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Drug-resistant Tuberculosis Service Package: A Patient-Centered Care Case Management Approach

Background Drug-resistant Tuberculosis Service Package: A Patient-Centered Care Case Management Approach
Publication date: 
May 2019

Background

To improve the quality of drug-resistant tuberculosis (DR-TB) care and thus treatment success and cure rates, the United States Agency for International Development (USAID) developed A Practical Guide to Delivering Essential Supportive Care to Patients with Drug-resistant Tuberculosis. Many countries are already providing some level of patient support services for DR-TB. Studies show that key barriers to completing DR-TB treatment include poor access to health services and insufficient understanding of the disease and its treatment. Factors such as long treatment timelines; serious side effects of medications, including permanent hearing loss; costs associated with accessing healthcare; pressures on employment; emotional and physical isolation of patients, particularly those dealing with co-morbid conditions, particularly HIV infection; mental illness and substance abuse; high levels of stigma and discrimination experienced by patients and their families; and generally poorer outcomes for patients also contribute to poor treatment outcomes. While South Africa has already made tremendous strides in improving access to DR-TB treatment and care, a 57% treatment success rate for MDR-TB in 2016 is still unacceptably low.   

DR-TB notifications for 2017 were 10, 722 of which 95.7% (10,257) were MDR and 4.3% (465) were XDR. To address the psychosocial impact of DR-TB South Africa was one of the countries selected to pilot the patient centered care package. South Africa is one of the NAP countries whose key objective is improve MDR-TB diagnosis and treatment. 

Implementation of the DR-TB patient-centered care package

The USAID Tuberculosis South Africa Project, in partnership with the National Department of Health, adopted and piloted the DR-TB patient centered care package in three of the 9 SA provinces namely Eastern Cape, Free State and Limpopo.  The pilot project was designed to address critical gaps in the quality of care and support for patients with DR-TB with the aim of improving treatment outcomes by delivering a comprehensive supportive patient care package.

A total of 225 patients diagnosed with DR-TB were recruited to participate in the pilot. 

Elements of the comprehensive supportive care package:

  • Health education for patient and family 
  • Nutritional support
  • Psychosocial support
  • Monitoring and timely treatment of side effects and adverse drug reactions
  • Regular monitoring and treatment of mental health conditions
  • Protection from social isolation or discrimination 
  • Transport assistance through provision of social grants

DR-TB patient centered care package patient profile    

Patient age and gender profile

The gender profile of patients showed that there were more male patients n=129, on the package than females n=96. The age profile of patients ranged from 18 years to 82 years of age.

Patient socio-economic profile

During the recruitment period, 189 patients were unemployed and only 25 patients were reported to be employed either on a part time or full-time basis. Seven patients were receiving social grants. This is an indication of socio-economic challenges that patients with DR-TB face.

Linkages to care: the NGO based approach

In implementing the supportive care package, the NGO based approach was used. This approach uses community health workers to provide DOT support, contact management and patient and family education.As part of the pilot, project funded NGOs in pilot districts contracted services of social workers to provide psychosocial care and DR-TB nurses to provide clinical care and management to patients. NGO’s in pilot sites that provided support to patients are Baemedi in Limpopo, Khanya, Thusanang, Naledi and Mosamaria in the Free State; and Mfesane, Care Ministry and Octavovect in the Eastern Cape. The provision of the service package used a case management approach where patients were managed on an individual basis; wherein their clinical care and psychosocial needs were identified and addressed. The clinical management of patients were provided by nurse coordinators and psychosocial care was provided by social workers. This was to ensure that patients were supported throughout the treatment journey.

DR-TB patient centered care package in Limpopo Province

In Limpopo province the patient centered care package was implemented in the Sekhukhune district. Matlala Hospital served as the catchment facility for 25 patients on the package. Baemedi, the project funded NGO together with the DR-TB nurse co-ordinator provided education and DOT support to patients on the package. Further, the nurse coordinator supported patients in managing side effects from treatment, provided further referrals in cases where there was need and conducted nutrition assessments. Patients also received psychosocial care from a social worker.  This entailed counseling, assistance to apply for a social grant and food packages. 

To address issues of stigma and discrimination Matlala Hospital hosted a family day event where patients and their family members were educated about TB. 

The aim of the family day was to create conducive and a supportive community. The event commenced with a community dialogue involving patients, family members, health providers, local councilors, members of religions and faith based organizations and traditional leaders.  Comprehensive health screening and testing services and TB education were provided at the event. 

Patient story

A patient who was enrolled in the package had started treatment but was in denial of her diagnosis. During her treatment she was referred to a dietitian and at the time her BMI was 17.7 kg/m². Nutritional supplements were initiated on the patient and the process of applying for a SASSA grant with the support of the social worker ensued.  The patient was educated about TB and was also provided with counseling. All these services were provided in collaboration with the multi-disciplinary team from Matlala Hospital.  The patient eventually accepted her diagnosis and is currently taking her treatment without fail.   

DR-TB patient centered care in Free State Province

In Free State Province, the patient centered care package was implemented in the Mangaung district. Dr JS Moroka, Heidedal, Botshabelo and MUCPP hospitals served as catchment areas for 55 patients. Project funded NGO’s, Naledi, Khanya Mosamaria and Thusanang provided DOT support for patients on the package in collaboration with DR-TB nurse co-ordinator. Patients and family members were assisted and supported to apply for social grants. In addition, patients who need support groups were referred to adherence clubs that are implemented in some of the clinics.

Patient story

A patient initially refused to be admitted to hospital following his TB diagnosis. Nurses and other patients regarded him as a difficult patient due to his temper. On many occasions he threatened to leave the hospital, stop taking treatment and spread TB and HIV. He complained about the inhumane treatment he received from the nurses. The social worker provided TB education and counselling to him and his family. His outlook towards his diagnosis changed and he subsequently joined a support group after being discharged. 

DR-TB patient centered care in the Eastern Cape Province

In the Eastern Cape Province, the patient centered care package was implemented in the Nelson Mandela Bay Metro. Jose Pearson, Empilweni and Orsmond Hospitals served as catchment areas for 150 patients. Project funded NGO’s Care Ministry, Octavovect and Mfesane, together with the nurse coordinator,  provided DOT services and education to patients and their family members.  Patients were assisted to apply for social grants. In some cases, patients did not have identity documents and social workers accompanied them to the Department of Home Affairs to assist them to complete application forms for identity documents. 

Patient story

A patient and his family were experiencing food insecurity, as a result the patient was not adhering to treatment. It was found that he had misplaced his identity document. The social worker supported the patient to apply for the identity document and to apply for a social grant. Further, the patient was provided with food parcels and support to start a food garden. The patient has received follow up care and support from the social worker and is currently taking his treatment accordingly.  

Community education approach

Community radio stations in pilot sites were used as a medium to educate community members and patients. In the Eastern Cape, Nkqubela FM which has a reach of 50 000 listeners allocated the Monday, 10:00 – 10:30 time slot to the project. In the Free State, Motheo FM in Mangaung which has a reach of 74 000 listeners allocated the Wednesday 10:00 – 11:00 time slot and in Limpopo, Thabantsho Community Radio in Sekhukhune which has a reach of 20 000 listeners for the allocated 14:00 – 14:30 time slot.   The radio sessions were facilitated by provincial colleagues including nurse co-ordinators, social workers and other members of the multidisciplinary teams from different health facilities. Listeners were given an opportunities to call in and ask questions during the sessions.  The anticipated impact of using community radio was:

  • Increased levels of awareness and knowledge about TB infection
  • Increased awareness about TB treatment and adherence
  • Increased uptake of TB services particularly in the serviced districts. 

Enhancing quality of clinical care   

The goal of implementing the supportive care package was to improve treatment outcomes for people with DR-TB.  The chart audit process was important in ensuring the provision of and improvement in quality care to patients. Chart audits conducted at baseline identified gaps in areas where patient management needed to be improved. 

From the gaps that were identified specifically in the area of nutritional assessments, a training module on nutrition assessment and support was developed and 70 care providers were trained in pilot facilities. This resulted in an increase in the number of patients that were assessed for nutrition support.  All patients (100%) were offered HIV testing. Findings from the chart audits indicated that there is a need to strengthen diabetes screening and documentation of glucose testing for MDR-TB clients.  

As a result of stigma, fear and negative treatment by care providers, some of the patients were afraid to access services on their own. In this regard social workers assumed the role of patient advocates and personally intervened and supported patients to access services they needed. 

A total of 162 (72%) of patients with psycho-social needs such as depression, anxiety, substance abuse problems, food insecurity, lack of source of income, and lack of transport to attend follow-up visits were assessed and referred for specific interventions and support. To further address nutritional needs and to educate and empower patients on self-reliance, patients were educated on planting and maintaining vegetable gardens.  

The feasibility of implementing the DR-TB service package

The service package was piloted for 6-monts, at the end of the pilot, two assessments were conducted, the feasibility and acceptability from the service provider’s perspective and patient experiences of receiving the care package.  

What has been the impact on patient waiting times at the facility since the implementation of the DR-TB service package?

Under the supportive care package, patient care and management were implemented by multidisciplinary teams with different skill sets to address the specific needs of patients. Patients on the package had the added support of social workers and nurse co-ordinators who monitored their mental and physical well-being, as a result they did not have to frequent health facilities and did not have to wait longer to see a health provider.

Does the DR-TB service package help patients to adhere to and/or complete their treatment? 

Health care workers were asked whether they feel the intervention is helping patients to adhere and complete their treatment. The majority, 71% strongly agreed, 23% agreed, 3% were neutral, 3% disagreed and none of the health workers disagreed with the statement. 

How satisfied were patients with the health care services they received?

Patients evaluated the care package based on their experience of receiving care at the specific sites and their feelings about DR-TB treatment.  When asked about their satisfaction about receiving care at their respective facilities, 71% of patients responded that they were very satisfied about the services they had received, 26% of patients felt neutral about services and 3% of patients were very dissatisfied. 

How did the patients feel about their DR-TB treatment?

When asked about their feelings about DR-TB treatment 75% of patients indicated that they are optimistic that they will be cured, 3% indicated they are sad or depressed about their situation, 6% indicated that they are worried or overwhelmed, 2% indicated that they are confused, 5% didn’t feel special and 6% had other feelings such as no longer being valued by family and friends.

The cost to the health system to implement the service package

The cost analysis of implementing the service package was calculated based on the actual delivery of the services to patients such as subcontracts with NGOs to provide adherence support. Costs associated with introducing and maintaining the service package such as training, MDT co-ordinating meetings and refresher courses were integrated in the routine programme operations and it was believed that they would not add substantially to overall costs.  Based on budgets and contracts with NGOs that detailed the services to be provided, the total costs as reported included the following:

  • All NGO costs related to delivering services directly to patients in the community;
  • Salaries for additional social workers and nurses to deliver package services and monitor progress; and
  • Introductory training and follow-up workshops for facility and community organization staff.

The cost of delivering the supportive care package was approximately US$148 per patient per month.

The cost of treating DRTB under standard care has a benefit ratio of $0.38 whereas the cost of treating DR-TB under the service package (patient centered care) the benefit ratio is $0.48, for every $1.00 spent on delivering the patient centered care package, society recovers $0.48.  There are cost benefits to the health system to implement a comprehensive package in managing DR-TB in the country.

Conclusion

The essence of the DR-TB patient centered care package was to enhance TB care and support to ensure that patients adhere and complete their treatments. For that to be achieved it was important that patients and their families receive regular education, patients receive respectful communication, provision of nutritional support, assistance with grants and transport to ensure that they attend follow-up visits.  Social workers were valuable in supporting and advocating for services for patients to ensure that they are adequately supported in their treatment journey.