Zdrav Var 2007; 46: 9-17 9 PSYCHIATRIC REHABILITATION IN THE HOSPITAL SETTING -ONE YEAR FOLLOW-UP OF PATIENTS WITH SCHIZOPHRENIA PSIHOSOCIALNA REHABILITACIJA V BOLNIŠNICI - ENOLETNO SPREMLJANJE BOLNIKOV S SHIZOFRENIJO Vesna Švab1, Urban Groleger1 Prispelo: 22. 8. 2006 - Sprejeto: 14. 11. 2006 Original scientific article UDC 616.895.8 Abstract Background: In recent years, the majority of long-term hospitalized patients with schizophrenia, who nad no relapse during standard psychiatric management, were discharged from the Ljubljana Psychiatric Hospital because of increased number of admissions and limited hospitalization length. To ensure safest possible discharge, a hospital rehabilitation and planned discharge programme has been set up for patients requiring long-term čare and frequent rehospitalizations Methods: Forty-one (41) long-term and frequently admitted patients with schizophrenia were included in the study One-year follovv up involved monitoring of their needs, clinical status, globa) functioning and quality of life. A rehabilitation programme was designed and tailored to the characteristics and needs of the patients studied. In addition to standard psychiatric treatment, detailed Information on the disease was given to the patients and their families. They were included in social skills training, and a management plan was prepared for each of them. Results: Within one year, negative symptoms of the disease were reduced significantly and the patients became more satisfied with the quality of their life. Most of their social needs, hovvever, could not be addressed . Conclusions: lndividually adjusted programmes of hospital psychiatric rehabilitation for patients suffering from most resistant forms of schizophrenia, and inclusion of their family or relatives in their rehabilitation significantly improved disease outcomes in these patients. Key words: schizophrenia, hospital-based psychiatric rehabilitation, patient management planning Izvirni znanstveni članek UDK 616.895.8 Izvleček Izhodišča: V zadnjem času so zaradi povečanega števila sprejemov in omejene dobe hospitalizacije s Psihiatrične klinike Ljubljana odpustili večino dolgotrajno hospitaliziranih bolnikov s shizofrenijo, ki so bili med standardnim psihiatričnim zdravljenjem brez remisij. Za te bolnike in za vse tiste, ki so večkrat ponovno hospitalizirani, so uvedli program bolnišnične psihosocialne rehabilitacije in načrtovanega odpusta, da bi jim tako zagotovili čimbolj varen povratek domov. Metode: V študijo je bilo zajetih 41 dolgotrajno in večkrat hospitaliziranih bolnikov s shizofrenijo. Eno leto so spremljali njihove potrebe, klinično stanje, vsakodnevno funkcioniranje in kakovost življenja. Program rehabilitacije je bil oblikovan glede na lastnosti in potrebe bolnikov. Standardna psihiatrična obravnava je bila dopolnjena še s podrobnimi pojasnili o bolezni za bolnike in njihove družine; potekalo je učenje socialnih veščin, za vsakega posameznika pa so pripravili tudi tudi načrt obravnave. Rezultati: Negativni simptomi bolezni so se v enem letu bisteno zmanjšali in bolniki so bili bolj zadovoljni s kakovostjo svojega življenja. Vendar pa večine njihovih socialnih potreb ni bilo mogoče zadovoljiti. 1University Psychiatric Hospital, Studenec 48, 1260 Ljubljana Correspondence to: e-mail: vesna.svab@psih-klinika.si 10 Zdrav Var 2007; 46 Zaklju~ki: Individualni prilagojeni programi bolni{ni~ne psihosocialne rehabilitacije bolnikov z najbolj trdovratno obliko shizofrenije in vklju~evanje njihovih svojcev v obravnavo pomembno prispevajo k bolj{emu izidu zdravljenja teh bolnikov. Klju~ne besede: shizofrenija, bolni{ni~na psihiatri~na rehabilitacija, na~rtovanje obravnave 1 Introduction In Slovenia, psychiatric treatment is provided mainly in psychiatric hospitals and outpatient clinics, which are mostly located vvithin these hospitals. The number of fully private psychiatric clinics and clinics holding contract with NHS has been increasing, yet they offer treatment to a small proportion of psychiatric patients only, and to very few individuals with schizophrenia. In 2003, the Ljubljana Psychiatric Hospital (PH) had 30 long-term hospitalized patients (hospitalized for over one year), the majority of whom were cared for at the Rehabilitation Unit. The number of PH hospital beds was reduced to the current European level in the 1970s. Most chronic patients were discharged home to their families, and some of them were admitted to nursing homes and asylums; but no disease outcome analysis was done. The last group of long-term hospitalized patients was discharged in the past five years. The PH Rehabilitation Unit undertook a study to assess the characteristics and needs of this group of patients, including individuals who were subject to frequent re-hospitalizations (more than twice a year). Management and rehabilitation plans were prepared for ali of them. Treatment and rehabilitation plans are based on the assessment of patient needs, which allovvs for effective interventions (1). The most commonly reported needs include the need for reducing psychological distress, the need for information about the disease and the need for socializing (2). They can be addressed by the use standard psychiatric rehabilitation methods (3). These methods comprise education about the disease, social skills training and other therapeutic approaches which make it possible for patients to participate in the treatment process and take maximum possible control over their lives (4, 5, 6). Hospital programmes which employ these methods are reported from the U.S., where higher levels of patient satisfaction and better communication with other people have been achieved through their use (7). The PH has implemented individualized management planning, education of patients and their relatives and social skills training in groups . Since PH is the leading institution of its kind in Slovenia, the study was undertaken to evaluate the situation in Slovenia as a whole. 2 Subjects and methods 2.1 Subjects In 2003, 41 patients with resistant schizophrenia who were hospitalized for a long tirne, or were frequently re-admitted, were included in the inpatient psychiatric rehabilitation programme at the PH Rehabilitation Unit . The inclusion criteria included: diagnosis of schizophrenia and schizoaffective disorder (F20 and F25 according to ICD 10), age of 20 to 50 years, more than one hospitalization a year over the past three years, or hospitalization lasting more than one year, and participation of family members or other relatives in the programme. 2.2 Methods General data on each patienfs disease were acquired through a semi-structured intervievv. The follovving assessment methods were used: 1. Patient needs were assessed using the Cambervvell Assessment of Need (CAN) questionnaire (8). The intervievvers and the patients explored 22 areas of the patienfs life and rated them on a scale of 0 to 2 (0 - no difficulties, 1 - no difficulties due to intervention , 2 - serious difficulties). 2. For assessing the patients’ living/residential situation and their level of satisfaction in various areas of life, the Lehman’s Quality of Life intervievv (9)was used. It is intended for collecting various patient data in a form of a structured intervievv, and includes a 1-7 scale for satisfaction self-assessment for each of the domains listed 3. The presence and severity of the symptoms of schizophrenia vvere assessed using the Positive and Negative Syndrome Scale (PANSS) (10). This questionnaire is used by the intervievver to assesses and evaluate 30 symptoms on a 1-7 rating scale (1=not present, 7 =most severe). The results obtained are a sum total of ali scores and a sum of three subscores: positive, negative and general (10). Švab V., Groleger U. Psychiatric rehabilitation in hospital setting - one year follow-up of patients with schizophrenia 11 The intervievvers need appropriate training in the use of this questionnaire. 4. The severity of clinical status was assessed using the Clinical Global Impression (CGI) scale (11). This simple scale is often used in psychiatry to help intervievvers assess the overall current severitv of the disease on the basis of disease svmptoms and signs. These are assessed from 1- “not iN” to 7-“among the most severelv ill patients”. Appropriate training is required for the use of this scale. 5. Patient functioning vvas assessed using the Global Assessment Scale (GAS) (12), vvhich helps intervievvers rate global patient functioning on the basis of patient and disease data on a scale from 1 (very poor) to 100 (very good). The instructions include a detailed description of functioning of the patient affected by the disease (classes 1-10, 11-20, 21-30 etc), as vvell as the scoring method vvithin an individual class (12). The use of this scale requires appropriate training. Ali intervievversvvere trained in the use of these assessment tools and achieved comparable score results. Intervievvers did not participate in the rehabilitation programme or in the therapeutic vvork vvith patients. The rehabilitation programme vvas carried out through eight consecutive group meetings. Patients and their family /relatives attending these meetings vvere separately informed about signs and symptoms of the disease, forms of treatment and rehabilitation, and role of familv/relatives in the recovery process. The management and rehabilitation plan vvas designed on the basis of needs assessed by patients and staff at vvork group meetings. The staff vvas explained the principles and methods of psychiatric rehabilitation, vvhich increased the level of patient participation in the management process and fostered staff motivation. The team vvas comprised of external associates (social vvorkers, members of basic health čare teams and experts from nongovernmental organisations) vvho provided for the support and čare of these patients after discharge, and offered support to their family and relatives. Ali patients vvere evaluated prior to their inclusion in the programme (E1), and at 12 months after the inclusion (E2), irrespective of vvhether they vvere stili in the hospital or had been discharged to home čare in the meantime. During hospitalization, implementation of the rehabilitation programme vvas verified on a weekly basis and later on a monthly basis. 2.3 Statistical analysis Since ali patients had received standard psychiatric management at the Department of Clinical Psychiatry at the Psychiatric Hospital before their inclusion in the hospital-based psychiatric rehabilitation programme, data collected prior to inclusion vvere used as control values for later evaluations. The statistical method employed for the evaluation of paired samples (comparison of pre-and post-rehabilitation values for the same subjects) vvas therefore used in the analysis (13). The confidence interval vvas set to 95%. AN the variables used in statistical analysis vvere tested for normality of distribution. Although some of them (PANSS, CGI, GAS) are usually evaluated using methods for numerical variables, their distribution vvas not normal, so nonparametric statistical methods vvere applied. Median and average ranks vvere used as a measure of central tendency and differences betvveen the observations. The Wilcoxon’s signed ranks test vvas used for comparative statistical analysis (13). AN differences vvere considered statistically significant at p<0.05. Data vvere analyzed using the SPSS statistical package for VVindovvs (Version 12.0, SPSS Inc., Chicago, IL, USA). The analysis vvas performed at the Ljubljana Psychiatric Clinic by the authors. 2. 4 Ethical aspects of the study AH patients agreed to participate in the study and signed an informed consent form. The study vvas also approved by the Medical Ethics Committee of the Republic of Slovenia. 3 Results 3. 1 Sample description Of the 41 patients included in the study, 20 (48.8%) vvere men and 21 (51.2%) vvomen. Their average age vvas 40.4±9.4 years. A little under one half of the patients vvere married and lived vvith their families, less than one third lived alone, and less than a third lived vvith their parents (slightly over one half of the patients had never been married). Social netvvork of 34 patients (82.9%) consisted only of close family members, and only one half socialized vvith other people outside the family.Twenty-five patients vvere the best income earners in the family, yet their income amounted to less than half the average national 12 Zdrav Var 2007; 46 Table 1. Needs assessment using the Camberwell Assessment of Need (CAN) method (11) by patients and observers at inclusion (E1, N=41) and at 12 months after inclusion (E2, N=41) expressed as median (E1 and E2), difference positive or negative average ranks (rank) and statistical significance (p) according to Wilcoxon’s signed ranks test. Tabela 1. Potrebe kot so jih z metodo CAN (Camberwell Assessment of Need) (11) ocenili bolniki in opazovalci in sicer ob vklju~itvi (E1, N=41) in 12 mesecev po vklju~itvi v program (E2, N=41), kot mediana (E1 in E2), razlike med pozitivnimi in negativnimi povpre~nimi rangi in statisti~na signifikantnost (p) (Wilcoxonov test predzna~enih rangov). Švab V., Groleger U. Psychiatric rehabilitation in hospital setting - one year follow-up of patients with schizophrenia 13 income. Twenty-six patients were retired due to disability, 12 had quitted education and 18 nad lost their job because of the disease. Thirty-three patients (80.5%) were diagnosed with schizophrenia, and the remaining eight (19.5%) with schizoaffective disorder. Nineteen patients (46.3%) were repeatedly hospitalized, and 22 (53.6%) were admitted to hospital for long-term (permanent) čare. Their mean hospital stay in the three years preceding their inclusion in the rehabilitation programme was 48 weeks. AN patients were on regular antipsychotic medication; 19 (46.3%) received standard antipsychotics, 10 (24.4%) atypical antipsychotic medication and 12 (29.3%) a combination of two types of antipsychotics. 3. 2 Assessment of patient needs The results of patient needs assessment are shown in Tables 1 and 2. At one year after inclusion in the study the patients reported fewer needs related to control of disease signs, information about the disease and benefits, to which they were entitled. The observers noticed that at one year after inclusion the patients had fewer needs regarding control of symptoms, use of medications, education, transport and benefits (Table 1). In addition, CAN was analyzed in terms of total sum of ali expressed needs and ali unmet needs (number of ali CAN items rated as “2”). There was no statistically significant difference betvveen these summary variables at the end of the study and those prior to inclusion, although the trend tovvards improvement was observed (Table 2). Observers reported a higher total number of needs and unmet needs than did the patients, both at the beginning of the study and at its end (Table 2). The differences were highly significant for the total number of needs at inclusion (p=0.000) and at the end of the study (p=0.000), which is also true of the differences in the number of unmet needs (p=0.000 and p=0.001 respectively). 3. 3 Patient satisfaction The results of analysis of patient satisfaction in various areas of life are shown in Table 3. A trend tovvards improvement in patients satisfaction vvas observed in ali areas, although statistical significance vvas found only for patient satisfaction vvith life in general and their overall satisfaction at the end of the study and at inclusion. Taking into account less strict criteria (p<0.10), satisfaction in tvvo more areas shovved significant improvement (spare tirne and social netvvork). Table 2. Patient needs assessed by the Camberwell Assessment of Need (CAN) method (11) prior to (E1, N=41) and one year after inclusion in the programme (E2, N=41) as median (E1 and E2), difference positive or negative average ranks (rank) and statistical significance (p) according to Wilcoxon’s signed ranks test. Tabela 2. Ocena potreb bolnikov z metodo CAN (Camberwell Assessment of Need (11) pred (E1,N=41) in eno leto po vklju~itvi v program (E2,N=41), kot mediana (E1 in E2) razlike med pozitivnimi in negativnimi povpre~nimi rangi in statisti~na signifikantnost (Wocoxonov test predzna~nih rangov). 14 Zdrav Var 2007; 46 Table 3. Subjective assessment of quality of life using the Lehman’s Quality of Life interview (12) prior to (E1) and one year after inclusion in the programme (E2), as number of patients with assessment (N), median (E1 and E2), difference positive or negative average ranks (rank) and statistical significance (p) by the Wilcoxon’s signed ranks test. Tabela 3. Subjektivna ocena kakovosti življenja pridobljena z vprašalnikom Lehmann’s Quality of Life(12) pred (E1) in eno leto po vključitvi v program (E2), število bolnikov z oceno (N), mediana (E1 in E2) razlike med pozitivnimi in negativnimi povprečnimi rangi in statistična signifikantnost (p) določena z Wilcoxonovim testom predznačenih rangov Legend: * p<0.05; **p<0.10 Švab V., Groleger U. Psychiatric rehabilitation in hospital setting - one year follow-up of patients with schizophrenia 15 3. 4 Disease outcome The results of analysis of clinical outcome are shown in Table 4. The observed improvement is statistically significant in nearly ali measures but PANSS positive. 4 Discussion The study undertaken to assess the effectiveness of hospital psychiatric rehabilitation in Slovenia (based on the programme conducted at the Rehabilitation Unit, PH Ljubljana, Slovenia) shovved good overall results of hospital psychiatric rehabilitation. The results were even more encouraging because the study included patients with refractory forms of schizophrenia, who were socially isolated and had contact only with their close family members, and who had to get by on very modest financial resources. During rehabilitation, ali patients and their relatives were included in educational programmes, and in addition, social skills training was designed for the patients. The problem identified at the end of one-year rehabilitation was that none of the methods used could improve the patients’ living conditions, which certainly reduced the effectiveness of their rehabilitation. Their social isolation is a result of their scarce social netvvork and dire financial situation. These factors undoubtedly affect the prognosis and course of the disease. Isolation is also a result of current legislative provisions and low chance of employment or adjusted employment for this group. To assess the influence of social factors on the variables measured, we would have had to evaluate a group of patients with schizophrenia, included in social and employment programmes outside hospital which help improve their quality of life. The analysis of needs perceived by the patients shows that most of these needs are related to the organization of daily activities, control of psychotic symptoms and psychological distress, as well as to the improvement of social relationships and financial position. Upon the completion of the rehabilitation programme, these patients had fewer psychotic symptoms; were better informed about the disease , were able to exercise some of their rights and they had received the benefits to which they were entitled. Improvement, though not statistically significant, was also established in the follovving areas: regular nutrition (which belongs to the scope of hospital management), organization of daily activities and need for education. Differences betvveen subjective and objective assessments of patient needs were found. Observers rated the problems in most domains of patients’ lives as more serious than did the patients, the only exception being financial needs, which the patients identified as a more serious problem. The difference betvveen objective and subjective assessment of patient needs has also been reported in literature (14) and basically means that this group of patients has lovv demands and expectations, and that Table 4. Evaluation of effectiveness of rehabilitation. Clinical outcome at inclusion (E1, N=41) and at 12 months (E2, N=41), median (E1 and E2), difference positive or negative average ranks (rank) and statistical significance (p) using the Wilcoxon’s signed ranks test. Tabela 4. Ocena uspe{nosti rehabilitacije. Klini~ni izid ob vklju~itvi (E1, N=41) in 12 mesecev kasneje (E2, N=41), kot mediana (E1 in E2), razlike med pozitivnimi in negativnimi povpre~nimi rangi in statisti~na signifikantnost (p) (Wilcoxonov test predzna~enih rangov). LEGEND: ocenjevalne lestvice : GAS = Global Assessment Scale, CGI = Clinical Global Impression, PANSS = Positive and Negative Syndrome Scale, total and subscores: positive, negative, total 16 Zdrav Var 2007; 46 they tend to deny their needs although these may seem essential to objective observers. During the study, the level of patients’ satisfaction with their lives in general increased, but remained mostly unchanged concerning their social and financial position, which could not be changed by none of the hospital rehabilitation methods usd. The education of patients and their relatives did not improve the quality of their family life. Hospitalization did not expand their social netvvork or increase their objectively small chances (due to lack of financial resources) of spending their spare tirne in a quality manner. There was also an increase in their satisfaction with activities they undertook together with other people, which is attributable to their everyday socialization at the wards. Hovvever, over this one-year period of rehabilitation there were significant changes in the clinical presentation of the disease, which improved primarily in terms of the negative syndrome (impoverished speech, social withdrawal, emotional withdrawal). This difference cannot be attributed to medical treatment, as these patients received the same medications throughout their participation in this programme, and there were only minimal variations in the doses given in accordance with the course of the disease. Clinical improvement is in accord with the results of other studies on the effectiveness of education and social skills training (15). 4. 1 Study limitations There are some dravvbacks to the study. It did not include important measures of disease outcome, such as family burden, patients’ physical health status, their satisfaction with community services and cost-effectiveness of the measures instituted. Follow-up of these patients was too short to detect significant changes in their functioning, as these require longer observation times to evolve. Community stay data were not evaluated for ali patients, because not ali of them were discharged during the study This is a shortcoming because community-based forms of management have a proven effect on variables related to quality of life. The number of patients was relatively small, and the validity of the research results was further reduced by the absence of a control group. 4. 2 Guidelines for future research In spite of its dravvbacks, the study of effectiveness of planned discharge in patients vvith resistant forms of schizophrenia is the first research report on the success of psychiatric rehabilitation in Slovenia. This population group vvas overlooked by previous research except by studies exploring the effects of psychopharmaceuticals. Studies of successful forms of treatment and rehabilitation of this patient population should be conducted also outside hospitals, because patients suffering from schizophrenia are mostly cared for in the community and in their natural environment. The responsibility for continued and high-quality management is taken over by those providing community-based treatment and rehabilitation services. Study results have shovvn that community-based čare of these patients has significant advantages over hospital-only management(16). 5 Conclusion Management planning and hospital psychiatric rehabilitation methods used in a group of patients vvith chronic resistant schizophrenia improved clinical picture of the disease and allovved for their discharge from the hospital. The level of patient satisfaction vvith life in general also increased in the course of treatment. Rehabilitation methods, social skills training and individualized discharge plan proved successful in the management of these socially deprived patients , suffering from the most severe forms of schizophrenia. Acknovvledgements This study vvas financed by the Ministn/ of Science and Technology. The data vvere compiled by the medical students Katja Kogovšek and Analina Vodušek, vvhose help is gratefully acknovvledged. References 1. Revnolds A, Thornicroft G. Managing Mental Health Services. London 1999. Open Universitv Press: 11-9. 2. VViersma D, van Busschbach, J. Are needs and satisfaction of čare associated vvith quality of life? Eur Arch Psychiatry Clin Neurosci 2001; 251: 239-46. 3. van Busschbach J, VViersma D. Does rehabilitation meet the needs of čare and improve the quality of life of patient vvith schizophrenia or other chronic mental disorders? Communitv Mental Health Journal 2002; 38(1): 61-9. 4. Mueser KT, Drake RE, Bond GR. 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