Aims
To determine the prevalence of suicidal behavior among adolescents with epilepsy at Butabika and Mulago National Referral Hospitals and associated factors.
Study Setting
The study which informs this paper was conducted at the Child and Adolescent Mental Health Clinic of Butabika National Mental Referral Hospital and the Pediatric Neurology Clinic and Mental Health Clinic of Mulago National Referral Hospital for a period of 6 months, between August 2017 and February 2018. Butabika National Mental Referral Hospital is located 12 Kms east of Kampala City. It is the only national referral mental health institution providing specialized care to people with mental illnesses as well as teaching for all cadres specializing in mental health ranging from nursing cadres to postgraduate students. In addition, it provides out-patient services to the people from surrounding areas. It is the second biggest hospital in Uganda with a bed capacity of 550. However, patient numbers often range between 720–780. On average, the hospital attends to approximately 25,000 patients annually. The Child and Adolescent Mental Health clinic in the hospital offers general child and adolescent psychiatry services, inpatient services, psychological therapies, occupational therapies, social services, dispensary and referral to other specialized services. The bed capacity is 40. The admission age limit for the clinic is 17 years. Once the adolescent turns 18 years, they are transferred to the adult mental health clinic. The clinic runs from Monday to Friday excluding public holidays. A typical clinic day involves first getting a number in the queue (first come first serve basis) and submitting medical forms (which include patient’s outpatient number) to the records office to access patient’s file, which is then forwarded to the clinician on duty. The client then waits in the queue till called and seen by the clinician. Emergencies are attended to as soon as they arrive. Psychiatric Nurses, Clinical officers, Medical officers, Senior House Officers and Psychiatrists attend to the patients. The Child and Adolescent Mental Health clinic attends to 250–300 children and adolescents every week. Between 50–62% of those attending have epilepsy and approximately 25% of these are newly diagnosed with epilepsy every month [25].
Mulago hospital is the largest in Uganda and is located 3 Kms from the city center. It is the National Referral for the entire country. It is also the general hospital for metropolitan Kampala. It has an official bed capacity of 1,790. It is a teaching hospital for Makerere University College of Health Sciences, Mulago School of Nursing and Midwifery and Mulago Paramedical Schools. The Pediatric Neurology Clinic is under the Department of Pediatrics and Child Health and is run as an outpatient specialized clinic catering for children with neurological disorders once a week every. It serves as a referral outpatient clinic for the neurological cases from all over the country. Annually, the clinic sees about 300 new patients. On each clinic day, 40–70 children aged 2 months to 17 years are attended to. The clinic accepts an upper age limit of 17 years. Epilepsy contributes to 60% of the attendance. On the other hand, the Mental Health Clinic is the Psychiatric out patient’s clinic at Mulago Hospital which runs between 8:00am – 3:00 pm from Monday to Friday. The clinic offers psychiatric, psychological and occupational therapies for general adult psychiatric disorders, child and adolescent psychiatric disorders and epilepsy. The clinic attends to between 20–40 patients daily. Between 40–60% of the clinic attendance is due to epilepsy.
Study design
We used a descriptive cross sectional study design.
Study Participants
These were adolescent patients with epilepsy aged 10–17 years. They were required to have been accompanied by a caregiver who would consent on their behalf. The study inclusion criteria were; (i) having a diagnosis of epilepsy as per medical records in patient files and clinical interview, (ii) falling in the age range of 10–17 years, and (iii) providing assent and informed consent by caregivers. Those excluded were those that did not understand the questions or who were unable to go through with the interview.
Sample Size Estimation
A total sample size of 223 participants was estimated using the formula for finite populations [26]. A prevalence (p) of 50% was used because no study of prevalence and of suicidal behavior in adolescents had been done in our setting. Combined, the study sites received about 88 adolescents per month and for the study period of 6 months which totaled to approximately 528 adolescents. Using the finite population correction factor calculation of sample size, the sample was adjusted for available population as shown n = noN/(no+(N-1)) where n0 = 385 and N = 528.
Sampling Procedure
A consecutive sampling method with a random start was used due to time constraints. We recruited all available adolescents who met the inclusion criteria during the study period until the desired sample size was achieved. The study participants were recruited every Monday - Friday at Butabika Hospital Child and Adolescent Mental Health Clinic and Mulago Mental Health Clinic. At the Pediatric Neurology Clinic in Mulago Hospital, participants were recruited on the clinic day (Thursday). Approximately 2–5 patients were recruited per day from Monday to Friday over a period of 28 weeks.
Study procedure
Four research assistants (RA), who were psychiatric nurses were trained on how to administer the study tools and ethical conduct. Two were deployed at each hospital and worked hand in hand with the staff on given clinic days. The staff of all the clinics had been oriented about the study aim and target population. Upon arrival to the clinic, anyone of the available nursing staff received patient’s medical forms and forwarded them to the records department which then traced the patient files and gave them to the nurse who would then queue them up for the clinicians on duty. The clinicians on duty then forwarded the adolescents with epilepsy to the research team. A brief clinical interview and review of the patient’s file was done to verify the diagnosis of epilepsy according the operational definition of this study. The research team then explained the purpose of the study and obtained informed consent from the primary caregiver and assent from the adolescents, signified by affixing of a thumbprint or a signature. Those who met the inclusion criteria were then enrolled in the study. They were led to a consultation room and the data was collected using interviewer administered pretested questionnaires. The questions were mainly addressed to the adolescent and where clarification was needed, the care giver was asked. Each interview lasted approximately 20 minutes. Upon completion, the participant was helped to get their medication. The filled in questionnaires and patients file were labeled with a study number and then locked away for safe custody pending data entry. Adolescents who were found to be suicidal or having any other psychiatric disorders were forwarded to the clinician/ psychiatrist/ psychologist on duty for further management.
Study Measures
The dependent variable was suicidal behavior. Independent variables were; adolescent socio-demographic characteristics, primary caregiver socio-demographic characteristics, seizure related characteristics, psychiatric comorbidity, coping and perceived social support.
Study Instruments
All instruments were interviewer administered to all the adolescents to reduce variability in understanding of questions due to differences in literacy levels.
Diagnosis Of Epilepsy
A brief clinical interview was done. The adolescents and or their caregivers were asked if the adolescent had ever experienced unprovoked seizures more than 24 hours apart. A review of the patient’s file was done to find evidence of epilepsy in the notes of the previous visits. These two sources of information were compared and used to verify the diagnosis of epilepsy as operationally defined. Those whose clinical description matched that of the operational definition and those who had their medical records supportive of epilepsy were considered to have epilepsy.
A demographics questionnaire was used to collect socio-demographic data about adolescents and their caregivers. Variables in the tool included the patient’s age, sex, tribe, address, religion, level of education, address, socio-economic status and caregiver socio-demographics relating to relationship with the adolescent, marital status, house ownership, occupation, level of education and level of family income.
Mini International Neuropsychiatric Interview For Children And Adolescents (MINI-KID) was used to assess suicidal behavior and psychiatric comorbidity. It is a short structured diagnostic interview for DSM-IV and ICD-10 psychiatric disorders. Although the MINI-KID has not been validated in Uganda, it has been internationally validated in various studies in various African cultures and it has been used in many previous studies in Uganda [28–30]. Substantial to excellent MINI-KID to K-SADS-PL (Kiddie - Schedule for Affective Disorders and Schizophrenia– Present and Life-time) concordance was found for syndromic diagnoses of any mood disorder, any anxiety disorder, any substance use disorder, and behavioral disorder.
Suicidal behavior was assessed with the suicidality module of the MINI-KID. This module includes questions on hopelessness, deliberate self-harm, death wishes, suicidal ideas, plans and attempts. Responses are either YES or NO with each having a pre-assigned score. Any score ≥ 1 was translated to meeting the criteria for suicidal behavior. Suicide risk scores were low, moderate and high when the scores were 1–8, 9–16, and ≥ 17 respectively [27]. The categories of suicidal behavior were as operationally defined, that is; passive suicidal ideation, active suicidal ideation and suicidal attempts. Passive suicidal ideation was made up of two questions, one on death wishes in the past month and another on death wishes in one’s lifetime. Active suicidal ideation included two questions, one on having suicide plans and another on having taken active steps to prepare for suicide. Suicide attempts was made up of two questions, one on suicide attempts in the past month and another on suicide attempts in the lifetime. Frequencies and percentages were used to describe these categories.
Psychiatric Comorbidity was measured with the major depressive episode module, generalized anxiety disorder module, alcohol dependence/abuse module, substance dependence/abuse(non-alcohol) module, and psychotic disorders and mood disorders with psychotic features modules.
The Brief Coping Orientation to Problems Experienced (Brief COPE) was used to assess coping strategies [31]. A previous report to establish the reliability and validity of the scale indicated a high Cronbach’s alpha values for some domains such as Religion (α = 0.82) and Substance use (α = 0.90). Other domains indicated acceptable Cronbach’s alpha values of between 0.73 for humor and 0.50 for venting. The tool has 28 four-point Likert scale questions, with responses coded as; 1 = I haven’t been doing this at all, 2 = I have been doing this a little bit, 3 = I have been doing this a medium amount, and 4 = I have been doing this a lot. The tool has 14 domains with two questions contributing to each domain. In this study, YES was taken to be any responses 3 and 4 on the scale. And for each domain, YES was taken to be anyone who had 2 YES responses on each question. The tool has been used in some studies in Uganda however has not been validated[32].
Multidimensional Scale of Perceived Social Support – (MSPSS) was used to assess perceived social support [33]. The tool was validated and adapted for use in the Ugandan setting and was found to have good psychometric properties with Cronbach alpha values 0.79, 0.80, and 0.82 on all 3 sub-scales (Family, Friends and Significant other respectively) and internal consistency of 0.83 [34]. The MSPSS is a brief self-report questionnaire with 12 items that subjectively measure perceived social support. Each of the three subscales has four items with 5-point Likert scale with response codes as 1 = Strongly Disagree, 2 = Mildly Disagree, 3 = Neutral, 4 = Mildly Agree and 5 = Strongly Agree. In this study all who circled option 4 or 5 were taken as YES responses and the rest as NO. For each domain containing 4 questions, all who had 3 or 4 YES responses for the four questions were taken as YES.
Seizure Related Characteristics
The following questions assessed seizure characteristics and were answered by the patient and or parent/guardian. The questions were asked irrespective of epilepsy treatment status and included;
how many seizures have you had in the last 1 year?, have you sustained any physical injuries from seizures?, how old were you when the epilepsy started?, how long have you had epilepsy?, how long have you been taking anti epilepsy drugs?, how many anti-epilepsy drugs are you currently taking?, how often do you miss taking your anti epilepsy drugs?, and is there family history of epilepsy?.
All study tools were translated from English to Luganda and back translated by two independent linguists. We pre-tested the tools on the first 20 adolescents with epilepsy at Butabika Hospital to assess understanding of questions and responding appropriately. The outcome helped in modification of the tools prior to data collection. Some minor modifications to the tools included, study site inclusion, and rearranging the MSPSS Likert scale correctly in the translated tools.
Statistical analysis
Data was entered using EPI DATA version 3.1 and exported into STATA version 14 for analysis. Frequencies were used to describe the sample demographic characteristics. The prevalence of suicidal behavior was calculated as the total number of adolescents who met the criteria on the Suicidality Module of the MINI-KID as the numerator and the total number of respondents as the denominator. Simple logistic regression was done to determine bivariate associations between independent variables and outcome (suicidal behavior). Odds ratio was used as a measure of association and a statistical significance was determined using a p-value of 0.05 and a 95% confidence interval. At multivariate analysis, all variables with significant association at bivariate analysis were included in the multivariable logistic regression model. We used the backward elimination regression model method to drop variables with high and or insignificant p-values. Adjusted odds ratio was used as the measure of association and statistical significance was determined using a p ≤ 0.05.