Edited by: Delia Goletti, Istituto Nazionale per le Malattie Infettive Lazzaro Spallanzani (IRCCS), Italy
Reviewed by: Leonel Lagunes, Vall d'Hebron University Hospital, Spain; Frédéric Méchaï, Hôpital Avicenne, France
This article was submitted to Infectious Diseases - Surveillance, Prevention and Treatment, a section of the journal Frontiers in Medicine
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
According to the latest global report on tuberculosis (TB) published by the World Health Organization (WHO), there were up to 10 million cases of TB and 1.3 million TB-related deaths in 2017 (
One of the aspects that the latest WHO report highlighted is that, in order to achieve the reductions in incidence necessary to meet the milestones set for 2030, the socio-economic factors influencing the TB epidemic must be addressed (
In the present manuscript we aimed to study TB in Barcelona city from an anthropological point of view and to devise a series of specific proposals to implement a patient-centered approach; applicable to our setting but which could be extrapolated to other cities with similar epidemiological situations.
We carried out a qualitative study using an anthropological approach in Barcelona in the period between November 2017 and November 2018. The field work was divided into three phases. First phase was floating observation of 40 patients and 8 health professionals: initial phase of prospecting, without intervention. The second phase was participatory observation: real follow-up including informal conversations and unstructured interviews with patients diagnosed with TB (
The study was conducted within the STAGE-TB project (registered at
Our qualitative study confirmed the high prevalence of social exclusion associated with this disease. In Barcelona, the paradigmatic patient is an immigrant with difficulties entering the social and working environment of the region and with language-related communication problems. The social exclusion associated with TB is determined by both the personal, family and legal status of the individual (whether native or migrant) as well as by the added problem of the disease itself, which given the resulting chronicity, associated disability and hospitalization (when required) acts as a barrier (not always symbolic) that hinders or prevents the patient from finding work, having a place to live and establishing social relationships. Healthcare workers recognize well-situations of poverty, malnutrition, social exclusion, and fragility at a mental health level; but there are no established circuits or protocols that allow addressing appropriately these situations.
Moreover, hospitalization or the termination of any activity considered normal for the individual causes the patient to feel trapped in limbo, which can hinder their reintegration into the environment, especially the working environment. In addition, there are two cultural perceptions around the disease: in stabilized environments, TB is associated with pathological social states and is therefore seen as an anomaly, whereas in less structured social environments, TB is perceived as a consequence of the pervading conditions. The social exclusion (and socio-economic factors in general) associated with the illness, as well as the duration of medical treatments, also has an impact on the institutions and health personnel that these patients attend, and they are often not aware of the quality of the service they receive.
Depending on the different geographical origins of the patients, there is also a cultural shock between the patients and their new social framework (which also includes the area of healthcare), since the disease brings individuals into contact with cultural realities to which they are not accustomed, mainly due to differences in customs and gender perspectives. This generates isolation in these patients and means that, although they tend to recognize the seriousness of the illness (and its associated medical problems), this perception does not always translate into healthy behaviors. In order to minimize this cultural shock and its impact on individuals, the design of activities in which patients can participate is often necessary. However, the offer is limited and must take into account the cultural point of view.
Based on our observations, we have devised a series of specific proposals to implement a patient-centered approach, applicable to Barcelona and which could be extrapolated to other cities with similar epidemiological situations. With these interventions we aim to a) directly ameliorate TB patients well-being in any diagnostic/healthcare management center and b) at more general level, to increase TB detection and treatment adherence. These proposals are set out in
Specific interventions proposed to implement the patient-centered approach to TB care.
In diagnostic or treatment centers | Scheduled activities (leisure, health, training, psychological support) available to TB patients, adapted from a cultural point of view (gender, age, religion, customs, etc.), performed in suitable spaces, in-house or in neighborhood, or city facilities (libraries, museums, swimming pools, gyms) thanks to collaboration agreements. | For patients: To increase patient well-being and mental balance, favor their integration into society, establish a bond with the city, minimize culture shock, decrease para/illegal behaviors. For society in general: increase awareness. For centers: to offer a more complete portfolio covering the patient-centered approach. |
Regularly scheduled institutional group sessions with both patients and staff attending. | Two-way flow of information; to reveal problems, doubts and fears; increase treatment adherence. | |
Social mentoring activities, in-house or outsourced, thanks to collaboration agreements with other institutions or NGOs. | To accelerate and increase reinsertion, emancipation and adherence to treatment, while reducing isolation and unhealthy habits, in the framework of interventions to generate, reconnect or strengthen the bonds of the individual with society. | |
In high TB incidence neighborhoods | Information tools (i.e., leaflets, infographics, videos), in different languages, of universal access, patients coauthoring. Two versions: one for patients and their relatives, another one for the general population. | For patients: to increase treatment adherence, bond with healthcare staff and increase patient confidence. For relatives: to resolve doubts and give them tools to handle day-to-day problems. For the general population: to increase awareness, to promote early diagnosis. |
Conferences, seminars, informal talks on the disease, its management and its impact; patients involved; conducted using community infrastructures and spaces: schools, civic centers, libraries, museums, places of worship, leisure and health facilities (gymnasia, swimming pools, shopping centers). | To increase awareness of the presence of the disease in the environment; increase health literacy; reduce fears and resolve doubts. | |
Continuing education for healthcare professionals on TB screening, diagnosis, management and treatment; carried out periodically; i.e., refresher courses, infographics, etc. | To increase awareness of the presence of the disease and reduce diagnostic delay; to refresh and update information on TB management. | |
Creating interdisciplinary teams; at city, regional or national level; recommended to include healthcare workers, mental health therapists, social science workers, nutritionists, and patients (expert patient). | To generate documents, protocol circuits, and guidelines that ensure the implementation of a global approach to the management of TB patients. |
At the level of the diagnostic and/or treatment center (
Interventions proposed at the level of the diagnostic and/or treatment center.
With regard to the interventions of a more general nature proposed for application in neighborhoods with the highest incidence of TB (
Creation of interdisciplinary teams: phases.
The holistic and multidisciplinary approach proposed requires substantial human and financial resources. Unfortunately, a concrete estimation of its cost is very difficult to be calculated, as it depends on the setting where to be implemented and the resources available (including the type of Healthcare System). However, we made the exercise of detailing the items which in our opinion should be considered when budgeting the different proposed interventions. We have included this information as
Suggested items to be considered when budgeting the specific interventions proposed.
Scheduled activities available to TB patients | If done in-house: costs of adapting/transforming the in-house spaces to make them suitable for the purposes. salary of professionals organizing and/or conducting the activities or effort cost. Costs can be diminished/suppressed by establishing collaboration agreements with neighborhood or city facilities (libraries, museums, swimming pools, gyms). |
Regularly scheduled institutional group sessions with both patients and staff attending. | Salary for a psychologist/therapist. |
Social mentoring activities, in-house or outsourced, thanks to collaboration agreements with other institutions or NGOs. | Salary for a program supervisor (administrative management of the team, formative supervision, monitoring performance). Salary for mentors. Mentors' travel expenses (including per diem). Communication support (i.e., Mobile phones, internet connection). Cost of training the mentors. These costs could be decreased/ suppressed by establishing collaboration agreements with local associations and NGO to partially cover the activity. |
Information tools for patients and relatives and for the general population. | Costs of designing the information material (payment-as-a-service or effort cost of professionals). Costs of translations. Costs of publishing the material. Costs of distributing the material (salary or effort cost of distributor/s). |
Communication activities | Effort cost of professionals giving the communication activities. This cost can be diminished/suppressed if the professionals agree to voluntary work. Cost of renting community infrastructures and spaces. This cost can be diminished/suppressed by establishing collaboration agreements with city council or similar local institutional bodies. |
Continuing education for healthcare professionals on TB | Costs of performing an educational course. It will depend on the format and channel: webinar, videos, tutorials, classroom course. Can include effort cost of professionals involved (including professors), internet domain, editing. Costs can be diminished by establishing collaboration agreements with universities, foundations and NGO which can contribute to the activity. Costs of designing educational material (payment-as-a-service or effort cost of professionals) and publishing educational material. |
Creating interdisciplinary teams | Minimal team: Effort cost of 1 MD to coordinate the program and to act as the interlocutor with the physicians of hospitals and other institutions feeding the program with patients. Effort cost for 1 nurse to act as the interlocutor with the MD in charge of the program and the nurse team at territorial level about the specific cases. Salary of 1 healthcare manager/administrative to manage the team and to coordinate the collaboration agreements with the institutions and facilities. Effort cost for 1 healthcare worker. Effort cost for 1 social assistant. Effort cost for 1 expert patient and/or costs of meetings with expert patients. Minimal team needs coordination with mental health therapists and nutritionists, that in case of being included in the team their effort cost or salary would need to be also included. |
One of the limitations of the study is that we focused on the anthropological approach and didn't conduct an associated epidemiological study to perform a precise description of the studied population (including their geographical origin, spoken language and detailed social condition). However, our observations were in line with results of the quantitative studies carried out in this city (
The main problem arises, however, when it comes to treatment-adherence interventions. The WHO recommendations (
Another of the main problems of TB in our region is that, despite being aware of the precarious socio-economic factors present in some patients, it is difficult to include these patients, as requested by the WHO, in publicly offered services and community-based resources and support, mainly due to the lack of established protocols and circuits.
Given this situation at the local level of a large city (Barcelona), as seen from our anthropological work, and taking into account the recommendations of the WHO (
Interventions proposed at the level of the diagnostic and/or treatment center, apart from facilitating the leisure options and training available at the centers, and working on how to stop transmission and spread of the disease, ensure that there is no discontinuity between the hospital/residential world and that of the general population outside this institutional context. It also adds value to those centers that offer it, since the quality of the services provided increases beyond strictly medical care (which is already covered nowadays). At an internal level, regularly scheduled institutional therapy help strengthen messages related to the disease, encourage a two-way flow of information and can be used to carry out training. They also have an important impact on the outcomes of the disease (
With regard to the interventions of a more general nature proposed for application in neighborhoods with the highest incidence of TB, we must make an effort to intensify the presence and implementation of tools that enhance visibility of the disease given the fact that poor population information and inadequate training of professionals result in a delay in diagnosis. In this sense, it would be important to ensure the participation of patients during their design. Similar experiences have shown that joint development (by professionals and patients working together) of the information (the story) plays a key role in the solution to the problem (
All these communication tools and activities should applied twice: once for patients and their friends and families, and the second time for the general population (distributed in geographic regions at higher risk). In this regard, it should be noted that, in order to optimize resources, it would be advisable to use existing resources that have proven useful in other regions or countries with a similar TB incidence and characteristics. All these initiatives need to be carried out using community infrastructures and space in order to link them to society itself, especially schools, civic centers, libraries, places of worship, and leisure and health facilities (gymnasia, municipal swimming pools, shopping centers). The continuing specialized training of professionals is also indispensable (
On the creation of interdisciplinary teams from professionals already working on the ground, we do believe it would represent a significant step toward tackling the illness and increasing patient wellbeing. These teams could be created at a city, regional or national level, and it may be advisable for them to be led by local Public Health Agencies. Although this approach has not been tested in tuberculosis in our setting, similar initiatives, such as the management of care for people with complex needs, which involves the coordination of health services (including mental health) at both the primary care and hospital levels, social services (both at a community and an individual level), and a specialized community support team (formed by geriatricians, pharmacists, occupational therapists, dieticians), have been implemented (
To accomplish this goal, the following sequence of steps would be required: (1) a call to all agents, including the main actors involved in TB care (professionals in the fields of social sciences, public administration, politics, and communication, from the legislative world, criminologists, teachers from all walks of life (especially adults), nutritionists, therapists and others). In this first session, all these agents would be summoned and trained, and they would be invited to put forward their reflections and proposals at a second meeting. A Multidisciplinary Teams Committee, in other words a group of people from all the different levels that would lead the initiative and ensure its good performance, would also be created. The second step would be the pooling of new approaches and points of view from all these other disciplines in order to create a pilot team that can work on the search for improvements and solutions for patients, reaching a consensus and generating documents, along with protocol circuits and guidelines that ensure a global approach to the disease. Again, we emphasize that both the screening for mental disorders and counseling and psychological support for patients are very important for the entire duration of disease follow-up and treatment, especially in those most vulnerable at the social level [such as refugees or immigrants (
Finally, under the tutelage of the Multidisciplinary Teams Committee, and once all proposals have been analyzed, the interdisciplinary pilot team should be appointed, its ideal test performance and main lines of work (areas, agents) defined, and the proposals implemented in the territory during a trial period. Although initially there may be multiple solutions for financing these teams (including the association of this initiative with a research project), it is important that the local public administration assumes responsibility for the economic viability of these teams beyond the pilot stage.
From an economic point of view, we have envisaged several interventions with a potential wide range of feasibility depending on the available resources at local or governmental level. As the funds for the implementation of actions might be unassumable by the diagnostic/healthcare management centers and the National Health System (which can vary a lot between different countries sharing the same epidemiology in terms of TB), collaboration agreements with local associations, NGO, city council or similar local institutional bodies need to be established, in order to partially cover or contribute to the activity, and thus to decrease or even suppress part of the costs. Further studies should be conducted in order to elucidate at which extent some of the actions proposed here could also be implemented in low-income countries, which due to their high-TB prevalence could benefit even more of their impact if proven successful.
The WHO recommendations in terms of tackling TB are very meaningful from the point of view of addressing the suffering of patients beyond the disease itself, and although care teams are usually aware of this, there are currently still no circuits or working protocols that define the necessary interventions or circuits that ensure their implementation in a regulated manner. With this publication, we hope to highlight this shortcoming while explaining the various concrete measures that we propose in our region and which could be put into practice in other cities or geographic regions with similar epidemiological characteristics, once adapted to the limitations of the new setting.
There is an increasing need for patient-centered tuberculosis disease management, but this is not done routinely. In this article we propose a series of specific interventions that could be easily implemented in low-incidence cities during care management.
All datasets generated for this study are included in the article/supplementary material.
The studies involving human participants were reviewed and approved by the correspondent responsible institutional review committees, both the Germans Trias i Pujol Hospital Ethics Committee (study approval code: PI-17-064) and the Vall d'Hebron Hospital Clinical Research Ethics Committee (code PR(AG)101/2017). Verbal informed consent was obtained from all participants because the study was based on informal conversations, no questionnaires, or structured interviews were conducted and no personal data from the participants were recorded. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.
We would like to emphasize that all the reflections presented have been possible thanks to TB patients, all healthcare staff involved, Servicios Clínicos SLU, the Barcelona Public Health Agency, and the health agents of Barcelona. Preliminary results of the study were presented at the XXII International Workshop on TB conducted in Barcelona on the 26–27 November 2018, and published as a conference abstract in Rev Enf Emerg 2018;17:159–160.
AP-C conducted the floating and participatory observation phases of the field work. Both AP-C and CV contributed in the design of the study, worked in the analysis and interpretation together, and in the collaborative observation by proposing strategies for intervention in the community. The authors worked together to draft the manuscript and approved its final version.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.