Abstract
Background:
Treatment gap causes significant loss to individuals, families, societies and the nation. Treatment adherence enhancement is a major challenge in psychiatric disorders. Globally, the community mental health services are obligated to minimize the treatment and adherence gap. In recent years’ retrospective studies are gaining importance to measure the trend of mental health service utilization, cost effectiveness, resources allocation and similar aspects.
Aim:
To explore the treatment adherence pattern of persons with neuropsychiatric illness from a rural community mental health centre.
Method:
Five hundred and ninety-six medical records of persons with neuropsychiatric disorders who registered for outpatient treatment between 2015 and 2017 at Sakalawara Rural mental health centre of National Institute of Mental Health and Neuro Sciences, Bangalore, India, were reviewed to understand their adherence pattern
Results:
Out of 596 patients, 68 (11.4%) were referred to tertiary care mental health and District Mental Health Programme (DMHP) services. Out of the remaining 528 patients, 29.7% were regular to mental health services over a period of 12 months and above; majority of the patients (36.2%) dropped out of their treatment after their first contact and 34.1% discontinued their follow up visits over a period of first week to 12 months.
Conclusion:
Community based mental health centres too face challenges of and problems related to treatment non-adherence. Persons with neuropsychiatric disorders require continuity of care through regular home visits, out-reach services and innovative methods which will enhance treatment adherence.
Keywords
Introduction
Treatment non-adherence is a global issue especially in mental health care settings. Psychiatric disorders require long term follow up care services to prevent relapses and improve mental health condition of the person. Research studies estimate that 20% to 50% of patient population is at least partially non-compliant to treatment instructions and in persons with mental disorders these rates can be as high as 70% to 80% (Breen & Thornhill, 1998). A merged definition of adherence by Haynes (1979) and Rand (1993) says ‘the extent to which a person’s behaviour taking medication, following a diet and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider’(Rand, 1993).
Untreated and irregular treatment of psychiatric conditions might lead to patient’s poor quality of life, disability, low income, absence to work, burden on care givers, marital discard, homelessness, domestic violence and substance use etc. Demyttenaere et al. (2004) estimates that in low- and middle-income countries, between 75% to 85% of people with severe mental disorders are unable to access the treatment that they need compared with 35% to 50% of people in high-income countries.
The National Mental Health Survey of India (2016) has estimated that 13.67% is the lifetime prevalence and treatment gap was 84.5% for any mental morbidity. Various studies had estimated different rates of treatment non-adherence among various psychiatric disorders in India. Out of 2,735 persons who were psychiatrically evaluated over a year, only 1,604 (58.6%) came for follow up, four and more follow ups were found only in 17.3% (Chand et al., 2010); Only 5 out of 100 persons with common mental disorders were receiving any treatment over previous year (Sagar et al., 2017); 38.2% patients discontinued the treatment after their first visit and among the remaining patients 61.8% discontinued the treatment with in 6 months (Jain et al., 2017); and One fourth of elderly patients dropout after the first visit (Grover et al., 2018).
Studies from other countries noticed that 24% of persons with psychosis missed their scheduled appointments (Nosé et al., 2003). A meta-analysis review by De Haan et al. (2013) showed that majority proportion 28% to 75% of the persons in youth mental health centre dropped out. Studies reported that initial period of treatment was the riskiest phase for dropout (Chen, 1991; Pang et al., 1996; Singh, 2015). Many studies reported the dropout rate was mostly high among Substance use disorders (SUDs), Common mental disorders (CMDs) (Chand et al., 2010; Jain et al., 2017) than the Severe mental disorders (SMDs) (Rossi et al., 2002). Studies looking at gender wise adherence shows that women visited more than one follow- up compare to males and younger age patients (Chaudhari et al., 2017; Jain et al., 2017; Reneses et al., 2009).
Reasons for treatment non-adherence
Non-adherence is related with several associated factors. Younger age, female sex, marriage, stigmatization (Srinivasan & Thara, 2001); monthly total expenditure for treatment (Sarkar et al., 2017); frequent visits to formal and non-formal treatment by patients and care givers and dilemma on what kind of treatment to be continued (Charles et al., 2007); non-availability of welfare benefits, and distance of treatment centre (Charupanit, 2009); the patient’s treatment history and severity of baseline symptoms (Conus et al., 2010) are the factors that could affect continuity of care by the patient. Isaac et al. (2007) observed that persons with depression do not prefer but those with diabetes or hypertension seek treatment.
Community based study by Chandrashekar et al. (1981) attempted to manage many patients with neuropsychiatric disorders successfully with minimal cost and doorstep delivery of services through rural camps and home visit approaches. Olfson et al. (2006) found initiation of depot medications, daily observation of medications, and family psychoeducation, social support was less commonly used but was more effective than the psychological interventions. Ho et al. (2017) found factors such as having insight, perceived health benefits, regular activities, patient-provider relationship, reminders and social support networks etc improves the adherence.
The current study explores the treatment Non-adherence pattern among Persons with Neuropsychiatric Disorders in a Rural Community Mental Health Centre in India.
Methodology
Community mental health centres (CMHCs) were established to take up the mental health services to the door steps of the needy people rather than expecting them to come to tertiary care hospital. Services availability, accessibility, and affordability are important aspects of CMHCs. One such centre is Sakalwara Community Mental Health Center (SCMHC) which was established by National Institute of Mental Health and Neuro Sciences (NIMHANS) in 1970s to take up the Neuropsychiatric services at primary level targeting the rural population. The centre caters to the need of 96 villages that fall under the centre’s catchment area in the radius of 20 to 25 kms. On an average, in Out Patient Department which is open thrice a week, nearly 30 to 40 persons visit to receive services and there are no prior appointments required. Patients generally reach out to the centre through the community resources like relatives, patients from their village who are seeking treatment at centre, organizations, village leaders, religious institutions etc. The patients are attended within 30 minutes of registration. The centre consists with the multidisciplinary mental health team and services that include Biopsychosocial assessments and interventions are free of cost with nominal one time registration charges of Rs. 10 and there are no extra charges for any of the services provided in the centre. Since majority of the patients are from below poverty line the drugs are available free of cost with yearly nominal charges of Rs. 50 to make free drug card. Patients are referred to other facilities for the treatment of their co-morbid conditions. In this context, the current study is an attempt to understand the treatment adherence pattern from SCMHC of NIMHANS, Bangalore, India.
The objective of the study was to explore the adherence (follow up) pattern of the patients registered for treatment on outpatient basis at SCMHC. A retrospective research design was adopted. Consecutive sampling technique was followed and the source of data was secondary data obtained from the medical records of the patients registered from the month of April, 2015 to February, 2017 years at SCMHC.
Regular visit (Adherent) and drop out (Non-adherent)
In this study a regular visit was considered as a regular follow up of visits by the patient with or without missing maximum of two subsequent follow up visits to SCMHC over a period of 12 months. Drop out was considered as discontinuation of treatment and never turned up for follow up at SCMHC at any point within 12 months from their first contact with the centre. The term ‘treatment non-adherence’ is used synonymously as drop out, discontinuity, disengagement and irregular follow up visits.
A semi structured proforma was prepared to collect the details of sociodemographic and treatment adherence pattern of patients. By using this proforma, a retrospective file review was done with nearly 600 medical records of the patients and out of those four files were excluded which did not have neuropsychiatric diagnosis. For the purpose of this study, the classification of mental and substance use disorders of ICD-10 of World Health Organization (WHO, 1992) description was categorized as SUDs, SMDs, CMDs and IDDs as shown in the below Table 1. The data was analysed using SPSS software. Descriptive statistics that included frequency distribution and measures of central tendency and dispersion were done. Ethical clearance was obtained from Institutional ethics committee of NIMHANS (Behavioural Science Division).
Categorization of neuropsychiatric disorders.
Results
Table 2 shows that majority were 365 (61.2%) males, married 362 (60.7%) and the mean age was 31.36% (SD ± 15.7) years.
Sociodemographic details.
Table 3 shows majority of the patients 365 (61.2%) were male compared to female 231(38.8%). According to diagnosis wise classification, SUDs (88.7%), Seizures (58.5%), IDD with Seizures (60.0%) were more prevalent among male and CMDs (63.2%), Headache & Migraine disorders (65.6%) were more prevalent among female patients.
Gender and neuropsychiatry disorders.
With regard to the age group of the patients and the diagnosis, seizures (42.4% and 40.2%), and IDD disorders (28.8% and 21.6%) were more prevalent among age group of 1 to 10 years and 11 to 20 years respectively. Among all adult population groups (21–60 years), SUDs were predominantly prevalent, followed by CMDs and SMDs. Compared to other age groups SMDs were more prevalent among 61 and above years (34.8%).
Table 4 shows that nearly 11.4% were referred to tertiary care mental health services, among them 24 (4.0%) were referred to psychiatry and 39 (6.6%) were referred to neurological services, and remaining 528 (88.6%) patients were not referred.
Neuro psychiatry referral to tertiary care and district mental health services.
Table 5 shows that out of 528 patients, only 157 (29.7%) were regular to treatment over a period of more than a year, and persons with seizures disorder 35 (28.5%), CMDs 25 (26.6%) have better treatment adherence. Majority of the patients (36.2%) dropped out after their first contact and that proportion was high among SUDs (44.2%), SMDs (39.6%) and IDDs (52.6%). Among remaining patients, 34.5% discontinued their follow up visits over a period of first week to 12 months duration. Overall, it shows that the drop our rate was high during first contact and subsequently it decreased over a period of time.
Category of neuro psychiatric illness and frequency of follow up visits.
Table 6 illustrates that among regular visits, age groups of 21 to 30, 51 to 60 and 61 and above age respondents were more regular. Dropout rate after first contact was higher (47.4%) among age group of 61 and above years.
Age and frequency of follow ups of the patients.
Table 7 shows that frequency of follow ups was slightly better among females (30.9%) and the dropout rate was lower among females after first contact (33.4%) and first week contact (5.5%).
Gender and frequency of follow ups.
Discussion
Age, marital status and neuropsychiatric illness
In our study the mean age of the patients was 31.36 (SD 15.7). Similar findings were seen in study by Jain et al. (2017) that patients with age group of 18 to 45 years. In this study it was noticed that 15.8% were living alone, 1.3% were widowed/widower and 2.0% were separated or having marital discard. This adds as a risk factor in terms of poor social support and adherence to treatment. Bueno et al. (2001) noticed that living alone, not married, being divorced, or widowed, and a lower socioeconomic status were factors related to dropout. The national mental health survey (NMHS) (2016) noticed that current prevalence of mental morbidity (12.89%) was higher in widowed/divorced/separated individuals as against married and never married individuals.
Gender and neuropsychiatric illness
In this study majority of the patients were male and diagnosed with SUDs, Seizures, and IDD with Seizures disorders. CMDs, Headache & Migraine disorders were more prevalent among female patients. Neufeld et al. (2005) reported that men were 9.7 times more likely to use alcohol regularly than women. A study from a tertiary mental health centre by Chand et al. (2010) noticed that in overall more patients were male, and SUDs were prevalent among male patients, in contrast F40-48 category disorders were more among female patients. A prevalence study by Rao et al. (2014) and an oldest study from Sweden by Hagnell (1959) also noted that depression and anxiety disorders are more prevalent among females than males.
Neuropsychiatric illness and frequency of follow ups
According to the frequency of follow ups, approximately 1/3 of patients (36.2%) dropped out after their first contact and remaining 1/3 of patients (34.5%) discontinued their follow up visits over a period of first week to 12 months. The dropout rate was higher among all categories of illness. These findings are consistent with other studies from India by Chand et al. (2010), Sagar et al. (2017) and Grover et al. (2018).
In connection with this Nosé et al. (2003), and O’Brien et al. (2009) reported that the early period of treatment is the most possible time for dropout to occur and that is a vital period for adherence enhancement interventions to sustain long term regular follow ups. Singh (2015) noticed that patients, who dropped out after 3 to 4 visits, did so due to side effects, treatment response, economic factor and distance and timings of the outpatient clinic.
In the current study it is noticed that nearly 1/3 (29.7%) patients were regular to treatment over a period of above a year and the dropout rate decreased over a period of time among those who continued the treatment which is similar to the findings of Salta and Buick (1989) cohort study who observed that the discontinuity from treatment rate was decreased after the third visit when the patients continued attending and A prospective study by Singh (2015) also notice that dropout gradually declines after each subsequent visit.
In this study persons with SMDs (34.0%) were more regular compared to persons with CMDs (31.9%) and SUDs (19.0). Berghofer et al. (2000) and Rossi et al. (2002) too documented that patients with a diagnosis of schizophrenia and other psychoses were more likely to continue their treatment than patients with neurotic and personality disorders, and also Reneses et al. (2009) study reported that dropout rate was high among SUDs category.
The present study shows majority of patients (46.3) with seizures disorders having regular follow-ups. Others studies also reported that adherence in patients on antiepileptic drugs generally ranges from 20% to 80% (Buck et al., 1997), however the adherence pattern varies, in adult patients it ranges from 40% to 60% and in children from 25% to 75% (French, 1994).
A study by Naik et al. (1992) found that more patients were irregular to treatment in rural, communities due to factors such as manual labours, low income, debts, poor social support, distance, expenditures and lack of improvement with treatment, family members beliefs and attitudes, non-availability of free drugs and marriage. Isaac et al. (1981) had noticed that medication help is sought only after the patient turn into overtly symptomatic and in uncontrollable psychiatric conditions.
Gender and frequency of follow ups
Females (30.9%) were more regular, and the dropout rate at first visit (33.4%) and first week visit (5.5%) was low among female gender compared to male. In relation with this, the study from India (Jain et al., 2017) and a European CMHC study by Reneses et al. (2009) also noted that dropout rate was high among male patients.
Since nearly 2/3 patients were non- adherent to their treatment it might lead to various psychosocial issues. Studies noticed increased psychopathology and poorer premorbid social adjustment as well as non-functionality (MacBeth et al., 2013; Pellerin et al., 2010). Further it aggravates burden and costs (Campion et al., 2012). Untreated persons with mental illness are more prone to have interpersonal issues, disturbed family functioning and personal, societal and economic consequences (Kessler et al., 1995; McNicholas, 2012; Mezuk et al., 2008). People with CMDs are further pushed into poverty due to more health care expenses, reduced functionality, unemployment, poor social support and stigmatization (Patel & Kleinman, 2003). A prospective study by Killaspy et al. (2000) on 365 patients observed that patients who miss psychiatric follow-up are more severely ill and poor social functioning than those who attend their clinic regular.
Need for community based mental health services
Despite having all the essential mental health services in SCMHC that includes pharmacological and psychosocial interventions as well as the easy accessibility and affordability of services, it is found that large proportion of patients are non-adherent to treatment. Murthy et al. (2005) noted that community-based care such as outreach services for people with schizophrenia living in more remote areas of resource-constrained countries can bring substantial benefits to patients, families and communities comparable to other models of care. Priebe et al. (2005) Assertive Community Care study recommends that time and commitment of staff, social support and engagement without a focus on medication, and a partnership model of the therapeutic relationship were most relevant for engagement of care.
Isaac (2011) specified that mental health remains a relatively neglected area, given little importance in social and development planning and therefore, greater initiatives to be taken to integrate mental health with other general health and public services. Roebuck et al. (2011) says that non-adherence should be viewed as a common behaviour in mental illness that must be approached as any other complication or course-modifier.
Until now, a little information was analysed about pattern of adherence from a rural community mental health centre. Mental health services were expected to be extended to communities close to where a person with mental illness lives rather than expect the person with mental illness to come seeking treatment to CMH centre. The study results revealed that CMHCs also are not exceptional from the challenge of non-adherence issue
Optimal methods and tailor-made interventions need be followed to promote adherence as it is a dynamic issue dependent on factors such as socio demographic and economic background, cultural factors, nature of service provision and acceptability of the biopsychosocial nature of illness and interventions. Methods such as critical time interventions (Dixon et al., 2009; Susser et al., 1997), System responsiveness program (Klinkenberg & Calsyn, 1996), Case management Services (Baker & Intagliata, 1992), Assertive Community Treatment (Marx et al., 1973) services are used in developed countries to enhance the adherence in mental illness.
WHO (2001) has made ten recommendations to address the treatment gap and to improve the mental health capacities, resources and services across all societies and countries that would be beneficial for mentally ill persons and their care givers. The community-based approach as suggested by Chandrashekar et al. (1981), Olfson et al. (2006) and Ho et al. (2017) such as doorstep delivery of services home visit approaches, social support, patient-provider relationship, reminders and social support networks would be of great help in addressing the issue of treatment non adherence.
Conclusion
This retrospective study highlights proportion and pattern of continuity of care and service utilization. Since majority of the patients dropped out from CMHC treatment, it is necessary to adopt patient-oriented treatment engagement service, identifying exact point of dropout and reasons for dropout during the treatment process. Coordination of mental health services at primary health care, home visit approach, tracing and tracking, utilization of appropriate technology, etc could be looked into to address this issue of treatment non-adherence in mental health services at community mental health centres.
Footnotes
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is part of the Ph.D research work of first author guided by other authors funded by NIMHANS, Bangalore.
