Schizophrenia and the challenges of outpatient follow-up
Schizophrenia is one of the most disabling mental disorders, affecting cognition, emotion, perception, sense of self and various aspects of behaviour. 1 As of 2004, the age-standardised prevalence of schizophrenia in Nigeria was about 247 per 100 000. 2 Patients with schizophrenia in Nigeria experience high levels of self-stigma and discrimination;Reference Mosanya, Adelufosi, Adebowale, Ogunwale and Adebayo 3 , Reference Adeosun, Adegbohun, Jeje and Adewumi 4 their caregivers also experience significant burden and psychological distress.Reference Lasebikan and Ayinde 5 Appropriate treatment instituted early in the course of schizophrenia is key to reducing the associated morbidity that rapidly occurs during the first few years.Reference Birchwood, Todd and Jackson 6 , Reference McGlashan and Johannessen 7 Unfortunately, in Nigeria, as in other African countries, patients usually present after a long duration of untreated psychosis (DUP).Reference Al Fayez, Lappin, Murray and Boydell 8 , Reference Adeosun, Adegbohun, Adewumi and Jeje 9 Up to one in five patients with schizophrenia default on clinic appointments.Reference Adelufosi, Ogunwale, Adeponle and Abayomi 10
The first out-patient clinic visit is especially important, as it ordinarily provides the earliest opportunity to re-assess the patient, get feedback about symptom response to the therapy instituted at the first assessment, and assess medication adherence and experience of side-effects. Initial appointments are more frequently missed and less often rescheduled than appointments later in the course of treatment.Reference Sparr, Moffitt and Ward 11 The adverse outcomes of missing follow-up appointments are weightier for patients with severe and enduring mental illnesses such as schizophrenia, who are more likely to require subsequent hospital admission than those with less severe disorders.Reference Killaspy, Banerjee and King 12 , Reference Pang, Lum, Ungvari, Wong and Leung 13 Not attending clinic appointments early in the course of treatment for psychiatric disorders has been shown to increase the risk of further non-attendance and even disengagement from out-patient services.Reference Pang, Lum, Ungvari, Wong and Leung 13
Contributory factors for missed appointments
Reasons given by patients for missing appointments include forgetting appointment dates, transportation difficulties, appointment costs,Reference Lacy, Paulman, Reuter and Lovejoy 14 , Reference Downer, Meara and Da Costa 15 and mix-up in appointment dates and/or times.Reference Geraghty, Glynn, Amin and Kinsella 16 Also implicated are sociodemographic variables such as younger age, male gender,Reference Nosé, Barbui and Tansella 17 unemployment,Reference Kruse and Rohland 18 distance from the hospital and inadequate finances,Reference Adelufosi, Ogunwale, Adeponle and Abayomi 10 and clinical variables such as severe psychotic symptoms and poor insight.Reference Sims, Sanghara, Hayes, Wandiembe, Finch and Jakobsen 19 Knowledge of the factors and reasons associated with increased likelihood of default of patients with schizophrenia from their first out-patient clinic appointment would be valuable for planning effective strategies to prevent subsequent non-attendance in our environment. To the knowledge of the authors of this work, at this time, there are no published studies conducted in Nigeria to establish these factors and reasons among patients with schizophrenia as a specific diagnostic group, hence the need for this study.
Methods
Study design
This was a cross-sectional descriptive study.
Setting
The study was conducted at the Emergency and Assessment Unit of the Federal Neuro-Psychiatric Hospital, Benin City, Nigeria. Patients presenting to the hospital for the first time are assessed in this unit, and treatment is commenced. Patients not admitted into hospital are given an appointment in 2–4 weeks to continue follow-up at the out-patient clinics.
Study population and sampling method
In an earlier study,Reference Adelufosi, Ogunwale, Adeponle and Abayomi 10 the out-patient default rate for patients with schizophrenia was 20.4%. Using the formula for single population proportion, n = (z 2(p)(q))/d 2, (where n is minimum sample size, z = 1.96 (95% confidence interval), p is prevalence from previous study, q = (1–p), and d is acceptable standard error of the mean (0.05)) and allowing for 10% attrition, an intended sample size of 275 was obtained. The study population consisted of 275 consecutive adult patients (18–64 years) who were presenting to the hospital for the first time, with a clinical diagnosis of schizophrenia confirmed by the Mini International Neuropsychiatric Interview (MINI), and 270 caregivers who accompanied them. A caregiver in this study was taken to be the person who accompanied the patient for the initial consultation and who indicated they would be responsible for ensuring the patient attended the follow-up appointment.
Data collection
A semi-structured sociodemographic questionnaire
The first section was designed to capture sociodemographic variables of the patient and the caregiver (such as age, gender, religion, ethnic group, place of domicile, employment status and educational status) as well as the telephone number of the patient and/or caregiver. The second section of the questionnaire was designed to capture illness-related characteristics (such as ICD-10 diagnosis, duration of untreated illness, psychoactive substance use and forensic history).
MINI Plus 5.0.0
The MINI is a clinician-rated brief, structured interview for the major Axis I psychiatric disorders in DSM-IV and ICD-10. It has high validity and reliability in eliciting symptom criteria used in making ICD-10 diagnosesReference Sheehan, Lecrubier, Sheehan, Amorim, Janavs and Weiller 20 and has been used previously in the setting of this study.Reference Ogebe, Abdulmalik, Bello-Mojeed, Holder, Jones and Ogun 21 The psychosis module of the MINI was used to confirm the diagnosis of schizophrenia in each study participant prior to enrolment in the study.
Brief Psychiatric Rating Scale (BPRS) version 4.0
The BPRS is a clinician-rated instrument that shows adequate validityReference Lykke, Hesse, Austin and Oestrich 22 and is used to assess severity of psychopathology. Ratings are made on a seven-point scale ranging from ‘not present’ (1) to ‘extremely severe’ (7). A simple summation of the scores obtained provides a total score, which is an index of illness severity. The BPRS was used in this study to evaluate severity of psychopathology.
One of the authors (T.F.I.) recruited the participants while on a 6-month rotation at the Emergency and Assessment Unit of the study site. Patients who had an ICD-10 diagnosis of schizophrenia, confirmed by the consultant psychiatrist, and who met the criteria for schizophrenia on the MINI and were to be managed as out-patients were asked (or their caregiver was asked) for verbal informed consent to participate in the study. The sociodemographic questionnaire and the BPRS were then administered to the patient. Before leaving, the date for the next appointment (2–4 weeks from the date of the interview) was entered into the patient's appointment card by the medical records staff (date was confirmed by T.F.I.) and given to the patient (and/or caregiver). Participants were enrolled and data collected over 14 weeks (21 January 2015 to 30 April 2015).
The case files of study participants were checked exactly 2 weeks after their respective appointment dates; a patient was deemed to have missed the first appointment when they failed to attend the out-patient clinic on the scheduled appointment date and did not attend within 2 weeks after that scheduled date. Within the week after a patient had been ascertained to have defaulted, a telephone call was made by T.F.I. to ascertain reasons for the missed appointments; calls were made to patients who were able to provide phone numbers on which they could be contacted; in the case of others who were too ill to communicate in a coherent manner, or did not have functioning phone lines, calls were made to the caregiver. The call duration was about 3–5 min on average.
Data analysis
Data was analysed using the Statistical Package for Social Sciences (SPSS) version 20. Categorical data were summarised using frequencies; continuous data were summarised using median, mean and s.d.. Both types of data were displayed in tables. The association between categorical variables was determined using the χ² test, while associations between continuous variables were determined using the Mann–Whitney U test. The level of significance was set at P ≤ 0.05.
Ethical considerations
Ethical approval (Ref. PH/A.864/184) was obtained from the Ethical Committee of the Federal Neuro-Psychiatric Hospital, Benin City, prior to commencement of the study. All participants gave verbal informed consent. All data were treated with confidentiality and anonymity was maintained.
Results
The results have been reported in keeping with the STROBE reporting guidelines for observational studies (https://strobe-statement.org/index.php?id=strobe-home). Data were analysed for 275 patients with schizophrenia, 270 of whom were accompanied by a caregiver.
Sociodemographic characteristics of patients with schizophrenia
Age at presentation did not have a normal distribution (Kolmogorov–Smirnov statistic: D (275) = 0.11, P < 0.001); 117 patients (42.5%) were 18–29 years old. The median age for females was significantly higher than that for males.
Just over one-third of patients had completed at least 12 years of formal education. Most of them were unemployed.
About equal proportions of patients resided within a distance of 25 km from the hospital (i.e. within Benin City) and more than 25 km from the hospital (i.e. outside Benin City), respectively.
Clinical characteristics of patients with schizophrenia
One hundred and fifty patients (54.5%) reported that they first experienced psychotic symptoms between the ages of 11 and 29 years. The median age at onset of psychosis for females (32.42 years) was significantly higher than that for males (27 years) (P < 0.01).
In this study, the DUP was taken to be the time from experiencing the first psychotic symptom to the time of initiation of appropriate psychiatric treatment.Reference Norman and Malla 23 Possible BPRS scores range from 13 to 168. Only 15 patients (5.5%) had a history of forensic or legal problems (e.g. deportation from a foreign country owing to lack of valid resident's permit, arrested for wandering at night, destruction of property, assault) (Table 1).
Table 1 Sociodemographic and clinical characteristics of patients with schizophrenia
BPRS, Brief Psychiatric Rating Scale; DUP, duration of untreated psychosis; MWU, Mann–Whitney U statistic.
Prevalence of missed first out-patient clinic appointment among patients with schizophrenia
Of the 275 patients with schizophrenia who participated in this study, 87 did not attend their first out-patient clinic appointment either on the scheduled date or within 2 weeks post-appointment. The prevalence of missed first clinic appointment was therefore 31%.
Reasons patients with schizophrenia missed their first out-patient clinic appointment
Eight (9.2%) of the 87 patients who did not attend their first out-patient clinic appointment could not be reached on the mobile phone numbers provided. For the other 79 patients, the reasons given by them or their caregivers for missing the appointment are shown in Table 2.
Table 2 Reasons patients with schizophrenia missed their first out-patient clinic appointment
Correlates of missed first out-patient appointment
There was no significant association between sociodemographic characteristics and missing the appointment. The median BPRS score for the group of patients who missed their appointment was significantly higher than that for the group of patients who attended their appointment (Table 3).
Table 3 Sociodemographic and clinical correlates of missed first out-patient appointment
BPRS, Brief Psychiatric Rating Scale; DUP, duration of untreated psychosis; MWU, Mann–Whitney U statistic.
A binary logistic regression model using a forced entry method was undertaken, with the dependent variable being ‘missed first appointment’, which was coded as ‘1 = yes’ and ‘2 = no’. Categorical and continuous variables were entered in a non-stepwise fashion into the regression model.
The Hosmer and Lemeshow test (χ2 = 13.198, d.f. = 8, P = 0.105) showed that the model generated was a good fit, as it had a P value >0.05 (Cox and Snell R 2 = 0.065; −2 log-likelihood = 324.766). A higher BPRS score was found to predict missing the first clinic appointment in the regression model (P < 0.001) (Table 4).
Table 4 Logistic regression of sociodemographic and clinical variables of patients on missed first clinic appointment
BPRS, Brief Psychiatric Rating Scale; DUP, duration of untreated psychosis; OR, odds ratio.
Discussion
The prevalence of missed first out-patient clinic appointments obtained in this study is similar to that found by a previous study in the same setting,Reference Akhigbe, Morakinyo, Lawani, James and Omoaregba 24 although the study population in the latter consisted of patients with different psychiatric disorders. It is also consistent with the range of values obtained in other studies on out-patient default (17–46%).Reference Killaspy, Banerjee and King 12 , Reference Kruse and Rohland 18 Although Adelufosi and colleaguesReference Adelufosi, Ogunwale, Adeponle and Abayomi 10 used the same operational definition for ‘default’ and had similar study participants (patients with schizophrenia), they reported a lower prevalence (20.4%). This could be because participants in their study had been attending the out-patient clinic for at least 6 months. The pattern of attendance of clinic appointments for new referrals has been shown to be different from that of patients on long-term follow-up.Reference Killaspy, Banerjee and King 12 The finding from this study is significant for several reasons: the consequences of missed appointments include poorer clinical and social outcomes,Reference Killaspy, Banerjee and King 12 , Reference Mitchell and Selmes 25 as well as predicting future clinic non-attendance.Reference Killaspy, Banerjee and King 12 Missed appointments are also associated with wasted physician and clerical time, and economic loss to the country from reduced productivity. The consequences could also include over-utilisation of general medical resources, as these patients make more visits to general practitioners and other medical specialties for ‘difficult to explain somatic symptoms’.Reference Olfson 26 , Reference Leon, Portera and Weissman 27 In resource-poor settings such as Nigeria, already meagre health resources are wasted when patients do not turn up for their appointments. When defaulters eventually present at other times, they increase the workload, resulting in increased frustration and reduced empathy towards such patients (which is detrimental to the much needed therapeutic alliance between patients and health professionals).
Factors which may have contributed to the prevalence of missed appointment obtained in this study include effects of stigma, and conceptions about symptoms and treatment. Schizophrenia is a disorder associated with behavioural manifestations which call the attention of others to the patient and their family. Studies from Africa and other parts of the world indicate that in spite of increasing education and enlightenment, many people still ostracise and discriminate against people with schizophrenia and their families.Reference Bifftu and Dachew 28 , Reference Sartorius, Thornicroft and Brohan 29 When patients and their caregivers eventually take the decision to present to an orthodox mental health facility, their initial motivation could be the distressing behavioural manifestations of the illness (e.g. responding to hallucinations, poor personal hygiene, aggressive behaviour). If these symptoms subside after initial commencement of psychotropic medications, the patient and/or their caregiver may not see the need to return for the next appointment. As it takes a few weeks for psychotropic medications to attain plasma concentrations required for notable effects to be seen, patients and/or caregivers may conclude that the medications are ‘ineffective’ and decide to try some other form of care instead of returning for their clinic appointment.Reference Edlund, Wang, Berglund, Katz, Lin and Kessler 30 Future studies could assess the satisfaction with care received, whether the treatment plan was understood, and whether or not the treatment given was thought to have been useful or effective.
Patients with higher BPRS scores in this study were more likely to miss their appointments than patients with lower scores. This is consistent with the findings of Adelufosi and colleagues,Reference Adelufosi, Ogunwale, Adeponle and Abayomi 10 who also rated severity of psychosis using the BPRS. Greater severity of psychiatric symptoms has been associated with missing clinic appointments even when other rating scales were used.Reference Killaspy, Banerjee and King 12 , Reference Morlino, Buonocore, Calento, Ravel and Schiavone 31 Positive and negative symptoms of schizophrenia could contribute to patients not attending their appointments. Positive symptoms such as paranoid delusions, delusions of control and hallucinations make patients suspicious of the intentions of their caregivers and the mental health professionals, and thus less likely to adhere to treatment modalities prescribed. Negative symptoms such as apathy and avolition could also worsen a patient's social isolation and make them less likely to adhere to scheduled appointments. Greater severity of symptoms may also worsen insight, which is a significant predictor of functioning and adherence to treatment.Reference Saravanan, Jacob, Johnson, Prince, Bhugra and David 32
As in other studies, forgetting the appointment date was one of the most common reasons for missed appointments. This could be a result of impairment in cognitive function, which sometimes occurs in schizophrenia. It could also result from the caregiver being occupied with other responsibilities and activities which they judged to be equally or more important.
‘Denial’ could be an unconscious defence which enables patients and caregivers to cope with the distress associated with facing up to the reality of having a severe psychiatric disorder; forgetting would thus be a convenient ‘excuse’ for missing follow-up appointments. In order to reduce the incidence of missed appointments due to forgetting, healthcare providers have used various ways of reminding their clients of their appointment dates, e.g. telephone calls and short message service (SMS) text messages a few days before the appointment.Reference da Costa, Salomão, Martha, Pisa and Sigulem 33
In this study, some appointments were not kept because the patient was said to be receiving treatment from another ‘doctor’ (six patients) or had been taken to a church for prayers (six patients). It is not uncommon in our environment for patients and/or their caregivers to seek other sources of care even after treatment has commenced at a mental health facility. Reasons for this include cultural or social acceptability and proximity to the patient's location; about half of the patients in this study resided more than 25 km away from the hospital. In Nigeria, mental health services have still not been properly integrated into primary healthcare systems, in spite of the recommendations of the World Health Organization and advocacy groups in the country. Patients with mental health problems still have to travel long distances, sometimes at great financial cost, via poor road networks linking rural areas to the urban areas where specialist psychiatric hospitals are centralised. 34 , 35
Some caregivers did not see the need to bring the patient to the scheduled clinic appointment because they had the impression that the patient's mental state had improved enough. This suggests that during the initial assessment they may not have received (or understood) information about the course of the illness, duration of treatment and the fact that initial signs of improvement (e.g. reduced aggression, responding less to hallucinations, improved sleep) do not mean that the patient is ‘cured’.
It is possible that some respondents gave reasons which they perceived would be ‘more excusable’ than the ‘real’ reasons for not returning for follow-up. They could have had unvoiced reservations or misconceptions about the illness, course, treatment, prognosis, effects on the life of the patient, side-effects of medication, and fears around stigma associated with having a mental disorder or being a relative of someone with a mental disorder. This question would be of interest if future studies are done to investigate reasons for missed appointments among patients in other states in Nigeria.
The strengths of this study are that participants had the same clinical disorder (schizophrenia), and that standardised instruments were used to confirm the patients' diagnosis (MINI) and assess the severity of psychopathology (BPRS).
Limitations
The generalisability of the results of this study is limited by its having been conducted in a tertiary hospital setting, where patients with more severe symptoms are more likely to present, compared with primary care or community-based settings.
Some of the study participants could not be reached on the phone numbers they had provided and their reasons for missing appointments could therefore not be ascertained. The reasons for missing the appointment were reported in some cases by caregivers who were the contact persons for the patients at the point of enrolment into the study (e.g. where patients were too ill to provide a phone number, or did not have a functioning telephone line); it was thus difficult to verify the reasons from the patients themselves.
Although we collected information on the reasons that appointments were not attended, it would have been useful to find out from patients who kept their appointments why they decided to and made the effort to attend within the specified period. This data could help to better understand the motivating factors for patients and caregivers to keep their appointments, and aid service providers to optimise clinic appointment attendance.
Recommendations
Interventions such as telephone calls or text message reminders of appointment dates could be explored as a means to reduce the rate of missed appointments among patients with schizophrenia at the Federal Neuro-Psychiatric Hospital, Benin City. The government and other stakeholders also need to facilitate the full integration of mental health into primary healthcare in Nigeria, to reduce the burden of travelling long distances to access care from tertiary hospitals in urban areas. It is recommended that at first contact mental health professionals give their patients (and caregivers) adequate information about the diagnosis, prognosis and the treatment plan, and clarify any misconceptions they have. This would go a long way to allay their fears and boost their confidence in adhering to continuing attendance at orthodox mental health facilities.
Future studies on attendance of patients to clinic appointments could also explore patients' and caregivers' reasons and motivations for attending their clinic appointments punctually.
Acknowledgements
We thank the managers at the study site during the completion of this study for their support.
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