Living conditions of patients with schizophrenia spectrum disorders in the region of ‘Tâmega e Sousa’ (Portugal)

Abstract

Background:

Schizophrenia spectrum disorders (SSD) are the most impairing psychiatric disorders and are a major cause of social exclusion. Despite that, there are only two studies published assessing the socioeconomic characteristics of SSD patients living in Portugal.

Aims:

The purpose of this study is to assess the degree of social and family support for SSD patients living in the region of ‘Tâmega e Sousa’, in northern Portugal.

Method:

We conducted a cross-sectional observational study using patients under home-based care provided by the Department of Psychiatry and Mental Health of Centro Hospitalar do Tâmega e Sousa. We retrieved sociodemographic data from clinical records. The study was approved by the Hospital Ethics Committee.

Results:

Our sample consists on 67 patients with SSD, mostly men (74.6%). Although the majority was single (69.2%) and childless (85.7%), only a minority lived alone (21.2%). In relation to their professional status, only 5.0% were employed and 78.3% got a disability pension. Among the patients that lived accompanied, 68% lived with their parents or grandparents, and a quarter lived with family members affected by psychiatric disorders.

Conclusions:

These findings highlight the dependence of SSD patients on their family’s support. Lack of labour market integration, economic dependence and difficulty establishing stable relationships further aggravate their social exclusion. Although our results are consistent with a previous observational study held in Portugal, our patients display a worse functional status. Even considering the possible patient selection bias, there is evidence supporting the need for more investment in psychosocial rehabilitation that should take into account the sociodemographic idiosyncrasies of this Portuguese region.

Keywords

Schizophrenia spectrum and other psychotic disorders Portugal social support social conditions

Introduction

Schizophrenia spectrum disorders (SSD) are chronic psychotic illnesses characterised by a loss of contact with reality. This concept of spectrum aggregates a heterogeneous group of disorders – such as schizophrenia, schizoaffective disorder and schizophreniform disorder – that share major symptoms: delusions, hallucinations, disorganized thinking and speech, restricted affect, diminished social engagement, and loss of functionality, among others (American Psychiatric Association [APA], 2013). Symptoms usually appear at the transition from adolescence to adulthood and cause a major disruption on the individual’s social functioning, which increases the risk of unemployment and poverty. The joint prevalence of these disorders is of around 1%–2% (‘Kaplan & Sadock’s comprehensive textbook of psychiatry’, 2017), and their treatment is based on antipsychotic drugs and psychosocial rehabilitation (Morin & Franck, 2017).

The need for psychosocial rehabilitation in this population is of particular importance to promote social integration and functional recovery. Despite the widespread notion of social exclusion in this population, there are few observational studies assessing the characteristics of SSD patients, and only two studies have been published in Portugal. The first study by Marques-Teixeira et al. (2005) described the characteristics of the cohort of 160 Portuguese patients included in the SOHO study. The Portuguese results showed a high prevalence of housing dependency (64.4% lived dependently on the family) and unemployment (35.0%) or retirement (33.7%). In this sample only 19% of patients were employed, the same percentage that were partnered or married. The overall functional status of Portuguese patients was worse than the European counterparts. A more recent study by Pinho et al. (2017) assessed a sample of 282 schizophrenia patients, the majority from central or southern Portugal. This study determined a lower employment rate than the previous one (9.2%).

Characterising a population is essential for a health care unit to be able to plan and optimize the services provided, and to ensure their equity (Alegría et al., 2018). In relation to mental health care, the current clinical practice regards Community Psychiatry as the gold standard pattern of care. This integration of mental health care in the community is relatively recent in Portugal, where the deinstitutionalization process for people with mental disorders only started in 2009, after the approval of the current Mental Health Law (Portuguese Observatory of Health Systems, 2015). However, the pace at which this changing process is taking place is not uniform across the country and depends on regional health investment choices and on sociodemographic regional variables.

It is important, then, as mentioned above, to characterise the population that health services serve. In particular the region of ‘Tâmega e Sousa’, located in northern Portugal, stands out as one of most disadvantaged regions of the country, a notion that the last Regional Development Composite Index published by the Statistics Portugal in 2019 (relating to data from 2017) proved. In this report the ‘Tâmega e Sousa’ region, alongside Douro and Baixo Alentejo, scored the lowest cohesion indexes. As is explained in that report ‘the cohesion index aims to reflect the population potential accessibility to basic collective equipment and services (health, education, culture), as well as the profiles that lead to a greater social inclusion and the effectiveness of public policies given by an increase in the quality of life and by a decrease in territorial disparities’ (Statistics Portugal, 2017).

The region of ‘Tâmega e Sousa’ is divided in two subregions. The Sousa subregion is heavily industrialised and is marked by its proximity to the Oporto Metropolitan Area, with a scattered and disordered population, where industrial facilities coexist with housing and the remaining agricultural activity (Research Centre in Management and Applied Economics [CEGEA], 2014). On the contrary, the Tâmega subregion is less industrialised, and its economic activity is based on agriculture, forest and services, whereas the population is more concentrated, and the influence of the Metropolitan Area is much more diffuse (CEGEA, 2014). To the best of our knowledge there is no study assessing the sociodemographic characteristics of SSD patients in this region.

Our study aims to describe the social and financial characteristics of SSD patients living in the region of ‘Tâmega e Sousa’. We intend to assess the degree of social and family support available for these patients, contributing to the discussion and improvement of mental health care in Portugal.

Methods

The Department of Psychiatry and Mental Health of Centro Hospitalar do Tâmega e Sousa provides specialized mental health care to a population of about 520,000 people. Our Department is divided in two hospitals (Penafiel and Amarante) and offers home-based care teams that aims to promote the therapeutic compliance of patients with major psychiatric disorders, particularly through home visits, monitoring and administering long acting antipsychotics to all of these patients. At the end of 2018, the Penafiel Hospital integrated a total of 286 patients in this service.

We undertook a cross-sectional observational study focused on the social inclusion of patients with schizophrenia spectrum disorders: schizophrenia, schizoaffective disorder, schizophreniform disorder. These disorders were selected together by symptomatic overlap, namely the impact on functionality. We excluded patients with delusional disorders due to the differences in terms of psychopathology and global functionality. We collected sociodemographic data from clinical records, in particular general demographic characteristics, professional situation, household and living conditions, personal and family psychiatric history, medical comorbidities, psychiatric diagnosis and the antipsychotic administered. The main investigator selected the patients using convenience sampling, from the pool of patients he assessed while working at the Penafiel home-based care team and whose clinical records he had to access for medical purposes. The data collection occurred from October to December of 2018, and their reliability was informally confirmed during the home visits.

The investigators ensured the pseudonymization of patients and their data through coding, with the encryption key kept separately from the database. The statistical analysis was carried out using the version 26 of IBM^® SPSS^® Statistics software to calculate prevalence and frequencies. We considered that missing values occurred completely at random, and that they were related to doctor’s forgetfulness in filling out free-text medical records. The hospital ethics committee approved this investigation.

Results

The number of patients examined for eligibility was 118 (41.3% of the total number of patients) and resided mainly in three municipalities: Penafiel (31.4%), Paredes (31.4%) and Marco de Canaveses (20.3%). The sample consisted mostly of men (70.3%), and included individuals aged between 22 and 86 years old. The mean age was 48.4 years and the mode was 51 years, with a predominance of males in all age groups. The number of patients with a SSD diagnosis was 67, with intellectual disability 18, personality disorder 2, drug-induced psychotic disorder 4, persistent delusional disorder 12, organic delusional disorder 7, and with bipolar affective disorder 8. We analysed the clinical records from all SSD patients, whose main results are summarized in Table 1.

Table 1.

Sociodemographic characteristics of schizophrenia spectrum disorders patients.

		Total number	Percent	Valid percent
Sex	Male	50	74.6%	74.6%
	Female	17	25.4%	25.4%
Age group	21–30 years	7	10.4%	10.4%
	31–40 years	13	19.4%	19.4%
	41–50 years	23	34.3%	34.3%
	51–60 years	16	23.9%	23.9%
	61–70 years	5	7.5%	7.5%
	71–80 years	2	3.0%	3.0%
	81–90 years	1	1.5%	1.5%
Schooling	Illiterate	5	7.5%	14,7%
	1st cycle	10	14.9%	29,4%
	2nd cycle	7	10.4%	20,6%
	3rd cycle	2	3.0%	5.9%
	Secondary education	8	11,9%	23.5%
	Licentiate degree	2	3.0%	5.9%
	Missing	33	49,3%	0.0%
Professional status	Employed	3	4.5%	5.0%
	Unemployed	6	9.0%	10.0%
	Disability pension	47	70.1%	78.3%
	Old age pension	3	4.5%	5.0%
	Domestic	1	1.5%	1.7%
	Missing	7	10.4%	0.0%
Marital status	Single	45	67.2%	69.2%
	Married	9	13.4%	13.8%
	Separated/divorced	10	14.9%	15.4%
	Widower	1	1.5%	1.5%
	Missing	2	3.0%	0.0%
Spouse’s professional situation	Employed	3	4.5%	60.0%
	Unemployed	0	0.0%	0.0%
	Old age pension	2	3.0%	40.0%
	Not applicable	58	86.6%	0.0%
	Missing	4	6.0%	0.0%
Minor children	0	54	80.6%	85.7%
	1	8	11.9%	12.7%
	2	1	1.5%	1.6%
	Missing	4	6.0%	0.0%
Number of cohabitants	0	14	20.9%	21.2%
	1	15	22.4%	22.7%
	2	21	31.3%	31.8%
	⩾3	16	23.9%	24.2%
	Not applicable	1	1.5%	0.0%
Cohabitants affinity	Ascendants	18	26.9%	34.0%
	Siblings	5	7.5%	9.4%
	Descendants	3	4.5%	5.7%
	Spouses	1	1.5%	1.9%
	Ascendants + siblings	16	23.9%	30.2%
	Spouses + descendants	8	11.9%	15.1%
	Ascendants + descendants + siblings	2	3.0%	3.8%
	Not applicable	14	20.9%	0.0%
Housing conditions	Yes	61	91.0%	92.4%
	No	5	7.5%	7.6%
	Missing	1	1.5%	0.0%
Housing status	Relatives house	37	55.2%	57.8%
	Rented	4	6.0%	6.3%
	Owned	17	25.4%	26.6%
	State institution	1	1.5%	1.6%
	Social housing	4	6.0%	6.3%
	Squatting	1	1.5%	1.6%
	Missing	3	4.5%	0.0%
Psychiatric disorders in cohabitants	Yes	14	20.9%	26.4%
	No	39	58.2%	73.6%
	Not applicable	14	20.9%	0.0%
Affected cohabitants	Ascendants	3	4.5%	21.4%
	Siblings	8	11.9%	57.1%
	Descendants	2	3.0%	14.3%
	Spouses	0	0.0%	0.0%
	Ascendants + siblings	1	1.5%	7.1%
	Not applicable	53	79.1%	0.0%
Hospitalizations	0	14	20.9%	20.9%
	1	20	29.9%	29.9%
	2	13	19.4%	19.4%
	3	8	11.9%	11.9%
	4	8	11.9%	11.9%
	⩾5	4	6.0%	6.0%
Years of follow-up in home visits	<1	3	4.5%	4.5%
	1–3	20	29.8%	30.3%
	4–6	15	22.4%	22.8%
	7–9	11	16.5%	16.7%
	⩾10	17	25.4%	25.6%
	Missing	1	1.5%	0.0%
Treatment regime	Voluntary	53	79.1%	79.1%
	Compulsory	14	20.9%	20.9%
Chronic medical diseases	Yes	16	23.9%	25.8%
	No	46	68.7%	74.2%
	Missing	5	7.5%	0.0%
Oral medication	Yes	55	82.1%	88.7%
	No	7	10.4%	11.3%
	Missing	5	7.5%	0.0%
Type of medication	Psychiatric	40	59.7%	72.7%
	Non-psychiatric	0	0.0%	0.0%
	Both	15	22.4%	27.3%
	Not applicable	12	17.9%	0.0%
Smoker	Yes	29	43.3%	43.9%
	No	37	55.2%	56.1%
	Missing	1	1.5%	0.0%
Long-acting antipsychotic	Paliperidone	7	10.4%	10.4%
	Haloperidol	51	76.1%	76.1%
	Risperidone	8	11.9%	11.9%
	Aripiprazol	1	1.5%	1.5%

The sample of 67 patients included in the study consisted of 50 men (74.6%) and 17 women (25.4%), with a mean age of 47 years, ranging between 22 and 84 years. 79.1% were under a voluntary treatment regime. The schooling data have a high rate of missing values (49.3%) but point to low levels of schooling (64.7% with less than 6 years of formal education, and 14.7% illiterate). The majority of SSD patients earned a disability pension (78.3%) and only 5.0% were employed.

In relation to the marital status most were single (69.2%), and the majority did not have minor children in their care (85.7%). Despite that, only about a fifth lived alone. The small proportion of patients that were married (13.8%) had spouses earning their own income, either from work or old age pension. Those who live accompanied resided mostly with their ascendants (68%) and half of these cases together with other siblings. In line with these data, only a quarter of the sample owned their home. In general, the dwellings had minimal living conditions. The five houses that were not fit for human habitation were either in ruins or lacked electricity or basic hygienic conditions.

Among the patients that live accompanied, a quarter share accommodation with family members who also have psychiatric disorders. The family members most commonly affected are siblings (57.1%), followed by ascendants (21.4%). Three quarters of the patients had no diagnosed medical conditions, with the most commonly diagnosed being arterial hypertension, dyslipidaemia and diabetes mellitus. In addition, 43.9% of patients were regular tobacco smokers.

The percentage of patients that were never hospitalized was only 20.9%. Regarding the medication prescribed, the long-acting antipsychotic most used was haloperidol (76.1%), and in 88.7% of cases the long-acting antipsychotics were used in co-therapy with oral drugs.

Discussion

This study allows us to extract important information about the social support of SSD patients in the region of ‘Tâmega e Sousa’. This region is home to 5% of the Portuguese population. The data presented highlights the fact that SSD patients are markedly dependent on the support of their families. This finding is in accordance with the previously reported observational studies by Marques-Teixeira et al. (2005) and Pinho et al. (2017). Among the parameters that stand out are the lack of labour market integration and consequent absence of financial autonomy, and the difficulty in establishing intimate relationships and household. The scarcity of social support in this population is particularly relevant given its urban origin.

The results regarding the professional situation are particularly concerning. More than 70% of patients are retired and earning a disability pension, the majority since a young age, early after the onset of the disease. The employment rate of our patients (5.0%) is lower than the estimates for SSD Portuguese patients (19% by Marques-Teixeira et al. and 9.2% by Pinho et al.) and the estimates from most western countries. For example, the overall employment rates presented for other Mediterranean countries vary between 11% and 40%: 11.5% in France (Marwaha et al., 2007), 13.1% in Italy, 13.8% in Spain and 40.1% in Greece (Papageorgiou et al., 2011). These values are similar to those of Europe’s richest countries: 10.24% in Norway (Evensen et al., 2016), 12.9% in the United Kingdom (Marwaha et al., 2007) and 26% in Germany (Papageorgiou et al., 2011). Despite the functional and cognitive deterioration characteristic of these pathologies, we believe that this expressive result is in part a consequence of the lack of investment in psychosocial rehabilitation that could allow the enhancement of each patient’s skills. In comparison, in the general population residing in the Sousa subregion 21.9% depend on state pensions as their main source of income (CEGEA, 2014), and 3.2% earn social insertion income or social support (CEGEA, 2014).

The autonomization process is thus hampered, to which is added a family aggregation of mental illness in a quarter of cases. Given the short contributory careers, due to the early onset of these diseases, the amounts of the disability pensions attributed are low (in many cases less than €300/monthly). This financial shortage further accentuates the dependence on the ancestors (parents and grandparents) to ensure large expenses with oral medications and tobacco. This lack of autonomy is also reflected in the high percentage of patients who have no marital relationship (69.2%) that could provide an additional source of emotional and instrumental support, a result in line with the previous Portuguese studies. This necessity of instrumental support is further accentuated by the low levels of education that our patients have. As previously stated, 64.7% only completed 6 years of formal education, a result inferior to the 48.9% estimated for Portuguese schizophrenia patients (Pinho et al., 2017). In fact, the level of education is far inferior to other Mediterranean countries. For instance, in our sample only 23.5% of patients completed secondary school, a value well below those achieved in Greece (58.6%), Italy (57.6%) and Spain (42.8%) (Papageorgiou et al., 2011).

From the patients examined for eligibility the second, third and fourth largest diagnostic groups after SSD were respectively Intellectual Disability (ID), Persistent Delusional Disorder (PDD) and Bipolar Affective Disorder (BAD). Some striking differences stand out when comparing our sample with those groups, particularly regarding PDD and BAD patients. First of all, while the majority of ID patients (94.4%) were also single, 91.7% of PDD patients and 62.5% of BAD patients were married or had already been in a stable relationship, and consequently were more likely to have children (25% in PPD and BAD; 14.3% in SSD; 0% in ID). Secondly, PDD patients had an overall higher rate of employment (27.3% in PDD; 14.3% in BAD; 5.0% in SSD; 0% in ID). Lastly, SSD attract attention for having lower levels of education, only being surpassed by ID patients (half of which were illiterate). These results account for worse functional status and living conditions of SSD patients in our region when compared with other patients with major psychiatric disorders in the same area and reinforce the need for state investment in psychosocial rehabilitation.

Noteworthy is also the predominant use of typical antipsychotic in a patient group with relatively few years of follow-up. Although the years of follow-up presented refer to the start of monitoring by the home-based care team, this date coincides in most cases with the introduction of long-acting antipsychotics. This prescription profile is not due to economic restrictions, as long-lasting antipsychotics are provided by the hospital, and can only be explained by the choices made by the prescribing psychiatrists. This is in clear contrast with the practices established in most European countries. Among Mediterranean countries Spain is the only where long-acting antipsychotics are also widely used and over 95% of depot and intramuscular formulations prescribed in those countries are second generation antipsychotics (Papageorgiou et al., 2011).

Comparing our results with the study published by Marques-Teixeira et al. (2005) and Pinho et al. (2017), our patients have a worse functional status, characterised by greater dependence on family members, lower rates of own residence, marital relations and inclusion in the labour market. Two factors can contribute to this discrepancy. On the one hand, as mentioned above, the ‘Tâmega e Sousa’ region has one of the lowest levels of social cohesion in the country, which will proportionally have a greater impact on the most fragile populations. For example, the unemployment rate of the general population in this region calculated by the 2011 census is higher for extreme age groups, exceeding the regional and national average: 30.1% for 15–19 years, 18.8% for 20–24 years and 18.1% for 60–64 years, comparing to 11.1% in the 30–34 age group (CEGEA, 2014).

On the other hand, the sample selection may be biased. The exclusive selection of patients monitored by the home-based care team may have favored the selection of patients with more severe forms of disease and with worse therapeutic compliance, factors that can lead to greater functional and cognitive deterioration. This possibility weakens the external validity of the results. However, this does not invalidate the evidence of the need for more investment in psychosocial rehabilitation. Additionally, the use of electronic health records for data extraction is susceptible to the existence of underreporting bias, which is reflected in the high rate of missing values in some parameters. Nevertheless, the main parameters related to living conditions have a low rate of missing values, and their validity was confirmed in person during home visits.

Conclusion

SSD are an important cause of loss of work functionality and social exclusion. From the results disclosed we can summarize that the vast majority of our patients is retired and earning a monthly disability pension of less than 300 euros. Furthermore, a significant percentage lives with their parents or with relatives, often sharing (or being excused from) house expenses. Patients in this Portuguese region are mainly dependent on their families’ support and apparently have worse living conditions compared to the rest of the country.

Footnotes

Author Note

This study was developed as part of a Master’s thesis in Psychiatry and Mental Health by the Faculty of Medicine of the University of Porto, and the preliminary results of this study were presented at the XIV Portuguese National Congress of Psychiatry (30 January-1 February 2020) and at the 28^th European Congress of Psychiatry (4-7 July 2020).

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Rui Barranha

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