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LoginMiddlesex County Office of Health Services
Public Health Nursing Case Management for XDRTB
Marybeth Caruso, MSN, RN
Director of Nursing
marybeth.caruso@co.middlesex.nj.us
732-745-3120
East Brunswick
New Jersey
08816
Your summary must address all the questions below:
Middlesex County (www.middlesexcountynj.gov) is the second largest county in New Jersey and serves a population of over 829,000 persons living in twenty-five local municipalities. The county is 58.60% White, 9.69% Black or African American, 0.34% Native America, 21.40% Asian, 0.03% Pacific Islander, 6.99% from other races, 2.95% from two or more races, and 18.40% of the population are Hispanic or Latino. Middlesex County is prominently known for its significant concentration of Asian Indians. It has the largest and most diverse South Asian cultural hub in the United States. (https://www.census.gov/data.html)
Tuberculosis (TB) has been identified as a significant public health issue in Middlesex County. In 2018 the TB Morbidity cases were forty-four with a case rate of 5.2 per 100,000, making Middlesex the second highest county in cases. With increasing challenging cases of TB, Public Health Nurses need to be prepared to manage complex cases such as Extensively Drug-Resistant TB (XDR-TB) a rare type of MDR-TB. Starting a complicated multi-drug regime for XDR-TB, the usual practice is to start as impatient (hospital), then transition to outpatient; however, it can be done in the community when Public Health nurses are prepared to manage complicated XDR-TB clients. Our goal was to provide a culturally congruent, patient-centered team approach community based XDRTB care for the patient and have successful treatment outcomes.
We implemented several tools to meet the challenges to manage the XDR patient in the community setting and XDR TB treatment was introduced and continued in a Public Health Clinic setting. Public Health Nurses managed side-effects; monitored lab testing; assisted the patient with access to health care for co-morbidities; used existing XDR treatment monitoring tools; developed language (Russian/Ukrainian) specific tools for symptom monitoring; utilized a Russian/Ukrainian speaking nurse for case management and Direct observed therapy (DOT) to the patient who was uninsured, (no established primary care physician with pre-existing conditions of uncontrolled IDDM, Hepatitis C and Hypertension).
Challenges certainly exist when treatment for XDR TB started in a community setting. The patient was successfully treated with no exposure to the community, minimal complications, and remains healthy today. Existing protocols and procedures were improved and developed and intra-agency cooperation was established to provide a comprehensive team approach to manage the patient for long term follow up.
Several factors lead to the successful treatment for this patient. Our clinical site was the first public health center to use Delamanid as a drug of choice to treat XDR-TB. This medication is currently approved for medical use in Europe, Japan and South Korea. The staff had to work closely with the physician, the State Health Department and the Global Tuberculosis Institute in applying for compassionate care use to be approved to use this drug for the patient. The center was successful and are the first in the US to use this medication successfully for XDR-TB. Successful factors also included the bilingual Nurse establishing rapport with the patient and the family to help obtain accurate medical history and history of prior TB treatment; working closely with partners including the CDC and the NJ State Health Department; conducting a comprehensive home assessment for medication safety-use of medication brought from Ukraine; establishing protocols for monitoring side effects of XDR treatment; performing DOT by a bilingual nurse for the first 6 months of treatment; using a team approach to manage the long term projected treatment; the development of a language tool to aid field staff with communicating to the patient the side-effects of XDR treatment; and assisting the patient with access to care for Hepatitis C treatment and Diabetes management.
The impact of effective case management resulted in the successful treatment for the patient, but also prevented further XDR cases within the patient’s family and the community. Effective and comprehensive contact investigation was completed, and contacts were evaluated immediately and monitored throughout the course of the patient’s treatment. The patient was able to remain at home during his treatment rather than be admitted to a hospital causing a substantial decrease in the financial cost to treat this uninsured patient.
A Model Practice must be responsive to a particular local public health problem or concern. An innovative practice must be -
Treating patients with XDR TB is especially complicated and challenging for public health. XDR TB is resistant to the most potent and available TB drugs, leaving patients with treatment options that can be less effective. Inappropriate management can have life-threatening results and management should always be done in consultation with experts in the disease. Treating patients with XDR TB is also an economic challenge for many. It is very expensive to treat, takes a long time, has potentially life-threatening side effects and disrupts the lives of the patient and family. Treatment for XDR TB can cost upwards of five hundred thousand dollars and even higher ($800,000.00) when including loss of income and wages for the patient.
Very few patients are treated outside of the hospital setting for XDR-TB. In 2017 a 58-year-old foreign born male was diagnosed with bilateral, cavitary, smear positive lung disease. Treatment for XDR Tb was introduced and completed in the TB Control Center of the County Public Health Department. Public Health Nurses managed side effects, monitored lab tests, and assisted patient with access to health care for co-morbidities. Public Health Nurses provided comprehensive case management for this patient utilizing existing XDR TB treatment guidelines and monitoring tools and developed their own language specific tool for assessing and monitoring the patients potential side effects (patient spoke Russian only).
Several new diagnostic tools and tests were added to accommodate the effective treatment of the patient. Arrangements were made with the mobile x-ray company to provide EKG testing as required for the XDR medication. The laboratory needed to provide specialized blood testing. Collaboration with the CDC, The Global Tuberculosis Institute and the State Health Department was needed to obtain specialized medications.
The patient was able to remain in the home during his entire course of treatment, return to work, and most importantly remain in the community setting rather than be hospitalized for testing, treatment and monitoring decreasing the economic factor of treatment substantially.
The LHD should have a role in the practice’s development and/or implementation. Additionally, the practice should demonstrate broad-based involvement and participation of community partners (e.g., government, local residents, business, healthcare, and academia). If the practice is internal to the LHD, it should demonstrate cooperation and participation within the agency (i.e., other LHD staff) and other outside entities, if relevant. An effective implementation strategy includes outlined, actionable steps that are taken to complete the goals and objectives and put the practice into action within the community.
The LHD should have a role in the practice’s development and/or implementation. Additionally, the practice should demonstrate broadbased involvement and participation of community partners (e.g., government, local residents, business, healthcare, and academia). If the practice is internal to the LHD, it should demonstrate cooperation and participation within the agency (i.e., other LHD staff) and other outside entities, if relevant. An effective implementation strategy includes outlined, actionable steps that are taken to complete the goals and objectives and put the practice into action within the community.
The goals and objectives for this practice were simple, provide the most effective, safe and comprehensive medical care and management for a positive outcome which was complete treatment and resolution of the patient’s disease. Over the course of over 30 months the Public Health Nurses and staff worked diligently in providing the patient with Direct observed therapy, monitoring patient for side effects daily, assuring the patient received the necessary blood work, EKG’s, sputum specimens, x-rays and diagnostic studies, assisted him with his co-morbidities, provided financial assistance with his rent payments, developed forms and tools to provide culturally congruent care, provided constant updates with the treating physician, and provided emotional support and care to the patient and family.
Our staff could not effectively treat this patient without collaborating with other stakeholders. There were many involved on some level in the treatment of the patient. The Public Health Nurse worked closely with the treating physician; the State Health Department provided all the necessary medication at no cost to the patient or clinic and also provided funding towards the patients rent and testing and treatment supplies for his diabetes; the CDC provided necessary drug susceptibility testing and guidance; the x-ray provider helped to perform the necessary EKG’s, the laboratory worked with the staff in obtaining specialized blood work including important medication drug levels; and the Health Officer for the county provided guidance and resources as needed.
Funding to treat this patient came from multiple sources. The TB Control Center received funding from federal and state sources as well as in kind costs from the County of Middlesex. The cost of the diagnostic testing (x-rays, blood work and EKG’s) was funded by the county. The cost for the medication was covered by the state health department. We estimate the cost savings for treating this patient in the public health center to be at least two hundred and fifty thousand dollars over the course of treatment.
Evaluation assesses the value of the practice and the potential worth it has to other LHDs and the populations they serve. It is also an effective means to assess the credibility of the practice. Evaluation helps public health practice maintain standards and improve practice. Two types of evaluation are process and outcome. Process evaluation assesses the effectiveness of the steps taken to achieve the desired practice outcomes. Outcome evaluation summarizes the results of the practice efforts. Results may be long-term, such as an improvement in health status, or short-term, such as an improvement in knowledge/awareness, a policy change, an increase in numbers reached, etc. Results may be quantitative (empirical data such as percentages or numerical counts) and/or qualitative (e.g., focus group results, in-depth interviews, or anecdotal evidence).
Evaluation assesses the value of the practice and the potential worth it has to other LHDs and the populations they serve. It is also an effective means to assess the credibility of the practice. Evaluation helps public health practice maintain standards and improve practice. Two types of evaluation are process and outcome. Process evaluation assesses the effectiveness of the steps taken to achieve the desired practice outcomes. Outcome evaluation summarizes the results of the practice efforts. Results may be long-term, such as an improvement in health status, or short-term, such as an improvement in knowledge/awareness, a policy change, an increase in numbers reached, etc. Results may be quantitative (empirical data such as percentages or numerical counts) and/or qualitative (e.g., focus group results, in-depth interviews, or anecdotal evidence).
At the conclusion of the patient’s treatment we evaluated our outcomes and the lessons we had learned. The goal of the TB Control Center is to provide comprehensive medical care and management to patients with TB and to prevent the spread of the infection/disease. To measure the patient’s outcomes, data was collected from the patient’s medical chart on a weekly basis. Blood work, sputum results, follow up imaging were all reviewed and monitored closely. The patient was seen everyday for Direct observed therapy and assessed for potential side effects. The patient was seen monthly by the medical doctor. Case management was an important factor in the evaluation of the patient and modifications to the patient’s treatment regime were made based on any clinical findings or concerns.
Sustainability is determined by the availability of adequate resources. In addition, the practice should be designed so that the stakeholders are invested in its maintenance and to ensure it is sustained after initial development (NACCHO acknowledges that fiscal challenges may limit the feasibility of a practice's continuation.)
