SCHOOL OF PUBLIC HEALTH COLLEGE OF HEALTH SCIENCES POST-EBOLA SYNDROME AMONG EBOLA VIRUS DISEASE SURVIVORS IN MONTSERRADO COUNTY, LIBERIA BY HIMIEDE WEDE WILSON (10508974) THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE AWARD OF MPHIL APPLIED EPIDEMIOLOGY AND DISEASE CONTROL DEGREE SEPTEMBER, 2016 University of Ghana http://ugspace.ug.edu.gh i DECLARATION I, HIMIEDE WEDE WILSON, do hereby declare that except for the referencing of other people’s work which I have duly acknowledged, this work is the result of my own original research and that this dissertation, either in whole or in part has not been presented to any other University elsewhere for another degree SIGNATURE______________________ HIMIEDE WEDE WILSON (Student) DATE ________________________ SIGNATURE ________________________ Dr. ERNEST KENU (Supervisor) DATE ___________________ University of Ghana http://ugspace.ug.edu.gh ii DEDICATION To my parents Cllr. William H. Wilson and Ms. Gilda N. Merchant for their endless support both morally and financially. My uncle MacDonald B. Freeman Jr. and my lovely siblings Millicent, Hannah, Roosevelt, Sie and Gilda for their encouragement to push forward in obtaining higher education. May God almighty blessed you all. University of Ghana http://ugspace.ug.edu.gh iii ACKNOWLEDGEMENT First and foremost, All thanks be to God for a successful thesis. To my parents, I am highly appreciative for the financial and moral support shown me during this educational sojourn. My profound thanks go to the West African Health Organization, for providing me the sponsorship to study at the University of Ghana. My appreciation to the Ministry of Health, Liberia for nominating me as a student for the Applied Epidemiology and Disease Control Program of the School of Public Health, University of Ghana. And for providing me data of Ebola Virus Disease Survivors in Liberia. In a remarkable manner, I extend my gratitude to my supervisor Dr. Ernest Kenu for the constructive criticism, guidance, encouragement and technical support continuously throughout the writing of my dissertation. Also much gratitude to the Ghana Field Epidemiology and Laboratory Training Program for the knowledge, support and on hand experiences in preparing me as a Field Epidemiologists in the area of Public Health. And also, to Dr. Maame Amo-Addae whose unwavering knowledge, efforts and support in helping to bring out the best in this work I am much grateful for. My heartfelt thanks to the Site Manager and staff of the Partnership for Research on Ebola Virus Disease Clinic, Paynesville City, Duport Road Liberia. For allowing us to interview some of our study participants employed with the facility or who attended follow-up visits there. And lastly, many thanks to the Ebola Survivors Network, Liberia in general. Its sectorial leadership specifically in Montserrado County for the cooperation and efforts in working with the principal researcher in ensuring the objectives of the study were achieved. And lastly, I am ever grateful to all who provided professional help during the writing of my thesis. University of Ghana http://ugspace.ug.edu.gh iv TABLE OF CONTENTS DECLARATION ............................................................................................................ i DEDICATION ............................................................................................................... ii ACKNOWLEDGEMENT ........................................................................................... iii TABLE OF CONTENTS .............................................................................................. iv LIST OF TABLES ....................................................................................................... vii LIST OF FIGURES ................................................................................................... viii LIST OF ABBREVIATIONS ...................................................................................... xii ABSTRACT ............................................................................................................... xiii CHAPTER ONE ............................................................................................................ 1 1.0 INTRODUCTION ................................................................................................... 1 1.1 Background .......................................................................................................... 1 1.2 Problem Statement ............................................................................................... 4 1.3 Conceptual Framework on Post-Ebola syndrome ................................................ 6 1.4 Justification .......................................................................................................... 9 1.5 Objectives ........................................................................................................... 10 1.5.1 General Objective ............................................................................................ 10 1.5.2 Specific Objectives .......................................................................................... 10 CHAPTER TWO ......................................................................................................... 11 2.0 LITERATURE REVIEW ...................................................................................... 11 2.1 Epidemiology of Ebola Virus ............................................................................. 11 2.2 Prevalence of Post-Ebola Syndrome .................................................................. 13 2.3 General symptoms among Ebola Survivors by human systems ........................ 14 2.3.1 Post- Ebola Symptoms of the Musculoskeletal System .............................. 14 2.3.2 Post- Ebola Symptoms of the Neurological System ................................... 16 2.3.3 Post-Ebola Symptoms of the Integumentary System ................................. 19 2.3.4 Post- Ebola Symptoms of the Reproductive System ................................... 19 2.4 Onset of Post-Ebola Syndrome .......................................................................... 20 2.5 Duration of Post-Ebola Syndrome ..................................................................... 21 2.6 Economic Challenges ......................................................................................... 22 2.7 Social Challenges ............................................................................................... 22 University of Ghana http://ugspace.ug.edu.gh v CHAPTER THREE ..................................................................................................... 24 3.0 METHODS ............................................................................................................ 24 3.1 Study design ....................................................................................................... 24 3.2 Study area ........................................................................................................... 24 3.3 Variables............................................................................................................. 25 3.3.1 Dependent Variable ..................................................................................... 25 3.3.2 Independent Variables ................................................................................. 25 3.4 Study population ................................................................................................ 26 3.5 Sampling............................................................................................................. 26 3.5.1. Sample Size Determination ........................................................................ 26 3.5.2 Inclusion criteria .......................................................................................... 26 3.5.3 Exclusion criteria ......................................................................................... 27 3.6 Sampling Method ............................................................................................... 27 3.7 Data collection techniques ................................................................................. 30 3.7.1 Quantitative data Collection ........................................................................ 31 3.7.2 Qualitative data collection ........................................................................... 32 3.8 Ethical consideration .......................................................................................... 32 3.9 Training of Research Assistants ......................................................................... 33 3.10 Pretesting .......................................................................................................... 33 3.11 Data Quality Control ........................................................................................ 33 3.11.1 Quantitative Data Quality Control ............................................................. 33 3.11.2 Qualitative Data Quality Control ............................................................... 34 3.12 Data Entry Processing ...................................................................................... 34 3.12.1 Quantitative Data Entry Processing ........................................................... 34 3.12.2 Qualitative Data Entry & Processing ......................................................... 34 3.13 Data Analysis ................................................................................................... 35 3.13.1 Quantitative Data Analysis ........................................................................ 35 3.13.2 Qualitative Data Analysis .......................................................................... 35 CHAPTER FOUR ........................................................................................................ 36 4.0 RESULTS .............................................................................................................. 36 4.1 Characteristics of Respondents .......................................................................... 36 4.2 Prevalence of PES among EVD survivors in Montserrado County, Liberia, 2015-2016................................................................................................................. 38 4.3 The Types of PES among EVD survivors in Montserrado County in 2015-2016 .................................................................................................................................. 41 University of Ghana http://ugspace.ug.edu.gh vi 4.3.1. Types of other symptoms EVD survivors experienced in Montserrado County, Liberia 2015-2016 ...................................................................................... 43 4.4.1 The Onset of PES of the Musculoskeletal System among EVD survivors in Montserrado County, Liberia 2015-2016 ................................................................. 45 4.4.2 The Onset of PES of the Neurological System among EVD survivors in Montserrado County, Liberia 2015-2016 ................................................................. 46 4.4.3 The Onset of PES of the Reproductive System among EVD survivors in Montserrado County, Liberia 2015-2016 ................................................................. 47 4.4.4. The Onset of PES of the Integumentary System among EVD survivors in Montserrado County, Liberia 2015-2016 ................................................................. 48 4.5.1 Duration of PES of the Musculoskeletal System among EVD survivors in Montserrado County 2015-2016 .............................................................................. 49 4.5.2. The Duration of PES of the Neurological system among EVD survivors in Montserrado County 2015-2016 .............................................................................. 50 4.5.3. The Duration of PES of the Reproductive system among EVD survivors in Montserrado County 2015-2016 .............................................................................. 51 4.5.4. The Duration of PES of the Integumentary system among EVD survivors in Montserrado County 2015-2016 .............................................................................. 52 4.6 Risk factors of Post-Ebola Syndrome among EVD survivors in Montserrado County, Liberia 2015-2016 ...................................................................................... 53 4.7 Socio-Economic challenges of PES among EVD survivors .............................. 55 CHAPTER FIVE ......................................................................................................... 62 5.0 DISCUSSION ........................................................................................................ 62 5.1 Limitations of the study...................................................................................... 74 CHAPTER SIX ............................................................................................................ 75 6.0 CONCLUSION & RECOMMENDATIONS ........................................................ 75 6.1 CONCLUSION .................................................................................................. 75 6.2 RECOMMENDATIONS ................................................................................... 76 REFERENCES ............................................................................................................ 77 APPENDICES ............................................................................................................. 81 Appendix 1 ............................................................................................................... 81 Appendix 2 ............................................................................................................... 82 Appendix 3 ............................................................................................................... 92 University of Ghana http://ugspace.ug.edu.gh vii LIST OF TABLES TABLE 1: EPIDEMIOLOGY OF EBOLA VIRUS DISEASE FROM 1976-2014 ........................ 12 TABLE 2: DISTRIBUTION OF EBOLA SURVIVORS PROPORTIONATE TO THE SIZE OF HEALTH DISTRICTS IN MONTSERRADO COUNTY ................................................... 28 TABLE 3 DISTRIBUTION OF FOCUS GROUP PARTICIPANTS BY HEALTH DISTRICTS, MONTSERRADO COUNTY, LIBERIA 2015-2016 ...................................................... 30 TABLE 4: DISTRIBUTION OF SOCIO-DEMOGRAPHIC OF ALL PARTICIPATING EVD SURVIVORS IN THE STUDY IN MONTSERRADO COUNTY, LIBERIA, 2015-2016 ........ 37 TABLE 5: PREVALENCE OF PES AMONG EVD SURVIVORS BY AGE, SEX, MARITAL AND EMPLOYMENT STATUS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 .............. 39 TABLE 6: TYPES OF PES REPORTED AMONG RESPONDENTS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................................................................................... 42 TABLE 7: BINARY LOGISTIC REGRESSION MODEL DEPICTING RISK FACTORS OF PES AMONG SURVIVORS ............................................................................................... 54 University of Ghana http://ugspace.ug.edu.gh viii LIST OF FIGURES FIGURE 1: DIAGRAM OF CONCEPTUAL FRAMEWORK ON POST-EBOLA SYNDROME ........ 5 FIGURE 2: MAP OF THE HEALTH DISTRICT IN MONTSERRADO COUNTY, LIBERIA 2016 . 24 FIGURE 3: PREVALENCE OF PES AMONG EVD SURVIVORS IN HEALTH DISTRICT IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ...................................................... 40 FIGURE 4: DISTRIBUTION OF OTHER SYMPTOMS EVD SURVIVORS EXPERIENCED IN MONTSERRADO COUNTY, LIBERIA 2015-2016. ..................................................... 43 FIGURE 5: NUMBER OF SYMPTOMS EXPERIENCED BY EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ...................................................... 44 FIGURE 6: ONSET OF PES OF THE MUSCULOSKELETAL SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA, 2015-2016 ............................. 45 FIGURE 7: ONSET OF PES OF THE NEUROLOGICAL SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA, 2015-2016 ..................................................... 46 FIGURE 8 : ONSET OF PES OF THE REPRODUCTIVE SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA, 2015-2016 ..................................................... 47 FIGURE 9: ONSET OF PES OF THE INTEGUMENTARY SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA, 2015-2016 ................................................. 48 FIGURE 10: DURATION OF PES OF THE MUSCULOSKELETAL SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................... 49 FIGURE 11: DURATION OF PES OF THE NEUROLOGICAL SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................... 50 FIGURE 12: DURATION OF PES OF THE REPRODUCTIVE SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................... 51 FIGURE 13: DURATION OF PES OF THE INTEGUMENTARY SYSTEM AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................... 52 University of Ghana http://ugspace.ug.edu.gh ix FIGURE 14: AVERAGE ONSET OF PES BY HUMAN SYSTEMS AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ...................................................... 81 FIGURE 15: AVERAGE DURATION OF PES BY THE HUMAN SYSTEMS AMONG EVD SURVIVORS IN MONTSERRADO COUNTY, LIBERIA 2015-2016 ............................... 81 University of Ghana http://ugspace.ug.edu.gh x DEFINITION OF TERMS Post-Ebola Syndrome - Health-related problems Ebola virus disease survivors are enduring after laboratory result has proven negative of EVD. Survivors - A patient who subsequently recovers, after being confirmed positive with a result of RT-PCR testing for Ebola virus on anybody fluid (“WHO | Ebola virus disease,” 2015). Short-term PES - Health related symptoms manifesting between 1-10 months upon discharge from an Ebola treatment Unit. Chest pain - Pain survivors experienced in the chest when lifting up something. This pain in some survivors never ceases with pain killer. Unusual Tiredness- Weakness of the body that prevent survivors from carrying out normal work. Eye problem - Problems of the eyes which includes itching, hurting, redness and blurred vision Menstrual problem - Problem of the menstrual cycle which includes cessation and irregular bleeding. University of Ghana http://ugspace.ug.edu.gh xi DEFINITION OF TERMS Cont’d Itching& Peeling of skin - The presence of rashes /skin diseases on the skin of survivors and peeling of the hands and feet of survivors. Hair loss - The heavy breaking of hair from the head when combing up. Depression, Anxiety & poor sleep - A state in which survivors feel frightened, pity themselves because they were denied access to basic needs, avoided or when survivors experienced flashbacks of their stay and how their relatives and other patients died in the ETU. Survivors Tracker - Someone whose duty at Partnership for Research on Ebola Vaccine in Liberia (PREVAIL) is to monitor survivors on a weekly basis. They are to remind survivors of next appointment date and monitor survivors for complications that may arise. Social mobilizers/ Communicator Someone that visit the homes of survivors trying to make them feel they are a part of society once again. Also, communicators go to the community and create awareness in communities of best health practices that should be carry out. University of Ghana http://ugspace.ug.edu.gh xii LIST OF ABBREVIATIONS CDC - Centers for Disease Control and Prevention ETU- Ebola Treatment Unit EVD - Ebola Virus Disease FGD - Focus Group Discussion PCM - Paracetamol PES- Post- Ebola Syndrome PHEIC - Public Health Emergency of International Concern PREVAIL- Partnership for Research on Ebola Virus in Liberia RT-PCR- Reverse Transcriptase-Polymerase Chain Reaction WHO – World Health Organization University of Ghana http://ugspace.ug.edu.gh xiii ABSTRACT Introduction An increased number of survivors have emerged from the 2014 West African Ebola Virus Disease outbreak. Fifty percent of survivors have reported a combination of physical and psychological symptoms termed Post-Ebola Syndrome. However, these physical and psychological symptoms reported by survivors during convalescence is not well understood. This is due to the high case fatality rates of previous outbreaks, fewer patients surviving and the existence of limited literature that has contributed to the phenomenon of Post-Ebola Syndrome. Also, 58% of survivors in Liberia resides in Montserrado County. A county of which the magnitude of Post-Ebola Syndrome among EVD survivors is unknown. Therefore, the study aim was to estimate the prevalence of Post-Ebola Syndrome among EVD survivors in Montserrado County. Method An assessment was conducted to determine the prevalence, types, onset, duration and socio-economic challenges of Post-Ebola Syndrome among survivors .The study adopted a cross-sectional design. Quantitative data was collected using semi-structured questionnaire while, qualitative data was collected using an interview guide. A total of 300 respondents were stratified by the health districts and randomly selected from the seven health districts in Montserrado County. During the study data were collected for the following variables; Ebola survivors demographic, prior and post- Ebola health history, and socio-economic status. University of Ghana http://ugspace.ug.edu.gh xiv Result Prevalence of Post-Ebola Syndrome among study participants was 91.3% (274/300). The commonest symptoms were reported from the following systems of the human body; Neurological System 35% (eyes problem 44%, headache 50.7%, sleep disorder 21.3%, unusual tiredness 25.7%) and Musculoskeletal System 34% (abdominal pain 22.8%, chest pain 21.6%, muscles pain 32.8% and joints pains 59%). The onset of Post- Ebola Syndrome occurred more frequently between the first 1-12 weeks after discharged from a treatment unit. Symptoms were intermittent and persist up to 12 months after discharged from a treatment center. Fifty- five percent (165/300), of Ebola survivors, were unemployed and 72% (197/274) of those with Post-Ebola Syndrome had accessed health care. Of those accessing health care, 50% (99/197) have never improved with treatment due to inadequate drugs, limited health facilities and lack of hired specialists, while 11.6% (23/197) had somehow improved. Fifty- eight percent (173/300) of survivors had been stigmatized upon discharge from the ETU. Conclusion: Prevalence of Post-Ebola Syndrome in Montserrado County, Liberia is high. Due to the newness of Post-Ebola Syndrome in Liberia, there is a need for the Ministry of Health, Liberia and its Partners to provide adequate drugs for appropriate health conditions, and hired specialists for the commonest reported symptoms at facilities rendering health services to EVD survivors. University of Ghana http://ugspace.ug.edu.gh 1 CHAPTER ONE 1.0 INTRODUCTION 1.1 Background Ebola virus is a zoonotic disease that affects both humans and animals. The disease can cause acute illness that can be fatal if left untreated. The Ebola virus disease (EVD) has an average case fatality rate of 50% (WHO, 2015). The first outbreak of this disease was two simultaneous outbreaks occurring in Democratic Republic of Congo former Zaire and Sudan in 1976. The Congo outbreak occurred in a village near the Ebola River from which the disease got its name (WHO, 2015). The virus comes from the family filoviridae. It has three genera; Cueva virus, Marburg virus and Ebola virus. Five species of the virus have been identified namely: Zaire, Bundibugyo, Sudan, Reston and Tai forest (Tamfum et al., 2016). The species associated with the largest outbreak in Africa are the Zaire Ebola virus, Bundibugyo Ebola virus, and Sudan Ebola virus. The Zaire strain of Ebola virus is the species responsible for the 2014 outbreak in West Africa (WHO, 2015b). The disease is known to be transmitted from animals found in the rain forest. Human transmission occurs when broken skin comes in direct contact with blood, secretion, organs or other bodily fluid of infected people and surfaces contaminated by infected fluid (WHO, 2015). The disease usually presents clinical features such as high fever, headache, arthralgia, myalgia, sore throat, malaise with nausea at the onset and persists further with continuous fever failing treatment with antimalarial drug or antibiotics, intense fatigue, followed by diarrhea and abdominal pain, anorexia, vomiting, and pseudo-remission. At Pseudo-remission stage of infection, the patients feel better and seek food. The patient health status begins to improve and may recover at this stage and therefore survive the disease (Tamfum et al., 2016). University of Ghana http://ugspace.ug.edu.gh 2 The Ebola Virus Disease outbreak of 2014 is the largest in history accounting for 28,646 cases as of 30th March 2016 (WHO, 2016a). The outbreak started in December 2013 in a village called (Gueckedou) in the Republic of Guinea with the death of a two-year-old boy. On 13th March 2014, the Ministry of Health of Guinea alerted the World Health Organization of the strange illness and deaths in Guinea (WHO, 2015b). In Liberia, the first two cases of Ebola virus disease were confirmed on 30th March 2014 in Foya district, Lofa County near the border with Guinea. In the month of April, the outbreak stabilized in the Country. The second wave of EVD began in June with a sharp increase in the number of cases. The 2014 EVD outbreak also spread to other countries such as United States, United Kingdom, Spain, Senegal, Nigeria, Mali, and Italy. On August 8th, 2014 the World Health Organization declared the Ebola epidemic in West Africa a Public Health Emergency of International Concern [PHEIC] (WHO, 2015). By September 2014, Liberia had recorded the highest number of almost 2,000 cases. By the end of 2014, the outbreak in Monrovia subsided. On May 9, 2015, the World Health Organization declared Liberia free of Ebola after two incubation periods of 42 days without a new case (WHO, 2015). In between June to July 2015 the third wave of Ebola virus disease outbreak broke out in Liberia. The outbreak was confirmed in Margibi County with two (2) deaths reported (CDC, 2016). On 3rd September 2015, Liberia was declared free of Ebola virus disease by the World Health Organization. The fourth wave of the Ebola Virus Disease occurred in Montserrado County with three confirmed (3) cases in November 2015 (WHO, 2015b). University of Ghana http://ugspace.ug.edu.gh 3 A recent wave of EVD in Liberia was reported in the first week of April 2016. Three cases were confirmed of which one died (WHO, 2016c). Patients who survive the disease are faced with health conditions that may persist for a long time after being diagnosed negative of the virus. These health conditions have been termed Post-Ebola syndrome [PES] (Igonoh, 2016). Post-Ebola Syndrome (PES) is a group of physical and psychological symptoms affecting Ebola Virus Disease survivors. These symptoms range from short-term (12 months) to long- term [≥24 months] (Vetter, Kaiser, Schibler, Ciglenecki, & Baush, 2016). Some of these symptoms include headache, joint and muscles pain, extreme fatigue, menstrual cessation, clouded vision, hair loss, and deafness (WHO, 2016b). Due to these challenging health problems, until after a year, Ebola survivors are unable to restart their former work. It increases both economic and health burden of communities and Nations. It also increases economic hardship on the households of these survivors as finances are limited. Currently, there is a five-year study being conducted by a Liberia-United States partnership-based research group (PREVAIL) to determine long-term consequences of EVD among survivors, determine whether survivors develop immunity that will protect them from future Ebola Virus disease and evaluate whether earlier EVD infected persons can transmit infection to close contacts and sexual partners (NIH, 2015). Upon returning home from the ETU, there have been some International and local organizations aiding survivors with cash and assorted items for a maximum of six months. Since the peak of the Ebola Virus Disease outbreak in Liberia, a survivor’s network has emerged. The network has been further decentralized into sectors with supervisors assigned in the various counties of Liberia. To improve survivors livelihood, there are regular meetings conducted by each county. University of Ghana http://ugspace.ug.edu.gh 4 These meetings are held to enable survivors to explain their prevailing situation to supervisors and to ensure unity within the network. Furthermore, EVD survivors in Montserrado County have been asked by the Ministry of Health, Liberia to seek health care at two government hospitals in the county and a non-profit clinic being operated by the Medicine San Frontier, Liberia for a period of two years (WHO, 2016d). 1.2 Problem Statement Survivors of the 2014 West African Ebola Virus Disease epidemic are predisposed to many health and non-health related problems. Although the phenomenon of PES has been identified following previous EVD outbreaks, due to the high case fatality rate of previous outbreaks that resulted in fewer survivors, little research has been conducted. It is still not well understood the health problems survivors experienced during recovery post-Ebola. More than 50% of survivors experience symptoms such as visual problem, joint and chest pains, headaches, extreme fatigue and depression (WHO, 2016b). These symptoms have made it tough for survivors to take up their prior lives for practically a year or more. Poor health seeking behavior coupled with limited access to quality healthcare and health personnel’s fear complicates the management of Ebola Virus Disease (ACAPS, 2015). According to Schaffner (2016), the existence of poverty and poor prior nutritional status could be influencing Post-Ebola syndrome. Other factors include age, viral count, Ebola virus disease supportive treatment and high concentration of disinfectant (Nanyonga et al, 2016; WHO, 2016). Also, many survivors are enduring stigmatization by communities and family members (Barry & Amola, 2003). The 2014 Ebola Virus Disease outbreak also reduced Liberia’s economy and public finances growth from 5.9 pre-Ebola to 2.0% in 2014 (Marquez, 2016). These factors are worsening economic hardship and limiting access to healthcare. University of Ghana http://ugspace.ug.edu.gh 5 Though a five-year study is ongoing in Liberia, up- to-date the estimated number of EVD survivors in Montserrado County with health and non-health related problems are unknown and not documented. The study was conducted to document the prevalence of PES among EVD survivors in Montserrado County, Liberia, types of symptoms, onset, and duration of symptoms and socio-economic challenges of PES among EVD survivors. Figure 1: Diagram of Conceptual Framework on Post-Ebola Syndrome Outcome Post-Ebola Syndrome Late access to health care (Viral count) Host factors Symptoms of EVD Nutritional status Age Pre-existing health condition Socio-economic challenges Hospital factors Types of EVD supportive treatment Duration of exposure to disinfectant University of Ghana http://ugspace.ug.edu.gh 6 1.3 Conceptual Framework on Post-Ebola syndrome Factors that could be associated with PES can be divided into the host factors and hospital factors. Host factors include: Severity of EVD which can be measured by viral count, nutritional status, age, pre-existing health conditions, and socio-economic challenges. Hospital factors consist of EVD supportive treatment, duration of exposure to disinfectant and access to health care. Host Factors Symptoms of EVD – The disease displays clinical features with an onset of fever after 2-21 days incubation period. EVD is described by an unclear “flu-like condition with fever, headache, fatigue, muscles pain, sore throat, follow by GIT symptoms such as nausea, vomiting, diarrhea and abdominal pain”. Patients also present rash, symptoms of impaired liver and kidney function, with some cases experiencing internal and external bleeding, hiccups, conjunctivitis, desquamation and jaundice (WHO, 2015). These symptoms could persist in survivors from an acute to a chronic stage after a patient sample has proven negative for the virus by RT-PCR. Nutritional Status- The state in which essential vitamins and minerals such as vitamins B, C, K, A, E, folic acid, calcium, and iron are lacking in the daily diet is termed poor nutritional status. Other factors to consider under poor nutrition are the prior nutritional status, characteristics and duration of infection which can result in loss of appetite in a patient recovering from an infection and the diet taken during recovery (BPAC, 2016). These factors can impair resistance to infection resulting in a PES susceptible person. Age-could be associated with PES as the younger a patient is, it is most likely their immune system is stronger unlike, an older person whose immune system deteriorates with age. Other factors that exacerbate age are diet, exercise, personal habits, and psychosocial factors. These factors influenced a patient resistance to a disease (Gavazzi & Krause, 2002). University of Ghana http://ugspace.ug.edu.gh 7 Pre-existing health conditions- Liberia is a country recovering from 14 years of civil unrest. Poor health seeking behavior as a result of the economic hardship coupled with fewer competent health practitioners and inadequate health infrastructure has resulted in many curable diseases recording high morbidities. Due to this reason, ill people are mostly fond of attending pharmacies/drug stores. Where they buy medication without prescriptions or seek care from a Physician assistant, Nurse or Nurse-aid in a community without properly being diagnosed by a recognized health facility. This could have resulted in an individual harboring a chronic disease unknowingly and the infection of EVD that might have exacerbated PES (ACAPS, 2015). Hospital factors Duration of exposure to disinfectants- Long exposure to disinfectant was due to the severity of EVD as a result of high viral load. Disinfectant used in Ebola treatment center, on a corpse, and on ill patients was chlorine. It consisted of three standard concentrations 0.5 % (inanimate objects), 0.05 % (ill patients) and 1% (corpse). Chlorine is a poisonous substance that causes symptoms in the blood, heart, skin, lungs, eyes, nose, throat and gastrointestinal tract (NIH, 2016). Probably it may be one of the causes of Post-Ebola Syndrome. Types of supportive treatment-There were no proven treatment available for Ebola Virus Disease. Notwithstanding, various treatment protocol were developed for supportive care, which is the pillar for treating EVD. Supportive care composes of administration of oral medication, oral rehydration fluid, nutritional supplements and psychosocial support. The dosage of these treatments varies depending on the severity of disease (viral count). PES could mostly likely be as a result of supportive care through the irregular dosages used during the severe stage of EVD. University of Ghana http://ugspace.ug.edu.gh 8 Late access to health care- Access to health care during the epidemic was in two folds. Hospital factor: An individual being conscious of their exposure time and sought care early but due to the limited available beds in the ETUs between July-September, patients were denied treatment. Thereby resulting in a patient seeking care late when they were severely ill (WHO, 2014). Late access to health care which resulted in high viral count also, increase a patient duration of exposure to disinfectant. Which maybe one of the causes of PES. Host factor: An individual (host) who experienced symptoms of EVD but not knowing they were diseased. Hence, they stay at home taking treatment for symptoms that appears like one of malaria until they were severely ill before reaching an ETU. Also, when an individual was conscious of their exposure schedule but refuse to accept they were infested with EVD for which reason they stay at home and reported to the ETU late. University of Ghana http://ugspace.ug.edu.gh 9 1.4 Justification Ebola Virus disease 2014 outbreak in West Africa, was the largest since the first outbreak that occurred in 1976. The outbreak which started in December 2013 in Guinea also extended to other countries in West Africa such as Liberia, Nigeria, Mali, and Sierra Leone. The outbreak recorded 28,646 cases. Liberia, one of the hardest hit Countries recorded about 10,675 cases and 4,809 deaths (WHO, 2016a). A little over 1,541 survivors have been line listed by the Ministry of Health Liberia (WHO, 2016d). Montserrado County in Liberia recorded the highest number of cases and survivors. Survivors in Montserrado County accounts for 58% of survivors in Liberia (WHO, 2016d). These survivors after leaving the Ebola treatment center are still experiencing health related problems that is termed Post-Ebola syndrome (Racaniello, 2016). This study will provide a clearer picture of the prevalence of PES among EVD survivors in Montserrado County post-discharge from an ETU, rather than anecdotal findings that have been reported. Also, the study will reveal the burden posed by these survivors on the health care system in Montserrado County. The evidence of this study will inform policy makers to establish and maintain access to healthcare for survivors, and to develop livelihood programs that will improve survivors living standards if the need exists. University of Ghana http://ugspace.ug.edu.gh 10 1.5 Objectives 1.5.1 General Objective: To assess Post- Ebola syndrome among Ebola Virus Disease survivors in Montserrado County Liberia. 1.5.2 Specific Objectives: 1) To determine the prevalence of post-Ebola syndrome among Ebola survivors in Montserrado County. 2) To determine types of post-Ebola syndrome affecting survivors 3) To determine time of onset of Post-Ebola Syndrome among survivors 4) To determine the duration of the types of symptoms among survivors. 5) To determine the socio-economic challenges of PES on survivors University of Ghana http://ugspace.ug.edu.gh 11 CHAPTER TWO 2.0 LITERATURE REVIEW 2.1 Epidemiology of Ebola Virus Ebola virus is a pathogen that was initially documented in 1976 as the causal agent of hemorrhagic fevers in the Democratic Republic of Congo and Sudan. The virus is from the filoviridae family of only two members. Members of this family cause acute febrile illness that is fatal. The serotypes of each genus have distinctive features which often result in high death rate during outbreaks. The most lethal difference of these is the Ebola Zaire subtypes. Human cases arise through close contact with infected primates (Portela, 1998). With its presence in the human population, the virus spreads from human to human transmission when broken skin comes in direct contact with blood secretion, organs or other bodily fluid of infected people and surfaces contaminated by infected fluid (WHO, 2015). Below is a table showing the distribution of Ebola Virus Disease outbreak since its first occurrence in 1976 (Table 1) University of Ghana http://ugspace.ug.edu.gh 12 Table 1: Epidemiology of Ebola Virus Disease from 1976-2014 Year Location Species Cases Deaths CFR 1976 South Sudan SUDV 284 151 53.2% 1976 DRC EBOV 318 280 88.1% 1979 South Sudan SUDV 34 22 64.7% 1994 Gabon EBOV 52 31 59.6% 1995 DRC EBOV 315 250 79.4% 1996 Gabon EBOV 60 45 75.0% 2000 Uganda SUDV 425 224 52.7% 2001 DRC/Gabon EBOV 122 96 78.7% 2002 DRC EBOV 143 128 89.5% 2007 DRC EBOV 264 187 70.8% 2007 Uganda BDBV 149 37 24.8% 2012 Uganda SUDV 14 7 50.0% 2012 DRC BDBV 52 25 48.1% 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 Guinea Liberia Sierra Leone Mali Nigeria Senegal Italy Spain UK USA EBOV EBOV EBOV EBOV EBOV EBOV EBOV EBOV EBOV EBOV 3,811 10,675 14,124 8 20 1 1 1 1 4 2,543 4,809 3,956 6 8 0 0 0 0 1 66.7% 45% 28% 75% 40% 0% 0% 0% 0% 25% Data source: http://www.cdc.gov/vhf/ebola/outbreaks/history/distribution-map (WHO, 2016a) In order to ensure effective case management of an EVD outbreak, the following pillars roles need to be defined and activated : active surveillance, adequate laboratory services, contact tracing, safe burials, community engagements and social mobilizations (WHO, 2015). There is no known therapy identified for EVD. Experimental findings may provide therapy for filovirus infection (Peters & LeDuc, 1999). University of Ghana http://ugspace.ug.edu.gh http://www.cdc.gov/vhf/ebola/outbreaks/history/distribution-map 13 2.2 Prevalence of Post-Ebola Syndrome A study was conducted in Kenema District, Sierra Leone in 2014 using a convenience sampling method. Of the 81 EVD survivors involved, 50% of survivors in the study reported experiencing symptoms after discharged from an Ebola Treatment Unit (Nanyonga et al, 2016; WHO, 2016). A cross-sectional Study involving 304 survivors in Bombali District, Sierra Leone in 2015 to enquire about health difficulties faced by EVD survivors, health complications they were suffering post EVD, the onset of these complains and co-morbid encounters. One hundred and eighty-nine survivors reported health problems upon discharge from the ETU (Nabena et al., 2016). Survivors participating in a survey in Guinea in 2015, reported 103 of the 105 survivors experienced symptoms after their discharge from the Ebola Treatment Unit (Qureshi, 2015). In 2015, 8 Ebola Virus Disease survivors treated in the United States were assessed for symptoms arising and treatment taken after EVD. All EVD survivors reported a symptom experienced during their recovery stage post EVD (Epstein, Wong, Kallen, & Uyeki, 2016). A cross-sectional study was conducted in 2015 at the Military Hospital, Freetown Sierra Leone involving 44 survivors. The study aimed at recording symptoms experienced by survivors upon initial follow-up visit after 3 weeks from the ETU with negative RT-PCR result. Survivors in the study reported at least one symptom experienced after discharge from the ETU (Scott et al., 2016). As shown by a cohort study in 1995, in Kikwit Democratic Republic of Congo with 29 EVD survivors and 152 households contacts. Two-third of survivors continued to experience symptoms during 21 months follow-up visits following EVD (Rowe et al., 1999). University of Ghana http://ugspace.ug.edu.gh 14 An assessment of 166 EVD survivors was conducted in Freetown, Sierra Leone at the Medicine San Frontier Ebola Survivors Clinic within four months after discharge from the ETU. This was done to describe the long–term complications of EVD and their risk factors. All EVD survivors reported experiencing health problems (Tiffany et al., 2016). 2.3 General symptoms among Ebola Survivors by human systems 2.3.1 Post- Ebola Symptoms of the Musculoskeletal System A study by Nabena in Bombali district Sierra Leone, in 2015 shows of the 304 survivors, 189 complained of PES. More than half suffered joints pain. Widespread body pain was also reported among survivors (Nabena et al., 2016). Recently published in 2015 in Nigeria was a paper by an EVD survivor. She stated that, upon discharge from the ETU, joint, chest and muscles pains were experienced. She further narrated that these aches continued for about six months ranging from mild to severe aches (Igonoh, 2016). In Liberia, the ongoing study by the partnership for research of Ebola virus in Liberia has published preliminary findings after examination of 82 survivors by a team of neurologists from the National Institute of Neurological Disorders and stroke. The average age of Ebola survivors been examined was 35 years. One of the commonest symptoms recorded was muscles pain (American Academy of Neurology, 2016). Stated from records reviewed at the Medicine San Frontier Clinic in Monrovia, Liberia, arthralgia shows to be the most constantly recorded symptom. It has been experienced by 50- 70% of EVD survivors seeking care at the clinic. The commonly affected joints were in the order of occurrences: the knee, back, hips, fingers, wrists, neck, shoulders, ankles and elbows (Vetter et al., 2016). University of Ghana http://ugspace.ug.edu.gh 15 In Kenema district, Sierra Leone in 2015, a survey was conducted among 81 EVD survivors. As revealed by the study, all survivors experienced continuous health and social problems. Some of the most prevailing symptoms that have been observed in patient were musculoskeletal and epigastric pain (Nanyonga et al., 2016). A total of one hundred and three Ebola virus disease survivors out of 105 participants in a study in Guinea suffered common symptoms such as joints pain, muscles pain, abdominal pain and back pain (Qureshi, 2015). During the assessment of eight Ebola virus disease survivors treated in the United States of America, survivors were asked questions pertaining to diagnostic testing, symptoms experienced and treatment taken during the recovery stage. Symptoms reported were both mild and intense health problems that needed treatment or re-hospitalization. One of the frequently occurring symptoms were arthralgia. Among all eight survivors, only one patient had all symptoms resolved in totality (Epstein et al, 2015). A cross-sectional study of early clinical sequelae of Ebola virus disease in Sierra Leone was done involving 603 survivors. The study describes the nature, prevalence and predictor of ocular, auditory and articular EVD sequelae among survivors. Arthralgia was reported by 74% of EVD survivors that participated in the Study. Concluding he stated, during EVD convalescence, clinical sequelae are common (Mattia et al., 2016). A cohort study published in Uganda after the 2007 Bundibugyo EVD outbreak revealed, long- term symptoms among EVD survivors. Joints pain was one of the symptoms experienced 29 months after discharge from the ETU (Clark et al., 2015). University of Ghana http://ugspace.ug.edu.gh 16 A Cross-sectional study involving 44 survivors was conducted at the 34TH Military Hospital, Freetown, Sierra Leone; 27% of EVD survivors had joints pain, 34% experienced muscles pain and 9% suffered both muscles and joints pain. On the overall musculoskeletal pain was experienced by 70% of EVD survivors in the study during convalescence (Scott et al., 2016). 2.3.2 Post- Ebola Symptoms of the Neurological System Preliminary findings have been published by the partnership for research of Ebola virus in Liberia. The findings were released after an examination of 82 EVD survivors by a team of neurologists from the National Institute of Neurological Disorders and stroke. It states that majority of survivors reported neurological irregularities. The commonest ongoing health problems were memory loss, headache, weakness and depression (NIH, 2015). Qureshi and others in Guinea in 2015 assessing more than a hundred survivors stated EVD survivors suffered common symptoms such as insomnia, dizziness, decreased exercise intolerance and headaches. Survivors also reported psychological effects such as post-traumatic stress and depression (Qureshi et al., 2015). An assessment of EVD survivors in the United States has shown 75% of the 8 survivors complained of psychological symptoms; to include anxiety, short-term memory loss, lethargy and insomnia. Three of the survivors complained of paresthesia while one was treated for peripheral neuropathy (Epstein et al., 2016). While describing the nature, prevalence and predictor of ocular, auditory and articular EVD sequelae among survivors in Sierra Leone, new ocular symptoms were recorded accounting for 60% and uveitis 18%. New ocular symptoms and uveitis were jointly reported clinical manifestation. These symptoms were independently associated with higher Ebola viral load during the acute stage of EVD (Mattia et al., 2016). University of Ghana http://ugspace.ug.edu.gh 17 Vackey and others have discussed a patient 43 years of age who was evacuated to the United States from Kenema, Sierra Leone during the 2014 West African Ebola outbreak. The patient was discharged after forty days of treatment with a combination of experimental antiviral agent and other therapies. Three weeks after discharged, a general ocular complaint developed in a patient. By 9 weeks after patient discharge, “he developed acute hypertensive anterior uveitis in his left eye. The patient received topical and oral hypertensive agents initially but the complaint progress. The patient aqueous fluid was tested positive for Ebola virus by quantitative reverse transcriptase polymerase chain reaction (qRT-PCR)”. Patient’s vision improved with a combination of tropical injectable and “twenty-one-day course of experimental antiviral agent”. Ocular complications have been observed in the patients especially uveitis. Persistence of EVD in aqueous humor has been identified in one patient with progressive acute hypertensive anterior uveitis (Varkey et al., 2016). In Bombali district Sierra Leone, in 2015 a study involving 304 EVD survivors reports 189 survivors had suffered health problems of which more than half complain of eyes problem during post-discharge from an ETU (Nabena et al., 2016). By EVD survivors participating in a cross-sectional study in Freetown, Sierra Leone, ocular problems have been suffered by 14%. Ocular symptoms were described as a pain of the eyes, blurred vision, clear discharge, and red eyes (Scott et al., 2016). Five of the eight survivors participating in an assessment of their health status post-Ebola in the United States had complained of ocular pain, discomfort, and blurriness of the eyes (Epstein et al., 2016). Eyes problem was one of the commonest symptoms complained of among 103 Ebola virus disease survivors in Guinea in 2015. A total of one hundred and five Ebola virus disease survivors participated in the study (Qureshi, 2015). University of Ghana http://ugspace.ug.edu.gh 18 Ocular problems also reported from the record reviewed by Vetter at the Medicine San Frontier Clinic in Monrovia, Liberia was eyes pain, conjunctivitis, hyper-lacrimation, uveitis, and loss of visual acuity seem to be common among survivors (Vetter et al., 2016). Eye problems have been reported by 50% of 81 EVD survivors in Kenema District, Sierra Leone in 2015 (Nanyonga et al., 2016; WHO, 2016b). A study to ascertain long-term health problems of EVD survivors in Uganda was carried out with 49 survivors and seronegative controls. The result shows that survivors of Bundibugyo Ebola virus outbreak were at greater risk than controls for long-term health problems. One of which were ocular problems such as ocular pain and blurred vision (Clark et al., 2015). Other studies have published reports of neurological symptoms experienced by EVD survivors after discharged from the treatment center. Studies (Nanyonga et al., 2016) report include headache, excessive fatigue, insomnia, and anxiety. Also, fatigue as stated by (Igonoh, 2016), headache and psychological problems as reported by (Nabena et al., 2016), and sleep difficulty, memory problems, loss hearing and confusion among EVD survivors after 29 months post discharge (Clark et al., 2015). Headache accounting for 48% was also reported by Scott in Sierra Leone, after conducting a cross-sectional study to determine symptoms post EVD (Scott et al., 2016). University of Ghana http://ugspace.ug.edu.gh 19 2.3.3 Post-Ebola Symptoms of the Integumentary System Stated by Ada in Nigeria, along her recovery path, she experienced common desquamation of skin and hair loss. She went further to say, despite some survivors experiencing symptoms, others do not experience any. These symptoms tend to vary by patient based on the patient’s immune system. (Igonoh, 2016). Skin abnormalities were reported among 189 EVD survivors in Bombali district Sierra Leone, during a cross-sectional study following discharge from the ETU in 2015. Skin disease accounted for 13% while hair loss was reported by 4% of EVD survivors been studied (Nabena et al., 2016). A survey was done between 4-7 weeks after discharge, among 8 EVD patients who had survived EVD in the United States. Alopecia was reported by 75% of the respondents during the interviewed (Epstein et al., 2016). As published in findings from a record reviewed at the Medicine San Frontier Clinic in Liberia, survivors have reported skin diseases such as desquamation of the skin, dryness of skin and pruritus. Sites that were affected by these symptoms were the hands and the feet. Also, alopecia has been experienced by some EVD survivors reporting at the clinic (Vetter et al., 2016). 2.3.4 Post- Ebola Symptoms of the Reproductive System A cross-sectional study was conducted in Bombali district, Sierra Leone involving 304 participants. In the study, females constituted over half of participants in the study, 189 of the survivors interviewed had experienced a symptom after ETU discharge. Some complaints reported were menstrual irregularity and erectile dysfunction. The onset of complaints varies and was often irregular (Nabena et al., 2016). Survey conducted among 105 Ebola virus disease survivors in Guinea stated 103 had suffered common symptoms one of which were sexual dysfunction (Qureshi et al., 2015). University of Ghana http://ugspace.ug.edu.gh 20 Another survey in Kenema district, Sierra Leone in 2015 reported amenorrhea as one of the symptoms experienced by EVD survivors upon discharge from the ETU (Nanyonga et al., 2016; WHO, 2016b). 2.4 Onset of Post-Ebola Syndrome A paper has been published by an EVD survivor in Nigeria in 2015. Stated by the survivor, symptoms continued after discharge ranging from mild to severe aches. These symptoms tend to vary by the patient based on the patient’s immune system. The survivor went further to say that there is no two survivor which display the same symptom (Igonoh, 2016) . Ongoing five years study by the partnership for research of Ebola virus in Liberia has published preliminary findings after examination of 82 survivors. It has stated that the onset of health problems started at least six months after being certified disease free (NIH, 2015). Symptoms onset among Ebola virus disease survivors treated in the United States of America were believed to have occurred between 2-4 weeks following discharge from the ETU. This was stated during interviews with survivors between 16-28 weeks after discharge (Epstein et al., 2016) A record reviewed done in Liberia shows that PES begins often in the first few weeks after discharge and probably last for more than a year, despite the severity of symptoms which might decrease with time (Vetter et al., 2016). During the 2014 West African Ebola Virus Disease outbreak, a doctor working in Sierra Leone became infected and was flown to the United States for treatment. The patient survived. During recovery, he was examined for PES. Symptoms developed in the patient by 10 weeks following discharge (Varkey et al., 2016). University of Ghana http://ugspace.ug.edu.gh 21 A cross-sectional study in Bombali district, Sierra Leone involving 304 EVD survivors also published its findings. It shows that majority of Ebola Virus Disease survivors start to experienced health problems between 1-4 weeks post-discharge from an ETU (Nabena et al., 2016). 2.5 Duration of Post-Ebola Syndrome Forty-nine survivors were contacted 29 months after the EVD outbreak in Uganda. The study also included seronegative controls. These survivors provided information about their health status and capability to function, also blood samples were obtained for further study. The result shows that survivors of Bundibugyo Ebola virus infection outbreak were at greater risk than controls for long-term health problems (Clark et al., 2015). The Ebola virus Disease can display systemic infections that tend to persist long in the survivor after patient have been diagnosed negative. Evident were other viral infections, 10% joints pain recorded between 3-5 years following chikungunya and 29% hearing loss following Lassa fever outbreak (Racaniello, 2016). Reported of long-term symptoms by a cohort study involving 29 EVD survivors and 152 contacts. They were followed up to determine whether their body fluid contains a positive strain of EVD and secondary transmission do occur during post-discharge symptoms. It shows survivors experienced symptoms up to 6 and 21 months of follow-up visits (Rowe et al., 1999). University of Ghana http://ugspace.ug.edu.gh 22 2.6 Economic Challenges The Liberia Institute for Statistics and Geo-Information Services has published the report from it 2014 Households Income and Expenditure Survey. The paper revealed the unemployment rates nationally to be 3%. Also, 77% of the head count were involved in agriculture activities while 41% were wage employees and 38% were self-employed (LISGIS, 2016). Stated by a World Bank Group in a report tittled Ebola Virus Disease, from Crisis to More Résilient Heath System, the economic cost of the Country had dropped from 5% prior to the EVD outbreak to 2% in 2014 (Marquez, 2016). 2.7 Social Challenges In 1998 a survey of Ebola survivor’s feelings and experiences in Kikwit, Democratic Republic of Congo was conducted. A total of 34 survivors were interviewed. Women survivors who participated in the survey constituted 76%. Twelve participating survivors were hospital staff. Sixteen of the survivors were married. The onset of EVD was immediately suspected by 32% of survivors. Initial feelings were fear of falling seriously ill (50%), denial (47%), shame (15%), and fear of being accused by neighbors (21%). Survivors participating in the survey that received support from the medical staff were 85%. After Ebola, during the recovery period about 35% of survivors felt rejected by either a friend, family member or neighbor. Eighteen of survivors reported having no money during sickness. No psychological effect from EVD was reported among 39% of survivors, but intensify grief was experienced by family members who relatives did not survive the epidemic (De Roo et al., 1998). University of Ghana http://ugspace.ug.edu.gh 23 A study was done in Northern Uganda in 2003, It aim was to look at the cultural context of Ebola. Survivors reported being stigmatized more than 1 month after discharged from the hospital. This was because survivors were still experiencing other health problems such as fatigue, leg pains and vision problems. The majority of survivors reported intense stigmatization. Survivors were banned from returning home, while some were abandoned by their spouses. Women experienced (82%) higher level of stigma compare to men (Barry & Amola, 2003). University of Ghana http://ugspace.ug.edu.gh 24 CHAPTER THREE 3.0 METHODS 3.1 Study design The research was a cross-sectional study that employed both quantitative and qualitative research methods. A quantitative method was used to collect data on the types of PES, and to calculate the estimated prevalence, onset, and duration of Post-Ebola Syndrome. Also, the qualitative method was used to collect data on the socio-economic challenges survivors of PES faced. 3.2 Study area The study was done in Montserrado County. Montserrado County is one of the fifteen counties in Libera. It hosts the County’s capital Monrovia. Montserrado County is made up of urban Monrovia, greater Monrovia, and rural Montserrado. It has seven health districts namely: Careysburg, Bushrod Island, Somalia Drive, St. Paul, Central Monrovia, Todee and Common wealth districts. (Figure 2) Map of the Study Area Figure 2: Map of the Health district in Montserrado County, Liberia 2016 Source: WHO, 2016 University of Ghana http://ugspace.ug.edu.gh 25 3.3 Variables 3.3.1 Dependent Variable: Post-Ebola Syndrome – The kind of health problems EVD survivor remembered suffering from the first week of discharge to interview date. 3.3.2 Independent Variables: 1. Age- any EVD survivor selected as a participant who is ≥18years. 2. Sex- Female & Male 3. Employment status- any EVD survivor who is earning ≥$100.00 Liberian dollars daily, weekly, or monthly during post-EVD recovery 4. Duration of symptoms- the number of months PES lasted in EVD survivor after discharge from an ETU. 5. The length of stay in the ETU- the total days, weeks, or months an EVD survivor spend in the ETU from the date of admission to date of discharge. 6. Marital status- An EVD survivor who is either single, married, divorced, widow/ widower 7. Residence- An EVD survivor who lives in one of the seven health districts in Montserrado County (Somalia Drive, Commonwealth, Central Monrovia, Bushrod Island, St. Paul, Careysburg and Todee Districts) 8. Social challenges- An EVD survivor who was stigmatized by husband, wife, family members, employer, or community. Also, an EVD survivors experiencing gender- specific health problems during post-ebola recovery. 9. Economic challenges- an EVD survivor who is not able to work due to PES or stigmatization by an employer, friends or community. 10. The number of symptoms- a total number of symptoms reported by an EVD survivor from the first week of discharge to interview date. University of Ghana http://ugspace.ug.edu.gh 26 11. The onset of PES- The start month of symptoms EVD survivor experienced upon discharge from an ETU. 3.4 Study population The study population was Ebola Virus Disease Survivors recorded in Montserrado County from the beginning of the outbreak May 2014- March 2015. The population of EVD survivors in Montserrado County accounts for 58% of EVD survivors in Liberia. 3.5 Sampling 3.5.1. Sample Size Determination The sample size (n) was 250 survivors. To get the sample size for the study, stat calculator in Epi info was used with a population of 712 survivors line-listed by MOH, at a 50% prevalence, a significance level of 5% and a 10% rate for non-responses. However, during pretest of the study tool, one in every five survivors could not provide accurate answers to all the questions been asked. We further increased the non-response rate to 20%. Thereby giving us a sample size of 300. The estimated 50% prevalence used in this study was reported in Sequele of Ebola Virus Disease, Kenema Sierra Leone in 2015 by Nanyonga. 3.5.2 Inclusion criteria : 1. All Ebola survivors ≥18years of age 2. EVD survivor should be a resident of one of the seven health districts in Montserrado County 3. All EVD survivors providing a photocopy or original discharge certificate 4. All EVD survivors with a membership card of the Survivors network, Liberia. 5. An EVD survivor that consented to be a part of the study University of Ghana http://ugspace.ug.edu.gh 27 3.5.3 Exclusion criteria : 1. All Ebola survivor <18 years of age 2. EVD survivor who is not a resident of one of the seven health districts in Montserrado County 3. Any EVD survivor who did not have an original or photocopy of the discharge certificate. 4. Any EVD survivor that could not provide an identification card of the survivor network 5. EVD survivors that refuse to be a part of the study by not signing the consent form 3.6 Sampling Method 3.6.1 Quantitative Sampling Method A stratified sampling method was used. Survivors in Montserrado County who met the inclusion criteria for the study was stratified by the seven health districts. To get a true representation of EVD survivors ≥18 years in each health districts needed for the interview, the population of survivors proportionate to size for each health district was calculated as follow. (Table 2) University of Ghana http://ugspace.ug.edu.gh 28 Table 2: Distribution of Ebola Survivors proportionate to the size of Health Districts in Montserrado County Health Districts in Montserrado Number of Survivors ≥18 yrs. in each health district Percentage of survivors in each health district Number of survivors ≥18 yrs. in each health district needed for the interview Bushrod Island 216 30.34% 81 Central Monrovia 78 10.96% 29 Commonwealth 164 23.03% 62 Somalia drive 164 23.03% 62 St. Paul 71 9.97% 27 Careysburg 16 2.25% 6 Todee 3 0.42% 1 Total 712 100% 268 After which, 1) We listed all survivors in Montserrado County according to the 7 health districts in the County placing each survivor under their specific health district of residence. 2) Seven separate lists of EVD survivors were developed 3) Each list recorded the total survivors in each of the 7 health districts in Montserrado County. 4) We further used a simple random techniques with a random number table to randomly pick our study participants. 5) Each numeral on the random number table had five digits of which the last two digits of each picked number was taken. 6) We looked for the picked number obtained from the random number table on the list of survivors for a particular health district. University of Ghana http://ugspace.ug.edu.gh 29 7) The name, address and telephone number been represented by the picked number from the random number table were written on a separate sheet as a participant for the study from the particular health district. 8) Continuously performing this method one at a time, we did for each health district until our sample size for the study was achieved. 9) A number was replaced in a situation where the random two digits picked was above the listed survivors in a particular health district. 3.6.2. Qualitative Sampling Method Participants were selected for the qualitative survey from the five health districts with the highest number of survivors. We used a purposive sampling technique in which, we attended two weekly meetings of each of the five health districts during which time we randomly selected participants for the discussion. Age categories for the discussion were, adolescent females and males age 18-35 years and adult males and females 36 years and above. Also after the selection of participants, we held meetings with survivors at which time we discuss a convenient place, date and time for each discussion. Each focus group discussions consisted of eight participants. Four participants of Central Monrovia merged with 4 participants of St. Paul district for the discussion. The focus group discussions in Bushrod Island consisted of females 18-35 years of age while, the merged St. Paul and Central Monrovia districts FGD consisted of females 36 years and above. Male 18-35 years of age FGD was conducted in Somalia Drive District and males 36 years and above FGD was carry out in Commonwealth district. (Figure 3) University of Ghana http://ugspace.ug.edu.gh 30 Table 3 Distribution of Focus group participants by health Districts, Montserrado County, Liberia 2015-2016 Health Districts in Montserrado EVD Survivors ≥18 yrs. needed for the FGD Bushrod Island 8 Central Monrovia 4 Commonwealth 8 Somalia Drive 8 St. Paul 4 Total 32 3.7 Data collection techniques Prior to the selection of participants to partake in the study, the principal researcher met with the national coordinator, president, sector heads and sector supervisors of Ebola Survivors Network in Liberia. This meeting was organized to explain the study, its importance, and the process through which participants were to be selected to take part in the study. After which, the recruitment process of participants for the study was conducted from November- December 2015. Data collection began in January 2016 and continued until April 2015. During which time participants of the study were visited at their homes, clinics and market places in communities around Montserrado County. Data were collected through interviews with Ebola survivors using a semi- structured questionnaire to determine the prevalence of Post-Ebola syndrome among Ebola virus disease survivors in Montserrado County. The questionnaire was used to record survivors demographic information, individual Ebola history, and pre and post- Ebola medical history. University of Ghana http://ugspace.ug.edu.gh 31 A total of four focus group discussions were conducted to determine the socio-economic challenges of Post-Ebola syndrome on survivors. The focus group discussions were done at a convenient location in four of the health districts. Firstly, the study team went through a formal introduction with participants. After which, ground rules for the focus group discussion were read to the participants. Prior to commencing discussions, survivors were informed that discussions were going to be recorded, notes were written and pictures were taken. All survivors participating in the discussion were asked to sign a consent form. After which a unique identification number was given to each discussant. A psycho-social counselor briefly talked to survivors, encouraging them to fully participate and minimize the wave of trauma, sadness, and emotions it caused them by participating in the discussion. Survivors were asked to think through a recall period of 12 months beginning March 2014-March 2015. 3.7.1 Quantitative data Collection Upon completion of the meeting with Ebola survivors, the interview with participants began. Using the selected names, address and telephone number bearing the picked last two digits from the specific sampling frame, participants were called via mobile phone prior to the team visit. This was done to maximize time and cost. Three teams consisting of two members each, a research assistant, psycho-social counselor and a social mobilizer from the survivors network located survivors at their homes in communities around Montserrado County. Those not seen at their homes were visited at the clinic or market places. Before the commencement of interviews, Informed consent was signed by each participant and principal investigator or research assistant. Each interview lasted a maximum of 20-25 minutes. University of Ghana http://ugspace.ug.edu.gh 32 3.7.2 Qualitative data collection The principal researcher conducted focus group discussion with Ebola survivors in Montserrado County using an interview guide. A total of four (4) focus group discussions were conducted. Each discussion consisted of 8 participants. Eight adolescents male between the ages 18-35 years and 8 adolescents female between the ages 18-35 years. Also 8 adult females of ages >35 years and 8 adults males of ages >35 years. Each focus group discussion lasted a maximum of 2 hours 30 minutes. A team of three members comprising of a moderator, note taker, and psycho-social counselor were used to collect data during the focus group discussions. Survivors were asked one at a time to call their unique identification numbers and explain their experienced from the onset of EVD which entails contacting infection, seeking treatment, admission to the ETU , how did their community, employers and family received them following discharge from an ETU, and whether there were health problems experienced by post-Ebola recovery. Also, they were asked about their past and present jobs, if survivors were not earning anything how were they coping, whether they have access health care upon discharge, if yes how and where have they accessed health care. These were to evaluate the socio-economic challenges of post-Ebola syndrome on survivors. 3.8 Ethical consideration The study protocol and instruments were approved by the University of Liberia Pacific Institute of Research & Evaluation International Review Board Monrovia, Liberia 00004982. A total of five meetings were conducted with Ebola Survivor Network. The first meeting was with officials and the national coordinator of Ebola Survivors Network. The other four meetings were done in four sectors of Montserrado County. This was done to explain the objectives and method of the study before participation of survivors. A written informed consent by each participant was signed to ensure willingness, privacy, and confidentiality of information. University of Ghana http://ugspace.ug.edu.gh 33 In a situation where there were an illiterate/incapacitated survivors an ink pad was provided in order to gain consent. 3.9 Training of Research Assistants The collection of data was done within a three-month period, January-April 2016. Prior to the beginning of the study, five research assistants who met the criteria during recruitment of research assistants were hired and trained. Of the five research assistants hired, two assisted the principal researcher during the focus group discussion by performing the following roles as a note taker and a psycho-social counselor. 3.10 Pretesting Pre-testing of the data collection instrument was carried out in two randomly selected communities involving 30 participants. Communities were in Margibi County, specifically Boys Town and Dolo’s Town communities. In Dolo’s Town, an interpreter of the Town helped some participants to understand questions been asked. The maximum time reached to complete a questionnaire was 45 minutes. While in Boys Town community, the maximum time it took to complete a questionnaire was 35 minutes. After the pretest, questions number two, five, seven and fifteen were refined. 3.11 Data Quality Control 3.11.1 Quantitative Data Quality Control The research assistants were trained to administer the questionnaires. Education was also provided for research assistants on how to probe further for open-ended questions during interviews. The principal researcher checked all questionnaire at the close of the day to counter- check completeness of questionnaire.The researcher also conducted review meetings three times a week with research assistants. This was to discuss difficulties experienced in the day and issues raised by participants. University of Ghana http://ugspace.ug.edu.gh 34 3.11.2 Qualitative Data Quality Control After the interviews, field notes were inserted into the relevant sections of the transcription and further linked to the relevant respondent(s), where applicable. We reviewed the transcribed data for accuracy and/or completeness. 3.12 Data Entry Processing 3.12.1 Quantitative Data Entry Processing A new file was open in SPSS version 23 field. A form was created where questions from the questionnaire were typed, variables were sorted and coded, and value labels were given to variables with multiple responses. Data was entered, saved and analyzed in SPSS version 23 field. 3.12.2 Qualitative Data Entry & Processing The focus group discussion recordings done were played continuously and transcribed. Transcriptions were compared with notes taken. Transcripts were grouped into themes and responses based on the category of questions. Thematic codes were developed based on focus group topic guide. Responses to questions under each theme were further grouped into options of range 2-6. From the narratives, recurrent statements and responses were typed and analyzed by percentages using excel 3.0 software. University of Ghana http://ugspace.ug.edu.gh 35 3.13 Data Analysis 3.13.1 Quantitative Data Analysis The characteristics of study participants were explained through descriptive statistics. Demographic variables that were continuous, were measured using the median and mode. Prevalence of PES by demographic variables was presented in composite tables by proportions. Graph depicting the prevalence of PES among EVD survivors by residence (health districts) Composite table showing types, frequency and percentages distribution of individual symptoms participants experienced to include: chest pain, muscles pain, eyes problems, abdominal pain, joints pain, unusual tiredness, headache etc. Graphs depicting the onset and duration of PES from 1-3, 4-6, 9-10 and 10-12 months by systems of the human body. Bar charts showing the number of PES experienced among EVD survivors Multiple logistic regression model presented to show risk factors of PES by independent variables (sex, age, employment status, the length of stay, and educational level) at a 95% confidence interval and a p-value of <0.05. 3.13.2 Qualitative Data Analysis A total of 6 themes were generated to include; Experienced of EVD, Socio-challenges faced by EVD survivors, coping mechanisms adapted by EVD survivors, sex-related challenges of PES among EVD survivors, economic challenges of PES among EVD survivors, Accessibility of health care provided to EVD survivors post discharge. Also, direct quotes were written with references made to their specific speakers. University of Ghana http://ugspace.ug.edu.gh 36 CHAPTER FOUR 4.0 RESULTS 4.1 Characteristics of Respondents Sixty- three percent (190/300) of the study participants were females. For the 262 respondents who could recall their ages during the interview, their ages ranged from 18-70 years with a median of 30 years and a modal age of 34 years. While during the focus group discussion, the ages range was 18-53 years with a median age of 36 years and the modal age was 28 years. Most of the participating EVD survivors in the study were single accounting for 61% (182/300), followed by married survivors accounting for 27% (81/300). Of the total participating survivors, 56% (168/300) were not employed, 44% (132/300) were employed. Also of all respondents who stated their occupations, business people accounted for 28% (84/300), followed by students with 18% (54/300). (Figure 4) University of Ghana http://ugspace.ug.edu.gh 37 Table 4: Distribution of socio-demographic characteristics of all participating EVD survivors in the study in Montserrado County, Liberia, 2015-2016 (*) Unknown depict survivors who could not recall their ages during the interview. Variables Frequency N=300 Proportion (%) Age Categories (years) 18-24 52 17.3 25-34 101 33.7 35-44 97 32.3 45-54 38 12.7 55-64 5 1.7 >65 1 0.3 Unknown* 6 2 Sex Male 110 36.6 Female 190 63.3 Marital status Single 182 61 Married 81 27 Divorced 4 1 Widower & Widow 33 11 Employment status Employed 132 44 Unemployed 168 56 University of Ghana http://ugspace.ug.edu.gh 38 4.2 Prevalence of PES among EVD survivors in Montserrado County, Liberia, 2015-2016 Of all respondents, 8.7% (26/300) had never experienced PES. The remaining 91.3% (274/300) complained of at least having experienced a health problem. a. Overall, the prevalence of PES was higher among divorced and widowed respondents than among single and married participants. The prevalence of PES among survivors was 1.5% (4/274) and 12% (32/274) respectively for divorced and widowed whilst it was 60% (167/274) and 26% (71/81) among single and married respondents respectively. Also, the prevalence of PES among EVD survivors that were unemployed was high accounting for 53% (145/274). Females experienced PES more indicating 65% (178/274) compare to their male counterparts. It was observed that PES occurred mainly in the adult population between ages 25-34 years 34% (93/274) and 35-44 years 33% (90/274). (Figure 5). University of Ghana http://ugspace.ug.edu.gh 39 Table 5: Prevalence of PES among EVD survivors by age, sex, marital and employment status in Montserrado County, Liberia 2015-2016 Variables Post-Ebola Syndrome Yes (N=274) (n) (%) No (N=26) (n) (%) Age Categories (years) 18-24 45 16 7 27 25-34 93 34 8 31 35-44 90 33 7 27 45-54 35 13 3 12 ≥55 5 1.8 1 3.8 Unknown ages 6 2.2 Sex Male 96 35 14 54 Female 178 65 12 46 Marital status Single 167 60 15 58 Married 71 26 10 38 Divorced 4 1.5 Widower/Widow 32 12 1 3.8 Employment status Employed 129 47 6 23 Unemployed 145 53 20 77 *yes (EVD survivors having PES)*no (EVD survivors who did not report having PES), n= number of people University of Ghana http://ugspace.ug.edu.gh 40 4.2.2. Prevalence of PES by health districts in Montserrado County, Liberia 2015-2016 Prevalence of PES among EVD survivors by health districts in Montserrado County ranged from 0.4% (1/274) in Todee District, St. Paul 3.6% (10/274), Central Monrovia 12.4% (34/274), Commonwealth 24.1% (66/274), Somalia 26.6% (73/274) and 32.8% (90/274) in Bushrod District. (Figure 3) Figure 3: Prevalence of PES among EVD survivors in Health district in Montserrado County, Liberia 2015-2016 0 5 10 15 20 25 30 35 Todee St.Paul Central Monrovia Commonwealth Somalia Drive Bushrod Island P er ce n ta ge Health Districts University of Ghana http://ugspace.ug.edu.gh 41 4.3 The Types of PES among EVD survivors in Montserrado County in 2015-2016 The commonest symptoms observed among respondents with PES were joint pains (59%), headache (51%), eyes problem (44 %), muscles pain (32.8%) and unusual tiredness (25.7%).The least symptoms observed were depression (14.9%) and anxiety (17.2%) (Table 6) University of Ghana http://ugspace.ug.edu.gh 42 Table 6: Types of PES reported among respondents in Montserrado County, Liberia 2015-2016 PES Frequency Proportion Chest pain 58 21.6 203 75.7 Muscles Pain 88 32.8 177 66 Eyes Problems 118 44.0 146 54.5 Abdominal Pain 61 22.8 201 75 Testis Pain 13 16.2* 67 83.7 Joints Pain 158 59 107 39.9 Menstrual Problems 32 19.7* 130 80 Unusual Tiredness 69 25.7 196 73 Itching of Skin 40 14.9 224 83.6 Peeling of the Skin 47 17.5 215 80.2 Anxiety 46 17.2 215 80.2 Depression 40 14.9 221 82.5 Sleep Disorder 57 21.3 205 76.5 Headache 136 50.7 130 48.5 Others 186 68 “Others” represent symptoms other than the 14 listed above while includes Absentmindedness, hair loss, generalized body pain, back aches, swollen feet, diabetes, hemorrhoids, ear pain, hearing loss, erectile dysfunction, heart palpitation, frequent fever, numbness of feet, liver and heart problems. (*) Percentage calculated using only denominator of relevant sex. Symptoms not averaging up to 268 survivors interviewed accounts for survivors with no PES. University of Ghana http://ugspace.ug.edu.gh 43 4.3.1. Types of other symptoms EVD survivors experienced in Montserrado County, Liberia 2015-2016 At total of 68% (186/274) EVD survivors with PES reported experiencing symptoms other than the 14 commonest symptoms identified. These other symptoms included hair loss 11.3 % (21/186), absent-mindedness 5.4% (10/186), and loss of appetite 2% (4/186) while others were recorded below 1%. (Figure 4) Figure 4: Distribution of other symptoms EVD survivors experienced in Montserrado County, Liberia 2015-2016. University of Ghana http://ugspace.ug.edu.gh 44 4.3.2. The number of symptoms experienced by EVD survivors in Montserrado County, Liberia 2015-2016. Among the 274 EVD survivors who had experienced symptoms, 18% (49/274), had experienced a single symptom, 64% (175/274) had experienced between 2-6 symptoms, while 18% (50/274) reported having experienced more than six symptoms. (Figure 5) Figure 5: Number of symptoms experienced by EVD survivors in Montserrado County, Liberia 2015-2016 0 10 20 30 40 50 60 70 2-6 symptoms >6 symptoms 1 sypmtom P er ce n ta ge o f su rv iv o rs Number of symptoms University of Ghana http://ugspace.ug.edu.gh 45 4.4.1 The Onset of PES of the Musculoskeletal System among EVD survivors in Montserrado County, Liberia 2015-2016 Within the first 3 months of recovery from EVD, the majority of survivors started experiencing musculoskeletal symptoms such as joint pain 76%, abdominal pain 73%, muscles pain 72%, and chest pain 69%. In the second quarter of the year 4-6 months, joints pain were reported by 6% of survivors, abdominal pain 5%, and muscles pain 4%. During the third quarter of the year 7-9 months, abdominal pain accounted for 10%, chest pain 9%, joints pain 8% and muscles pain 7%. As reported in the last quarter of the year 10-12 months less than 5% of cases were reported for each symptom. (Figure 6) Figure 6: Onset of PES of the Musculoskeletal System among EVD Survivors in Montserrado County, Liberia, 2015-2016 0 10 20 30 40 50 60 70 80 0-3 Months 4-6 Months 7-9 months 10-12months P er ce n ta ge o f Su rv iv o rs Onset of Musculoskeletal Symptoms Chest Pain Muscle Pain Abdominal Pain Joints Pain University of Ghana http://ugspace.ug.edu.gh 46 4.4.2 The Onset of PES of the Neurological System among EVD survivors in Montserrado County, Liberia 2015-2016 During the first 3 months of recovery from EVD, majority of EVD survivors had reported experiencing a wide range of neurological problems consisting of sleep disorder 88%, headache 82%, unusual tiredness 80%, anxiety 78%, eyes problems 76% and depression 74%. By the second quarter 4-6 months less number of survivors reported neurological symptoms sleep disorder 16%, headache 14%, unusual tiredness 12%, anxiety 11%, and depression accounting for 5% of survivors. Between the 7-12 months, less than 10% of survivors complained of neurological symptoms. (Figure 7) Figure 7: Onset of PES of the Neurological System among EVD Survivors in Montserrado County, Liberia, 2015-2016 0 10 20 30 40 50 60 70 80 90 100 0-3 Months 4-6 Months 7-9 months 10-12months P er ce n ta ge o f Su rv iv o rs Onset of Neurological Symptoms Eye Problem Unusual Tiredness Anxiety Headache Depression Sleep disorder University of Ghana http://ugspace.ug.edu.gh 47 4.4.3 The Onset of PES of the Reproductive System among EVD survivors in Montserrado County, Liberia 2015-2016 Testes pain was reported by 78% of survivors during the first 3 months post discharge, 11% of male survivors complained of testes pain between 4-6 and 7-9 months each and by 10-12 months 6% reported experiencing testes pain. While females survivors accounting for 91% reported menstrual problems during 1-3 months, 18% reported problems by 4-6 months, 9% by 7-9 months and less than 5% by 10-12 months. These menstrual problems include menstrual irregularities and cessation. (Figure 8) Figure 8 : Onset of PES of the Reproductive System among EVD survivors in Montserrado County, Liberia, 2015-2016 0 10 20 30 40 50 60 70 80 90 100 0-3 Months 4-6 Months 7-9 months 10-12months P er ce n ta ge o f Su rv iv o rs Onset of Reproductive Symptoms Testes Pain Menstrual Problems University of Ghana http://ugspace.ug.edu.gh 48 4.4.4. The Onset of PES of the Integumentary System among EVD survivors in Montserrado County, Liberia 2015-2016 Itching of the skin and peeling of the skin were reported by 84% and 91% of survivors between 1-3 months respectively, 16% and 19% by 4-6 months, 11% and 2% 7-9 months while 5% of survivors complained of itching of skin by 10-12 months. (Figure 9) Figure 9: Onset of PES of the Integumentary System among EVD survivors in Montserrado County, Liberia, 2015-2016 0 10 20 30 40 50 60 70 80 90 100 0-3 Months 4-6 Months 7-9 months 10-12months P er ce n ta ge o f Su rv iv o rs Onset of Integumentary Symptoms Itching of skin Peeling of skin University of Ghana http://ugspace.ug.edu.gh 49 4.5.1 Duration of PES of the Musculoskeletal System among EVD survivors in Montserrado County 2015-2016 EVD survivors experienced symptoms of the musculoskeletal system with duration of 12 months. EVD survivors 54% reported chest pain to have lasted for 3 months periods. Less than 15% of survivors chest pain ended between 4-9 months while 23 % of survivors said chest pain persisted 12 months. Abdominal pain was reported by 40% of survivors to have lasted for a 3 month period followed by less than 15% of survivors who stated abdominal pain ended by the 9 month and 32% with duration up to 12 months. Muscle pain was reported by 40% of survivors to have ended by 3 months while 33% reported symptom persist up to 12 months. Joint pain 19% was reported to have ended by 3 months and 39% complained of joints pain up to 12 months. (Figure10) Figure 10: Duration of PES of the Musculoskeletal System among EVD survivors in Montserrado County, Liberia 2015-2016 0 10 20 30 40 50 60 3 Months 6 Months 9 Months 12 Months P er ce n ta ge o f Su rv iv o rs Duration of Musculoskeletal Symptoms chest pain Muscle Pain Abdominal Pain Joints Pain University of Ghana http://ugspace.ug.edu.gh 50 4.5.2. The Duration of PES of the Neurological system among EVD survivors in Montserrado County 2015-2016 Number of Survivors with symptoms of the neurological system reported to have ended by 3 months is as follow; anxiety 41%, depression 39%, eyes problem 34%, headache 28%, unusual tiredness 24% and sleep disorder 21%. While less than 35 % reported symptoms to have ended between 4-9 months and majority accounting for unusual tiredness 61%, headache 57%, sleep disorder 47%, eyes problem 46 %, depression 39% and anxiety 13% to have persisted up to 12 months. (Figure 11) Figure 11: Duration of PES of the Neurological System among EVD survivors in Montserrado County, Liberia 2015-2016 0 10 20 30 40 50 60 70 3 Months 6 Months 9 Months 12 Months P er ce n ta ge o f Su rv iv o rs Duration of Neurological Symptoms Anxiety Depression Sleep disorder Headache Eyes Problem Unsual Tiredness University of Ghana http://ugspace.ug.edu.gh 51 4.5.3. The Duration of PES of the Reproductive system among EVD survivors in Montserrado County 2015-2016 Symptoms of the reproductive system reported by survivors, recorded few cases that ended within 3 months and this accounted for testes pain 19%, and menstrual problems 25%. By 6 months during recovery 29% of testes pain cases and menstrual problems, 13% was reported to have ended. While a higher number of survivors, testes pain 34% and menstrual problems 53% were stated to have ended by the 9 months post discharge. For each symptom testes pain and menstrual problems, less than 20% of survivors stated experiencing symptoms up to the 12 months post discharge. (Figure 12) Figure 12: Duration of PES of the Reproductive System among EVD survivors in Montserrado County, Liberia 2015-2016 0 10 20 30 40 50 60 3 Months 6 Months 9 Months 12 Months P er ce n ta ge o f Su rv iv o rs Duration of Reproductive Symptoms Testes Pain Menstrual Problem University of Ghana http://ugspace.ug.edu.gh 52 4.5.4. The Duration of PES of the Integumentary system among EVD survivors in Montserrado County 2015-2016 Skin problems reported such as itching of the skin (56%), and peeling of the skin (84%) were seen to have ended by the 3rd month among EVD survivors after discharge. Less than 15% of survivors reported skin problems between 4-6 months. And persisted up to 12 months accounting for 22% itching skin and peeling skin (2%). (Figure 12) Figure 13: Duration of PES of the Integumentary System among EVD survivors in Montserrado County, Liberia 2015-2016 0 10 20 30 40 50 60 70 80 90 3 Months 6 Months 9 Months 12 Months P er ce n ta ge o f Su rv iv o rs Duration of Integumentary Symptoms Itching of Skin Peeling of Skin University of Ghana http://ugspace.ug.edu.gh 53 4.6 Risk factors of Post-Ebola Syndrome among EVD survivors in Montserrado County, Liberia 2015-2016 We also determined the risk factors associated with PES. Using the adjusted odd ratio as the reference we observed there was no variable that was significantly associated with PES. Notwithstanding, among respondents interviewed of who stated been educated, they were 1.74 times more likely to report PES than uneducated respondents (AOR=1.74, [CI=0.58-5.15], p- value >0.05). Respondents with age between 35-70 years were 0.52 times less likely to experienced PES compare to respondents 18-34 years (AOR=0.52, [CI=0.20-1.34], p-value >0.05). Survivors interviewed having a short length of stay in an ETU (<2 weeks) were 0.62 times less likely to complained of PES than survivors who stay for a long time in an ETU (AOR=0.62, [CI=0.25 – 1.51], p-value > 0.05). Male respondents were 0.09 times less likely to experienced PES compare to female counter parts (AOR=0.45, [CI=0.18 -1.12], p-value >0.05). Participants interviewed who stated been employed were 2.42 times more likely to report PES than those unemployed participants (AOR=2.42, [CI=0.88-6.65], p-value >0.05). (Figure 7) University of Ghana http://ugspace.ug.edu.gh 54 Table 7: Binary Logistic Regression model depicting risk factors of PES among survivors Independent Variables N Unadjusted OR 95% CI P-value (0.05) Adjusted OR 95% CI P-value (0.05) Employment Status No 268 1.000 1.000 Yes 1.911 0.770-4.743 0.155 2.415 0.877-6.650 0.090 Age (years) 18-34 262 1.000 1.000 35-70 0.800 0.350-1.828 0.595 0.516 0.199 – 1.337 0.173 Length of stay in ETU Long 250 1.000 1.000 Short 0.637 0.264-1.537 0.312 0.613 0.250 – 1.505 0.286 Sex Female 268 1.000 1.000 Male 0.423 0.186-0.966 0.035 0.447 0.178 – 1.124 0.090 Education No 266 1.000 1.000 Yes 1.334 0.506-3.531 0.557 1.735 0.584 -5.153 0.321 University of Ghana http://ugspace.ug.edu.gh 55 4.7 Socio-Economic challenges of PES among EVD survivors Theme 1: Experience of EVD Contracting EVD Fifty-six percent (18/32) of discussants had contracted the virus from a family member (mother, father, sister, brother, wife, husband, cousin, daughter, aunt, in-laws, and uncle).While, 31.3% (10/32) of survivors got infected from a neighbor or friend and 12.5% (4/32) didn’t remember how they got infected. (Table 8) Table 8: Distribution of responses from EVD survivors of their EVD experiences in Montserrado County, Liberia, 2015 Categories Recurrent statements Total Respondents (n=32) Percentage (%) Seeking care during illness Self-Reporting Community or household member reporting 13 19 40.6 59.9 Total 32 100 Theme 2: Social challenges among EVD survivors upon discharge from the ETU Reception from Family upon return from the ETU Upon return from the ETU, sixty-two percent (20/32) of respondents said a majority of family members happily welcome them, nine percent (3/32) said they received distant love, they were confined to a room with all necessary things and no visitations from others except telephone calls. Other survivors complained of being abandoned by their partners 15.6% (5/32) upon return in which females constituted eighty percent (4/5).The remaining thirteen percent (4/32) respondents said they came home to meet only family members who were either little sisters, brothers or children since others had died as a result of the outbreak. University of Ghana http://ugspace.ug.edu.gh 56 Reception from community upon discharge