Assessment of quality of life in patients with schizophrenia and their caregivers in selected Central and Eastern European countries: A literature review


Authors

Name Affiliation
Monika Szkultecka-Dębek
Roche Polska Sp. z o.o., Warsaw, Poland
Jacek Walczak
Arcana Institute, Cracow, Poland
Joanna Augustyńska
Arcana Institute, Cracow,Poland
Katarzyna Miernik
Arcana Institute, Cracow,Poland
Jarosław Stelmachowski
Arcana Institute, Cracow, Poland
Izabela Pieniążek
Arcana Institute, Cracow, Poland
Grzegorz Obrzut
Arcana Institute, Cracow, Poland
Angelika Pogroszewska
Arcana Institute, Cracow, Poland
Gabrijela Paulic
Roche Ltd, Zagreb, Croatia
Damir Maric
Roche Ltd, Zagreb, Croatia
Sinisa Antolic
Roche Ltd, Zagreb, Croatia
Jan Pecenak
Faculty of Medicine, Comenius University, Bratislava, Slovakia Profile ORCID
Rok Tavcar
University Psychiatric Clinic Ljubljana, Slovenia Profile ORCID
Andra Indrikson
Roche Eesti OÜ, Tallinn, Estonia
Kaire Aadamsoo
Psychiatry Clinic, North Estonia Medical Centre, Tallinn, Estonia
Slobodan Jankovic
Faculty of Medical Sciences, University of Kragujevac, Kragujevac, Serbia Profile ORCID
Attila J Pulay
Department of Psychiatry and Psychotherapy, Semmelweis University, Hungary
Jozsef Rimay
Roche (Magyarország) Kft, Budaörs, Hungary
Marton Varga
Roche (Magyarország) Kft, Budaörs, Hungary
Ivana Sulkova
Roche Slovensko, s.r.o., Bratislava, Slovakia
Petra Verzun
Roche d.o.o. Slovenia, Ljubljana, Slovenia
contributed: 2015-09-30
final review: 2015-09-30
published: 2015-09-02
Abstract

Background: To investigate the impact of schizophrenia on quality of life (QoL) of patients and caregivers in seven CEE countries, by conducting a literature search.

Methods: Search was performed  in publicly available databases to identify publications from 1995 to 2012 related to schizophrenia and QoL. Publications included those describing health-related QoL data of negative symptoms in patients with schizophrenia.

Results: Out  of an initial search of 2882 abstracts, 1587 were excluded based on duplication or preliminary screening of titles, and a further 1550 publications were excluded based on screening of the abstracts (1510) or full-texts (40). Thus, 37 primary publications related to QoL of patients with schizophrenia and caregivers were identified. Due to differences observed in the identified studies, it was not possible to make direct comparisons nor to pool data for analysis. However, it was consistently reported that schizophrenia greatly affected the QoL of patients and had a significant negative impact on the QoL of caregivers, such that their QoL was considered similar to the patients themselves. In addition, patients with schizophrenia experienced significant stigmatization and discrimination. In general, the presence of negative symptoms was not well-documented in the literature and available antipsychotics had limited impact on the treatment of negative symptoms.

Conclusion: Schizophrenia significantly reduces QoL of patients and their caregivers.  Further research is needed  to better understand  the drivers of impaired QoL caused by schizophrenia, in particular the negative symptoms of schizophrenia,  and how best the burden of illness and associated stigmatization and discrimination may be reduced.


Keywords: burden of illness, negative symptoms, quality of life, Schizophrenia, stigmatization

Introduction

Schizophrenia is one of the most common psychiatric disorders, affecting approximately 1% of the world’s population [36] and is a leading cause of disability [48]. Lifetime prevalence of schizophrenia is high, ranging from 0.4 to 1.4%, due to the early age of onset and chronic course of the disease [36].

The impact schizophrenia upon quality of life (QoL) has been  an active area of research for many years. Schizophrenia is ranked among the op ten leading causes of  disease-related disability in the world and has consistently demonstrated a major negative impact on QoL [48]. The chronic nature of schizophrenia particularly affects the social dimension of QoL. Decreased cognitive and social skills, and hypersensitivity to criticism and stress, can lead to patients becoming isolated from society  and the object of stigmatization [35]. Therefore, treatment goals for patients with schizophrenia not only include reducing the frequency, duration and severity of  episodes and overall morbidity, but also improving psychosocial functioning and QoL [34]. 

Assessment of QoL can provide an additional measure of treatment outcome for patients with schizophrenia. In recent years, a large number of scales have been developed to determine well-being and QoL in patients with schizophrenia [35]. Many individuals with schizophrenia rely on informal daily care, which is typically undertaken by family members, most often parents or siblings [2]. For family members who are caregivers, schizophrenia poses numerous challenges, including management of the patient’s illness and adjustment to the negative impact on the patient’s daily functioning. 

1. Objective

The aim of the study was to identify available information about the impact of schizophrenia, and particularly the negative symptoms of schizophrenia, on QoL in  patients and caregivers across seven Central and Eastern European (CEE) countries. In addition, data on stigmatization and discrimination in patients with schizophrenia was obtained.

 

Methods

A literature search was performed in seven CEE countries (Croatia, Estonia, Hungary, Poland, Serbia, Slovakia and Slovenia). The search strategy for MEDLINE via PubMed, Cochrane Library and Centre for Review and Dissemination databases was developed using the term ‘schizophrenia’ and its synonyms. A targeted search was performed using specific filters to identify:

  • publications from key countries: the country name was combined with the schizophrenia synonyms search strategy
  • relevant papers on the negative symptoms of schizophrenia: the term ‘negative  symptoms’ and its synonyms were added as a filter
  • publications concerning QoL:  terms including ‘health ‘quality of life’ and scale names (for example, ‘EQ5D’ or the European Quality of Life Scale [EuroQOL]) were added as a filter (this search was  conducted only in MEDLINE via PubMed)
  • publications concerning burden of schizophrenia: filters including ‘stigmatization’, ‘discrimination’, ‘costs’ and ‘burden of disease’ were used (this  search was conducted in all databases).

In addition to a general search of publicly available databases, a search was conducted locally in each of the participating countries to include publications in local languages. The searched sources of data were: the local HTA agency databases, local patients registries, national medical journals, databases of national health services, national/central statistical office, national psychiatric association and other relevant sources (e.g. PhD thesis).

The search consisted of publications from 1995 to 2012 (primary studies, reviews and systematic reviews) on the QoL, stigmatization and discrimination of patients with schizophrenia (F20 in the International Classification of Diseases − Version 10 [ICD-10]). All publications that included QoL results were analyzed in relation to assessment of negative symptoms.

 

Results

1.  Quality  of  life

Out of an initial search of 2882 abstracts, 1295 were excluded based on duplication or preliminary screening of titles and a further 1550 publications were excluded during screening of the abstracts (1510) or full texts (40). The remaining thirty-seven primary publications from the seven CEE countries were included in the analysis (Figure 1; a PRISMA flowchart is provided in the appendix). 

Figure 1. Number of quality of life publications per country

Thirty-five of the studies were based in one country only and two were multinational European studies: StoRMi [12] (involved 22 countries including Croatia, Estonia, Poland, Slovakia and Slovenia) and EDEN [43] (based on five countries including Poland and Slovakia). A detailed list of all studies is presented in Table 1.

 

Table  1.  List of studies included in the analysis
  Publication     Country     Instrument(s)     Number     of  timepoints  of     QoL  measurement*     Group  evaluated**  
Adamowski et al.  2009    [1] Poland Specific  (MANSA) 3 Patients  (F20-F29):    inpatients  vs  day-care  ward
Cechnicki et al.   2007  [5] Poland Specific  (QoLI) 1 Patients  (F20)
Chądzyńska  et al. 2002 [7] Poland Specific  (Mercier    and  Tempier  Scale) 1 Patients  vs  family  members
Chądzyńska  et al. 2003    [8] Poland Specific  (Mercier    and  Tempier  Scale) 1 Patients  vs  family  members
Czernikiewicz   &  Górecka   2003 [10] Poland Specific  (QLS,  SQLS) 1 Patients  (F20)
Czernikiewicz et   al.  2005  [11] Poland Specific  (QLS) 1 Patients  (F20)
De  Marinis    et al. 2007  [12] 22    countries  (including  Croatia,    Estonia,  Poland,  Slovakia,    Slovenia) Generic  (SF-36) 3 Patients  (F20    or  other  psychotic    disorder):  conventional  oral    antipsychotic  vs    conventional  depot  antipsychotic  before    switching  to  long    acting  risperidone
Dernovsek et al.   2001[13] Slovenia Specific  +    Generic  (QLS,  EQ-5D) 1 Patients  (F20)
Główczak  et al. 1997    [14] Poland Specific  (Mercier    and  Tempier  Scale) 1 Patients  (F20)
Golubovic  et al. 2010    [15] Serbia Specific  (QLS) 8 Patients  (F20    or  schizoaffective  disorders)    treated  with:  atypical    antipsychotics  vs    classical  antipsychotics
Górecka  &    Czernikiewicz  2004  [16] Poland Specific  (QLS) 1 Patients  (F20)
Górna  et al. 2005    [17] Poland Specific  +    Generic  (SFS,  WHOQOL-    BREF) 2 Patients  (F20)    vs  healthy    subjects
Górna  et al. 2007    [19] Poland Specific  +    Generic  (SFS,  WHOQOL-    BREF) 1 Patients  (F20):    with  depression  vs  without    depression
Górna  et al. 2008    [18] Poland Specific  +    Generic  (SFS,  WHOQOL-    BREF) 3 Patients  (F20)
Hanuszkiewicz et   al.  2007  [20] Poland Specific  (LQoLP) 1 Patients  (F20)
Jaracz  et al. 2008    [22] Poland Specific  (SFS) 3 Patients  (F20)
Jarema  et al. 1995    [25] Poland Generic  (SF-36) 2 Patients  (F20    or  depression):  inpatients    vs  day-hospital  vs  rehabilitation  unit
Jarema  et al. 1997    [24] Poland Generic  (SF-36) 1 Patients  (F20):    inpatients  vs  patients  from    day-hospital  vs    patients  from  day-care    centre
Jarema  &    Konieczyńska  2000 [23] Poland Generic  (SF-36) 2 Patients  (F20)    (men  vs  women)
Jarema  et al. 2002    [26] Poland Generic  (SF-36) 2 Patients  (F20)    (men  vs  women)
Jukić  et al. 2003    [27] Croatia Specific  (QLS) 1 Patients  (F20)    treated  with:  conventional  antipsychotics  vs  novel    antipsychotics
Kasperek  et al. 2002 [28] Poland Specific  (QoLQ) 2 Patients  (F20)    from:  social  skills    training  group  vs psychoeducation  group
Konarzewska et   al.  2012  [29] Poland Specific  (QLS) 1 Patients  (F20    vs  F20    addicted  to  alcohol)
Konieczyńska  et al. 1997    [30] Poland Generic  (SF-36) 3 Patients  (F20)
Margetić  et al.   2011 [31] Croatia Generic (Q-LES-Q-SF) 1 Patients  (F20)    vs  relatives    (key  caregivers)  vs  healthy    people
Mihajlović  et al. 2011    [35] Serbia Specific  +    Generic  (SFS,  SWLS,    WHOQOL-BREF) 1 Patients  (F20)    treated  with:  haloperidol    depot  vs risperidone  long-acting
Opalić &  Femić    2008  [37] Serbia Specific  (combination  of    LQoLP  and  MANSA) 1 Patients  (F20)    vs  healthy    controls
Pąchalska  et al. 2001    [38] Poland Specific  (QLS) 1 Patients  (F20)    vs  patients  incurred    a  closed-head  injury
Pentek et al.   2012  [45] Hungary Generic  (EQ-5D) 1 Patients  (F20)    vs  general    population
Pesek  et al. 2010    [41] Slovenia Generic  (WHOQOL-  BREF) 1 Patients  (F20)
Pesek  et al. 2011    [40] Slovenia Generic  (WHOQOL-  BREF) 1 Patients  (F20)
Popławska et al.    2004    [42] Poland Specific  (IMHC  2000) 2 Patients  (F20    or  depression)  treated    with:  pharmacology  and    psychoeducation vs  pharmacology
Priebe et al.  2011  [43] 5    countries  (including  Poland    and  Slovakia) Specific  (MANSA) 4 Patients  (F20-F29,    F30-F39,
  F40-F49)
Ružić  et al. 2008    [45] Croatia Generic  (Q-LES-Q) 1 Patients  (F20-F29)    who  committed  the    crime  of  murder    or  attempted  murder    in  state  of    insanity
Spiridonow  et al. 1998    [46] Poland Specific  (Mercier    and  Tempier  Scale) 1 Patients  (F20)    vs  healthy    controls
Tomczak  2005 [50]    Poland Generic  (WHOQOL-  BREF) 1 Patients  (F20)    vs  healthy    controls
Tomczak  2006 [49]    Poland Generic  (WHOQOL-  BREF) 1 Patients  (F20)    vs  healthy    controls

 

*QoL could be evaluated once (at a specific time) or two or more assessments of QoL were carried out in different time period
**F20  =  Schizophrenia (according to ICD-10)

MANSA=Manchester Short Assessment of Quality of Life Scale; QoLI=Quality of Life Inventory; QLS=Quality of Life Scale; SQLS=Schizophrenia Quality of Life Scale; SF-36=Short Form (36)n Health Survey; EQ-5D=Euro Quality of Life 5-Dimension Scale; SFS=Social Functioning Scale; WHOQOL-BREF=World Health Organization Quality of Life Brief Instrument; LQoLP=Lancashire Quality of Life Profile; QoLQ=Quality of Life Questionnaire; Q-LES-Q-SF=Quality of Life Enjoyment and Satisfaction Questionnaire – Short Form; SWLS=Satisfaction with Life Scale.

We analyzed publications in terms of the number of estimates of QoL (time  points), populations in which QoL was assessed and instruments used to evaluate QoL.

Four types of study design were observed, relating to study time-length and relationship factors (Figure 2). In the simplest approach the QoL of the analyzed group was evaluated once (at a specific time-point). In a more complex approach, two or assessments of QoL carried out at baseline and other pre-specified time-points were compared. Other studies compared the QoL in two or more groups of individuals, either at one time-point or at two or more time-points. The percentage distribution of the various types of studies is presented in Figure 2.

Figure 2.  Distribution of studies according to design

The evaluation of patients’ QoL was carried out most often by themselves (self-evaluation). However, in some studies, the assessment was made by healthcare professionals (doctors, nurses), caregivers or relatives. In 46% of the studies, QoL of other groups was also assessed, such as patients with mental disorders other than schizophrenia, caregivers of patients with schizophrenia, healthy people (trial sample) or a sample of age- and country-matched population (Figure 3).

Figure 3.  Distribution of 37 studies by evaluated group

Schizophrenia was found to greatly affect the QoL of patients and had a significant negative impact on the QoL of caregivers. Both general QoL questionnaires and those specific for schizophrenia were reported. However, only a few instruments addressed the impact of negative symptoms on QoL (Figure 4).

Questionnaires not specific for schizophrenia were as follows (a detailed list of studies and instruments are presented in Table 1): 

  • EQ-5D: includes domains such as Mobility, Self-Care, Usual Activities, Pain/Discomfort And Anxiety/Depression
  • Quality of Life Enjoyment and Satisfaction Questionnaire-Short Form (QLESQ-SF): measures satisfaction with domains such as physical health, mood, work and household activities on a 5-point scale 
  • 7-point Satisfaction with Life Scale (SWLS)
  • Short Form-36 (SF-36)  questionnaire: includes  domains such as Vitality, Physical Functioning, Bodily Pain, General Health Perceptions, Physical Role Functioning, Emotional Role Functioning, Social  Role Functioning and Mental Health
  • World Health Organization Quality of Life Instrument – BREF (WHOQOL-BREF): includes domains for Overall QoL and General Health, Physical Health, Psychological Status, Social Relationships and Environment
  • Quality of Life Questionnaire: includes domains for General Well-Being, Interpersonal Relations, Organizational Activity, Occupational Activity, and Leisure and Recreational Activity.

The disease-specific questionnaires used in assessment of QoL of patients with schizophrenia were as follows (a detailed list of studies and instruments are presented  in Table 1): 

  • Lancashire Quality of  Life Profile (LQoLP):  an interviewer-administered instrument for patients with chronic mental illness
  • Manchester Short  Assessment  of  Quality  of  Life  (MANSA):  a  questionnaire  for  patients  with  severe  mental  illness  (includes  some  questions  about  satisfaction  with  leisure  activities  and  the  quality  of  social  relationships  based  on  a  7-point  satisfaction  scale)
  • Quality  of  Life  Interview  (QoLI):  an  instrument  dedicated  to  patients  with  mental  illness
  • Heinrichs Quality  of  Life  Scale  (QLS):  schizophrenia-specific QoL  instrument featuring a 21-item scale
  • Schizophrenia Quality of Life Scale  (SQLS): a brief self-report measure
  • Social Functioning Scale (SFS): an  instrument developed and validated on outpatients and conducted as a verbal interview.
Figure 4.  Number of studies with different types of questionnaires

Three other questionnaires less commonly presented in publications were also identified: the Liebermans’ Quality of Life Questionnaire (QLQ), Mercier and Tempier Scale and IMHC 2000 (see Table 1). Only a few of the disease-specific QoL instruments measured dimensions relating to negative symptoms, as listed below:   

  • Lancashire Quality of Life Profile (LQoLP): an extensive interviewer-administered instrument for patients with chronic mental illness including schizophrenia, offering objective QoL indicators  and subjective QoL estimates.  in addition, the LQoLP assesses positive and negative  affect, positive and negative self-esteem and global well-being
  • Heinrichs Quality of Life Scale (QLS): a 21-item scale for patients with schizophrenia based on a semi-structured interview designed to assess deficit symptoms over the preceding 4 weeks. The items are grouped into categories: Intrapsychic Foundations, Instrumental Role and Common Objects and Activities 
  • Schizophrenia Quality of Life Scale (SQLS): a 30-item self-report questionnaire designed for patients with  schizophrenia, consisting of three scales (Psychosocial, Motivation and energy, and Symptoms and side-effects)
  • Social Functioning Scale (SFS): a 79-item  questionnaire  that  can  either  be  completed  by  the  patient  or  interviewer  and  covers  Social  engagement,  Interpersonal  communication,  Activities  of  daily  living,  Recreation, Social activities, Competence at independent living and Occupation/employment. 

 

The literature confirmed that schizophrenia  greatly  affects quality of life of caregivers. Three publications demonstrated  that the QoL of patients with schizophrenia and their caregivers is similar [7,8,31].

According to the literature, QoL significantly improves  after a hospital stay, when compared with QoL at the time of admission [30,42].  However, there was no improvement in QoL for additional hospitalization after the initial hospital  stay [13,17,28].

2.  Stigmatization and discrimination

In addition to a lower QoL, patients with schizophrenia often experienced stigmatization and discrimination, although definitions of the two differed widely among the publications. Negative attitudes towards people with schizophrenia were also found to be prevalent in the CEE countries. 

According to both international and country-specific publications, stigma related to schizophrenia can lead to rejection, discrimination, distress, social isolation, unemployment, homelessness, alcohol and drug abuse, and criminalization, factors which reduce the likelihood of clinical improvement and social reintegration [32,44,51]. As a consequence, stigmatization can also lead to poor attitudes towards physical health care, which is associated with higher mortality rates in patients with schizophrenia [52]. Those patients are often treated poorly with regards to their right to work, personal dignity, right to receive legal justice, and equal access to medical treatment [6]. 

Stigmatization, together with other socioeconomic factors, is a key barrier to employment for patients with schizophrenia [33]. The number of professionally active or studying patients decreases by approximately one-half after initial hospitalization and the majority of patients receive a disability pension, indicating that vocational situation worsens in patients with schizophrenia during the first few years after hospitalization [22].

According to studies that cover populations from more than one country, the level of discrimination against patients with schizophrenia in European countries (including the seven selected CEE countries) was similar. In a multinational study [3], 42% of examined patients reported moderate or high levels of self-stigma (i.e. a personal response to perceived mental illness stigma) and 69% reported moderate-to-high levels of perceived discrimination. The majority of patients felt that the public hold negative attitudes towards mental health service users.

In a Polish study [4], the most common forms of discrimination experienced by patients were listed as: the feeling of being rejected by other people (87%), breaking off personal contact (50%), a negative public image of a mentally ill person in the media (38%), and problems in the area of employment (31%).

The burden of care on families with one or more family member with  schizophrenia is very high [33]. Stigmatization and discrimination are key contributors to this burden in both patients with schizophrenia and their caregivers [9,47].

 

Discussion

A wide variety of QoL publications were identified in this study. In the 37 articles analysed, 15 instruments had been used to assess the impact of schizophrenia on QoL (5 generic and 10 specific to schizophrenia or mental health disorders). Among the general scales, the World Health Organization of Life Instrument BREF (WHOQOL-BREF) (in eight studies) and SF-36 (in six studies) were most frequently used, whilst among schizophrenia-specific scales, QoL was evaluated most often by the Quality of Life Scale (QLS, Heinrichs, in eight studies) and Social Functioning Scale (SFS, Birchwood, in five studies). 

A number of aspects of QoL have been  investigated and reported in the literature, including: 

  • factors affecting the QoL of patients with schizophrenia, caregivers or healthy subjects
  • factors influencing treatment choice
  • correlations with mental condition, psychopathological symptoms or patient functioning. 

The studies also differ significantly depending on their purpose, which influences the design, methodology and overall results. Aims of the studies reported are varied but typically include: 

  • identification of the factors affecting QoL
  • comparison  of the QoL of patients with schizophrenia versus other patients, caregivers or healthy subjects
  • examination of whether QoL is correlated with mental condition, psychopathological symptoms, or patient everyday functioning
  • evaluation of the influence of  drugs or course of treatment on QoL

Due to the variety of data observed in the studies, it is not possible to make direct comparisons or pool data for analysis. However, it was consistently reported that patients with schizophrenia report worse QoL compared with the general population and that there is a significant negative impact on the QoL of caregivers, such that their QoL is similar to patients with schizophrenia. Furthermore, the QoL of patients with schizophrenia, after inpatient treatment, is significantly better than at time of admission to the hospital.

 

Conclusion

There has been extensive research into the QoL of patients with schizophrenia and it has been consistently reported that schizophrenia significantly reduces the QoL of patients and their caregivers. In CEE countries, patients with schizophrenia experience stigmatization and discrimination, and an associated impact on their QoL and that of their caregivers. There are a number of tools available to assess QoL, but many of these do not specifically measure the negative symptoms of schizophrenia, which are known to negatively impact QoL. Further research is needed to consolidate the existing body of literature to better understand the drivers of impaired QoL in patients with schizophrenia. In particular, future research could investigate negative symptoms, and how best the burden of illness can be reduced for both patients and caregivers.

 

Acknowledgements

Editorial assistance for this manuscript was provided by ApotheCom and InVentiv Medical Communications and was funded by F. Hoffmann-La Roche Ltd. 

Conflict of Interest

The authors have no conflicts of interest or financial disclosures to declare, however those who are also employees of Roche had support from Roche for their travel to the project meeting, as part of their responsibilities in the project.

Appendix

PRISMA Flow Diagram: Quality of life studies (MEDLINE via PubMed) 

PRISMA Flow Diagram: Quality of life studies (MEDLINE via PubMed)

 

 

 


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