Wednesday, May 8, 2019

OPTIMIZING TUBERCULOSIS CONTACT INVESTIGATION AND LINKAGE TO CARE IN NAIROBI, KENYA TB KWISHA


PhD Thesis by Diana Mwendwa Marangu, PhD, MBCHB, MMED, MPH
W80/97809/2015
University of Nairobi

ABSTRACT

Background: The World Health Organization End Tuberculosis (TB) Strategy is geared towards zero deaths, disease and suffering due to TB, including TB-related stigma, worldwide. Optimal TB contact investigation (CI) impacts TB prevention, timely case finding and linkage to care.
However, data on routine TB-CI implementation in high TB burden contexts in low and middle income countries (LMICs) are limited. Furthermore, validated tools to measure stigma in TB patients, in order to examine stigma's role in TB-CI are scarce. Specific operational guidelines and a framework to optimize TB-CI including an instrument that comprehensively measures TB- related stigma among patients in Kenya, a high-burden TB/HIV/multidrug resistant TB and LMIC African context, are envisioned in the national strategic plan but do not currently exist. 

Objectives: To identify and describe patient and health worker perspectives regarding barriers and facilitators to TB CI and utilize these to inform the design of TB-CI specific operational guidelines as well as a framework for optimization of TB-CI and linkage to care in Nairobi County, a high TB/HIV burden urban setting. Secondly, to evaluate understanding, acceptability and relevance of the 26-item Stigma Scale for Chronic Illness (SSCI) tool (by Rao et al.) among Kenyan TB patients and utilize findings to adapt the scale for use in our local context.

Methods: Between April 2015 and July 2016, I led a multi-method qualitative study based on individual interviews with pulmonary TB patients, facility observations and focus group discussions with health workers (HWs) in 13 health facilities in Nairobi County, and key informant interviews with governmental and non-governmental experts in Kenya. Facilitators, barriers and opportunities to optimize TB-CI were identified through triangulation of data and methodology, synthesized themes, and study findings informed the design of TB-CI specific operational guidelines and implementation framework. Findings were analysed based on a conceptual framework developed apriori of themes at 3 levels: the index TB patient, health worker (HW) and health system. Additionally, qualitative research to adapt the Stigma Scale for Chronic Illness (SSCI) tool by Rao et al. was performed to assess internalized and enacted TB-related stigma in Nairobi, Kenya. Feedback on the English- and Swahili-translated SSCI tools was elicited through individual cognitive interviews with 20 pulmonary TB patients in eleven health facilities in Nairobi County. Difficulties in translation, differences in meaning, TB contextual relevance, patients' acceptability to the questions, and issues in tool structure were assessed. The interviews were audio recorded, transcribed, and translated.

For methodological robustness, I invited two multilingual research assistants to participate in this work: (i) an anthropology expert who transcribed all interviews, translated the 20 cognitive
interviews, and independently coded and analysed themes, and (ii) a Swahili/English translator and communicator, who served as a tie breaker when we did not reach consensus in our independent data analysis, and also ensured results presented truly reflected participants' perspectives. Each of us independently translated the original SSCI (by Rao et al.) into Swahili and back into English and harmonized the tool for HW administration.
Results: Invitation of TB patients to bring close contacts by HWs was key for all patient decisions that led to contact screening. Additional facilitators included the patients' understanding of TB transmission and desire to avoid contacts suffering from TB; and pro-active measures by HWs including home-visits and sputum container provision for unavailable contacts. Barriers reported included long wait-times, non-conducive clinic hours for contacts who were working or in school, poor community awareness and TB stigma. Missed opportunities included sub-optimal enquiry and lack of HW invitation of close contacts presenting at the facility, and these stemmed from lack of TB-CI specific operational guidelines, documentation tools and HW training. Stakeholders proposed provision of fast tracked and holistic health packages to add value for contacts seeking TB screening and synergistic facility and community health strategies customized to diverse contexts. Interoperable, efficient and user-friendly computerized health information systems, sustainable government led funding for infrastructure and an adequate well-trained health workforce for optimized TB-CI delivery were also proposed.
From the cognitive interviews, most questions in the Rao-SSCI tool were understood in both English and Swahili, deemed relevant in the context of TB, and acceptable to TB patients. Key areas of adaptation of the SSCI included adding questions that address fear of infecting others and death, HIV stigma, and intimate, family, and workplace relationship contexts; and beginning with an open question to capture all patients' concerns. Questions were revised for non- redundancy, specificity, and optimized sequence.

Conclusion: The key barriers to CI in our setting are failure by HWs to educate and invite TB patients to bring close contacts for TB screening, sub-optimal processes and flow of TB patients, HW and community TB-related stigma, and general health system challenges. With regard to adaptation of the SSCI by Rao et al for TB-related stigma, the main items that needed adaptation to make the tool locally acceptable and relevant included beginning with an open question to capture all patients' concerns; adding questions that address fear of infecting others and death, HIV stigma, and intimate, family, and workplace relationship contexts; and eliminating redundancy. Patient and HW perspectives gained from this study were useful for the development of a novel context appropriate TB-CI specific operational guideline and framework for optimized TB-CI.

Implications and Recommendations: The novel operational guideline and framework developed is proposed for pilot implementation and possible scale up to optimize TB-CI in the local setting. Secondly, the adapted 8-item SSCI developed appears to be a useful tool that may be administered by HWs in English or Swahili to quantify TB-related stigma among TB patients in Kenya. The implementation tools developed from this study shall be disseminated to the National TB and Lung Disease Program, and other relevant stakeholders involved in TB services for consideration for implementation and further evaluation.

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