568129 research-article2015
ISP0010.1177/0020764014568129International Journal of Social PsychiatryDel Vecchio et al.
E CAMDEN SCHIZOPH
Original Article
The role of relatives in pathways to care of patients with a first episode of psychosis
International Journal of Social Psychiatry 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0020764014568129 isp.sagepub.com
Valeria Del Vecchio1, Mario Luciano1, Gaia Sampogna1, Corrado De Rosa1, Domenico Giacco1,2, Ilaria Tarricone3, Francesco Catapano1 and Andrea Fiorillo1
Abstract Aims: To explore the role of relatives in pathways to care of patients with a recent onset of psychosis. Methods: A total of 34 consecutive patients and their relatives from the Department of Psychiatry of the University of Naples SUN participated in the study. Pathways to care were retrospectively evaluated by administering the Pathways to Care Form and the Nottingham Onset Schedule (NOS) to patients, relatives and treating physicians. Relatives were addressed with the Family Involvement in Pathways to care Schedule (FIPS). Results: Duration of untreated illness (DUI) and duration of untreated psychosis (DUP) were 145.4 (±141.9) and 33.3 (±54.0) weeks, respectively. Help-seeking delay was 17.6 (±45.0) weeks. The first request for help was made by relatives in 76% of cases. Among health professionals, general practitioners were those most frequently contacted, followed by psychiatrists, neurologists or psychologists. Stigma and wrong attribution of psychotic symptoms were the main reasons for help-seeking delays. Conclusions: Relatives play a crucial role in pathways to care of patients with psychosis. DUI and DUP could be reduced by interventions aimed at increasing knowledge of early symptoms in the general population, and by the provision of psychiatric consultations in non-stigmatizing settings for young people with psychological distress. Keywords Duration of untreated psychosis, first episode psychosis, pathways to care, relatives, schizophrenia
Introduction Pathways to care have been increasingly explored in patients with severe mental disorders in the last decades (Compton, Esterberg, Druss, Walker, & Kaslow, 2006; Gater & Goldberg, 1991; Rogler & Cortes, 1993). Several studies documented that family members are often involved in help-seeking of patients with schizophrenia, ranging from 33% to 50% in different cultural contexts (Archie et al., 2010; Sharifi et al., 2009). Research is needed on the complex ways in which family-related variables influence the duration of untreated psychosis (DUP) and pathways to care (Compton, Chien, Leiner, Goulding, & Weiss, 2008). Quantitative studies show that patients’ relatives tend to consider the early psychotic symptoms as the consequence of ‘normal’ adolescent behaviours (Brunet, Birchwood, Lester, & Thornhill, 2007), physical illnesses, drug use (Green, Young, & Kavanagh, 2005) or temperamental characteristics (Chien & Compton, 2008; Compton et al., 2008). Moreover, even when relatives recognize the need for a psychiatric help, they prefer to avoid psychiatric consultations due to stigma (Franz et al., 2010; Gerlinger et al., 2013; Griffiths, Carron-Arthur, Parsons, & Reid, 2014;
Windell & Norman, 2013) and seek consultations with general practitioners (GPs) or other ‘less stigmatizing’ health professionals (Falloon, 2000; Skeate, Jackson, Birchwood, & Jones, 2002; Tait, Lester, Birchwood, Freemantle, & Wilson, 2005). Finally, in some contexts, relatives experience difficulties in locating mental health centres due to their scarce accessibility and visibility (Anderson, Fuhrer, & Malla, 2010; Bertolote & McGorry, 2005). Despite factors involved in help-seeking in psychosis have been widely explored, the role of relatives has been investigated only rarely and mainly in qualitative studies (Connor et al., 2014). These reports show that relatives 1Department
of Psychiatry, University of Naples SUN, Naples, Italy for Social and Community Psychiatry, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK 3Department of Medical and Surgical Science, Section of Psychiatry, Bologna University, Bologna, Italy 2Unit
Corresponding author: Valeria Del Vecchio, Department of Psychiatry, University of Naples SUN, Largo Madonna delle Grazie, 80138 Naples, Italy. Email: [email protected]
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often feel despair, fears, concerns regarding professional support, and a general sense of hopelessness. These feelings can negatively influence care seeking of their loved ones (Cairns, Reid, & Murray, 2014), who would benefit a lot from an early intervention. The Italian socio-cultural background and mental health care organization may represent an ideal scenario to explore the role of patients’ relatives in pathways to psychiatric treatment (Volpe et al., 2013). In fact, in Italy family members are often involved in the care of mentally ill patients (Luciano et al., 2012), playing different roles in each phase of the disorder. In particular, at the onset of psychosis, relatives could promote or delay referral to mental health professionals, while when the disorders become stable, expressed emotions, family burden and coping strategies can influence relapses, hospitalizations and outcome (Magliano, Fiorillo, Malangone, De Rosa, & Maj, 2006). Furthermore, the focus of Italian national mental health care system on community care (De Girolamo & Cozza, 2000) may have increased visibility of psychiatric services and opportunities for patients to receive appropriate treatments. On the other hand, the high levels of stigma towards psychiatric disorders (Fiorillo, Bassi, de Girolamo, Catapano, & Romeo, 2011; Magliano et al., 2003) and the scarce availability of specialized services for early intervention (Cocchi, Mapelli, Meneghelli, & Preti, 2011; Fiorillo et al., 2013b; Pingani et al, 2014; Pollice et al., 2012) may represent a barrier to the access to care of patients in the early phases of the disorder. This descriptive study aimed to explore (1) pathways to care of patients with a recent onset of schizophreniaspectrum disorders; (2) relatives’ involvement in helpseeking and (3) family-related factors influencing delay in patients’ referral to mental health services.
Methods Participants and setting The sample included 34 patients with a first episode of non-affective psychosis consecutively recruited at the outpatient unit of the Department of Psychiatry at the University of Naples SUN. Patients were included in the study if they met the following criteria: (a) age between 18 and 35 years, (b) diagnosis of schizophrenia-spectrum disorders according to the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV-TR) criteria, (c) onset of psychotic symptoms in the last 5 years and (d) absence of other major physical or mental disorders. Patients were excluded if they suffered from a mental retardation or were not able to provide informed consent.
1997) was used to confirm clinical diagnoses of psychotic disorders. The 24-item Brief Psychiatric Rating Scale (BPRS; Ventura, Nuechterlein, Subotnik, Gutkind, & Gilbert, 2000) was used to measure psychiatric symptoms. Information on pathways to psychiatric care was collected by the ad hoc ‘Pathways to Care Form’ (PCF) schedule. Duration of untreated illness (DUI) and DUP were explored using the Nottingham Onset Schedule (NOS; Singh et al., 2005) administered to patients and their relatives. In case of inaccuracy, information were confirmed through clinical records and treating physicians. For the purposes of this study, DUP was divided into help-seeking delay (i.e. the period between the onset of symptoms and the first request for medical help) and referral delay (i.e. the period between the first request for medical help and the administration of the first adequate treatment according to national guidelines) (Italian Ministry of Health, 2007). Key-relatives (i.e. those spending most time in close contact with the patient) of all recruited patients were retrospectively interviewed with an ‘ad hoc’ schedule (Family Involvement in Pathways to care Schedule (FIPS), exploring their involvement in help-seeking, their views about onset and causes of patients’ symptoms, and the reasons for delay to psychiatric treatment. All patients and relatives provided their informed consent to participate in the study. The approval from the relevant review board was received before the start of the study. Descriptive statistics on socio-demographic and clinical characteristics of patients, DUP and ‘pathways to care’ were analysed using the ‘Statistical Package for Social Sciences (SPSS)’ version 17.0 (SPSS, 2008).
Results Patient characteristics Socio-demographic and clinical characteristics of the 34 patients are reported in Table 1. They are predominantly male (65%) and single (94%), with a mean age of 26 (±5.7) years. Of these, 33 patients (97%) live with their parents and 23% of them are employed. A total of 47% of patients had an acute onset of psychotic symptoms, which were delusions (91%), negative symptoms (47%), hallucinations (41%) and disorganized behaviours (40%). Cannabis was used by 47% of patients at the onset of the illness, alone or in association with other substances. Of these, 12 patients (35%) were admitted to a psychiatric ward and 9 patients (26%) attempted suicide during the first 3 years of the illness.
Relatives’ characteristics
Assessments The Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I; First, Spitzer, Gibbon, & Williams,
All key-relatives of patients recruited in the study accepted to participate to the research assessment. Relatives are predominantly female (71%), with a mean age of 51.9 (±12.8)
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Del Vecchio et al. Table 1. Socio-demographic and clinical characteristics of the sample (n = 34). Gender, male, n (%) Age, mean (SD) Marital status, single, n (%) Living in urban areas, yes, n (%) Education level Primary school degree, n (%) Secondary school degree, n (%) University degree, n (%) Employed, yes, n (%) Living with parents, n (%) Familiarity for mental disorders, yes, n (%) Age at onset of psychotic symptoms, mean (SD) Clinical presentation Delusions, n (%) Negative symptoms, n (%) Hallucinations, n (%) Disorganized behaviours, n (%) Suicide attempts, yes, n (%) Admission to a psychiatric ward, yes, n (%) Problems with the law, yes, n (%) Crisis in the last year, yes, n (%) Illicit substances use, yes, n (%) Cannabis only, yes, n (%) Cannabis and cocaine, yes, n (%) Cannabis and ecstasy, yes, n (%) Cannabis and LSD, yes, n (%) Cannabis and heroin, yes, n (%) BPRS scores Total score, mean (SD) Positive symptoms’ subscale, mean (SD) Negative symptoms’ subscale, mean (SD) Manic/hostility symptoms’ subscale, mean (SD) Depression/anxiety symptoms’ subscale, mean (SD)
22 (64.7) 26.0 (5.7) 32 (94.1) 22 (64.7) 4 (11.4) 28 (81.9) 2 (5.7) 8 (23.5) 33 (97.1) 16 (47.8) 25.1 (5.8) 31 (91.2) 16 (47.1) 14 (41.2) 14 (40) 9 (26.5) 12 (35.3) 5 (14.7) 26 (76.5) 16 (47.1) 8 (23.7) 4 (11.8) 2 (5.8) 1 (2.9) 1 (2.9) 2.7 (.5) 3.5 (.9) 2.0 (.9) 2.3 (.9) 3.1 (.8)
SD: standard deviation; LSD: lysergic acid diethylamide; BPRS: Brief Psychiatric Rating Scale.
years. Of these, 47% have achieved at least a secondary school degree. Relatives interviewed are the patients’ parents in 79% of cases, their brothers or sisters in 18% and their spouses in 3%.
Pathways to psychiatric care and treatments received The interval between onset of psychotic symptoms and the first contact with any health professional (help-seeking delay) was 17.6 (±45.0) weeks. Only 30% of patients had their first care contact with a psychiatrist; the others were seen by GPs (38%), neurologists (21%) or psychologists (11%). On average, patients consulted .8 (±.8) professionals before receiving an appropriate treatment. The interval between the first health contact and referral to mental health services was 15.6 (±29.9) weeks. A total of 35% of patients received an appropriate diagnosis (schizophrenia, schizoaffective disorder, delusional disorder or other psychotic disorders) by the first health
Table 2. Characteristics of pathways to care and of treatment delay (n = 34). n (%) Persons responsible for help-seeking contacts Family members Patient himself/herself Friends First contacted professionals General practitioner Psychiatrist Neurologist Psychologist Total contacts in pathways to care Diagnosis received at first contact Correct diagnosis Uncorrect diagnosis No diagnosis
26 (76.5) 6 (17.6) 2 (5.9) 13 (38.2) 10 (29.4) 7 (20.6) 4 (10.7) .8 (.8) 12 (35.2) 11 (32.4) 11 (32.4)
M (SD)
Duration of untreated psychosis, weeks Duration of untreated illness, weeks Help-seeking delay, weeks Referral delay, weeks
33.3 (54.0) 145.4 (141.9) 17.6 (45.0) 15.6 (29.9)
professional, 32% received a wrong diagnosis (e.g. depression, borderline personality disorder, obsessivecompulsive disorder or acute stress disorder), and the remaining 32% were not given any diagnosis. Mean DUI (i.e. interval between onset of prodromal symptoms and first adequate treatment) was 145.4 (±141.9) weeks, being approximately 3 years. DUP (i.e. interval between onset of psychotic symptoms and first appropriate treatment) was 33.3 (±54.0) weeks, approximately 8 months. Data on pathways to care and duration of treatment delay are reported in Table 2. A total of 10 patients (29%) did not receive any kind of support or treatment by medical professionals, 13 patients (38%) received a psychopharmacological treatment and 12 patients (35%) received a psychotherapeutic approach, alone or in combination with medications. Follow-up visits were provided to 12 patients (35%) only. All treatments received by patients and their families are reported in Table 3.
Relatives’ involvement in pathways to care The early psychological problems most frequently noticed by relatives were odd beliefs (44%), unusual behaviours (29%), depressed mood (20%) and social withdrawal (20%). However, only 44% of them immediately attributed these symptoms to the onset of a psychiatric disorder, while the others considered them a consequence of substance abuse (32%), school difficulties (15%) or love breakdown (9%).
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Table 3. Treatments received at first contact by patients with first episode of psychosis (n = 34). Pharmacological treatment, n (%) Antipsychotics, n (%) Benzodiazepines, n (%) Antidepressants, n (%) Psychotherapeutic treatment, n (%) Information on psychotic disorders and their treatments No treatments Follow-up in outpatient facilities, n (%)
13 (38.2) 8 (23.5) 5 (14.7) 3 (8.8) 12 (35.3) 12 (35.3) 10 (29.4) 12 (35.3)
A total of 76% of family members asked for medical help. Relatives involved in help-seeking (n = 26) were mainly the parents (88%) and, only in a few cases, they were the brothers/sisters (8%) or the spouses (4%); 31% of relatives contacted psychiatric facilities in first instance. The other relatives consulted GPs (31%), neurologists (27%) or psychologists (11%). The main reasons for not referring immediately to psychiatric services were the beliefs that problems were temporary, or were due to stress or substance abuse. Other frequent reasons were the concern that their relative could be labelled as ‘mad’ and a negative opinion on the efficacy of psychiatric treatments. A total of 12% of patients did not accept to be visited by a psychiatrist when relatives proposed consultation.
Discussion We can draw three important conclusions from this descriptive study. First, in Italy, help-seeking for psychotic disorders is often mediated by relatives, as shown by the high involvement (76%) of family members in pathways to care of our patients and by the fact that nearly all the patients still live with their parents (97%). This result is in line with a previous study carried out in our country (Cocchi et al., 2013), in which authors showed that relatives accompanied 62% of patients to the mental health centre and that a family member in 66% of cases requested admission to psychiatric wards. This finding, which is different from that found in other studies carried out in Europe (Compton et al., 2006), probably reflects the peculiar Italian socio-cultural background. In fact, compared to other countries (Jojic et al., 2012; Okasha, Elkholy, & El-Ghamry, 2012; Thomas, 2012; Wagenaar & Baars, 2012), social ties remained fairly stable in Italy, in particular as regards family organization, which is still the fundamental social institution, characterized by strong ties and based on mutual aid of all family members (Luciano et al., 2012). The second important finding is that often relatives do not attribute the early psychological problems to the presence of a mental disorder. In fact, in our sample, the majority of relatives (66%) considered early psychotic symptoms the consequence of substance use, school difficulties or love breakdown. It is likely that the higher DUP
and DUI found in our sample compared to those found in other studies (Archie et al., 2010; Brunet et al., 2007; Norman, Malla, Verdi, Hassal, & Fazekas, 2004; Skeate et al., 2002) are due to this erroneous attribution of symptoms made by relatives (Pescosolido & Olafsdottir, 2013). Therefore, treatment delays could be reduced by appropriate informative and antistigma campaigns for the general population. It may also be useful to provide psychiatric consultations to adolescents and young adults with specific and non-specific psychological distress in nonstigmatizing settings (McGorry, 2008; Pollice et al., 2012). The third important finding is that most patients had a first care contact with health professionals different from psychiatrists. In particular, compared with other studies carried out with a similar methodology (Compton et al., 2006), we observed a higher number of contacts with GPs. This finding emphasizes the need to adequately train GPs in the early detection of schizophrenia and other severe mental disorders in order to guarantee early referrals to psychiatric services (Salokangas & McGlashan, 2008). On the other hand, our patients had a low number of intermediate care contacts before receiving appropriate treatments (Compton et al., 2008; Compton et al., 2006; Lincoln, Harrigan, & McGorry, 1998), which is probably due to the dissemination of mental health facilities in the community (De Girolamo et al., 2007). Other results which deserve some consideration are the fact that 32% of our patients received a wrong diagnosis at first care contact and that only one patient out of three received a pharmacological or a psychosocial intervention. These findings are probably related to the poor skills of non-mental-health professionals in diagnosing psychiatric illnesses (Lester, Birchwood, Freemantle, Michail, & Tait, 2009; Norman et al., 2004); yet, a likely tendency to avoid the term ‘schizophrenia’, which is still associated with high levels of stigma and discrimination, may have also played a role (Magliano et al., 2001). From a research perspective, our findings emphasize the need to develop specific early intervention programmes for patients with psychosis and their relatives. This need has been confirmed by a recent survey with European stakeholders involved in the mental health enterprise, who listed early detection and management of mental disorders as one of the top-10 priorities for future research (Fiorillo et al., 2013a; Haro et al., 2014). These programmes should include a multidisciplinary treatment on the basis of patients’ and relatives’ needs (McGorry, 2008).
Strengths and limitations To our knowledge, this is one of the first in-depth evaluation of relatives’ involvement in pathways to care and of family-related factors that may cause delays in patients’ access to psychiatric care. Furthermore, this study offers for the first time data on DUP and pathways to psychiatric
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Del Vecchio et al. care of patients with a first episode of psychosis in Italy. The adopted methodology ensures that the findings of this study are easily comparable with those of studies carried out in different socio-cultural contexts (Brunet et al., 2007; Compton et al., 2006). Efforts to reduce recall bias effect, a limitation which is common to all studies on pathways to care, have been made by using several sources of information (patients, relatives, medical professionals). However, some important methodological limitations have to be acknowledged. First, this study has been carried out only in one University site in Southern Italy with a small sample size, and therefore, our findings cannot be generalized to the whole national context. However, our study can be considered a pilot one, and an involvement of other sites recruiting more patients and relatives is advisable. Another limitation is the lack of comparison with patients affected by other mental disorders, in order to better understand if our findings are specific to schizophrenia or can be found in all mental disorders.
Conclusion DUP and DUI are still very long in Italy. However, the focus on community care of mental health services provides opportunities for early detection and treatment of mental disorders. Our findings highlight the importance of relatives in influencing the DUP in Italy. Their involvement in routine care of patients with a recent onset of psychosis cannot be neglected, since they often represent the first source of support in care seeking. The improvement of relatives’ knowledge about mental disorders should be prioritized in mental health research and practice. Psychoeducational family interventions have proved to be particularly useful in improving relatives’ skills to effectively interact with patients with psychosis (Magliano & Fiorillo, 2007), but their effect in the early stages of psychosis is still surprisingly understudied. More research in this domain is needed. Pathways to care of patients with psychosis may be improved by the following actions: (1) conducting informative campaigns aimed at improving general population knowledge about schizophrenia early symptoms and (2) providing psychiatric consultations for young people with specific and non-specific psychological distress. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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of the 24-item Brief Psychiatric Rating Scale. Psychiatric Research, 97, 129–135. Volpe, U., Fiorillo, A., Luciano, M., Del Vecchio, V., Palumbo, C., Calò, S., ... Sartorius, N. (2013). Pathways to mental health care in Italy: Results from a multicenter study. International Journal of Social Psychiatry, 60, 508–513. Wagenaar, K., & Baars, J. (2012). Family and family therapy in the Netherlands. International Review of Psychiatry, 24, 144–148. Windell, D., & Norman, R. M. G. (2013). A qualitative analysis of influences on recovery following a first episode of psychosis. International Journal of Social Psychiatry, 59, 493–500.
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ISP0010.1177/0020764014568129International Journal of Social PsychiatryDel Vecchio et al.
E CAMDEN SCHIZOPH
Original Article
The role of relatives in pathways to care of patients with a first episode of psychosis
International Journal of Social Psychiatry 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0020764014568129 isp.sagepub.com
Valeria Del Vecchio1, Mario Luciano1, Gaia Sampogna1, Corrado De Rosa1, Domenico Giacco1,2, Ilaria Tarricone3, Francesco Catapano1 and Andrea Fiorillo1
Abstract Aims: To explore the role of relatives in pathways to care of patients with a recent onset of psychosis. Methods: A total of 34 consecutive patients and their relatives from the Department of Psychiatry of the University of Naples SUN participated in the study. Pathways to care were retrospectively evaluated by administering the Pathways to Care Form and the Nottingham Onset Schedule (NOS) to patients, relatives and treating physicians. Relatives were addressed with the Family Involvement in Pathways to care Schedule (FIPS). Results: Duration of untreated illness (DUI) and duration of untreated psychosis (DUP) were 145.4 (±141.9) and 33.3 (±54.0) weeks, respectively. Help-seeking delay was 17.6 (±45.0) weeks. The first request for help was made by relatives in 76% of cases. Among health professionals, general practitioners were those most frequently contacted, followed by psychiatrists, neurologists or psychologists. Stigma and wrong attribution of psychotic symptoms were the main reasons for help-seeking delays. Conclusions: Relatives play a crucial role in pathways to care of patients with psychosis. DUI and DUP could be reduced by interventions aimed at increasing knowledge of early symptoms in the general population, and by the provision of psychiatric consultations in non-stigmatizing settings for young people with psychological distress. Keywords Duration of untreated psychosis, first episode psychosis, pathways to care, relatives, schizophrenia
Introduction Pathways to care have been increasingly explored in patients with severe mental disorders in the last decades (Compton, Esterberg, Druss, Walker, & Kaslow, 2006; Gater & Goldberg, 1991; Rogler & Cortes, 1993). Several studies documented that family members are often involved in help-seeking of patients with schizophrenia, ranging from 33% to 50% in different cultural contexts (Archie et al., 2010; Sharifi et al., 2009). Research is needed on the complex ways in which family-related variables influence the duration of untreated psychosis (DUP) and pathways to care (Compton, Chien, Leiner, Goulding, & Weiss, 2008). Quantitative studies show that patients’ relatives tend to consider the early psychotic symptoms as the consequence of ‘normal’ adolescent behaviours (Brunet, Birchwood, Lester, & Thornhill, 2007), physical illnesses, drug use (Green, Young, & Kavanagh, 2005) or temperamental characteristics (Chien & Compton, 2008; Compton et al., 2008). Moreover, even when relatives recognize the need for a psychiatric help, they prefer to avoid psychiatric consultations due to stigma (Franz et al., 2010; Gerlinger et al., 2013; Griffiths, Carron-Arthur, Parsons, & Reid, 2014;
Windell & Norman, 2013) and seek consultations with general practitioners (GPs) or other ‘less stigmatizing’ health professionals (Falloon, 2000; Skeate, Jackson, Birchwood, & Jones, 2002; Tait, Lester, Birchwood, Freemantle, & Wilson, 2005). Finally, in some contexts, relatives experience difficulties in locating mental health centres due to their scarce accessibility and visibility (Anderson, Fuhrer, & Malla, 2010; Bertolote & McGorry, 2005). Despite factors involved in help-seeking in psychosis have been widely explored, the role of relatives has been investigated only rarely and mainly in qualitative studies (Connor et al., 2014). These reports show that relatives 1Department
of Psychiatry, University of Naples SUN, Naples, Italy for Social and Community Psychiatry, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK 3Department of Medical and Surgical Science, Section of Psychiatry, Bologna University, Bologna, Italy 2Unit
Corresponding author: Valeria Del Vecchio, Department of Psychiatry, University of Naples SUN, Largo Madonna delle Grazie, 80138 Naples, Italy. Email: [email protected]
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often feel despair, fears, concerns regarding professional support, and a general sense of hopelessness. These feelings can negatively influence care seeking of their loved ones (Cairns, Reid, & Murray, 2014), who would benefit a lot from an early intervention. The Italian socio-cultural background and mental health care organization may represent an ideal scenario to explore the role of patients’ relatives in pathways to psychiatric treatment (Volpe et al., 2013). In fact, in Italy family members are often involved in the care of mentally ill patients (Luciano et al., 2012), playing different roles in each phase of the disorder. In particular, at the onset of psychosis, relatives could promote or delay referral to mental health professionals, while when the disorders become stable, expressed emotions, family burden and coping strategies can influence relapses, hospitalizations and outcome (Magliano, Fiorillo, Malangone, De Rosa, & Maj, 2006). Furthermore, the focus of Italian national mental health care system on community care (De Girolamo & Cozza, 2000) may have increased visibility of psychiatric services and opportunities for patients to receive appropriate treatments. On the other hand, the high levels of stigma towards psychiatric disorders (Fiorillo, Bassi, de Girolamo, Catapano, & Romeo, 2011; Magliano et al., 2003) and the scarce availability of specialized services for early intervention (Cocchi, Mapelli, Meneghelli, & Preti, 2011; Fiorillo et al., 2013b; Pingani et al, 2014; Pollice et al., 2012) may represent a barrier to the access to care of patients in the early phases of the disorder. This descriptive study aimed to explore (1) pathways to care of patients with a recent onset of schizophreniaspectrum disorders; (2) relatives’ involvement in helpseeking and (3) family-related factors influencing delay in patients’ referral to mental health services.
Methods Participants and setting The sample included 34 patients with a first episode of non-affective psychosis consecutively recruited at the outpatient unit of the Department of Psychiatry at the University of Naples SUN. Patients were included in the study if they met the following criteria: (a) age between 18 and 35 years, (b) diagnosis of schizophrenia-spectrum disorders according to the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV-TR) criteria, (c) onset of psychotic symptoms in the last 5 years and (d) absence of other major physical or mental disorders. Patients were excluded if they suffered from a mental retardation or were not able to provide informed consent.
1997) was used to confirm clinical diagnoses of psychotic disorders. The 24-item Brief Psychiatric Rating Scale (BPRS; Ventura, Nuechterlein, Subotnik, Gutkind, & Gilbert, 2000) was used to measure psychiatric symptoms. Information on pathways to psychiatric care was collected by the ad hoc ‘Pathways to Care Form’ (PCF) schedule. Duration of untreated illness (DUI) and DUP were explored using the Nottingham Onset Schedule (NOS; Singh et al., 2005) administered to patients and their relatives. In case of inaccuracy, information were confirmed through clinical records and treating physicians. For the purposes of this study, DUP was divided into help-seeking delay (i.e. the period between the onset of symptoms and the first request for medical help) and referral delay (i.e. the period between the first request for medical help and the administration of the first adequate treatment according to national guidelines) (Italian Ministry of Health, 2007). Key-relatives (i.e. those spending most time in close contact with the patient) of all recruited patients were retrospectively interviewed with an ‘ad hoc’ schedule (Family Involvement in Pathways to care Schedule (FIPS), exploring their involvement in help-seeking, their views about onset and causes of patients’ symptoms, and the reasons for delay to psychiatric treatment. All patients and relatives provided their informed consent to participate in the study. The approval from the relevant review board was received before the start of the study. Descriptive statistics on socio-demographic and clinical characteristics of patients, DUP and ‘pathways to care’ were analysed using the ‘Statistical Package for Social Sciences (SPSS)’ version 17.0 (SPSS, 2008).
Results Patient characteristics Socio-demographic and clinical characteristics of the 34 patients are reported in Table 1. They are predominantly male (65%) and single (94%), with a mean age of 26 (±5.7) years. Of these, 33 patients (97%) live with their parents and 23% of them are employed. A total of 47% of patients had an acute onset of psychotic symptoms, which were delusions (91%), negative symptoms (47%), hallucinations (41%) and disorganized behaviours (40%). Cannabis was used by 47% of patients at the onset of the illness, alone or in association with other substances. Of these, 12 patients (35%) were admitted to a psychiatric ward and 9 patients (26%) attempted suicide during the first 3 years of the illness.
Relatives’ characteristics
Assessments The Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I; First, Spitzer, Gibbon, & Williams,
All key-relatives of patients recruited in the study accepted to participate to the research assessment. Relatives are predominantly female (71%), with a mean age of 51.9 (±12.8)
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Del Vecchio et al. Table 1. Socio-demographic and clinical characteristics of the sample (n = 34). Gender, male, n (%) Age, mean (SD) Marital status, single, n (%) Living in urban areas, yes, n (%) Education level Primary school degree, n (%) Secondary school degree, n (%) University degree, n (%) Employed, yes, n (%) Living with parents, n (%) Familiarity for mental disorders, yes, n (%) Age at onset of psychotic symptoms, mean (SD) Clinical presentation Delusions, n (%) Negative symptoms, n (%) Hallucinations, n (%) Disorganized behaviours, n (%) Suicide attempts, yes, n (%) Admission to a psychiatric ward, yes, n (%) Problems with the law, yes, n (%) Crisis in the last year, yes, n (%) Illicit substances use, yes, n (%) Cannabis only, yes, n (%) Cannabis and cocaine, yes, n (%) Cannabis and ecstasy, yes, n (%) Cannabis and LSD, yes, n (%) Cannabis and heroin, yes, n (%) BPRS scores Total score, mean (SD) Positive symptoms’ subscale, mean (SD) Negative symptoms’ subscale, mean (SD) Manic/hostility symptoms’ subscale, mean (SD) Depression/anxiety symptoms’ subscale, mean (SD)
22 (64.7) 26.0 (5.7) 32 (94.1) 22 (64.7) 4 (11.4) 28 (81.9) 2 (5.7) 8 (23.5) 33 (97.1) 16 (47.8) 25.1 (5.8) 31 (91.2) 16 (47.1) 14 (41.2) 14 (40) 9 (26.5) 12 (35.3) 5 (14.7) 26 (76.5) 16 (47.1) 8 (23.7) 4 (11.8) 2 (5.8) 1 (2.9) 1 (2.9) 2.7 (.5) 3.5 (.9) 2.0 (.9) 2.3 (.9) 3.1 (.8)
SD: standard deviation; LSD: lysergic acid diethylamide; BPRS: Brief Psychiatric Rating Scale.
years. Of these, 47% have achieved at least a secondary school degree. Relatives interviewed are the patients’ parents in 79% of cases, their brothers or sisters in 18% and their spouses in 3%.
Pathways to psychiatric care and treatments received The interval between onset of psychotic symptoms and the first contact with any health professional (help-seeking delay) was 17.6 (±45.0) weeks. Only 30% of patients had their first care contact with a psychiatrist; the others were seen by GPs (38%), neurologists (21%) or psychologists (11%). On average, patients consulted .8 (±.8) professionals before receiving an appropriate treatment. The interval between the first health contact and referral to mental health services was 15.6 (±29.9) weeks. A total of 35% of patients received an appropriate diagnosis (schizophrenia, schizoaffective disorder, delusional disorder or other psychotic disorders) by the first health
Table 2. Characteristics of pathways to care and of treatment delay (n = 34). n (%) Persons responsible for help-seeking contacts Family members Patient himself/herself Friends First contacted professionals General practitioner Psychiatrist Neurologist Psychologist Total contacts in pathways to care Diagnosis received at first contact Correct diagnosis Uncorrect diagnosis No diagnosis
26 (76.5) 6 (17.6) 2 (5.9) 13 (38.2) 10 (29.4) 7 (20.6) 4 (10.7) .8 (.8) 12 (35.2) 11 (32.4) 11 (32.4)
M (SD)
Duration of untreated psychosis, weeks Duration of untreated illness, weeks Help-seeking delay, weeks Referral delay, weeks
33.3 (54.0) 145.4 (141.9) 17.6 (45.0) 15.6 (29.9)
professional, 32% received a wrong diagnosis (e.g. depression, borderline personality disorder, obsessivecompulsive disorder or acute stress disorder), and the remaining 32% were not given any diagnosis. Mean DUI (i.e. interval between onset of prodromal symptoms and first adequate treatment) was 145.4 (±141.9) weeks, being approximately 3 years. DUP (i.e. interval between onset of psychotic symptoms and first appropriate treatment) was 33.3 (±54.0) weeks, approximately 8 months. Data on pathways to care and duration of treatment delay are reported in Table 2. A total of 10 patients (29%) did not receive any kind of support or treatment by medical professionals, 13 patients (38%) received a psychopharmacological treatment and 12 patients (35%) received a psychotherapeutic approach, alone or in combination with medications. Follow-up visits were provided to 12 patients (35%) only. All treatments received by patients and their families are reported in Table 3.
Relatives’ involvement in pathways to care The early psychological problems most frequently noticed by relatives were odd beliefs (44%), unusual behaviours (29%), depressed mood (20%) and social withdrawal (20%). However, only 44% of them immediately attributed these symptoms to the onset of a psychiatric disorder, while the others considered them a consequence of substance abuse (32%), school difficulties (15%) or love breakdown (9%).
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Table 3. Treatments received at first contact by patients with first episode of psychosis (n = 34). Pharmacological treatment, n (%) Antipsychotics, n (%) Benzodiazepines, n (%) Antidepressants, n (%) Psychotherapeutic treatment, n (%) Information on psychotic disorders and their treatments No treatments Follow-up in outpatient facilities, n (%)
13 (38.2) 8 (23.5) 5 (14.7) 3 (8.8) 12 (35.3) 12 (35.3) 10 (29.4) 12 (35.3)
A total of 76% of family members asked for medical help. Relatives involved in help-seeking (n = 26) were mainly the parents (88%) and, only in a few cases, they were the brothers/sisters (8%) or the spouses (4%); 31% of relatives contacted psychiatric facilities in first instance. The other relatives consulted GPs (31%), neurologists (27%) or psychologists (11%). The main reasons for not referring immediately to psychiatric services were the beliefs that problems were temporary, or were due to stress or substance abuse. Other frequent reasons were the concern that their relative could be labelled as ‘mad’ and a negative opinion on the efficacy of psychiatric treatments. A total of 12% of patients did not accept to be visited by a psychiatrist when relatives proposed consultation.
Discussion We can draw three important conclusions from this descriptive study. First, in Italy, help-seeking for psychotic disorders is often mediated by relatives, as shown by the high involvement (76%) of family members in pathways to care of our patients and by the fact that nearly all the patients still live with their parents (97%). This result is in line with a previous study carried out in our country (Cocchi et al., 2013), in which authors showed that relatives accompanied 62% of patients to the mental health centre and that a family member in 66% of cases requested admission to psychiatric wards. This finding, which is different from that found in other studies carried out in Europe (Compton et al., 2006), probably reflects the peculiar Italian socio-cultural background. In fact, compared to other countries (Jojic et al., 2012; Okasha, Elkholy, & El-Ghamry, 2012; Thomas, 2012; Wagenaar & Baars, 2012), social ties remained fairly stable in Italy, in particular as regards family organization, which is still the fundamental social institution, characterized by strong ties and based on mutual aid of all family members (Luciano et al., 2012). The second important finding is that often relatives do not attribute the early psychological problems to the presence of a mental disorder. In fact, in our sample, the majority of relatives (66%) considered early psychotic symptoms the consequence of substance use, school difficulties or love breakdown. It is likely that the higher DUP
and DUI found in our sample compared to those found in other studies (Archie et al., 2010; Brunet et al., 2007; Norman, Malla, Verdi, Hassal, & Fazekas, 2004; Skeate et al., 2002) are due to this erroneous attribution of symptoms made by relatives (Pescosolido & Olafsdottir, 2013). Therefore, treatment delays could be reduced by appropriate informative and antistigma campaigns for the general population. It may also be useful to provide psychiatric consultations to adolescents and young adults with specific and non-specific psychological distress in nonstigmatizing settings (McGorry, 2008; Pollice et al., 2012). The third important finding is that most patients had a first care contact with health professionals different from psychiatrists. In particular, compared with other studies carried out with a similar methodology (Compton et al., 2006), we observed a higher number of contacts with GPs. This finding emphasizes the need to adequately train GPs in the early detection of schizophrenia and other severe mental disorders in order to guarantee early referrals to psychiatric services (Salokangas & McGlashan, 2008). On the other hand, our patients had a low number of intermediate care contacts before receiving appropriate treatments (Compton et al., 2008; Compton et al., 2006; Lincoln, Harrigan, & McGorry, 1998), which is probably due to the dissemination of mental health facilities in the community (De Girolamo et al., 2007). Other results which deserve some consideration are the fact that 32% of our patients received a wrong diagnosis at first care contact and that only one patient out of three received a pharmacological or a psychosocial intervention. These findings are probably related to the poor skills of non-mental-health professionals in diagnosing psychiatric illnesses (Lester, Birchwood, Freemantle, Michail, & Tait, 2009; Norman et al., 2004); yet, a likely tendency to avoid the term ‘schizophrenia’, which is still associated with high levels of stigma and discrimination, may have also played a role (Magliano et al., 2001). From a research perspective, our findings emphasize the need to develop specific early intervention programmes for patients with psychosis and their relatives. This need has been confirmed by a recent survey with European stakeholders involved in the mental health enterprise, who listed early detection and management of mental disorders as one of the top-10 priorities for future research (Fiorillo et al., 2013a; Haro et al., 2014). These programmes should include a multidisciplinary treatment on the basis of patients’ and relatives’ needs (McGorry, 2008).
Strengths and limitations To our knowledge, this is one of the first in-depth evaluation of relatives’ involvement in pathways to care and of family-related factors that may cause delays in patients’ access to psychiatric care. Furthermore, this study offers for the first time data on DUP and pathways to psychiatric
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Del Vecchio et al. care of patients with a first episode of psychosis in Italy. The adopted methodology ensures that the findings of this study are easily comparable with those of studies carried out in different socio-cultural contexts (Brunet et al., 2007; Compton et al., 2006). Efforts to reduce recall bias effect, a limitation which is common to all studies on pathways to care, have been made by using several sources of information (patients, relatives, medical professionals). However, some important methodological limitations have to be acknowledged. First, this study has been carried out only in one University site in Southern Italy with a small sample size, and therefore, our findings cannot be generalized to the whole national context. However, our study can be considered a pilot one, and an involvement of other sites recruiting more patients and relatives is advisable. Another limitation is the lack of comparison with patients affected by other mental disorders, in order to better understand if our findings are specific to schizophrenia or can be found in all mental disorders.
Conclusion DUP and DUI are still very long in Italy. However, the focus on community care of mental health services provides opportunities for early detection and treatment of mental disorders. Our findings highlight the importance of relatives in influencing the DUP in Italy. Their involvement in routine care of patients with a recent onset of psychosis cannot be neglected, since they often represent the first source of support in care seeking. The improvement of relatives’ knowledge about mental disorders should be prioritized in mental health research and practice. Psychoeducational family interventions have proved to be particularly useful in improving relatives’ skills to effectively interact with patients with psychosis (Magliano & Fiorillo, 2007), but their effect in the early stages of psychosis is still surprisingly understudied. More research in this domain is needed. Pathways to care of patients with psychosis may be improved by the following actions: (1) conducting informative campaigns aimed at improving general population knowledge about schizophrenia early symptoms and (2) providing psychiatric consultations for young people with specific and non-specific psychological distress. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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