Improving Cryptococcal Meningitis Outcomes: A Mixed-Methods Evaluation of a Cryptococcal Meningitis Program in Rural Uganda

Abstract

University of Washington ABSTRACT Improving Cryptococcal Meningitis Outcomes: A Mixed-Methods Evaluation of a Cryptococcal Meningitis Program in Rural Uganda Abigail Link Chair of the Supervisory Committee Danuta Kasprzyk, Professor Department of Child, Family and Population Health Nursing Cryptococcal meningitis (CM) is an important cause of death globally for those with HIV, as it is responsible for 15% of all AIDS deaths. With an estimated mortality rate of 50-70%, this disease continues to kill 181,000 people globally per year. Although there are established treatment guidelines for this disease to decrease mortality, the current Uganda guidelines for CM care are difficult to implement because hospital supplies are often out of stock and treatment is too expensive for patients, especially in rural areas. Additionally, little is known about the barriers related to care-seeking, diagnosis, and treatment to improve CM mortality and morbidity outcomes from the patient and provider perspectives. The purpose of this dissertation is to evaluate whether an ongoing CM Diagnosis and Treatment Program (CM-DTP) in Lira, Uganda improved care and outcomes for CM and to understand the patient, family member, and provider perspectives of the experiences they had with this disease. In conducting this evaluation, this dissertation also seeks to identify barriers and facilitators to care in order to improve CM diagnosis and decrease mortality outcomes in rural Uganda. This dissertation is composed of five chapters, of which three focus on specific aims and assess different participant groups and components of the CM-DTP evaluation. The first manuscript is a retrospective chart review of all patients diagnosed with CM or meningitis or who had symptoms of meningitis seen between February 2015–February 2019 (N≈700). Two cohorts were set up in order to assess the effectiveness of the CM-DTP compared to a historical cohort in improving CM diagnosis and mortality outcomes (Aim 1a) and identify improvements in CM care (Aim 1b). The first cohort included patients seen from February 2015-2017 who received the usual care, referring to care prior to the implementation of CM-DTP. The second cohort included patients seen from February 2017-2019, who received care during the first two years of CM-DTP implementation. Utilizing the Intervention Mapping framework, we evaluated the CM-DTP and found that among patients who had a positive confirmed CM diagnosis, overall mortality trends decreased from cohort 1 to cohort 2 and that the number of antibiotics prescribed decreased while treatments with lumbar punctures (LPs), and combination Amphotericin B and fluconazole increased in cohort 2. Significant predictors of mortality were Glasgow coma scale of <15, while a decreased number of hospital days and an increased number of LPs were significantly associated with death. The purpose of this comparative study was to understand the effects of the program and thereby propose future interventions to improve CM care and decrease CM-related deaths in rural Uganda. The second manuscript, Chapter 3, focuses on identifying barriers and facilitators to health-seeking behavior—from patients and family members perspectives—and to assess whether or not these participants were receiving accurate information from providers by gauging their knowledge of cryptococcal disease (Aim 2). For this mixed-methods study, survey and semi-structured interviews were conducted with patients (N=20) and family members of deceased patients (N=20) who participated in the CM-DTP between February 2017-2019. Results from the surveys and themes from the interviews informed by the Integrated Behavioral Model (IBM) showed that the lack of CM education and understanding, stigma, and mental health disorders were key barriers, while support and purpose for life were key facilitators for CM care. Additionally, primary reasons for delays in CM diagnosis and care included self-medication, multiple visits to local health centers, and cultural/religious rituals which were used as alternative methods for treatment and healing. This novel information increases understanding of the barriers and facilitators patients encounter during the course of their CM experience within the program. The insights gained from this second manuscript will also inform future interventions to improve the current program and aid in early CM detection, treatment, and patient education about CM disease and prevention. The third manuscript (Chapter 4) explores the experiences and perspectives of healthcare providers. An interview guide was developed using the IBM constructs to assess providers’ knowledge surrounding CM care in order to a) identify barriers and facilitators in their ability to diagnose and treat CM and b) assess their knowledge of CM, cryptococcal screening, and treatment based on Uganda CM guidelines (Aim 3). Similar to the second manuscript, surveys and semi-structured interviews were conducted with providers (N=20) from outside health centers who referred patients to Lira Regional Referral Hospital (LRRH). The findings from the surveys and interviews identified the key barriers of lack of CM education and knowledge, lack of diagnostic and treatment supplies, and cultural/religious delays by patients, while facilitators included CM knowledge, educating patients on CM, and providing support for patients. The insights gained from this qualitative study helped identify key areas that will enable future interventions to equip providers with the needed knowledge, resources, and tools to ensure that patients receive appropriate CM care based on Uganda’s current guidelines regarding CM diagnosis and treatment. Understanding the barriers that providers have in diagnosing and treating HIV/AIDS patients with CM symptoms supplemented the findings gained from the qualitative study with patients and provided a more holistic picture of the gaps or inconsistencies that exist in CM-DTP and CM care in rural Uganda. The overall purpose of this dissertation was to strengthen the CM-DTP and CM care in Uganda, which was accomplished by the identification of barriers and facilitators in care-seeking, diagnosis, treatment, and overall CM care through assessing patient and provider knowledge and experiences. Through the improvement of diagnosis, mortality outcomes, and overall CM care, we can enhance and preserve the lives of patients. The conclusion of this dissertation offers key recommendations to LRRH and Uganda Ministry of Health officials to improve CM patient education, services, and care. Keywords: Cryptococcal meningitis, HIV/AIDS, program evaluation, mixed methods, Africa