The Tuberculosis Behavioral and Social Science Research Forum Proceedings
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Appendix C: TB Behavioral and Social Science Research Gaps and Needs: Major Research Topics, Subtopics, and Research Questions
Major Research Topics, Subtopics, and Research Questions
IV. Health Systems and Organizations
Influences of health systems and organizations on behavior focuses on how structural, economic, and other organizational forces can affect the views of individuals, small groups, and communities. Examples include the availability, accessibility, and use of health care services by individuals, and collaboration between and among provider communities and other systems.
A. Organizational structure
The way in which the health care system is organized may play a role in affecting both patient and provider behaviors. Whether the system has a vertical or horizontal structure, whether services are integrated with other health and social services or are part of a collaborative network, and how the health care system is impacted by other systems within a society may impact availability, delivery, and acceptability of services.
1. Collaborations between provider communities and systems
There are many different social and behavioral determinants involved in TB transmission, identification, and treatment success. Certain factors that place individuals at high risk for TB, such as poverty, substance abuse, and homelessness can be greatly impacted by the availability and quality of social services. Both private and public collaborations between and among existing social service agencies and TB control efforts, as well as timely and appropriate social service referrals for individuals with TB, may play an important role in the efforts to successfully eliminate TB.
There are also a number of relevant collaborations between TB services and other health-related entities that may need to be better understood and cultivated. Given the high rate of TB/HIV co-infection among certain populations, collaboration between or integration of TB and HIV services may lead to better treatment outcomes and improved satisfaction among persons receiving these services. Collaborations with mental health and substance abuse services, homeless shelters, and correctional facilities hold equal promise.
Forum participants identified the need to determine ways to increase collaboration between TB programs and other health and social service agencies for related conditions (e.g., HIV/AIDS, mental health, and substance abuse) to improve TB diagnosis, case management, and integration of services. Specific areas for increased research include focusing on patients with multiple/varied needs, U.S.-Mexico border issues, and collaboration with correctional systems, Immigration and Customs Enforcement, and other agencies.
- What mix of TB and other services are most effective in different communities, and what are the difficulties encountered in providing such a mix? What mix is best for the patient and provider?
- What are some ways to develop collaborations with the justice system (e.g., county jails)?
- What are some ways to increase U.S. (south of border) and Mexico/Central America collaboration through the use of the government, health care providers, academic institutions, and community agencies? How should the community of origin be factored into this?
- What are the country specific TB prevention and control strategies of Mexican, Central, and South American health departments and communities?
- How can TB control and prevention partnerships be developed between U.S. and Mexican local health departments, specifically in Mexican communities?
- What are the barriers that health providers and health departments face when doing TB control and education with labor and services providers?
- What are some ways to identify and compare better methods on
increasing collaboration between TB control programs and other
health and social service agencies?
- How can coordination of care (i.e., systems of care) be increased for patients with multiple health issues, such as co-morbid conditions?
- How can coordination of mental health care with TB treatment and adherence interventions be increased? How can patients with mental health problems best receive care?
- What can be applied from HIV practices to TB with regard to incorporating screening and care into jail settings?
- How can TB be integrated into HIV provider and community planning group activities? What about substance abuse provider activities?
- How can constraints, such as environmental ones, be overcome in the implementation and provision of HIV counseling and testing in TB programs and clinics?
- What specific interventions would positively impact the fact that clients in correctional facilities are referred to the community [health center] for follow-up of LTBI therapy?
- What strategies or models for collaboration lead to better patient outcomes, not only for TB, but for a patient’s holistic health? (Suggested methodology is to conduct operational research using case studies.)
- Using an HIV case model, what type of comparison can be made on the following: 1) an increase in the number of those who know their TB status; and 2) the number who receive appropriate treatment?
2. Impact of sharing patient information
Patients who have other health and/or social issues such as TB/HIV co-infection, diabetes, substance abuse, and mental health issues, in addition to TB or LTBI, may have multiple providers. The sharing of patient information becomes a crucial component in the provision of proper and effective health care, especially as it relates to a patient’s TB treatment regimen and follow-up care. Providers who take a holistic approach to their patient’s health and who thus have a complete picture of their patient’s health and well-being are better equipped to make well-informed decisions that ensure the most appropriate TB care and treatment.
Forum participants identified the need to focus upon the impact of sharing (or not sharing) patient information on case management, service coordination, and health outcomes among managing providers in varying settings, such as health departments and correctional, mental health, and substance abuse facilities.
- What is the impact of sharing and not sharing of patient information on provider behavior and treatment outcome?
- Does the sharing of client records among managing providers (e.g., county health departments, jail system, mental health facilities, and substance abuse facilities) increase the quality of case management for clients with TB?
- What are the key elements of a medical record that health providers need to start and continue care?
- What type of retrospective analyses of clinical medical records can be conducted to develop a patient profile? How can factors and determinants be identified for patients who completed care and for those who dropped out, based on their medical charts?
- What types of evaluation can be conducted on health data transfer systems currently in place for TB?
B. Service delivery
The delivery of health services plays a major role in how patients receive TB care and treatment. From an organizational perspective, accessibility and acceptability of services, cost of services, and quality of care can often delay or prevent a person from seeking TB care and treatment. Through the use of patient-centered approaches and effective case management, these systematic barriers can be reduced or alleviated, resulting in improved provision of care and better treatment outcomes.
1. Patient-centered approaches
Patient-centered approaches focus on bringing together compassion, empathy, responsiveness, and resources to the needs, values, and expressed preferences of individual patients. Effective patient-centered care is essentially a partnership between the provider and the patient. It involves determining individual patient needs and expectations while ensuring that efforts are made to address those needs and expectations by the health care provider(s).
Forum participants recognized the potential benefits of delivering TB control services which embody a patient-centered approach, and suggested that additional research is needed to identify, compare, and standardize different methods and models for patient-centered care.
- What are some patient-centered approaches that can be tested, standardized, and replicated?
- What are some ways to develop and compare different methods for conducting patient needs assessments?
- How are client-centered needs assessments best utilized in developing client-centered interventions? Do we need to restructure needs assessment tools to be holistic?
- How do we demonstrate the added value of patient-centered TB treatment? How can this be applied to other services? What are the synergistic influences of TB control programs on those other services?
2. Case management
Quality case management is an important component of effective TB care. It holds the potential to increase treatment adherence and treatment outcomes by tailoring case management to the patient, by making appropriate referrals to needed health and social services, and helping to remove barriers to treatment success. However, little empirical evidence exists that systematically confirms the effect of the various types of case management practices. Part of the reason for this may be that many case management practices are not standardized and vary based on case management models and institutions.
Forum participants identified the need to determine the influences of case management on multiple outcomes (e.g., treatment outcomes, reduced homelessness, care for substance abuse, receipt of other appropriate social and other health resources) as well as approaches to strengthen case management practices.
- How can negative outcome expectations be overcome in order to provide HIV counseling and testing in TB clinics?
- What is the impact of using case management strategies in homeless shelters (and also jails) on multiple outcomes, including LTBI adherence, reduced homelessness, and increased access to mental health care and substance abuse treatment?
- Would the quality of case management improve if addressing social needs was a standard part of the model?
- What types of demonstration projects can be used to apply case management strategies that are effective with patients with active TB to LTBI patients?
- What are some ways to conduct theory based experimental or quasi-experimental studies that test specific methods to improve efficiency and effectiveness of TB control programs?
3. Advantages and disadvantages of directly observed therapy
Directly observed therapy (DOT), in which a health care worker or other qualified individual watches the patient swallow every dose of the prescribed drugs, is an extremely effective strategy for making sure patients take their medicines. DOT is strongly recommended as part of a patient-centered case management plan because it is difficult to reliably predict which patients will be adherent. Successful treatment programs are dependent upon public health programs and providers accepting responsibility for a patient’s care by ensuring that DOT is appropriately administered.
As TB incidence declines and programs are turning their attention to the treatment of LTBI, more TB programs are trying to use DOT for LTBI patients. Data indicating low completion rates among patients on treatment suggests the importance of determining the appropriate use for DOT with LTBI patients.
Forum participants identified the need to conduct further research on the effectiveness of varying DOT modalities for LTBI and TB, such as clinic, home, or field-based DOT. Forum participants also raised the need to identify patient-centered DOT strategies that are most appropriate to the particular needs of patients, questioning the one-size fits all mentality. Participants also focused on the need to further delineate the usefulness of DOT in treating TB and other co-morbid conditions, such as HIV.
- What are the most effective DOT strategies based on existing research?
- How can DOT services be most cost effectively delivered?
- Given that directly observed preventive therapy (DOPT) is an expensive modality, what are cost-effective models for achieving treatment of LTBI?
- Does the initial education of the infected patient regarding the use of DOPT affect the completion of treatment? Are factors, such as advising not to use alcohol, initially emphasized? Is the lack of a health department’s legal power to enforce LTBI important to why clients drop out?
- What case control studies can be conducted to identify predictors of persons who succeed and persons who fail in self-administered programs for LTBI, and who may benefit from DOPT?
- What additional research is needed on DOT with regard to TB treatment adherence? Are there parts of the DOT process that interfere with adherence?
- What method, clinic-based versus home-based DOT for TB treatment, works best and for which patients?
- Can changes be made to the DOT process that will aid in adherence (e.g., increase in patient participation, feelings of control)?
- Is selective DOT a viable option? What components of DOT can be delivered separately?
- What are some ways to test and evaluate different directly observed therapy-short course (DOTS) “flavors” for appropriateness?
- How can patients be screened in terms of determining 1) what basic needs will enable them to complete therapy, and 2) what flavor of “DOTS” (e.g., observation, control, or medicine pick up) works best for them?
- Is DOT for HIV and TB helpful in treating both diseases?
- How should a randomized clinical trial (RCT) of full vs. selective DOT with a detailed protocol for patient management be conducted? What specific components (e.g., home visits, clinic visits, or self-management) are effective? What specific outcomes, such as completion rate, failure and relapse rate, multi-drug resistance, and cost-effectiveness, are important to measure?
4. Role of incentives and enablers
Research has shown that the use of incentives and enablers can enhance patient acceptance as well as adherence to treatment for both TB disease and LTBI.
Incentives and enablers help patients continue and complete treatment and are widely used in facilities providing TB services. Incentives and enablers are most beneficial when they are tailored to the patient’s special needs and interests. Learning as much as possible about individual patients through the use of patient-centered approaches will help to identify their needs and better assist them in completing treatment.
Forum participants identified the importance of further understanding the barriers and facilitators that affect the initiation, duration, and completion of treatment of LTBI and TB disease, and the role that incentives and enablers can have in achieving TB treatment goals, specifically for diverse populations such as foreign-born persons and incarcerated or newly released prisoners.
- What are some ways to identify and distinguish basic needs from incentives and their impact on treatment completion?
- What is the role and effectiveness of incentives in completion of treatment, particularly with DOT and without DOT? What about the use of DOPT?
- What incentives are effective with different foreign-born populations? With African-Americans in the southeast? With the homeless?
5. Contact investigations
The contact investigation is an important component of TB prevention and control efforts, as it is a process for identifying persons exposed to someone with infectious TB, evaluating them for LTBI and TB disease, and providing appropriate treatment for LTBI or TB disease. In TB programs in the U.S., there is wide variability in the way in which contact investigations are conducted. Furthermore, the contact investigation can be sensitive for TB patients as they are required to elicit personal information, such as who they interact with, how often, and where. Little is known about the social and emotional impact of these investigations on the individuals involved and on the identification and follow-up of contacts.
Forum participants identified the need to determine ways to improve contact investigations by, for example, gaining a better understanding of patient and contact perceptions and being more sensitive to involved parties to enhance contact investigation outcomes. Finally, more research is needed with providers to examine their perspectives on contact investigations.
- What are the perspectives of patients, contacts, and providers of contact investigations? What are the problems associated with contact investigations? How can the yield and patient satisfaction with contact investigations be increased?
- How can contact investigations be improved? How can the process be better explained and made less intrusive to patients? What is the distinction between TB control and TB care? How can these be differentiated, and what would it look like? How can the process be made less punitive without jeopardizing public health?
- Why do some contacts not want to be examined? For patients with TB disease who were unidentified but knew they were contacts, what barriers did they encounter that prevented them from getting tested?
- What are some ways to systematically collect data on TB control and other programs in various settings, (e.g., prisons and homeless shelters) during investigations of TB outbreaks in order to identify “missed opportunities?”
6. Health communications
Health communications can be used to share information on TB with the general public, local communities, patients and contacts, as well as providers. Research has demonstrated that misconceptions about TB and the stigma associated with the disease still abound, suggesting the continuing need to increase knowledge and awareness of TB through effective channels of communication. Further research to better understand informational needs, identify appropriate and effective media for channeling information, and testing health messages related to many aspects of TB for a variety of audiences will enhance the effectiveness of TB control efforts and hopefully mitigate the stigma associated with TB.
Forum participants identified the need to identify specific and tailored messages and messengers for improving communication about LTBI and TB diagnosis and treatment among patients and providers, as well as among family members and within the community.
- What messages do family members need to accept and support the patient’s diagnosis?
- What type of message will increase the completion of LTBI treatment?
- How do we integrate messages with traditional health beliefs of foreign-born patients and of the community?
- What are current media messages in TV news and programs, newspapers, and magazines about TB and people with TB? Do these messages in daytime/primetime programs, newspapers, and magazines need to be improved or changed to be more effective?
- Regarding message acceptability, is there a difference in knowledge and adherence behavior when the caregiver is matched with the patient on race, gender, or both, particularly in generally segregated communities?
- What is the role of peers and other messengers in the delivery of health messages for patients, contacts, and providers?
- Does a core team approach, which includes former TB patients who have successfully completed treatment, improve adherence and treatment completion among persons from high-risk groups?
- How do opinion leaders change behavior of others? How can opinion leaders improve translation of recommended treatment standards to provider practice?
- What are the best places to advertise to high-risk groups?
- What specific educational interventions are most effective in reaching clients in terms of type of delivery, type of message, time entailed, messenger, and cost-effectiveness?
7. Special challenges of high risk settings and populations
Co-infection of TB and HIV presents challenges for both patients and the providers serving them. One challenge is related to the potential lack of collaboration among TB and HIV programs. It is important that TB providers offer HIV voluntary testing and counseling to both TB patients and high risk contacts, and that HIV providers offer TB screening and follow-up. Patients who have both TB and HIV may also face challenges associated with the burden of taking medicine for both diseases, as well as with the stigma associated with both illnesses.
Forum participants identified the need to conduct research on patient, provider, and agency barriers to the integration of voluntary HIV testing and counseling in TB programs as well as the incorporation of TB services in HIV/AIDS programs.
- How do the views of disease and patient agencies differ between TB as a single disease and HIV/TB co-infection?
- Regarding HIV testing of persons with TB and LTBI, how can we better understand why TB and LTBI clients resist testing for HIV? What motivators can be used to get TB and LTBI clients to get tested?
- How can the provision of HIV counseling and testing in TB programs be improved?
- How can we help TB program managers and front line staff integrate HIV volunteer counseling and testing (VCT) into their TB program activities? What are the barriers and how can we reduce them?
- Is there a way that TB can be better integrated into HIV community planning group activities?
- How can we overcome the environmental constraints to implementing HIV counseling and testing in TB clinics? How can we overcome the negative outcome expectations to providing HIV counseling and testing in TB clinics?
- What survey research can we conduct in patient and provider populations to assess discrimination, stigma, and treatment issues among people with HIV/TB as well as people with TB in the home environment, community and worksite?
- What are some effective models that can be used to increase HIV testing of TB patients?
b. Homelessness, unstable housing, and mental health issues
TB control also faces significant challenges when dealing with homeless populations or with individuals who may also be experiencing mental health or substance abuse issues. These issues, combined with a lack of stable housing, make TB screening and follow-up, diagnosis, contact investigations, treatment initiation, adherence, and completion of treatment extremely challenging.
Forum participants identified as important the need to assess the TB knowledge, attitudes, and perceptions (KAP) as well as other influences on behavior of homeless populations. Participants also identified the need to consider using patient-centered case management strategies to identify and address competing health and social issues for this population.
- What are the TB KAP and influences of homeless people?
- What is the impact of using case management strategies in homeless shelters (and also jails) on multiple outcomes, including LTBI adherence, reduced homelessness, and increased access to mental health care and substance abuse treatment?
- How do we address the impact mental illness and addictions have on TB? (Suggested methodology is to conduct intervention research.)
- What research is needed on mental health issues in regard to client behavior? What are some effective interventions that address mental health issues (co-morbidities) of people with TB?
c. High mobility jobs and migrant labor
Given their mobility, migrant farm workers and other migrant populations present unique challenges to TB prevention and control programs with respect to diagnosis, treatment, continuity of care, and contact investigations. U.S.-Mexico border issues, such as immigration and frequency of border crossings, create additional challenges.
Forum participants suggested conducting descriptive and ethnographic research using case studies as a possible method, among this special population. This type of research might help to determine ways to access migrant networks, mechanisms for tracking patients in a non-stigmatizing way, and ways to increase completion of care.
- In what ways does TB affect migrant groups vs. the general population?
- How can we “track” migrant TB patients so that we follow-up on their treatment but don’t stigmatize them?
- What data sources can be utilized to identify sites with high rates of migrant populations including Mexicans?
- What survey tools can be used to access migrant populations within networks, such as employment settings, clinics, etc.?
- What descriptive research can be conducted that tracks a small sample of mobile, high-risk populations?
- How can migrant “pockets” (i.e., locations with significant
populations) be identified?
- What types of ethnographic research studies using quantitative and qualitative methods need to be conducted?
- How should patients be screened for disease? How can persons with TB/LTBI be placed into care?
- How should patients in care be followed to completion? (Suggested method: Interview patients at 18 months)
- How should the following be conducted with mobile or migrant
- Targeted testing for significant percentages of TB?
- Placing patients on TB treatment?
- Enrolling patients in Migrant Clinician Network’s TBNet program?
- Following patients through to treatment completion?
- Following up with patients upon treatment completion, including reviewing for ease of contact, ease of tracking, percentage complete, and percentage lost?
Jails and prisons pose a unique challenge for TB prevention and control. Efforts have been made to improve the relationships between health department TB programs with jails and prisons to enhance TB screening and follow-up among inmates and correctional personnel. In addition, continuity of care can be a particular challenge for TB patients who are incarcerated during treatment and who are later released from prison or jail while on treatment.
Forum participants discussed the need to conduct further research to identify ways to improve TB screening activities, as well as adherence to and completion of treatment for incarcerated persons and newly released prisoners. In addition, participants called for further research to examine how screening and treatment for TB can be incorporated into the diagnosis and treatment for other diseases such as HIV.
- How can we provide demonstrations and conduct evaluations of programs intended to improve TB testing and follow-up in jails?
- What ways can we improve adherence and completion of TB/LTBI treatment among “hard to reach populations” (e.g., persons released from jail)?
- How do we address TB for incarcerated populations returning to the community?
- What specific interventions would increase referral of clients in correctional facilities to community facilities such as health centers for follow-up of LTBI therapy?
- How can we evaluate the use of incentives and educational based interventions aimed at increasing adherence to LTBI and TB treatment for persons being released from jail?
- What can we learn and apply from HIV to TB with regard to incorporating screening and care into jail settings?
e. Substance use
Substance abusers are at increased risk for TB. Substance abusers may have competing priorities that may prevent them from being diagnosed with TB, accepting and adhering to treatment regimens, and identifying contacts.
Forum participants identified the need to better understand the TB knowledge, attitudes, and perceptions (KAP) of substance abusers as well as determine the best ways to address these issues, so that this population will receive the most effective TB care and services.
- What are the TB KAP/influences of substance abusers?
- How can patients with substance abuse problems best receive TB care? (Suggested methodology is a call for basic research)
f. Foreign born
Although TB case rates have steadily declined since 1992, TB in foreign-born persons represents a significant challenge for TB control efforts in the United States. In 2002, TB case rates among the foreign born comprised 51% of reported TB cases in the United States.2 Foreign-born populations may have unique cultural characteristics, practices, and circumstances related to their re-settlement and adjustment to the U.S. that may influence their TB treatment and care.
Forum participants identified the need to acknowledge, understand, and incorporate different health-related cultural beliefs and practices of foreign-born patients. Other issues that warrant exploration included foreign-born persons’ perceptions of the U.S. health care system and/or the providers who deliver care, determining the role of gender and ethnic differences between patients and providers, and identifying and addressing the wide range of barriers foreign-born persons encounter when accessing services related to LTBI/TB diagnosis, treatment initiation, adherence, completion, and follow-up.
- What are the effects of knowledge and attitudes among different ethnicities and nationalities on LTBI treatment initiation, adherence, and completion?
- What are the health education needs (and KAP) of newly arrived immigrants and/or “transient” foreign-born persons (e.g., Latino immigrants) with respect to TB transmission, treatment and adherence?
- Are immigrant males at higher risk of contracting TB due to labor and environmental issues?
- What is the image of “public health centers” among foreign-born persons? How does this image affect health-seeking behavior?
- What is the effect of stigma on foreign-born women with regard to TB?
- What are the systematic (operational) issues regarding delays in TB diagnosis? Are foreign-born TB patients (compared with U.S.-born) more likely to have longer delays in seeking care? Are they likely to have more or less access to health care providers than U.S.-born persons?
- What are the effects of migration patterns on foreign-born persons with regard to stigma, beliefs, social support, access to care, and ensuring continuation and completion of treatment? What happens at other end? How does a patient’s social support structure change with his or her relocation?
- What are the barriers that immigrants face when accessing TB prevention, case identification, education, treatment, and follow up?
- Will educational materials, which address common misconceptions towards TB, seen regionally throughout the world, increase treatment-seeking behaviors among foreign-born persons?
- What factors predict adherence to treatment in Latino immigrants?
- What is the role of social support in LTBI adherence in Latino immigrants?
- How do we best incorporate cultural beliefs and behaviors into patient treatment plans, especially for Mexican and other foreign-born populations?
- What incentives work with various foreign-born populations?
- How do we integrate messages with traditional health beliefs of foreign-born patients and their community?
- What is the effect of new immigration policies on TB case identification, follow up, treatment, and adherence, especially for Latino immigrants?
- What type of research is needed to maximize screening of new and recent arrivals? How is access to these populations gained? How can collaboration with Immigration and Customs Enforcement (ICE) and other similar agencies that focus on foreign-born persons be increased?
- What are some ways to help undocumented persons overcome their fear of government agencies and institutions?
- What is the explanatory model of TB in Latino immigrants? (Beliefs about health and sources of illness from Kleinman)
- What type of bottom-up education package can be used for educating patients of different cultural groups about TB questions they may have, such as on TB medication, while also being sensitive to influences, such as the patient’s gender and age (e.g., family generation)?
- What is the effect and cost-effectiveness of a cultural intervention (e.g., educational intervention) on LTBI therapy adherence in Latino immigrants?
- How is a foreign-born patient’s TB treatment-seeking behavior in this country influenced by the policies and practices of his/her home country? (Suggested methodology was to conduct a linked study with the foreign-born TB patient’s country of origin focusing also on the communities, providers/programs, policy makers, etc.)
Children with LTBI and TB represent another population with unique characteristics and needs. The diagnosis and treatment of children is often dependent upon the role of the parent, primary care giver, and other adults.
Forum participants felt it was important to conduct research to test alternative models to increase LTBI and TB screening and treatment among children.
- What provider behaviors can lead to more efficient LTBI diagnoses in children? Can the tuberculin skin test (TST) be avoided for low risk children? What tests should be conducted for the use of new testing tools for children? How do we get providers to use these screening tools, if effective?
- What alternative models can be used for delivery of LTBI treatment among children? An example of an alternative model is the use of school-based parent administers with and without prompts (e.g., phone call reminders).