, which is consonant with studies that present TB as a public health problem mainly because it mostly affects the population that is of a productive age, harming citizens in situations of social vulnerability(18).
The high rate of TB patients undergoing DOT at home (66) shows there is agreement with the objectives of PNCT that seeks to reduce treatment abandonment(19), which in turn may reveal a political commitment to this modality of treatment even though there is a need to adapt to the specificities of each patient in their social context.
Geographic accessibility during treatment and monitoring was positive according to patients. Time spent during commuting from home to the health service was evaluated differently, showing the importance of providing care in the unit nearest to the patient's home. It is important to take into account that the chronic condition and physical frailty caused by the clinical manifestations of TB hinder making trips to the unit, since patients have to count on public transportation or help from others. The socio-economic condition of most of TB patients and marginalization in society is a barrier to patients' ability to pay for the public transportation used to access the health services. It is possible for patients to obtain free transportation tickets provided by the program for the entire period of treatment. However, obtaining such a benefit is considerably difficult because the law gives priority to physically impaired patients(20).
In general, transportation (car, bus, motorcycle) presented partially satisfactory and satisfactory evaluations since some patients have a vehicle and the partially satisfactory evaluations may have been concentrated among those who depend on public transportation to access the health service. It is important to note that some patients need to use more than one mode of transportation to access the service and bus tickets are not always provided.
In relation to socio-organization accessibility, the availability of health services for contingent or urgent consultations received positive evaluations, showing the actions of the services in situations in which patients present intolerance to medication therapy or experience worsening of symptoms. The evaluation of patients concerning wait time for medical control appointments, access that defines the satisfaction of patients with health services(21), was heterogeneous and show that factors that affect the dynamics of life may receive a more critical evaluation since long wait times may lead patients to lose their work day and other appointments(17).
The health services frequently present many obstacles that hinder the first contact with patients such as the times of consultations, access to consultations, and time spent in the waiting room. A study conducted in the same city in family health units revealed that the evaluation of the service's office hours was positive but reports showed that patients expected to have office hours extended to other shifts(22).
The decentralization of health actions related to TB requires us to rethink the organization of health services, taking them beyond individual care and instead focus on the involvement, interest and commitment to work and the community, in addition to the adoption of technologies that include processes of reception, bonding, and integral care in health actions.
Time spent during medical and nursing consultations presented high levels of satisfaction. Most patients reported satisfaction with consultations during the interview because the consultations take more than ten minutes and also because they are asked during the consultations about the dynamic of their lives and how the signs and symptoms of the disease have developed during treatment. This result corroborates other studies that report that the duration of consultations is a factor that increases the satisfaction of patients with care delivery(17).
Exams such as sputum smears and X-rays in the context of this study are also performed in some health units. Twenty-two patients evaluated wait time for these procedures as partially satisfactory and satisfactory. The PCT office hours were also positively evaluated, even though they match business hours and do not include special hours for those who work. Such satisfaction may indicate that patients are welcomed by the service and the specialized team shows availability to meet the needs of TB patients.
Studies that evaluate the satisfaction of patients are permeated by a complex interaction of elements (related to the social characteristics of users and health care delivery). This evaluation may be avoided by patients due to a fear of losing access to the health services and also due to a relationship of dependence established with health workers. In uneven contexts where one faces difficulty meeting health needs, the simple fact of being cared for, regardless of how much effort is required, may result in satisfaction. Even though the interviews were held in the patients' residences or private rooms in the health services' premises, a more detailed investigation is required to verify the factors influencing the critical evaluation of care provided to TB patients.
This study's results showed the importance of using both quantitative and qualitative data to better understand the quality of services in the context of TB care delivery. The quantitative analysis showed a predominantly positive evaluation in relation to care delivery while the qualitative analysis deepened evaluation and showed a more accurate opinion of TB patients in relation to their experience.
Some weaknesses in the health services, such as delay in diagnosing the disease, the dependence of patients on others and means of transportation to access the services related to the distance between the services and the patients' residences, deficient social support, and the stigma of the disease reinforced by a fear of receiving DOT at home, were presented as barriers to treatment adherence and the effectiveness of TB treatment.
Given these results, we find that aspects such as wait time, criteria for DOT and proximity of health services to the patients' residences are hugely important to patient satisfaction in relation to care delivery, which requires the reorganization of services and taking into account not only the achievement of high coverage as shown in the study, but also the way health services are organized to provide appropriate care for and monitoring of TB patients.
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Financial Support: São Paulo Research
Foundation (FAPESP) Process 2009/08861-0 and Global Fund to Fight Tuberculosis
Brazil – Foundation for Scientific and Technological Development in Health
(FIOTEC) Contract BRA 506602T.
a Acronyms in Portuguese.
b Approximately USD 215.14 to USD 645,21 according to the exchange rate at the time.
Financial Support: São Paulo Research
Foundation (FAPESP) Process 2009/08861-0 and Global Fund to Fight Tuberculosis
Brazil – Foundation for Scientific and Technological Development in Health
(FIOTEC) Contract BRA 506602T.