J Immigrant Minority Health DOI 10.1007/s10903-016-0376-4

ORIGINAL PAPER

Needs of Patients with Schizophrenia Among an Ethnic Minority Group in Latin America Alejandra Caqueo-Urı´zar1,2 • Laurent Boyer3 • Stephen E. Gilman2,4,5,6

Ó Springer Science+Business Media New York 2016

Abstract The aim of the study is to describe the need profile of outpatients with schizophrenia belonging to an Aymara ethnic group in Latin-America and to compare that profile to non-Aymara patients. A sample of 253 patients were evaluated with the Two-Way Communication Checklist (2-COM Checklist) measuring the needs and satisfaction of the patient; Positive and Negative Syndrome scale for Schizophrenia (PANSS) and Attitude to the Drugs (DAI-10). No significant differences were found between Aymara and non-Aymara, either in the total number of needs or in the subscales of satisfaction or in the types of needs. After adjustment for socio-demographic and clinical factors, patients with higher severity (PANSS) had higher number of needs and lower level of satisfaction. Higher score on DAI-10 is related to a higher total number of & Alejandra Caqueo-Urı´zar [email protected] 1

Escuela de Psicologı´a y Filosofı´a, Universidad de Tarapaca´, Avenida 18 de Septiembre 2222, Arica, Chile

2

Department of Social and Behavioral Sciences, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA 02115-6018, USA

3

EA 3279 – Public Health, Chronic Diseases and Quality of Life – Research Unit, Aix-Marseille University, 13005 Marseille, France

4

Department of Epidemiology, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA 02115-6018, USA

5

Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA 02114, USA

6

Health Behavior Branch, Division of Intramural Population Health Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, 6100 Executive Blvd, Rockville, MD 20852, USA

needs and better satisfaction with medication. Age, sex, ethnicity and employment were also associated with specific needs. The profile of the needs of schizophrenic Aymara patients does not differ from that of non-Aymara patients, and that in both groups it is necessary that the treatment primarily address symptom management and the subjective aspects of quality of life. Keywords Schizophrenia
Ethnicity
Needs
Satisfaction
Minority

Background The needs of psychiatric patients have been defined on the basis of deficiencies, or reductions in functioning across several domains. For example, needs are defined as ‘‘lack of health or wellbeing’’ [1]; ‘‘lack of access to an appropriate form of care’’ [2] or even ‘‘lack of specific activities that can include clinical intervention and social support activities’’ [3]. Two major problems have prevented a comprehensive understanding of the needs that psychiatric patients most commonly have. First, the definition of ‘‘need’’ is still unclear, especially when it comes to ‘‘health care’’ or ‘‘social care’’ domains [1, 4]. Second, mental health services too often fail to detect the full scope of patients’ needs [5]. Detection of needs, in addition to being a basic human right of psychiatric patients and their caregivers, is an important aspect of treatment that provides information about patients and their social context [6, 7]. In the context of schizophrenia, patient needs are highly dependent on the severity of the disorder, with needs primarily driven by psychotic symptoms and psychological distress [5, 8, 9]. Notably, Ochoa et al. [7] reported that

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both the total number of needs and the number of unmet needs were related to the disorganized and excitatory dimensions of schizophrenia symptomatology as measured by the PANSS. Beyond psychotic symptoms and psychological distress, the needs of patients with schizophrenia extend to psychosocial functioning. Thus, the European Psychiatric Services, through the EPSILON study group, reported that schizophrenia patients had deficiencies in the following domains: ‘‘daytime activities,’’ ‘‘company,’’ ‘‘intimate relationships’’ and ‘‘information.’’ Thornicroft et al. [10] concluded that psychiatric services were unable to help the patient in other social problems, such as employment. Social and economic factors are also important dimensions of patient needs. These factors include lower social support and educational attainment [11–13], poverty and unemployment [14, 15]. Patients’ needs are associated with patients’ satisfaction with the care, with higher satisfaction linked with fewer needs [16, 17]. In a broader sense, satisfaction can be defined as ‘‘the extent of an individual’s experience compared with his or her expectation’’ [18]. In this context, several factors influence patient satisfaction, such as: social support [19]; unemployment [10]; ethnicity [20, 21]; adherence to treatment [22]; quality of life [23]; severity and relapse [10]. A gap in the literature is the extent to which cultural factors shape needs [13–24], particularly among ethnic minorities. Cultural background may affect how patients perceive and express their needs [25]. Patients with mental disorders belonging to an ethnic minority experience a double stigma: stigma caused attributable to illness and to their lower socioeconomic status. Ethnic minority patients also tend to be less aware of community resources, possess less social support, face language difficulties [26], and are more likely to discontinue mental health treatment [27–33]. Enhancing our understanding of the needs of ethnic minority patients should therefore lead to improved strategies to lower the rates of treatment discontinuation [34] and improve functional outcomes. This study aims to describe the need profile of outpatients with schizophrenia belonging to an Aymara ethnic group in the Andean region in Latin-America and compare that profile to non-Aymara patients receiving treatment in the same mental health system. The Aymara community resides mostly in three South American countries: western Bolivia, southern Peru and northern Chile. The Aymara culture, with a population of 2 million people, has lived in the Andes Mountains for centuries. However, recent generations of Aymara have undertaken a massive migration, moving from rural towns in the Highland to large cities [35–38]. We hypothesize that Aymara patients will have a less favorable profile of needs and level of satisfaction than

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non-Aymara patients. Due to the disadvantages that ethnic minority patients face, we expect that Aymara patients will report a higher total number of needs, and that they will report a higher level of needs in the following areas: housing, relationships, money, lack of activities, psychological distress, sexual expression symptoms and treatment side-effects; and lower levels of treatment satisfaction.

Data and Methods Study Participants The study sample was comprised of patients with schizophrenia who were receiving services from three mental health clinics in the central-southern Andean regions of northern Chile (Arica), southern Peru (Tacna), and central-western Bolivia (La Paz). The sample included both Aymara and non-Aymara patients. Both the Aymara and non-Aymara patients live in the same urban areas, are served by the same mental health centers, and have roughly comparable socio-demographic characteristics, but the Aymara speak both Spanish and Aymara. Recruitment of Aymara and non-Aymara patients took place in three public health sector clinics in Peru, Chile and Bolivia. We selected the largest public health clinic in each region. The first author reviewed the lists of patients who were attending each center in each country and the research team made assessments over a three-month period in each country. Aymara patients were identified by Aymara surnames as established by legislation regarding indigenous peoples in the three countries, or by Aymara self-identification. Patients were invited to participate as they came to their monthly follow-up visits. Most of the people agreed to participate. We applied a small set of exclusion criteria to the patient groups to ensure ability to participate fully in the interviews. We excluded those in a state of psychotic crisis or having a sensory or cognitive type of disorder preventing evaluation. The final sample included 253 patients with an ICD-10 diagnosis of schizophrenia [39], (33.6 % from Chile, 33.6 % from Peru, and 32.8 % from Bolivia). Interviews were conducted between May 2012 and February 2013.

Interview Procedures The study was approved by the Ethics Committee of the University of Tarapaca´ and the National Health Service of Chile. Two psychologists, who were part of the research team and supervised by the principal researcher, conducted the evaluations of patients under the auspices of the mental

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health services of each of the three countries. They evaluated the patients for between 30 and 45 min. Before the start of the survey, we requested and received informed consent from the patient. We explained the objectives of the study as well as the voluntary nature of participation. We offered no compensation for participating in the study. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. Measures Two-Way Communication Checklist (2-COM Checklist) [40] This instrument is a tool designed to facilitate communication between patients and professionals. It encourages patients speak more openly about their personal experiences in relation to their disease, treatment and impact on their quality of life; helps professionals identify the patients’ concern and design therapeutic strategies for the problems identified; and it assesses the outcomes of the selected interventions. The instrument was administered to patients. It has two sections; the first is a list of 19 common problems and a final open question where the patient can express other problems he or she has which do not appear in the list. The items are grouped in 11 needs relating to housing, relationships, money, lack of activities, psychological distress, sexuality, symptoms, treatment side-effects among others. Questions on a particular need came in two parts: in the first part, patients were asked whether the item was a problem for them (‘‘is this a problem for you’’) and they could tick either yes or no. The second question on the need item was ‘‘would you like to talk about it,’’ which could also be ticked ‘‘yes’’ or ‘‘no.’’ A need was considered present if a patient had made a ‘‘problem’’ tick or a ‘‘talk’’ tick or both. The total needs score resulted from adding the score of the different items. A higher score means higher level of needs. The instrument has also global scales. Global patient wellbeing outcomes in three areas were measured by visual analogue scales ranging from ‘‘very well’’ to ‘‘not at all well.’’ The three items were (1) overall feeling: ‘‘how are you feeling today?’’(2) overall medication: ‘‘how is your medication suiting you at the moment?’’ and (3) overall coping: ‘‘how are you coping with everyday living at the moment?’’ Answers were ticked on the scale so that distance on the scale (0–100) could be measured and analyzed. A higher score means higher level of satisfaction.

The 2-COM checklist has shown adequate test–retest reliability (j = 0.63) and has a Cronbach’s alpha of 0.89 [41, 42]. It is well accepted by patients as a valued aid to communication with their doctors (see http:www.2coms. homestead.com for more information). Positive and Negative Syndrome Scale for Schizophrenia (PANSS) [43] This is a 30-item, rating scale administered to clinicians that is developed to assess psychotic symptoms in individuals with schizophrenia and which comprises three different subscales: positive, negative and general psychopathology. The PANSS has been translated and validated in Spain by Peralta and Cuesta [44] and in Mexico by Fresa´n et al. [45]. In this study, we focused on the PANSS total score, which provides a general measure of the severity of the disorder. Drug Attitude Inventory (DAI-10) [46] This 10-item patient self-report scale was developed to assess attitudes, experiences and beliefs about antipsychotic drugs. The DAI-10 is considered to be a good predictor of adherence to treatment in schizophrenia [46, 47]. Scores ranged from -10 (very poor attitude) to ?10 (best possible attitude). Demographic and Clinical Characteristics Participant demographic characteristics included sex, age, ethnicity (Aymara and non-Aymara), educational level (low or high), marital status (with a partner or without a partner), employment status, and family income (measure of the total salary per month for all members of the family, expressed in US dollars). Clinical characteristics covered the severity of the disorder, as measured by the PANSS and the DAI-10. Statistical Analysis Characteristics of the study population were described with means and standard deviations (SD) for continuous variables and with proportions for categorical variables. We used a t test to evaluate differences in the number of needs, type of need and global satisfaction scales between Aymara and non-Aymara patients. Subsequently, to investigate other variables that may explain the differences in needs between Aymara and Non-Aymara, we fitted multivariable linear regression models. The total number needs, the three satisfaction scales from the 2-COM Checklist, and each of the eleven types of needs were considered as separate dependent variables. In addition to patient ethnicity

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(Aymara/non-Aymara), the following sociodemographic and clinical characteristics were included in the models: gender, age, marital status, occupation, educational level, family income, total PANSS score, and DAI-10 score. Regression coefficients (standardized for continuous covariates) from these models represent the difference in needs associated with a 1-unit difference in each predictor. The data were analyzed using SPSS version 17.0.

Results Sample Characteristics Two hundred and fifty-three patients with schizophrenia were enrolled in the present study. The mean age of patients was 35.6 years, 66.4 % were men, and 46.2 % of the patients were Aymara. The patients had moderately severe symptoms with a total PANSS score of 71.3 (SD = 28.2) (Table 1). The mean number of needs in the sample was 8.2 (SD = 4.5; from 0 to 19). The mean of Overall Feelings was 73.2 (SD = 25.5; from 0 to 100); for Overall Medication was 74.1 (SD = 25.2; from 0 to 100) and for Overall Coping was 71.1(SD = 26.5; from 0 to 100). The distributions of each type of need in Aymara and non-Aymara groups are presented in Table 2. The profile of the needs of the Aymara patients showed needs mainly in the area of Psychological Distress (including difficulties in sleeping,

memory, fatigue, feelings, worried) and Psychotic Symptoms. Aymara patients had a higher total number of needs and lower scores (indicating less satisfaction) on the feeling, medication, and coping scales of the 2-COM scales than non-Aymara patients, but these ethnic differences were not statistically significant (total number of needs, t = -.80, p = .42; Overall Feelings, t = 1.75, p = .08; Overall Medication, t = 1.64, p = .10; Overall Coping, t = 1.79, p = .07). When the 3 scales of patient satisfaction were summed together, Aymara patients (mean = 209.3; SD = 71.8) had lower scores than non-Aymara patients (mean = 225.6, SD = 62.6) (t = 1.88; p = .06). There were no significant differences in the types of needs between Aymara and non-Aymara patients. The regression analyses of patient total needs and the global scales of patient satisfaction are presented in Table 3. Adjusting for socio-demographic and clinical factors, Aymara ethnicity was not associated with patients’ total number of needs nor scores on the global satisfaction scales. The notable finding from these analyses was the strong associations of symptomatology and attitudes towards medication with needs. Patients with higher PANSS scores had a higher number of needs b = 2.07 (95 % confidence interval: 1.40, 2.74); lower Overall Feeling b = -8.56 (-12.55, -4.57); lower Overall Medication b = -9.68 (-13.33, -603) and lower Overall Coping b = -12.40 (-16.311, -8.49). Higher scores (indicating more positive attitudes towards medications) on

Table 1 Socio-demographics and clinical characteristics of the total sample, Aymara and non-Aymara patients Category (%) Demographic variables

Total sample

Sex

Men Women

Aymara

Non-Aymara

66

66

67

34

34

33

46.2

53.8

Ethnicity Marital status Employment out of home Educational level

Married

6.3

6.8

5.9

Non-married

93.7

93.2

94.1

With employment

30.4

31.0

31.3

Without employment

69.6

69.0

68.7

Low (\12 years)

84.2

86.3

82.4

High (C12 years)

15.8

13.7

17.6

Mean (SD) total sample

Aymara

Non-Aymara

Age

35.6 (12.4)

33.9 (11.5)

36.9 (13.1)

Monthly family income (US dollars)

417.6 (429.4)

295.1 (218.9)**

536.7 (538.3)

Severity—PANSS totala

71.3 (28.2)

73.0 (29.2)

69,9 (27.3)

DAI-10

3.0 (4.8)

2.6 (4.9)

3.4 (4.6)

SD standard deviation, PANSS positive and negative syndrome scale for schizophrenia, DAI-10 drug attitude inventory * p \ 0.05; ** p \ 0.01 a PANSS total score of 58 = mildly ill; PANSS total score of 75 = moderately ill; PANSS total score of 95 = markedly ill; PANSS total score of 116 = severely ill

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J Immigrant Minority Health Table 2 Needs of the total sample, Aymara and nonAymara patients

Patients’ needs

Range

Mean (SD) total sample

Aymara

Non-Aymara

Total number of needs

0–19

8.2 (4.5)

8.4 (4.5)

8.0 (4.6)

Overall feeling

0–100

73.2 (25.5)

70.1 (26.6)

75.8 (24.4)

Overall medication

0–100

74.1 (25.2)

71.2 (27.2)

76.6 (23.1)

Overall coping

0–100

71.1 (26.5)

67.8 (27.0)

73.9 (25.9)

Psychological distress

0–6

2.8 (1.9)

2.9 (1.9)

2.7 (1.9)

Psychotic symptoms

0–2

1.0 (.77)

1.0 (.76)

1.0 (.77)

Intimate relationship

0–1

.47 (.50)

.50 (.50)

.45 (.49)

Treatment and medication side effects

0–2

.64 (.78)

.66 (.81)

.62 (.76)

Company

0–1

.30 (.46)

.33 (.47)

.27 (.45)

Money and benefits

0–1

.47 (.050)

.46 (.50)

.47 (.50)

Daytime activities

0–2

.65 (.79)

.67 (.76)

.63 (.81)

Accommodation

0–1

.23 (.42)

.26 (.44)

.20 (.40)

Transport

0–1

.27 (.44)

.27 (.45)

.27 (.44)

Sexual expression

0–1

.51 (.50)

.53 (.50)

.50 (.50)

Information about the treatment

0–1

.77 (.41)

.73 (.44)

.80 (.40)

* p \ 0.05; ** p \ 0.01

Table 3 Linear regression model of 2-COM Checklist (patients’ total needs and satisfaction scales) Regression coefficient (95 % CI) Total of need

Overall feeling

Overall medication

Overall coping

.80 (-.52, 2.14)

-2.52 (-10.52, 5.47)

-4.46 (-11.78, 2.86)

-1.20 (-9.00, 6.59)

-.66 (-1.31, - .01)

.21 (-3.65, 4.08)

2.10 (-1.48, 5.69)

.32 (-3.46, 4.10)

-.30 (-1.52, .92)

-3.49 (-10.81, 3.83)

-4.21 (-10.90, 2.47)

-5.63 (-12.81, 1.53)

-2.39 (-5.05, .266)

-3.07 (-18.84, 12.68)

7.09 (-7.32, 21.5)

3.10 (-12.37, 18.58)

1.44 (.16, 2.71)

-6.80 (-14.40, .80)

-1.26 (-8.21, 5.69)

-6.82 (-8.12, 6.76)

-.31 (-.198, 1.35)

3.88 (-6.16, 13.92)

.66 (-8.65, 9.97)

.63 (-9.06, 10.33)

Gendera Female Male (Ref) Ageb a

Ethnicity

Aymara Non-Aymara (Ref) Marital statusa Without a partner With a partner (Ref) Occupationa No Yes (Ref) Educational levela C12 years \12 years (Ref) Family incomeb (US Dollars)

-.58 (-1.17, .01)

.63 (-2.91, 4.17)

.53 (-2.70, 3.76)

.31 (-3.16, 3.79)

Total PANSSb

2.07 (1.40, 2.74)

-8.56 (-12.55, -4.57)

-9.68 (-13.33, -603)

-12.40 (-16.311, -8.49)

DAI-10b

.89 (.28, 1.50)

.80 (-2.81, 4.42)

5.43 (2.03, 8.83)

1.74 (-1.82, 5.30)

Model R2

0.29

0.14

0.23

0.22

p

\0.01

\0.01

\0.01

\0.01

Statistically significant correlations are bolded Ref Reference group a

CI Confidence interval; unstandardized beta coefficient

b

Standardized beta coefficient

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.82 (.54, 1.09)

.43 (.18, .68)

Total PANSSb

DAI-10b

b

a

Standardized beta coefficient

Unstandardized beta coefficient

Ref Reference group

CI Confidence interval

Statistically significant correlations are bolded

0.17 \0.01

0.31

\0.01

p

.17 (.06, .28)

.26 (.14, .38)

-.05 (-.15, .05)

-.07 (-.37, .22)

.17 (-.05, .40)

-.28 (-.76, .19)

.04 (-.17, .26)

-.02 (-.14, .09)

.00 (-.24, .24)

Psychotics symptoms

R2

Model

-.17 (-.42, .07)

.04 (-.65, .73)

.80 (.27, 1.33)

-1.53 (-2.64, -.42)

.02 (-.48, .53)

-.40 (-.67, -.13)

.35 (-.20, .91)

Family incomeb (US Dollars)

\12 years (Ref)

C12 years

Educational levela

Yes (Ref)

No

Occupationa

With a partner (Ref)

Without a partner

Marital statusa

Non-Aymara (Ref)

Aymara

a

Ethnicity

Ageb

Male (Ref)

Female

Gendera

Psychological distress

0.08

0.08

.04 (-.03, .11)

.13 (.04, .21)

-.00 (-.07, .06)

-.05 (-.26, .14)

.10 (-.04, .26)

-.04 (-.37, .27)

.00 (-.14, .15)

.01 (-06, .09)

.00 (-.16, .16)

Intimate relationship

Regression coefficient (95 % CI)

\0.01

0.19

-.00 (-.11, .10)

.24 (.13, .36)

-.06 (-.16, .04)

.23 (-.06, .53)

.18 (-.04, .41)

-.08 (-.56, .38)

-.09 (-.31, .12)

-.17 (-.28, -.05)

.34 (.10, .58)

Treatment and medication side effects

Table 4 Linear regression model of 2-COM Checklist (patients’ type of needs)

0.04

0.09

-.01 (-.08, .04)

.13 (.05, .20)

.00 (-.06, .07)

-.00 (-.18, .18)

-.05 (-.19, .08)

-.13 (-.42, .15)

.03 (-.10, .16)

-.01 (-.08, .05)

.10 (-.04, .25)

Company

\0.01

0.13

.08 (.01, .15)

.08 (.00, .16)

-.08 (-.15, -.01)

.05 (-.13, .25)

-.05 (-.20, .09)

-.05 (-.36, .25)

-.04 (-.19, .09)

-.03 (-.10, .04)

.21 (.05, .36)

Money and benefits

0.02

0.10

.03 (-.07, .15)

.16 (.03, .28)

-.07 (-.19, .03)

-.27 (-.59, .03)

.17 (-.06, .41)

-.08 (-.58, .42)

-.10 (-.34, .12)

-.08 (-.21, .03)

.00 (-.24, .26)

Daytime activities

0.01

0.11

.04 (-.01, .10)

.12 (.06, .18)

-.00 (-.05, .05)

-.11 (-.27, .03)

-.00 (-.12, .11)

.03 (-.21, .28)

-.01 (-.12, .10)

.01 (-.04, .07)

.02 (-.10, .14)

Accommodation

\0.01

0.12

-.01 (-.07, .04)

.09 (.02, .15)

-.02 (-.08, .03)

-.10 (-.27, .06)

.05 (-.07, .18)

-.22 (-.49, .04)

.01 (-.11, .13)

.07 (.00, .13)

.00 (-.12, .14)

Transport

0.27

0.06

.01 (-.05, .09)

.09 (.01, .17)

-.03 (-.10, .04)

.04 (-.15, .25)

-.00 (-.16, .15)

.03 (-.29, .36)

.04 (-.11, .19)

.00 (-.07, .08)

-.14 (-.31, .01)

Sexual expression

\0.01

0.15

.10 (.03, .16)

-.08 (-.15, -.01)

-.06 (-.12, -00)

-.06 (-.23, .09)

.06 (-.06, .19)

-.00 (-.27, .25)

-.20 (-.32, -08)

-.04 (-.10, .02)

-.10 (-.23, .03)

Information about the treatment

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the DAI-10 were significantly associated with the total number of needs b = .89 (.28, 1.50) and Overall Medication b = 5.43 (2.03, 8.83). The regression analyses of the individual types of needs are presented in Table 4. As with the previous analyses, Aymara ethnicity was largely unrelated to patient needs, with the exception of a significant association with Information about Treatment (b = -.20, CI = -.32, -.08). As expected based on the analyses of total needs and patient satisfaction, PANSS score was the strongest predictor of each individual need. Higher PANSS scores were associated with more of each type of need except for Information about Treatment. The magnitude of the regression coefficients for PANSS was relatively small (from 0.09 to 0.16) for Intimate Relationships, Company, Money and Benefits, Daytime Activities, Accommodation, Transport, and Sexual Expression. It was moderate (from 0.24 to 0.26, which is one-quarter of a standard deviation) for Psychotic Symptoms and Treatment and Medication Side Effects. It was much larger for Psychological Distress (0.82). In addition to PANSS scores, DAI-10 scores were also associated with multiple types of needs: patients with more favorable attitudes towards medications had higher levels of Psychological Distress needs b = 43 (.18, .68); Psychotics Symptoms b = .17 (.06, .28); and needs in the areas of Money and Benefits b = .08 (.01, .15) and Information about Treatment b = .10 (.03, .16). Finally, with respect to total needs and patient satisfaction (Table 3) and individual types of needs (Table 4), there were several associations involving patient demographic factors. Females expressed more needs in the areas of Treatment and Medication Side Effects b = .34 (.10, .58) and Money and Benefits b = .21 (.05, .36). Older patients had fewer overall needs as well as fewer needs in the area of Psychological Distress (including difficulties in sleeping, memory, fatigue, feelings, worried) b = -.40 (-.67, -.13) and Treatment and Medication Side Effects b = -.17 (-.28, -.05) but more needs in Transportation b = .07 (.00, .13). Marital status and occupation had significant associations with needs related to Psychological Distress, where patients without a partner had fewer needs b = -1.53 (-2.64, -.42) and patients without employment outside home had more needs b = .80 (.27, 1.33).

Discussion The aim of study was to investigate the profile of needs of patients with schizophrenia belonging to an ethnic minority group, and to compare this profile to that of non-indigenous patients. The profile of the needs of the Aymara patients showed needs mainly in the area of Psychological Distress (showing the importance of subjective aspects of quality of

life) and Psychotic Symptoms. To a lesser extent, they also showed needs in relation to Information on the Treatment and Effects of Medication and Daytime Activities. However, ethnic minority profile did not differ from the profile of the group of non-indigenous patients. Similarly, there was no significant ethnic difference in the total number of needs and the global satisfaction scales. The absence of ethnic differences in the number and type of needs could indicate that Aymara patients have been integrated and treated in the same way as non-Aymara patients. This would correspond to efforts made by the mental health systems to avoid discrimination in approaching these indigenous patients [48, 49]. On the Information about Treatment subscale, Aymara patients reported fewer needs compared to non-Aymara patients; this may indicate that clinicians are investing more time to explain to patients and family members information about the disorder. Most of the types of needs presented by the patients of this study are consistent with the findings of several other studies [5, 7, 9, 10]. The average number of needs of these patients (as measured by 2-COM Checklist) was lower than the average shown by patients in European countries. Culture differences might explain why patients reported fewer needs in Latin American than in developed countries, drawing a parallel between needs and patient satisfaction, which is closely dependent on cultural background and cultural aspects of the health-care system [50–52]. It is notable that European patients had a lower level of satisfaction in the areas of feeling, medication and coping than in Latin American patients [40]. In our study, it is possible that the lack of funding for the mental health care system tends to moderate the patients’ needs which are subsequently considered part of non-medical issues. In particular, specific coping strategies could address some needs such as family cohesion or religious beliefs recognized to have be a positive influence in South America [53–55]. We incorporated in our analysis both clinical severity (measured with PANSS) and attitude toward medication (measured with DAI-10) to respond to previous studies showing significant relationship between these two measurements [5, 7, 56]. The results of our study show that the most important predictor of needs is the severity of the disorder. Thus, patients with greater symptom severity reported a higher number of needs. Patients with a more favorable attitude toward medication scored higher on the subscales of Psychological Distress, Psychotic Symptoms, Money and Benefits, and Treatment Information. It is possible that these patients are more aware of their needs than those with a less favorable attitude toward medication, who are probably less adherent to drug treatment. In the same way and in the same direction as previous studies [9, 14, 57], other socio-demographic variables are related to

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patients’ needs. Patients with higher family income reported fewer needs regarding Money and Benefits and Treatment information. It is likely that patients with a more advantageous economic situation have greater access to information and have better support networks. Also, patients without occupation outside the home reported higher levels of Psychological Distress. It is known that unemployment increases patients need and is associated with lower quality of life [14, 15]. Marital status was largely unrelated to patient needs, with the exception that patients without a partner tend to have lower levels of Psychological Distress. Literature shows that the company of another person generally increases the level of psychological well-being [58–60]. However in this context, being part of a couple may increase the level of psychological burden. In relation to age, elderly patients have fewer needs and fewer requirements related to the Treatment and Side Effects from Medication and in the area of Psychological Distress. They may have made a kind of adaptation to the disorder. Studies have shown that older patients have lower risk of suicide [61]. However, one must note that older patients have a greater number of needs in the area of Transport. Women have more needs than men in relation to Treatment and Effects of Medication and Money and Benefits. Women patients in Latin America generally tend to depend economically on either parents or partners, because few of them have jobs. This could reduce their quality of life and increase their needs. The low quality of life in women may also be indicators of general healthrelated, showing that these women have low access to health services and that even increase their cancer mortality [62]. In analyses of the scales related to satisfaction (measured by 2-COM Checklist), symptom severity was the most important predictor. Thus, patients with greater severity reported a lower level of satisfaction with their Overall Feelings, Medication and Coping. It is known that satisfaction is related to the perception that patients have about their treatment and drug adherence [22, 63]. On the other hand, and as expected, patients with better attitude toward medication, will have greater satisfaction on overall medication. The results presented in this study have a number of implications. First, the most prevalent needs in both populations (Aymara and no-Aymara) involve Psychological Distress and Psychotic Symptoms. Clinicians need to be alert to the control of symptoms and also to the systematic assessment of Psychological Distress using validated measures of quality of life [64–66]. Finally, socio-demographic variables also have an important role, and socio-economic circumstances should

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be taken into account when assessing these patients. This reinforces the need for comprehensive treatment, so special attention should be paid to both objective and subjective indicators of life quality [67]. The study has several limitations. First, we cannot be sure that the absence of differences between Aymara and non-Aymara patients was not due to aspects of sample selection. Indeed, we compared the needs of Aymara and non-Aymara patients receiving treatment in the same mental health facilities. Our study suggests that Aymara patients in these facilities have the same level of needs than non-Aymara patients. But we cannot extrapolate our findings to all the Aymara, and especially not to those for whom the problem of access to care is the main problem. Many of these individuals still reside in the rural Highlands. Second, our choosing patients who have a primary caregiver may limit the generalizability of our findings. We did not consider isolated patients without family, who probably are a population with higher needs. Future studies should consider patients who live alone. However, our sample of Aymara is likely to be representative of the Aymara schizophrenia patients in our countries, because most Aymara go to public health services and not to private physicians. In conclusion the findings of this study show that the profile of the needs of schizophrenic Aymara patients does not differ from that of non-Aymara patients, and that in both groups it is necessary that the treatment primarily address symptom management and the subjective aspects of quality of life to meet the needs of patients and increase their satisfaction. Acknowledgments This research was funded by CONICYT and BECAS-CHILE Postdoctorado en el Extranjero (number 74140004) and also by the Convenio de Desempen˜o UTA-MINEDUC. We thank Felipe Ponce and Jorge Escudero for their assistance in the study and also the following people and facilities: Dr. Hugo Sa´nchez, Dr. Ricardo Alvites, Dr. Andre´s Collado, Gladys Coaquira, and Vilma Liendo; and we extend our special thanks to Dr. Jose´ Revilla from Hipo´lito Unanue Hospital in Tacna, Peru´, Dr. Marcio Soto from Arequipa, Peru´, Dr. Fernando Garitano, Dr. Mauricio Peredo, and Dra. Mabel Romero from Centro de Rehabilitacio´n y Salud Mental San Juan de Dios, and the Director of Hospital Psiquia´trico de la Caja Nacional de Salud from La Paz, Bolivia. We also thank Dra. Magdalena Gardilcic, Ester Lo´pez, and Alejandra Lagos from Servicio de Salud de Arica, Chile, and extend our special thanks to all the patients and caregivers who participated in this study.

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