Barriers to TB care for rural-to-urban migrant TB patients in Shanghai: a qualitative study
Corresponding Author Xiaolin Wei, 2-1104, 5 Fanyu Road, Shanghai, China 200052. E-mail: email@example.com
Objective To understand barriers to tuberculosis (TB) care among migrant TB patients in Shanghai after the introduction of the TB-free treatment policy which has applied to migrants since 2003, and to provide policy recommendations to improve TB control in migrant populations in big cities.
Methods In-depth interviews were conducted with 34 migrant patients who registered on the Shanghai TB programme as new bacteria positive pulmonary TB cases. Patients were purposively selected across six districts of Shanghai to give a balance of gender and TB treatment phase.
Results Financial constraints were reported as the biggest barriers to TB service among migrant patients. Many migrant patients experienced high medical costs both before and after their TB diagnosis. The government free treatment policy only covered a small fraction of patients’ total costs. However, respondents tended to stay in Shanghai for treatment because their families were in Shanghai, they were more confident with the quality of medical care there or they felt they could not earn cash at home. Migrant patients had a limited knowledge of TB and the free TB treatment policy, and reported being laid off from work or avoided after having TB.
Conclusions Health system problems caused the biggest barrier to migrant patients’ access to TB care. The free treatment policy alone has little, if any, effect in reducing migrant patients’ financial stress: it is also essential to provide social welfare, including living subsidies, for poor migrant TB patients.
Obstacles aux soins TB pour les patients migrants des zones rurales vers les zones urbaines à Shanghai: une étude qualitative
Objectif: Comprendre les obstacles au traitement de la TB chez les patients TB migrants à Shanghai après l’introduction de la politique du traitement gratuit de la TB appliqué aux migrants depuis 2003, et fournir des recommandations de politique pour améliorer la lutte contre la TB dans les populations migrantes dans les grandes villes.
Méthodes: Des entretiens approfondis ont été menés avec 34 patients migrants inscrits dans le programme TB de Shanghai comme nouveaux cas de TB pulmonaire à microscopie positive. Les patients ont été intentionnellement sélectionnés dans six districts de Shanghai afin d’équilibrer pour le sexe et la phase de traitement de la TB.
Résultats: Les contraintes financières ont été rapportées comme étant les principaux obstacles aux services TB chez les patients migrants. Beaucoup de patients migrants ont subi des frais médicaux élevés avant et après leur diagnostic de TB. La politique de traitement gratuit du gouvernement ne couvrait qu’une petite fraction de l’ensemble des coûts des patients. Toutefois, les répondants avaient tendance à rester à Shanghai pour le traitement parce que leur famille y résidait et ils avaient plus confiance en la qualité des soins médicaux sur place ou ils estimaient qu’ils ne pourraient pas gagner de l’argent s’ils retournaient chez eux. Les patients migrants avaient une connaissance limitée sur la TB et la politique de traitement gratuit de la TB, et déclaraient avoir été licenciés de leur travail ou d’avoir étéévités lorsqu’ils ont contracté la TB.
Conclusions: Les problèmes du système de santé causaient le plus grand obstacle à l’accès aux soins TB pour les patients migrants. La politique de traitement gratuit seule a peu ou pas d’effet sur la réduction de la charge financière des patients migrants; il est également indispensable de procurer une protection sociale, y compris des subventions sur le coût de la vie, pour les migrants pauvres malades de TB.
Barreras para el cuidado de TB entre pacientes tuberculosos emigrantes rurales-a-urbanos en Shanghai: estudio cualitativo
Objetivo: Entender las barreras para los cuidados de la TB entre pacientes tuberculosos que han migrado a Shangai, después de la introducción de la política de tratamiento gratis para TB que se está aplicando a emigrantes desde el 2003, y proveer recomendaciones políticas para mejorar el control de TB entre la población migratoria en grandes ciudades.
Métodos: Entrevistas a profundidad conducidas entre 34 pacientes emigrantes que se registraron en el programa de TB de Shangai como nuevos casos de TB pulmonar positivos para bacilos. Los pacientes fueron a propósito seleccionados de seis distritos diferentes de Shangai, con el fin de que hubiese un balance de género y fase de tratamiento de la TB.
Resultados: Se reportó la limitación financiera como la mayor barrera a los servicios de TB entre pacientes emigrantes. Muchos pacientes emigrantes experimentaron altos costes médicos, tanto antes como después de su diagnóstico de TB. La política gubernamental de tratamiento gratuito solo cubrió una pequeña fracción del coste total en el cual incurrían los pacientes. Sin embargo, entre aquellos que respondieron a la encuesta, se observó una tendencia a quedarse en Shangai para recibir el tratamiento, porque era en Shanghai que estaban sus familias, tenían más confianza en la calidad del cuidado médico recibido en Shangai o sentían que no podían ganar dinero en metálico para volver a casa. Los pacientes emigrantes tenían un conocimiento limitado sobre la TB y la política de tratamiento gratuito de la TB, y reportaron haber sido despedidos del trabajo o evitados por tener TB.
Conclusiones: Los problemas en el sistema sanitario fueron la principal barrera al acceso de pacientes emigrantes a los cuidados sanitarios para la TB. La política de tratamiento gratuito tiene poco efecto, si es que tiene alguno, en la reducción del estrés financiero entre emigrantes: también es esencial proveer asistencia social, incluyendo subsidios, a los emigrantes pobres con TB.
Migrants pose a major challenge to tuberculosis (TB) control in both developed and developing countries (Enarson & Billo 2007). Generally, people seeking a better salary and livelihood move from countries or areas with high rates of TB to those with lower rates. This has resulted in a steady increase of new TB cases from immigrants and refugees in developed countries such as Canada and Australia, where the local TB incidence is low (Pang et al. 2000; Watkins et al. 2002). A similar challenge is also seen for internal migrants moving from rural to urban areas in China (Zhang et al. 2006; Wang et al. 2007a, 2008; Long et al. 2008) China has experienced rapid economic development over the last 30 years; however, this development has disproportionately benefited those who live in urban areas. The per capita disposable income of the urban residents is more than three times that of their rural peers (National Institute of Statistics and Census 2006). It is estimated that over 100 million rural Chinese have moved to urban areas (Roberts 2005). Most rural-to-urban migrants are unskilled and work in marginalised sectors with unstable incomes (Guo & Iredale 2004). TB is more prevalent in rural areas (319/10 000) than urban ones (198/100 000) (National Technical Steering Group of The Epidemiological Sampling Survey 2002); therefore, internal migrants are an increasing threat to TB control in China’s urban areas.
Shanghai is the largest city and the economic locomotive of China. In 2005, as well as 14 million local residents, Shanghai had nearly 5 million migrants who had been living in the city for more than 3 months (SHANGHAI STATISTIC BUREAU 2005). Shanghai witnessed a steady increase of migrant TB cases from 2647 in 1998–3091 in 2005, while the proportion of reported new TB cases who were migrants increased by 9.4% each year from 1998 to 2005. Although migrants consisted of only 26% of the total population, new TB cases among migrants accounted for 47% of all TB cases reported in Shanghai (Shen et al. 2006). Similar results have been reported in other big Chinese cities (Liao 2006; Wang et al. 2007b): for example Beijing has seen a nearly fivefold increase of migrant TB patients from 1993 to 2005 with migrant TB cases accounting for more than one-third of the total cases in Beijing in 2005 Zhang et al. 2006).
However, the treatment outcomes of migrant TB patients are poor in China’s big cities. In 2005, the cure rate of bacteria positive patients was 55% in migrants compared with 89% in local residents of Shanghai. Nearly half of Shanghai’s migrant TB patients did not complete their treatment (Shen et al.2006). Similar results were reported in Beijing where in 2004 the cure rate among the smear-positive migrant population was only 49%, with a default rate of 41%, compared with a cure rate of 88% among local residents (Zhang et al. 2006).
Migrants face a number of environmental, cognitive and socio-economic barriers in accessing TB care (Wyss & Alderman 2006). China has a household registration (hukou) system, which is based on birthplace and official workplace for those working in the formal sector. Only permanent local residents are entitled to social welfare, which includes medical insurance, unemployment insurance and pension. Migrants do not have the hukou; therefore, they are not covered by any medical insurance or unemployment insurance (Chan et al. 1999; Bonnin 2000). Previously, migrants were not eligible for free TB services provided by the government, and this was identified as one of the contributors to poor treatment results (WHO 2007). As a result, in 2003, Shanghai, as well as many other cities in China, expanded the free TB DOTS programme to migrants, and a decline in default rates by 4% was reported for 2004 in Minghang District of Shanghai (Ni et al. 2005). This study aims to understand the barriers to TB care from the perspective of migrant TB patients under the new era of free TB treatment, and to generate policy recommendations for TB control in migrant populations for big cities in China and other similar settings.
Tuberculosis services in Shanghai are provided through a semi-vertical system consisting of the TB departments at the Centres for Disease Control (CDCs) and the TB clinics in designated hospitals. Designated hospitals are public general hospitals at district level (Shanghai has 19 districts in total). According to China national policy (MoH 2005), all health providers including other general hospitals are responsible for referring TB patients and suspects to the designated hospitals for TB diagnosis and treatment. Shanghai has several special TB hospitals which are meant to treat complicated cases such as extra-pulmonary TB or multi-drug resistant TB. TB departments in the CDCs are responsible for public health services including health education, reporting, drug supply, training and quality supervision.
The criteria for TB diagnosis and treatment in Shanghai follow the national TB control guideline issued by the Ministry of Health (MoH 2002) in compliance with International Union Against TB and Lung Disease guidance. Free treatment is provided to TB patients who are registered in the public TB control system regardless of their hukou status. The free treatment policy covers costs of the whole course of first line anti-TB drugs, TB sputum smears and cultures, X-ray examinations, and blood and liver function checks. Patients have to pay their medical bills and are reimbursed at the end of their treatment. The policy does not cover hospitalisation fees, second line anti-TB drugs and any other drugs or medical examinations. The value of the free treatment policy in Shanghai is RMB1300 per patient.
During the 2-month intensive phase of treatment, TB patients are required to visit the TB clinic in a designated hospital every month to receive their anti-TB drugs; in the subsequent 4-month continuation phase, they must visit there once a month to replenish their drugs. Doctors at the community health centres are responsible for contacting patients regularly to ensure they complete their treatment.
A migrant patient is defined here as one who does not have the Shanghai hukou” at the time of his/her TB diagnosis. In-depth interviews were conducted with 34 migrant TB patients who were registered as new sputum bacteria-positive pulmonary cases without serious complications such as diabetes or cardiovascular disease. Participants were selected from six districts of Shanghai, ranging from the outskirts to the central areas of Shanghai. This reflected characteristics of migrants living in different parts of the city, as migrants in the outskirts often work in large industrial workshops while migrants in the city centre usually work in restaurants, saloons, housekeeping or running small businesses. Purposive sampling was employed to select four to six-migrant TB patients in each district, and to ensure the majority were in the intensive phase as the statistics showed that most default happened in this period. Migrant patients were identified from TB registers available at the TB Department of Shanghai CDC. Migrant patients were first contacted by their community doctors via telephone regarding the purpose of the study, the time and venue. Only those who gave verbal informed consent were invited for interview.
Six researchers from the Shanghai TB Research Centre were trained in qualitative interview skills. In-depth interviews were conducted in TB clinics or in community centres at each patient’s choice. Interviews were conducted in Mandarin Chinese and lasted 30–45 min. Interview guidelines included questions regarding patients’ social economic conditions, their care-seeking pathway for TB, costs before and after their TB diagnosis, TB knowledge and its source, patient perceptions on barriers to TB care and their willingness to be treated in Shanghai. Data were obtained in July 2007.
Ethical approval was given by the Shanghai TB Research Centre at the Shanghai Centres for Disease Control. Informed consent was obtained from all participants.
Interviews were noted and recorded, then transcribed verbatim into Word files. Thematic framework analysis was employed (Ritchie & Lewis 2003). Two researchers thoroughly read through all transcripts, and listed recurring viewpoints relevant to elements of the interview guidelines. Codes were developed based on relevant viewpoints emerging from the data. All transcriptions were then indexed against the coding system. Interpretations were given for each coded group of viewpoints. Codes were merged into larger categories, and major themes identified. All analysis was performed in Chinese and the final results were translated into English.
Fifty new bacteria-positive migrant TB patients were contacted and 34 were interviewed. Of those who did not participate in the interviews, two refused, 10 said they were busy and four confirmed but did not show up. Of the 34 interviewees, 23 were in the intensive phase of treatment; the rest were in the continuation phase. The majority did manual work or ran a small business such as selling vegetables or collecting garbage (Table 1). Only three had insurance – this covered work-related illness only. Their average monthly income was much lower than that of a local Shanghai resident (RMB 2300, US$329; National Institute of Statistics and Census 2006). In the following paragraphs we report four major themes identified in the research. Pseudonyms are used to preserve patients’ and institutes’ anonymity.
Table 1. Basic demographic characteristics of the interviewees
| Married with spouse||7 (47)||15 (79)||22 (65)|
| Never married||6 (40)||4 (21)||10 (29)|
| Divorced and widowed||2 (13)||0 (0)||2 (6)|
| ≤6 years, primary school||7 (48)||7 (37)||14 (41)|
| 7–9 years, middle school||5 (33)||7 (37)||12 (35)|
| >9 years, high school and above||3 (20)||5 (26)||8 (24)|
| Manual work or small business||13 (87)||9 (47)||22 (65)|
| Management work||2 (13)||1 (5)||3 (9)|
| No work||0 (0)||9 (47)||9 (27)|
|Having any medical insurance or sick leave insurance|
| Yes||2 (13)||1 (5)||3 (9)|
| No||13 (87)||18 (95)||31 (91)|
|Monthly individual disposable income|
| Mean (RMB)†||1044||1294||1184|
|Time in Shanghai|
| ≤3 months||3 (20)||2 (11)||5 (15)|
| 4 months to 1 year||1 (7)||3 (16)||4 (12)|
| 1– years||4 (27)||3 (16)||7 (21)|
| >3 years||7 (47)||11 (58)||18 (53)|
Financial pressure during TB care
The majority of respondents reported that they had lost their jobs or were not able to work due to illness, so had no income. In the meantime, they had to pay high medical costs. Furthermore, living costs were much higher in Shanghai than their home provinces. Most said they had to rely on savings or their spouses. More than half reported having borrowed money.
High medical costs were reported while seeking TB diagnosis. Ten of the 34 respondents visited their community health centre or district general (TB designated) hospital shortly after TB symptoms arose, and they were quickly referred to TB clinics. However, the majority had experienced serious delays between the onset of illness and their TB diagnosis. The delay ranged from a period of 3 months–1 year. Some self-treated with drugs from pharmacies either because (1) they did not perceive the illness to be serious, (2) they were not permitted to visit hospitals during work time (clinics operate only during office hours), or (3) they were too busy. Many reported that they had been treated in a number of hospitals. Patient Cui reported: ‘I had cough and a fever of 39 °C. I went to ZT hospital, and was treated as pneumonia and given an intravenous injection. It cost me RMB 4000 (US$571). I also went to FV Hospital for a CT scan ... I was then hospitalised for 8 days in C [the designated hospital]…’.
All interviewed patients were new bacteria-positive patients, which meant that their TB diagnosis and treatment should have been straightforward. However, only a small number of patients reported a simple process of obtaining a diagnosis of TB with low pre-diagnosis costs of RMB 150–200 (US$ 21–29), indicating good coordination between the general hospitals and TB designated hospitals. However, most (25 out of 34) reported having spent RMB 1000–2000 (US$ 143–286) before receiving a diagnosis of TB, costs which were not covered by the free treatment policy. A large number reported high medical costs of RMB 2000–30 000 (US$ 286–4286) and unnecessary hospitalisation in TB special hospitals, whose fees were not covered by the free treatment policy.
During TB treatment at designated hospitals, most patients reported an expenditure of RMB 500–1000 (US$ 71–143) per month, mostly for ‘function-improving’ drugs such as liver function protection drugs and repeated X-ray exams. However, there is no strong medical evidence for auxiliary drugs and exams. The total cost was RMB 3000–6000 (US$ 429–857) for standard TB treatment lasting 6 months. There was little financial relief since only RMB 1300 (US$186) was covered from the free treatment policy, and that only after treatment was completed.
Limited effect of the free treatment policy
In Shanghai, patients need to keep all their medical receipts for reimbursement from the free treatment policy at the end of their treatment. Most migrant patients did not know about the policy before they visited a TB doctor. Some thought the policy might be helpful, because it would eventually ease their financial burden, but all respondents were concerned that the reimbursement process was too complicated, making the outlook unpredictable: as one said ‘I cannot see the future’. Patient Wen said, ‘the free treatment policy means I need to pay all the medical costs first. It does little to release my current financial burden in treating TB. It would be much better if I get reimbursed every time [I see a doctor].’ Some even doubted the process: Patient Liu commented, ‘The reimbursement process is slow. I do not know if there will be any problems at the end’.
Preference to be treated in Shanghai
Respondents gave various reasons for staying in Shanghai for their TB treatment. Some patients had been in Shanghai with their family for years, and their relatives in Shanghai provided help during illness. Many doubted the quality of medical service at home. For example, Patient Li said, ‘I never thought of going home for treatment. Shanghai has much better health facilities … I had a relative who visited hospitals at home, and he ended up in Shanghai’. Some did not want to leave because they were afraid they would not be able to get any income at home and/or their travel back home was too expensive. Patient Han said, ‘I did not consider going home. In Shanghai I can work again after I am cured. At home I can only be a farmer… The bus tickets [from Shanghai to home] are too expensive’. Patient Zhang said, ‘I am renting a fish farm and have been here for years. It will be a big economic loss to me if I give up’.
However, a small number of patients reported that they considered going home for treatment because the living and treatment costs were lower at home and their family members could take care of them.
TB treatment at the community level
The majority reported that they never missed a dose of anti-TB drugs. Only two reported stopping treatment because of serious side effects. All patients said they took anti-TB drugs by themselves at home and no one observed them taking the drugs. Many reported that the community doctors contacted them regularly via home visits or telephone. Patients commented positively on their doctor’s contacts: ‘The community doctor visits me once a week or 2 weeks. She tells me I should feel positive about the treatment, and I can get reimbursement after six months’. However, some patients expressed concerns about being visited at home and they preferred telephone contact: ‘I do not want community doctors to visit me regularly. Others will know that I am sick and have TB. My landlord will expel me if he knows [I have TB]’.
The study found that the migrant patients interviewed in Shanghai regarded financial barriers as their biggest concern in accessing TB care. Several factors contributed to their financial stress. First, migrants do not have the local household registration, so they are excluded from local medical insurance. Second, many interviewees reported being treated in general hospitals for a long time and being almost financially depleted by the time they were diagnosed with TB. In a quantitative study, Wang et al. (2007a) reported 28 days delay for TB treatment in Shanghai migrants(Wang et al. 2007b), which was longer than delays reported in general populations of China (MoH 2006). Long et al. (2008) reported that migrants had longer diagnostic delay than local residents in Chongqing. The prolonged diagnosis delay is especially worrisome because TB is more transmissible in this period (Storla et al. 2008). Third, many migrant patients interviewed reported high medical costs after TB diagnosis and some were even hospitalised though it was unlikely to be medically necessary. Fourth, to make things worse, the majority lost their jobs or could not work during illness, while at the same time they had to pay high living costs in Shanghai.
Health system issues should be reviewed. Under the current fee-for-service system, China’s public health facilities rely heavily on patient medical fees for their profits Bloom & Gu 1997; Liu 2004). Hospitals have a financial incentive to keep patients longer than necessary and to over-prescribe unnecessary drugs/examinations, resulting in high costs and long diagnostic delays for TB patients in China(Tang & Squire 2005; Xu et al. 2006; Liu et al. 2007; Yan et al. 2007; Zhang et al. 2007). Many migrant TB patients we interviewed spent three to five times their annual income for TB treatment. This was echoed by other studies in China for migrant TB patients (Wang et al. 2007a, 2008; Long et al. 2008) and for general populations(Meng et al. 2004; Zhan et al. 2004; Xu et al. 2006). Under the Shanghai TB control system, general hospitals have to refer TB patients and suspects to TB clinics located in designated hospitals. Referrals have been strengthened since 2005, when the Nationwide Internet-based Communicable Disease Reporting System was launched and the national policy of strengthening links between hospitals and TB facilities was enacted (MoH 2005). This enabled China to achieve 70% case detection by 2006 (Wang et al. 2007b). However, our study indicated that though TB patients were finally referred, they may have been financially depleted before the referral. There was also a problem within TB designated hospitals: several patients reported being hospitalised in other departments of the designated hospital. Although we did not collect information regarding the patients’ other illness, it is unlikely that hospitalisation was necessary for new TB cases.
The free TB treatment policy did not relieve much of the interviewees’ financial burdens. They did not have any knowledge of the free treatment policy until they were told upon diagnosis. Nor did they have much TB knowledge, a finding also reported from other cities (Li et al. 2006; Long et al. 2008). Poor knowledge of TB prevents migrant patients voluntarily seeking TB care. Most migrant patients interviewed were almost financially depleted when they were diagnosed with TB due to high medical costs and loss of jobs. Under the current regulations, patients have to pay all medical costs first and retain the receipts for reimbursement at the end of their 6-month treatment. Thus the free treatment policy made no difference to patients at the time when they needed it most: many patients reported they suffered most financially at the beginning of their treatment. In our study, not all patients completed their treatment; thus, they were not able to receive reimbursement. Furthermore, average medical costs in our non-representative sample were around RMB 4000 (US$ 571) before TB diagnosis and RMB 3000 (US$ 429) during TB treatment, yet a TB patient receives only RMB 1300 (US$ 186) from the free TB treatment policy. By contrast, local residents have health insurance which covers the cost from the outset.
Migrant patients reported strong stigma associated with TB. Many reported being laid off from work or avoided by colleagues. Most were afraid of being visited regularly by community doctors for fear it might reveal their TB status. TB stigma is often assumed to be due to its air-borne transmission and close link with poverty (WHO 2005). Although migrants in our study did not report stigma as a major barrier, echoing a study in Chongqing (Long et al. 2008), our study reveals the weakness of laws to protect the employment of migrants during their illness. This issue needs to be further explored in a more focused study.
Many migrant TB patients reported that they tended to stay in Shanghai for TB treatment. This is due to the high accumulation of health resources in large cites such as Shanghai. However, in reality around half migrants defaulted during their treatment (Shen et al. 2006; Zhang et al.2006). Those who defaulted rarely registered themselves again in their home provinces (Sleigh 2007; Wang et al. 2007b). It is imperative to provide basic social welfare packages (including medical and sick leave pay) to migrants to complete their TB treatment in Shanghai as they wish. The foundation of the hukou based social welfare should be changed to treat every citizen equally throughout China, as the NHS does in the UK. The Shanghai government is piloting providing health insurance to a group of migrants and financial aid to poor TB migrants. The Communicable Disease Research Consortium (COMDIS) is working with the Shanghai CDC to pilot this policy in one district of Shanghai.
The qualitative nature of this study has to be borne in mind. The study did not include migrant patients who were diagnosed in Shanghai but returned home for treatment, as no valid contacts were left and tracing migrants from another province was infeasible. Use of a small and purposive sample means findings are not representative of migrant TB patients in Shanghai. Rather, findings illustrate opinions and experiences of those who were interviewed, and are used to identify areas of potential concern that need to be investigated further. High costs before or after TB diagnosis clearly affect some patients, and need to be addressed: the scale of this problem is as yet unknown, although it is reasonable to assume it is considerable. This qualitative study will be used to help design a quantitative survey to statistically confirm hypotheses arising from the findings.
Our study has shown that health system problems caused substantial barriers for migrant patients accessing TB care. Migrants were not covered by medical and unemployment insurances. The profit-driven operational style of public general hospitals resulted in high patient costs and long delays of migrant patients before TB diagnosis. The free treatment policy has little, if any, effect in reducing migrant patient financial stress. It is crucial to provide social welfare to migrants, including cost of living subsidies for poor migrant TB patients.
This document is an output from the Communicable Disease Research Consortium (COMDIS), a project funded by the UK Department for International Development (DFID) for the benefit of developing countries. The views expressed are not necessarily those of DFID. We thank colleagues from the Centres for Disease Control in Shanghai who were involved in the data collection process.