|Year : 2022 | Volume
| Issue : 3 | Page : 224-230
A study of demographic, attitudinal, and clinical factors associated with adherence to treatment in schizophrenia
R Shubhangi Parkar1, Nilam Shivajirao Behere2, L Elvin3, Amey Yeshwant Angane1
1 Department of Psychiatry, Seth GS Medical College and KEM Hospital, Mumbai, Maharashtra, India
2 Research and Implementation Science Team, Public Health Foundation of India
3 Department of Psychiatry, Lokmanya Tilak Medical College and General Hospital, Mumbai, Maharashtra, India
|Date of Submission||16-Oct-2020|
|Date of Decision||25-Apr-2021|
|Date of Acceptance||14-Jul-2021|
|Date of Web Publication||28-Jul-2022|
Dr. Nilam Shivajirao Behere
Public Health Foundation of India, Institutional Area, Plot No. 47, Sector 44, Gurugram - 122 002, Haryana, India
Source of Support: None, Conflict of Interest: None
Background/Objectives: Schizophrenia is a severe mental disorder requiring prolonged treatment, and adherence to the treatment is an important factor. The reasons for nonadherence vary according to disease severity, treatment, local perceived problems, environment, and sociocultural factors. It is necessary to understand the pattern and factors related to adherence. This study aims at understanding adherence to treatment in the patients of schizophrenia and associated psycho-social and disease-related factors. It also analyzes the change in adherence over a period of the last 35 years. Methods: A review of past psychiatry records and nonadherence to the treatment of patients of schizophrenia that followed up in outpatient department was done over the last 35 years. For the evaluation of psychotic symptoms, positive and negative syndrome scale (PANSS) and for attitude toward medicine, drug attitude inventory-10 (DAI-10), and clinician rating scale (CRS) were used. Statistical analysis was done using SPSS-20 software. Results: Sixty-five percent of the patients were adherent to the treatment. Sociodemographic factors such as age, gender, family type, marital status, education as well as factors related to accessibility to medicines were not significantly associated with adherence. Adherence had significant positive correlation with CRS scores and negative correlation with PANSS positive and general score. Adherence of ≥80% for current year was found to be associated with the cross-sectional positive DAI score. Patient perceived causes such as social, financial, unwillingness, and lack of insight, side-effect profile had a significant association. Conclusions: Attitude and willingness toward treatment, insight into illness, and side-effect profile play a pivotal role in adherence.
Keywords: Adherence, psychosocial, schizophrenia
|How to cite this article:|
Parkar R S, Behere NS, Elvin L, Angane AY. A study of demographic, attitudinal, and clinical factors associated with adherence to treatment in schizophrenia. Indian J Soc Psychiatry 2022;38:224-30
|How to cite this URL:|
Parkar R S, Behere NS, Elvin L, Angane AY. A study of demographic, attitudinal, and clinical factors associated with adherence to treatment in schizophrenia. Indian J Soc Psychiatry [serial online] 2022 [cited 2022 Dec 5];38:224-30. Available from: https://www.indjsp.org/text.asp?2022/38/3/224/352511
| Introduction|| |
Schizophrenia is a chronic and severe mental disorder affecting 20 million people worldwide. In 2017, around 3.5 million people in India were found to be suffering from schizophrenia, amounting to a prevalence of 0·3%. According to India State-Level Disease Burden Initiative, schizophrenia contributed to about 9·8% of disability-adjusted life years (DALYs) due to all mental disorders. It was 4th leading cause of DALYs only after Depression, Anxiety disorders, and Idiopathic Developmental Intellectual disability.
Till date our understanding about the illness has undergone various biological and socio-cultural modifications. It is a long-standing illness with psychotic features comprising of positive and negative symptoms, affective features, and cognitive dysfunction. As the illness has a relapsing and remitting nature, prolonged treatment, sometimes even lifelong, is needed. Thus, adherence to the treatment remains a critical factor deciding the total course of illness and its outcome. Along with the advancement of biological options, the psychosocial approaches to its overall management are also acknowledged as a crucial aspect in the prognosis of schizophrenia. Psychoeducation to patients and family has gained a lot of significance in the recent times research.
Nonadherence to the treatment is recognized as an important deterring factor in long-term outcome the illness. Periods of inadequately treated illness, contributes to huge DALY loss and in turn affects the productivity, general wellbeing and quality of life of the patients. Medication nonadherence is associated with an increased risk for relapse of psychosis, persistent symptoms, and even suicide attempts. A study by Srinivasan and Thara reported that a history of noncompliance with oral medication was seen in about 58% of patients during the course of their illness. Various other studies have been conducted to explore factors related to adherence like socio-demographic factors, financial status, family support, the distance the patients have to travel to seek treatment and the expenses for the same. Although the results of these studies vary, most of them did not establish specific association. However, in India, Chandra et al. in 2014, found nearly 41.9% of study sample were noncompliant to medication and a significant association was found between noncompliance and unemployment and financial burden. The perceptions about illness and medications were found rather vital factors in many other studies. Adherence was found to be higher when patients had insight and also awareness of the need to take medications to decrease symptoms and avoid hospitalization.,,,,,,,,, Substance abuse adversely affected the treatment adherence according to Chandra et al.
The reasons for nonadherence may also vary according to the local perceived problems, the environment in general and socio-cultural factors in particular. The knowledge and awareness also differ according to the local beliefs, faith healing practices and myths about major mental illness. Thus, many of the biopsychosocial factors related to adherence have undergone various changes over the time and have also led us to modify our disease management plans.
Aims and objectives
This study aims at understanding adherence to treatment in the patients of schizophrenia and the psychosocial and disease-related factors associated with it. Further, this study also analyzes the change in adherence over a period of the last 35 years. The objectives of the study are:
- To study the association of demographic factors related to adherence to treatment of schizophrenia
- To study the correlation of psychotic symptoms (positive, negative, and general) with adherence
- To study association of attitude toward medicines and level of adherence
- To study the trend of adherence to treatment of schizophrenia in the past few years.
| Methods|| |
This retrospective observational study was conducted in the outpatient section of the Department of Psychiatry of a tertiary care hospital and teaching institute in Mumbai. The study was carried out over the period of 1 year and the retrospective analysis of the variables based on past records spanned over 35 years (from 1982 to 2017).
- Patients with age between 18 and 65 years at the time of assessment
- Patients who gave informed consent to participate in the study.
- Patients who were in an acute psychotic state
- Patients who had any organic or cognitive disturbance during the study period which hampered understanding of the questions.
Sample size and sampling technique
Considering the current data on treatment adherence in the local community, and a normal distribution of attributes under study, the sample population and sampling frame were determined. On an average, around three patients of schizophrenia, within inclusion criteria, follow-up on each outpatient day (OPD) with 3 such OPD days. However, because many of these same patients followed up every month, excluding repeat sample, we had around 108 obtainable responses over 1 year. Thus with 95% confidence interval, and 5% precision the sample size came to be 96. For ease of calculation we selected 100 patients for the study.
After obtaining approval of institutional ethical committee, the patients visiting psychiatry outpatient department and diagnosed to have schizophrenia, were selected. The study process is as shown in [Figure 1]. Their sociodemographic information and previous medical and psychiatric records were documented on the structured case record pro forma. The standard follow-up outpatient records consist of documented periods of compliance, inadequate intake of dosages, history of substance use, and incidences of forgetting to take medicines. The periods of noncompliance and the reasons for the same were corroborated with the relatives, wherever possible. A relative was one who was primary caregiver of the patient, had detailed information about the illness and treatment and stayed with the patient. The total noncompliance duration throughout the course of illness was mathematically summed up. The total duration of treatment and the prescribed dose by the psychiatrist was noted. The percentage of the duration of the treatment taken meticulously by the patient and the duration which was advised by the therapist was calculated. Accordingly, on the basis of literature review, the adherence pattern was operationally defined as (a) Adherent ≥80% (b) Partially adherent-79%–50% and (c) nonadherent-<50%.
The semi-structured questionnaire also included patient-perceived causes of nonadherence:
- Financial causes
- Social causes
- Causes of unwillingness to take medicines
- Causes of lack of insight
- Causes of perceived side effects
- Other causes.
As per reported by patients and corroborated by relatives the frequencies of forgetting medicine incidences were noted down. At least 1 incidence per month was identified as a positive response. A retrospective data of adherence of all the patients in each year, since their onset of illness, was noted. Fraction of all the patients in that specified year, who had adherence ≥80% were plotted. Thus, a period trend of adherence in our sample was drawn from 1982 till the study period 2017 (over 35 years).
For a cross-sectional assessment, the following tools were used:
- Positive and negative syndrome scale (PANSS) - this is a globally acknowledged clinician administered instrument that constitutes three scales measuring positive and negative syndromes and general severity of illness
- Clinician rating scale (CRS) - this is a clinician administered scale, used to quantify the clinician's assessment of the level of adherence shown by the patient. CRS uses an ordinal scale of 1–7 to quantify the clinician's assessment of the level of adherence shown by the patient
- Drug attitude inventory-10 (DAI-10) - This is a patient reported scale containing 10 questions with response in true or false format. A positive total score indicates a positive subjective response (adherent) and vice versa. Assuming that the attitude towards medicines is subject to change over period of time, DAI scores were plotted against compliance of the current year.
| Results|| |
In this study, 65% of the patients had adherence equal to or >80% (Adherent), 23% had adherence between 50% and 80% (partially adherence) and 12% with <50% adherence (nonadherent). The factors such as age, gender, marital status, family type, and education were not significantly associated with adherence [Table 1]. Factors like time taken to travel to hospital and expenses for travelling and medicines were not significantly associated with adherence [Table 2]. Significant association was found between incidences of forgetting medicines and nonadherence (Pearson Chi-square value = 15.194, P = 0.001). Patient perceived causes such as financial (P < 0.001), social (P value 0.002), unwillingness (P value 0.001), lack of insight (P value 0.001), side-effect causes (P value 0.001), and other causes (P < 0.001) had significant association with the nonadherence to treatment [Table 3]. A significant positive correlation was found between CRS scores and adherence rate (P < 0.001). Group of adherence >80% in the current year was found to be associated with cross-sectional positive DAI score (P < 0.001) and the rest adherence groups had equivocal or negative score [Table 4]. A significant negative correlation was found between PANSS positive (P value 0.004) and general (P value 0.021) score with adherence, but no correlation was found with negative score [Figure 2]a, [Figure 2]b, [Figure 2]c. The period trend of adherence from 1982 till date showed a definite rise in adherence of all the patients in recent few years [Figure 3].
|Table 1: Association of sociodemographic factors with adherence to treatment|
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|Table 2: Association of factors regarding accessibility to medicines and adherence to treatment|
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|Table 3: Association of patient-perceived causes of nonadherence and adherence to treatment|
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|Table 4: Association of drug attitude inventory score and adherence to treatment|
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|Figure 2: (a) Correlation of Positive and Negative Syndrome Scale (PANSS) positive scores with adherence (P value 0.004), (b) Correlation of Positive and Negative Syndrome Scale (PANSS) general scores with adherence (P value 0.021), (c) Correlation of Positive and Negative Syndrome Scale (PANSS) negative scores with adherence (P value 0.061)|
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| Discussion|| |
In this study, a retrospective analysis was carried out based on the previous follow-up records as well as interview of the patients and corroboration with relatives. Many other studies on compliance in schizophrenia are prospective studies with tracking of compliance in near future.,,,
The adherence (>80% adherence) to medications in the study was 65%, while other similar studies in India by Srinivasan and Thara and Chandra et al. reported 42% to 58% adherence respectively,. As shown in [Table 1], contrary to widespread belief, in our study, the sociodemographic factors such as age, gender, marital status, family type, education did not show significant association with adherence.
Factors like time taken to travel to hospital and expenses for traveling and medicines were not significantly associated with adherence [Table 2]. This is possibly because 94 out of 100 patients came from the same city and nearby suburban areas. Many of them commuted by local buses or trains and the fares of any distance in the city are not more than 20–30INR. The follow-up visits were generally monthly and that is the only expenditure as there is no consultation fees for the visits in this set up. Furthermore, 38 patients had free medicine from the hospital pharmacy and additional 34 did not face any financial issues to pay <250INR per month over medicines.
Incidences of forgetting medicines had a significant association with nonadherence (P = 0.001), in our study. Studies have shown that attitude toward medicines was a very important factor in adherence., In our study, patients who forgot to take medicines had significant association with nonadherence (P value 0.001). A study by Velligan et al. in 2006, found that pattern of nonadherence can differ from the patients who refuse to take medications due to lack of acceptance of the need for medication, to those patients who identify the need for medication and are also committed to treatment but are nonadherent due to forgetfulness or financial constraints.
Patient perceived causes such as financial, social, unwillingness, lack of insight, side-effect causes, other causes had significant association with the nonadherence to treatment [Table 3]. Strauss (1989) explained in his report that the mental health field often ignores or avoids many aspects of patients' reports about their subjective experiences- “All uniquely human phenomena are expressed in soft clinical data and ignoring them creates a bio-statistical clinical science that is deliberately dehumanized.” The inclusion of the patient perceived causes in our study, corroborated by relatives, validated some common findings related to their nonadherence anytime during the course of illness. These patient perceived causes included, (i) Financial issues to procure medicines, (ii) Social causes including discouragement by relatives, resorting to faith healing, stigma of the illness, (iii) causes of unwillingness to take medicines, in view of getting exhausted of consuming tablets and the long treatment course, (iv) Causes of lack of insight due to myths, misconceptions and lack of knowledge, (v) side effects causes including, sedation, tremors, lethargy and decreased interest in activities, (vi) Other causes experienced by patients included curiosity to stop medicines and see the outcome, experimenting with medicines, nonavailability or diseased caretaker, were significantly associated with nonadherence. Similar factors related to nonadherence such as financial burden, denial of illness, side-effects, and social factors were found to be associated by Chandra et al., Rosa et al. (2005) and Loffler et al. (2004). However other causes stated by patients like “trying to stop medicines to see what happens” and beliefs like “losing sexual power and intellectual ability” etc., noted in our patients need to be explored further.
A significant positive correlation was found between CRS scores and adherence rate. This indicated that the patient's own need and responsibility to undergo treatment influenced adherence.
The attitude towards the medicines possibly fluctuates over the period of time and customary situations as well as the existing disease condition. Thus, taking the positive and negative DAI score, the association was studied with the compliance over the current year 2015–2016. Adherence >80% in the current year was found to be associated with cross-sectional positive DAI score (P < 0.001) as shown in [Table 4]. This suggests that patients with positive attitude towards medicines maintained adherence, similar to that found in another study by Velligan et al.
A significant negative correlation was found between PANSS positive (P value 0.004) and general (P value 0.021) score with compliance, but no correlation was found with negative score [Figure 2]a, [Figure 2]b, [Figure 2]c. This suggests influence of active positive psychotic symptoms and general impairment of function on adherence, similar to findings by Chandra et al. Furthermore, here the need of the caretakers and patients to get back to asymptomatic stage is an important driving force for adherence.
The period trend of adherence from 1982 till date, which amounted to be around 35 years, showed a definite rise in adherence of all the patients in recent few years [Figure 3]. This, in all probability, is one of the few studies with a retrospective analysis of the patients that followed up for as long as last 35 years. Consequently, the same group of patients experienced various concurrent social, financial, environmental, pharmacological changes over the years. Thus, the trend of adherence pattern in last 35 years is a remarkable finding in this study. In mid-80s, the fraction of total number of patients who were adherent were about 50%. However, there is a gradual progressive rise of adherence till the current rate of 89% in 2016. Multiple factors probably contribute to this improving trend. In a publication of the Indian Psychiatric society in 2015, by Grover et al., most commonly identified needs by the caregivers of patients were free treatment (67.3%), medical reimbursement (59.8%), psycho-education (59.4%), financial help (59.2%), social support (54.3%), and travel concession (40.7%) Out of these about two-third of the needs were met, and one-third were unmet needs. Thus, in developing country like India, these factors could play an influential role. In our study too, free availability of psychotropic drugs, the involvement of social workers in the department to avail with “poor box charity fund” helped patients get financial aid. In 2016, 68 of our patients were maintained on medicines that are funded by Municipal Corporation of Greater Mumbai, charitable trusts and few others bought psychotropics available under the Drug Price Control Order 2013 which had lower prices. The weekly groups for psycho-education of relatives of schizophrenia are being run for the last 25 years possibly established therapeutic relationship with the caregivers and trained them in understanding the nature of the disease as well as the need to take medicines.
Strength and limitations
The study analyzes a retrospective data as old as that of 35 years. Thus, an overarching snapshot of all the factors and changes in them over time are captured in this study. A study of social, demographic, attitudinal, therapeutic, and contextual factors provides a comprehensive picture of adherence to treatment and is a strength of the study. As some parts of the interviews were based on recall by patients and relatives, a possibility of recall bias cannot be ruled out. The relation of adherence with specific generations of antipsychotics could have provided further insights.
| Summary and Conclusions|| |
This study of retrospective analysis stressed on the pivotal role of attitude towards medicines, willingness to undergo treatment, insight into the illness in adherence to the treatment of schizophrenia.
Adherence to treatment equal to or >80% was shown by 65% of patients. Twenty-three percent of patients had adherence between 50% and 80%, and 12% had <50% adherence. Adherence to treatment was not associated with demographic factors as well as factors like time taken to travel to hospital, expenses for traveling, and expenses on medicine However, incidences of forgetting medicines were significantly associated with adherence to treatment. Patient perceived causes as that of financial, social, unwillingness to take medicines, lack of insight, side-effects of medications were significantly associated with adherence to treatment. Adherence showed a significant positive correlation with CRS scores, and adherence of ≥80% in the current year was found to be associated with the cross-sectional positive DAI score. Adherence showed a significant negative correlation with PANSS positive and general score but no correlation with a negative score. The period trend of adherence from 1982 till date showed a definite rise in adherence to treatment in recent few years possibly due to many conducive factors which need further study.
To improve adherence in a chronic disabling illness like schizophrenia, the role of patient-friendly infrastructure is essential. Accessibility to mental health care services and availability of free or subsidized medications will go a long way in improving adherence. There is a need of better state and national policy developments like controlling drug prices of effective psychotropic drugs. Further interventional studies can be carried out to understand the effectiveness of different therapeutic, psychosocial and service-related approaches toward the treatment of schizophrenia.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]