The present paper is based on a subset study on QOL conducted under the umbrella of the European Research Group On Schizophrenia (ERGOS).
In the main study, the patients came from a network of researchers and clinicians in 10 centres, from seven countries: France (with centres in Lille, Lyon, La Verrière and St Etienne), Germany (Mannheim), Ireland (Dublin), the Netherlands (Groningen), Portugal (Lisbon) and Spain (Granada). The study aimed to describe and compare the psychiatric care for a group of patients with chronic schizophrenia in a circumscribed geographical area in each participating country from Southern, Central and Northern Europe . This one-year prospective cohort study included patients with a clinical lifetime diagnosis of schizophrenia according to ICD-10 (F20) diagnostic criteria for research , aged between 18 and 65 years old and who had at least one contact with mental health services during the year before inclusion. The selection of patients was conducted on the basis of the clinical diagnosis, which had to be confirmed by the use of a standardized interview schedule for present state: the Schedules for Clinical Assessment in Neuropsychiatry (SCAN) version 1.0 , which allowed for an assessment of lifetime representative episodes of schizophrenia. Patients were eligible for the study independently of whether they were receiving in- or out-patient care.
The results presented here concern a subset of seven centres from four countries: France, Portugal, Ireland and Spain, which agreed to collect additional data on QOL. As for the main study, the baseline assessment took place as soon as possible after a randomised selection from the list of eligible patients (those who had a lifelong diagnostic of schizophrenia assessed by SCAN) and after written informed consent following ethical committee recommendations. Finally, 419 patients constituted the target population (34 initially selected were not contacted because the required number was completed in that centre). 38 (9.0%) could not be contacted any more after selection, and 45 (10.7%) refused to participate in the study. Then, another 29, who participated in the study, did not complete the QOL assessment. So, the final QOL assessment concerned 339 patients at baseline (80.9% participation rate). At one-year follow-up, Spain could not participate in the QOL assessment, so the remaining eligible patients were 263 and only 219 agreed to take part (83.3% of the baseline population).
There are many QOL measures, which can be divided into generic and non generic. Since severe disorders are concerned we thought that a specific measure was needed and we selected the Satisfaction with Life Domains Scale (SLDS) [20, 21]. This scale has the advantage of being one of the shortest QOL measures covering a variety of areas whilst allowing for a global score.
The SLDS was initially developed to evaluate the impact of the Community Support Program in New York State on the QOL of chronically mentally ill patients. It is a self-report scale administered by a trained interviewer and takes approximately 10 minutes to administer. Its individual items cover 15 areas of everyday life: satisfaction with housing, neighbourhood, food, clothing, health, people lived with, friends, family, relations with other people, work/day schedule, spare time, leisure time, services and facilities in the area, economic situation, and place lived in now compared with state hospital. Respondents chose for each area one face from among seven proposed, corresponding to different emotional states. The faces varied from very satisfied and happy to not satisfied at all and sad. These can be summed into a total life satisfaction score.
The SLDS has been extensively used with severe psychiatric patients in Belgium, Quebec and France. The French translation was available to us through a validation study conducted in Quebec . This study allowed ensuring test-retest reliability, internal consistencies and discriminating power when translated in another language. On the other hand, the Spanish and Portuguese translations were done by bilingual experts from this field.
It has to be noted that the initial 15-item version of the SLDS was modified by C. Mercier and P. Corten who deleted 1 item (i.e., place lived in now compared with state hospital) and added 6 items covering love life, freedom and empowerment aspects. This modified version (20 items) was used by all centres except the Irish ones, which used the original 15-item version. Consequently, all results will be presented on the 14 common items for all centres, plus on the 6 added questions except for Dublin.
For the patients who did not answer some of the items of the QOL questionnaire, we attributed the value 4 (medium value) to the items in question in order to be able to compute the global score. Another solution would have been to use the mean or median value found for each item, however significance tests revealed that results would not have differed. For individual item comparisons, we are producing the number of patients by item.
The information concerning sociodemographic variables was collected by the Past History and Sociodemographic Description schedule (PHSD) , which provides information on the level of education, occupational situation, where the patient lives and information on his/her family. Given the variability in educational systems and standards of living across European countries, we had to slightly modify this instrument in order to harmonise the response scales for educational level, professional training and level of income (level of income and existence of a mandatory minimal wage, housing, social benefit based or regular income, variation in the level of attribution of social benefits for patients with schizophrenia according to the different national regulations).
The presence of a significant problem in various clinical and social domains was assessed at entry and followed up through the Needs For Care Assessment Schedule (NFCAS), a standardised procedure created by Brewin [24, 25], which was designed to improve care planning for such patients and has been extensively used in various circumstances [26–28]. A specific inter-rater reliability study was set up to ensure that the standardised training procedures succeeded in obtaining an acceptable level of comparability across countries .
The interview also covered 11 areas of clinical functioning (psychotic symptoms, negative symptoms, side effects of medication, neurotic symptoms, dementia, physical problems, dangerous behaviour, socially embarrassing behaviour, distress, alcohol and drug use) and 11 areas of social functioning (personal hygiene, shopping, getting meals, household chores, use of public transport, use of public amenities, education, occupation, communication, finances and management of own affairs).