Quality of life and illness perception in working and sick-listed chronic RSI patients Objective To study differences between working and sick-listed chronic repetitive strain injury -LRB- RSI -RRB- patients in the Netherlands with respect to indices of quality of life and illness perception . Introduction The growing global concerns in the 1990s about the effects of work-related upper extremity musculoskeletal disorders -LRB- i.e. Repetitive Strain Injuries , or RSI -RRB- on the health and well-being of workers , and about the economic and social impact of these conditions , has led to a variety of research on the international level -LRB- e.g. Sluiter et al. 2001 ; Lee et al. 2005 ; Bongers et al. 2006 ; Waters et al. 2007 -RRB- , and in the Netherlands governmental actions , new rules , regulations , and professional guidelines were developed -LRB- Sluiter et al. 2001 ; Douwes et al. 2001 ; NVAB 2003 ; Blatter et al. 2004 -RRB- . In addition , the epidemiological studies begun in the 1990s that tried to unravel the multifactorial predisposing and precipitating factors of RSI complaints managed to find several significant factors , albeit the perceived relationships were neither very pronounced nor very specific -LRB- e.g. Bongers et al. 2006 -RRB- . In contrast to the recently expressed concerns about multidisciplinary curative actions in the US -LRB- Feuerstein and Harrington 2006 -RRB- , many preventive ergonomic actions have been introduced in high risk sectors in the Netherlands during the `` Covenant '' periods . To prevent long-term work disability , occupational physicians have learned to start taking action as early as three weeks after onset of sickness absence for RSI-like complaints . Long-term sickness absence because of RSI-complaints has decreased in the past few years -LRB- Bongers et al. 2006 -RRB- . Moreover , when workers ' sickness absence is of very long duration , some employers invest in their workers ' health by paying for intensive multidisciplinary treatments aimed at a return to work -LRB- Meijer et al. 2006 -RRB- . Despite all these changes , the number of members in , for example , the Dutch RSI Patients ' Association doubled during the last seven years , and prevalences of over 25 % for upper extremity complaints are still found ; rates are comparable to other European countries -LRB- Bongers et al. 2006 -RRB- . All medical professionals deal with patient groups that have medical disorders that may be cared for but not cured with additional costs -LRB- Meerding et al. 1998 -RRB- , and also therefore , increasing interest in the patient 's perspectives has grown in the last decade . Perspectives about what are important points of interest to deal with in treatment and knowledge about their quality of life both reveal interesting information for specific focus in treatment -LRB- Gafni et al. 1998 -RRB- . Illness perception may be distorted more in work-related disorders compared to other diseases when the ability to return and to keep on working in the job that may have caused the health complaints is questioned . Up to now , only little or even no information was available on chronic RSI patients ' quality of life and illness representation -LRB- Picavet and Hoeymans , 2004 ; Broadbent et al. 2006 -RRB- . Therefore , in 2005 a study that aimed to describe the working vs. sick-listed RSI patients ' perspectives in the Netherlands with respect to their complaints , quality of life , and illness perception was begun in a large group of chronic RSI patients . Methods Population Patients with RSI were identified by approaching all 3,250 members of the Dutch RSI patients ' association . The Dutch RSI patient association was started 11 years ago . In the Netherlands , patients with the same disease are allowed and administratively helped by Governmental Services to join and start an association . Their goal is to gather and spread relevant information to all patients with the same disease in The Netherlands . In addition , their input in sickness-related policy matters is increasingly asked for . Members that were registered in March 2005 were eligible for inclusion . This group defined the study population in this cross-sectional study . Data collection In April 2005 questionnaires were sent by the secretariat of the RSI patients ' association to the home addresses of all their current members . An accompanying letter was included from the patients ' association . Patients were requested to complete a set of self-report measures . Return envelopes that were addressed directly to the research institute were included as well . One week later , a reminder letter was sent to all members . Data collection was stopped four weeks after sending the reminder . A total of 1,185 -LRB- 36 % -RRB- questionnaires were returned by mail . Outcome measurements Quality of life was assessed in three ways : Through seven subscales of the Dutch version of the 36-item Short Form Health Survey -LRB- Ware and Sherbourne 1992 ; Aronson et al. 1998 -RRB- : physical role functioning , emotional role functioning , social functioning , pain , mental health , vitality , and physical functioning . Scores ranged between 0 and 100 -LRB- higher scores indicated better functioning -RRB- . Visual analogue scales -LRB- VAS -RRB- -LRB- Streiner and Norman 2003 -RRB- were used to rate the level of present general quality of life with respect to health -LRB- 0 = the worst imaginable ; 10 = the best imaginable -RRB- and to rate the level , retrospectively , of the estimated general quality of life with respect to health before the RSI complaints started -LRB- 0 = the worst imaginable ; 10 = the best imaginable -RRB- . The patients were also asked to report on their current work-ability by means of an 11-point scale -LRB- ranging from 0 for the least ability imaginable to the participant 's own maximum level of 10 , the highest level imaginable -RRB- -LRB- e.g. Croon et al. 2005 -RRB- . The brief illness perception questionnaire -LRB- IPQ-B -RRB- -LRB- Broadbent et al. 2006 -RRB- assessed cognitive illness perception through items on illness `` consequences '' -LRB- how much does your illness affect your life ? -RRB- , `` identity '' -LRB- how much do you experience symptoms from your illness ? -RRB- , `` timeline '' -LRB- how long do you think your illness will continue ? -RRB- , `` personal control '' -LRB- how much control do you feel you have over your illness ? -RRB- , `` treatment control '' -LRB- how much do you think your treatment can help your illness ? -RRB- . It assessed emotional illness perception with items on illness `` concern '' -LRB- how concerned are you about your illness ? -RRB- and `` emotions '' -LRB- how much does your illness affect you emotionally ? -LSB- e.g. does it make you angry , scared , upset , or depressed ? -RSB- -RRB- , and it assessed illness understanding with an item on illness `` comprehensibility '' -LRB- how well do you feel you understand your illness ? -RRB- . Scores ranged from 0 to 10 , and averages on the group level were calculated -LRB- Broadbent et al. 2006 -RRB- . The last question of the IPQ-B is open ended , centring on the most important factors believed to cause the illness . The demographic , complaint-related , and work activities characteristics were used to describe the two groups . Demographics included gender , age , education , and current work activities . Complaint-related variables were pain and stiffness/tingling intensity -LRB- assessed with VAS scales ranging from 0 = no complaints at all to 10 = the worst complaints imaginable -RRB- -LRB- Streiner and Norman 2003 -RRB- , pain duration -LRB- in years -RRB- , extent of pain complaints -LRB- number of upper body regions affected -RRB- -LRB- Sluiter et al. 2001 -RRB- , ranging between 0 and 16 . Work activity characteristics were assessed by four psychosocial work characteristics subscales : work pressure , social support from colleagues or supervisor , and job control -LRB- from the `` Dutch Questionnaire on the Experience and Assessment of Work '' , VBBA -RRB- -LRB- Van Veldhoven and Meijman 1994 ; Sluiter et al. 2003 -RRB- . VBBA subscale scores ranged between 0 and 100 , with higher scores being more unfavourable . In order to compare the two groups of RSI patients , we classified the `` working '' group as those patients that had been present at their work for a minimum of 8 h during the previous week , and the `` sick-listed '' group were RSI patients with a sickness absence certificate following the Dutch social system -LRB- i.e. longer than 1 year sick-listed , or those that stated that they did not work according to their contract hours during the previous week before they filled in the questionnaire -RRB- . Statistical analysis Scale scores were calculated according to the original descriptions of the scales used . VAS scores were calculated in mm , ranging from 0 to 100 . Means and standard deviations were calculated for every outcome . We divided the respondents in two groups , one group of patients that indicated they worked in a paid job , and one group of patients that indicated they were sick-listed . After testing assumptions , either multivariate ANOVA controlling for age , gender , and education level or nonparametric tests -LRB- Mann -- Whitney -RRB- were performed to test differences between the two groups of RSI patients ; P-values < 0.01 were considered significant . Average differences over 1 on a 10-point scale and over 10 on a 100-point scale were considered clinically important in terms of effect size -LRB- Streiner and Norman 2003 -RRB- . Results A total of 1,185 respondents responded , and data from 1,121 questionnaires could be used in the analyses for this study . Table 1 provides a description of demographic and both complaint-related and work-related variables for the groups under study . Table 1Total study population and working vs. sick-listed groups : gender , education , age , pain intensity , pain duration , work status , and work-abilityTotal group -LRB- n = 1,121 -RRB- Working group -LRB- n = 745 -RRB- Sick-listed group -LRB- n = 376 -RRB- Difference between groups : P-valueGender -LRB- % females -RRB- 676278a < 0.001 Education -LRB- % high -RRB- 6771 60a < 0.001 Age in years -LRB- mean -LRB- SD -RRB- -RRB- 40.8 -LRB- 8.7 -RRB- 40.0 -LRB- 8.3 -RRB- 42.3 -LRB- 9.4 -RRB- a < 0.001 Pain intensity -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- 41.3 -LRB- 25.4 -RRB- 36.2 -LRB- 24.7 -RRB- 51.6 -LRB- 23.9 -RRB- a < 0.001 Stiffness/tingling intensity -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- 37.8 -LRB- 26.8 -RRB- 33.7 -LRB- 25.8 -RRB- 45.7 -LRB- 27.0 -RRB- a < 0.001 Pain duration in years -LRB- mean -LRB- SD -RRB- -RRB- 5.8 -LRB- 3.2 -RRB- 5.6 -LRB- 3.1 -RRB- 6.2 -LRB- 3.3 -RRB- 0.01 Pain extent -LRB- mean -LRB- SD -RRB- number of body regions -RRB- 6.4 -LRB- 3.9 -RRB- 5.7 -LRB- 3.6 -RRB- 7.7 -LRB- 4.1 -RRB- a < 0.001 Work pressure -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- sd -RRB- -RRB- b48 .4 -LRB- 21.1 -RRB- 48.7 -LRB- 20.8 -RRB- 45.9 -LRB- 23.6 -RRB- 0.885 Social support from colleagues -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- b27 .8 -LRB- 20.1 -RRB- 27.4 -LRB- 20.0 -RRB- 31.5 -LRB- 20.4 -RRB- 0.157 Social support from direct supervisor -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- b35 .1 -LRB- 26.2 -RRB- 34.4 -LRB- 26.1 -RRB- 42.0 -LRB- 26.1 -RRB- 0.138 aKolmogorov -- Smirnov test P-values < 0.01 bFilled in by n = 84 in the sick-listed group RSI patients in the sick-listed group were two years older on average , and this group contained a relatively higher proportion of women and lower proportion of highly educated persons . In the sick-listed group , 76 % was sick-listed longer than one year . In both groups , complaints were present for several years and extended over several upper body regions . In both groups , over 85 % received a diagnostic label , provided by a medical professional , that belong to the umbrella term RSI . With respect to complaint-related variables , the patients in the sick-listed group reported significantly more pain in more regions , and they reported more stiffness/tingling complaints . The sick-listed group reported significantly lower ability to work , and no differences between groups were found in the psychosocial work characteristics experienced . With respect to co-morbidity , no other diseases were reported by 46 % in the sick-listed group compared to 64 % in the working group ; depression and burnout were reported by 12 and 11 % in the sick-listed group versus 6 and 5 % in the working group . In the working patient group , 35 % filled some kind of administrative function , 11 % worked in IT , 10 % worked in a physical job , and 10 % in a management function . In both groups , almost 80 % reported long - or short-term overexertion during work as the only main cause of the onset of their illness . Experienced quality of life on the studied SF-36 subscales is shown in Tables 2 and 3 . In Table 2 , a matrix of zero-order correlation coefficients is shown for the complete population between work-ability , pain intensity , pain duration , the SF-36 subscales , and the eight B-IPQ dimensions . The highest correlation coefficients were found between the two SF-36 subscales mental health and vitality -LRB- r = 0.75 -RRB- , and the SF-36 subscale pain and VAS scale pain intensity -LRB- r = 0.72 -RRB- . Table 2Matrix of zero-order correlation coefficients between 1 : work-ability , 2 : pain intensity , 3 : pain duration , 4 -- 10 : SF-36 subscales , and 11 -- 18 : the B-IPQ outcomes -LRB- n varies between 1,027 and 1,114 -RRB- 1234567891011121314151617181 work-ability -- 2 pain intensiy − 0.48 -- 3 pain duration − 0.080.12 -- 4 sf physical role0 .54 − 0.45 − 0.02 -- 5 sf mental health0 .34 − 0.250.030.32 -- 6 sf emotional role0 .26 − 0.180.050.31 -- 7 sf social functioning − 0.010.05 − 0.01 − 0.07 − 0.010.09 -- 8 sf pain0 .61 − 0.72 − 0.050.590.310.24 − 0.03 -- 9 sf vitality0 .40 − 0.300.010.400.750.47 − 0.080.39 -- 10 sf physical functioning0 .60 − 0.52 − 0.180.480.270.22 − 0.020.610.38 -- 11 consequences − 0.610.510.08 − 0.58 − 0.35 − 0.27 − 0.001 − 0.62 − 0.41 − 0.49 -- 12 timeline − 0.130.180.32 − 0.10 − 0.030.010.01 − 0.15 − 0.07 − 0.160.19 -- 13 personal control0 .44 − 0.36 − 0.0040.350.330.18 − 0.0010.420.350.34 − 0.36 − 0.06 -- 14 treatment control0 .29 − 0.19 − 0.090.160.100.050.040.210.150.15 − 0.16 − 0.160.33 -- 15 identity − 0.510.640.07 − 0.54 − 0.29 − 0.230.04 − 0.67 − 0.35 − 0.490.680.23 − 0.33 − 0.10 -- 16 concern − 0.380.46 − 0.03 − 0.46 − 0.35 − 0.270.01 − 0.49 − 0.37 − 0.300.570.16 − 0.36 − 0.100.58 -- 17 comprehensibility0 .20 − 0.160.040.220.200.14 − 0.030.190.210.12 − 0.210.000.310.22 − 0.16 − 0.29 -- 18 emotional response − 0.380.35 − 0.07 − 0.46 − 0.51 − 0.390.01 − 0.41 − 0.47 − 0.250.590.08 − 0.35 − 0.080.480.64 − 0.27 -- Table 3Mean -LRB- SD -RRB- scores by groups on SF-36 subscales physical role functioning , mental health , emotional role functioning , social functioning , pain , vitality , physical functioning , and work-abilityTotal group -LRB- n = 1,121 -RRB- Working group -LRB- n = 745 -RRB- Sick-listed group -LRB- n = 376 -RRB- Difference between groups : P-valueSF-36 scales -LRB- 0 -- 100 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- Physical role functioning34 .7 -LRB- 38.2 -RRB- 43.4 -LRB- 39.2 -RRB- 17.0 -LRB- 29.0 -RRB- a < 0.001 Mental health68 .5 -LRB- 16.7 -RRB- 70.6 -LRB- 15.6 -RRB- 64.3 -LRB- 18.0 -RRB- a < 0.001 Emotional role functioning73 .9 -LRB- 38.3 -RRB- 78.7 -LRB- 34.8 -RRB- 64.1 -LRB- 43.1 -RRB- a < 0.001 Social functioning54 .5 -LRB- 9.4 -RRB- 54.6 -LRB- 8.9 -RRB- 54.2 -LRB- 10.4 -RRB- 0.208 Pain54 .7 -LRB- 21.6 -RRB- 60.7 -LRB- 19.2 -RRB- 42.7 -LRB- 22.0 -RRB- a < 0.001 Vitality53 .6 -LRB- 17.9 -RRB- 55.7 -LRB- 17.1 -RRB- 49.3 -LRB- 18.6 -RRB- a < 0.001 Physical functioning76 .5 -LRB- 18.0 -RRB- 81.7 -LRB- 14.6 -RRB- 65.9 -LRB- 19.6 -RRB- a < 0.001 Work-ability -LRB- 0 -- 10 -RRB- -LRB- mean -LRB- SD -RRB- -RRB- 5.4 -LRB- 2.7 -RRB- 6.6 -LRB- 1.8 -RRB- 3.1 -LRB- 2.6 -RRB- a < 0.001 aKolmogornov -- Smirnov test P-values < 0.01 As shown in Table 3 , the average scores of all scales but social functioning differed significantly between the two groups to the detriment of the sick-listed RSI patients on the other SF-36 subscales . Clinically relevant differences were found in work-ability and in the SF-36 scales for physical role functioning , emotional role functioning , pain , and physical functioning . General quality of life with respect to present health was rated as 52.7 on average -LRB- SD : 24.4 -RRB- in the total group of RSI patients , and the average in the working group and sick-listed groups were 57.9 and 42.2 , respectively . The group difference was significant -LRB- P-value Kolmogornov -- Smirnov test < 0.001 -RRB- . In contrast , the estimated general quality of life with respect to health before the onset of RSI complaints was rated as 83.1 on average -LRB- SD : 15.4 -RRB- in the total group of RSI patients . There was only a non-significant difference in the average scores between groups -LRB- 83.1 in the working group and 83 in the sick-listed group -LRB- P-value Kolmogornov -- Smirnov test = 0.796 -RRB- -RRB- . Combining these results , the general quality of life with respect to health was subjectively decreased by 37 % in the total group over time . However , the difference in decrease was significant -LRB- Kolmogornov -- Smirnov test , P-value < 0.001 -RRB- : only 31 % in the working group but 49 % in the sick-listed group of patients . Scores on the eight illness perception dimensions are shown in Table 4 . Table 4Mean -LRB- SD -RRB- illness perception scores -LRB- B-IPQ -RRB- by groupsIllness perception dimensionsTotal group -LRB- n = 1,121 -RRB- Working group -LRB- n = 745 -RRB- Sick-listed group -LRB- n = 376 -RRB- Difference between groups : P-valueConsequences6.3 -LRB- 2.6 -RRB- 5.6 -LRB- 2.5 -RRB- 7.6 -LRB- 2.1 -RRB- a < 0.001 Timeline8 .3 -LRB- 2.0 -RRB- 8.2 -LRB- 2.1 -RRB- 8.5 -LRB- 1.7 -RRB- 0.557 Personal control 6.3 -LRB- 2.0 -RRB- 6.7 -LRB- 1.8 -RRB- 5.6 -LRB- 2.1 -RRB- a < 0.001 Treatment control 5.2 -LRB- 2.6 -RRB- 5.7 -LRB- 2.5 -RRB- 4.4 -LRB- 2.6 -RRB- a < 0.001 Identity6 .2 -LRB- 2.4 -RRB- 5.8 -LRB- 2.4 -RRB- 7.1 -LRB- 2.1 -RRB- a < 0.001 Concern5 .5 -LRB- 2.6 -RRB- 5.2 -LRB- 2.6 -RRB- 6.1 -LRB- 2.6 -RRB- a < 0.001 Comprehensibility6 .9 -LRB- 2.1 -RRB- 7.1 -LRB- 2.0 -RRB- 6.6 -LRB- 2.3 -RRB- 0.014 Emotional response5 .4 -LRB- 2.6 -RRB- 5.1 -LRB- 2.6 -RRB- 6.0 -LRB- 2.5 -RRB- a < 0.001 aKolmogornov -- Smirnov test P-values < 0.01 With the exception of the dimension timeline and comprehensibility , there was a significant difference in the six other illness perception dimensions between the two groups . Clinically relevant differences between the two groups to the detriment of the sick-listed RSI patients were found for the illness perception dimensions of `` consequences '' , `` personal - '' and `` treatment-control '' , and `` identity '' . Discussion The aim of the present study was to describe working vs. sick-listed RSI patients ' perspectives in the Netherlands in 2005 with respect to their complaints , quality of life , and illness perception . The sick-listed RSI patients reported more severe and extensive complaints in the upper extremity , but the long duration -LRB- 6 years -RRB- of their complaints was comparable to the working RSI patients . The sick-listed patients , however , experienced a considerably more decreased quality of life because of their complaints , as well as more distorted illness perceptions . The quality of life in sick-listed patients was lower than that of the working patients when the SF-36 subscales scores were taken into account . Interestingly , both groups showed comparable but low social functioning scores -LRB- averaging around 55 -RRB- . This was also actually quite low compared to a group of patients with rheumatoid arthritis , who averaged over 70 and compared with a small sample of Dutch workers with RSI who averaged 79 -LRB- Sprangers et al. 2000 ; Picavet and Hoeymans 2004 -RRB- . The experienced quality of life decrease over time was found to be substantial in both groups , which might be explained by the severity , duration , and extent of the reported complaints . It is possible to argue that the anchor question that was used to calculate the quality of life decrease was posed post-hoc . But that was one of the proposed solutions among quality of life researchers in the debate about changed perspectives and response shift : by asking for the two rates at a given time in the form of an existing test , there can not be any recalibration , re-evaluation of re-prioritization , and re-conceptualization -LRB- Osborne et al. 2006 ; Visser et al. 2005 -RRB- . This may have been the first time that illness representation was assessed in a large group of RSI patients using the recently described brief illness perception questionnaire -LRB- IPQ-B -RRB- -LRB- Broadbent et al. 2006 -RRB- . Illness representation covers the dimensions of illness identity , consequences , cause , timeline , and cure or control . These perceptions about the illness influence patient behaviours , and changing perceptions may improve recovery -LRB- e.g. Petrie et al. 2002 -RRB- . If an average difference of over 1 on a 0 -- 10 point scale is considered clinically relevant , illness consequences , personal control , treatment control , and identity -LRB- i.e. the number of symptoms because of the illness -RRB- clearly differed between sick-listed and working RSI patients . We believe that it would be useful to focus future informational treatment strategies in the sick-listed patient group on changing their illness perception . We successfully compared two fairly large groups of chronic RSI patients with respect to their current complaints , quality of life , and illness perception . However , some methodological considerations are in place : -LRB- 1 -RRB- the used case-definition to identify sick-listed RSI patients may have influenced the outcomes although it is not clear in what direction this may have caused a bias ; -LRB- 2 -RRB- because not all variables complied with all assumptions for multivariate testing , that would have allowed for controlling for different possible confounders , non-parametric test outcomes have been presented . Post-hoc multivariate testing did not show any differences in the outcomes as were presented . -LRB- 3 -RRB- It is acknowledged that a relatively modest proportion of the total study population responded . Considering the variation in responses and the main purpose of this study , the response should not be considered as a bias . Our population , however , is a selected population in several ways and this has been described in the methods section : participants were members of the RSI patients association , they had long-term complaints , it was not possible to take a random sample in the theoretically existing Dutch group of chronic RSI patients who work or are sick-listed , and the number of responders of the total sample was not as much as would be desirable . However , the diagnostic label that was communicated with over 85 % of these chronic patients by different physicians was one of the syndromes that fall under the umbrella diagnosing label of `` RSI '' -LRB- Sluiter et al. 2001 -RRB- . In addition , comparisons between two groups of this specific group of patients were reported upon for this study . Summarizing , besides its possible shortcomings , this study is thought to be unique with respect to studying a large group of chronic RSI patients as most of the published literature on work-related upper extremity musculoskeletal disorders deal with acute and sub-acute populations . It would be interesting to study how the relation between the variables under study developed over time : if the severity of complaints , quality of life level , and illness perception dimensions are relatively stable over time in this subgroup of chronic patients , they could be used as prognostic factors to decide on interventions with respect to future ability to work . It may also be that if activities are increased because of work resumption , they will act as `` intervention '' in the place-then-train ratio and influence the measures over time . We do know that the differences in the severity of RSI complaints and quality of life indices , to the detriment of the sick-listed group of RSI patients , could be used as an indication for referral to multidisciplinary treatment programmes , because all of these parameters have recently been shown to be influenced positively , even in patients with long-term complaints -LRB- Meijer et al. 2006 -RRB- .

B I I O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O B I O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O B I I O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O

repetitive strain injuries
quality of life
illness perception


A new instrument to describe indicators of well-being in old-old patients with severe dementia -- The Vienna List Background In patients with very severe dementia self-rating of quality of life usually is not possible and appropriate instruments for proxy-ratings are not available . The aim of this project is to develop an instrument of clinical proxy-ratings for this population . Background In industrial societies the proportions of old people and of people suffering from dementia are steadily increasing . Consequently , the number of people depending on different types of institutional care is growing . The care is provided in general hospitals , geriatric hospitals , nursing homes , private homes , and senior residences and within the families . Obviously , there are large differences in costs and efficacy of these different types of care . In general , quality of life data have been increasingly appreciated as the key outcome measure for the assessment of therapeutic interventions and for the usefulness of various treatment facilities . Quality of life is defined by WHO as `` an individual 's perception of their position in life , in the context of the culture and value systems in which they live , and in relation to their goals , expectations , standards , and concerns . It is a broad ranging concept , effected in a complex way by the person 's physical health , psychological state , level of independence , social relationships and their relationships to salient features of their environment '' -LSB- 1 -RSB- . As concerns people with dementia , many of the instruments in use represent brief global measures , which can not be applied to patients with severe dementia . The most important reason for this slow growth of empirical data in this area probably relates to the obvious methodological problems of obtaining reliable subjective accounts of individuals with severe dementia who have compromised cognitive abilities , frequently with concurrent impaired communicative skills . Due to these impairments in this group of patients most of the available instruments are not applicable for assessing quality of life related issues by means of traditional measures such as questionnaires or interviews which require a highly complex procedure of introspection and evaluation , involving several components of cognition including implicit and explicit memory -LSB- 2 -RSB- . Facing these problems , attempts have been made to develop direct observational methods -LSB- 3 -RSB- measuring positive affects such as pleasure , interest , and contentment as well as negative affects such as sadness , anxiety/fear , and anger according to operationalized criteria during a series of 10-minutes direct observation . An alternative approach was chosen by the Bradford Research Group in the UK -LSB- 4 -RSB- with the Dementia Care Mapping -LRB- DCM -RRB- based on the psychosocial model of `` person-centred care '' which provides detailed observational ratings covering aspects of articulation , feeding , social withdrawal , passive engagement , walking and a number of indicators of well-being . Literature searches -LRB- -2003 -RRB- of Medline , Embase , Psyclit , Cinahl using the keywords dementia and well-being and quality of life were conducted . Lawton et al. -LSB- 5 -RSB- developed the Minimum Data Set -LRB- MDS -RRB- comprising cognition , activities of daily living , time use , depression , and problem behaviours . He proposed to include observations of demented patients ' emotional behaviours -LSB- 6 -RSB- . Most of the measurements are derived from existing instruments and are confined to few of the following dimensions : affect , activity , enjoyment , self-esteem , and social interactions -LSB- 7 -RSB- . Ready and Ott concluded from their review -LSB- 7 -RSB- that the psychometric properties of most of the available instruments have to be regarded as preliminary . As mentioned above , there were no quality of life assessment tools for patients with very severe dementia as representative of our population . Unfortunately , the instruments developed for demented patients were not found applicable to our patients who were in much more advanced stages of dementia -LRB- e.g. the Mini Mental State Examination could not be completed by any of our patients -RRB- . For this reason a project was launched in 1998 by the department of Palliative Geriatrics -LRB- Geriatriezentrum am Wienerwald -RRB- , to develop a new instrument based on observations made by the staff -LRB- physicians , nurses and physiotherapists -RRB- completely independent on the patients ' cooperation . Methods Patients In the present study 217 consecutive patients -LRB- 44 males , 173 females -RRB- were included . The average age was 84 years -LRB- range 61 -- 105 years -RRB- . The majority of patients suffered from severe dementia according to ICD-10 -LRB- 34,5 % F00 -- Dementia in Alzheimer 's Disease ; 61,5 % F01 -- Vascular Dementia ; 4,0 & F02 -- other -RRB- . It appeared that more women -LRB- 38 % -RRB- had been diagnosed as suffering from Alzheimer 's disease compared with men -LRB- 23 % -- χ2 -LRB- df = 2 -RRB- = 6,05 ; p = 0,049 -RRB- . As concerns age , the patients with Alzheimer 's disease -LRB- 87,3 ± 5,7 years -RRB- and vascular dementia -LRB- 86,3 ± 7,0 years -RRB- were significantly older than those with other diagnoses -LRB- 78,5 ± 15,6 years -- t = 3,27 ; p = 0,002 and t = 2,74 ; p = 0,007 respectively -RRB- . Development of the item-pool Thirteen staff members comprising doctor , nurses , and therapists from the department of Palliative Geriatrics at the Geriatriezentrum am Wienerwald in Vienna had observed severely demented patients during a one year period -LRB- May 1998 to April 1999 -RRB- . The patient 's behaviour was documented at one of the wards -LRB- 32 beds -RRB- . Based on this documentation , 65 items for the description of behaviour in demented inpatients were derived and allocated to categories , supposedly reflecting relevant aspects of their well-being such as voice , language , mood , eye contact , acceptance of body contact , gait , muscular tension , hand movement , sleep , activities , communication , independence concerning food intake . This approach is different from prevailing approaches , which mainly are based on the use of items from existing instruments measuring specific aspects . Subsequently , by means of this item-list , 771 assessments of 217 in-patients in various situations such as eating , dressing , grooming had been obtained between June 1999 and September 2000 by physicians and nurses . Each of the original 65 items was scored on a 5-point Likert scale from 0 = never to 4 = always . Further assessments Patients were diagnosed according to ICD-10 . They were rated by means of the Brief Cognitive Rating Scale -LRB- BCRS -RRB- -LSB- 8 -RSB- , the Global Deterioration Scale -LRB- GDS -RRB- -LSB- 9 -RSB- , the Barthel-Index -LSB- 10 -RSB- , and the Spitzer Index -LSB- 11 -RSB- . The BCRS describes the severity of cognitive impairment providing five main axes -LRB- concentration , short term memory , long term memory , orientation , and self-care ability -RRB- and five co-axes -LRB- language , psychomotoric , mood and behaviour , drawing skills , calculating skills -RRB- each rated on a 7-step scale . The GDS is a proxy rating scale to assess the severity of dementia in elderly people on a seven point Likert-type scale -LRB- 1 = no impairment ; 7 = most severe impairment -RRB- . The Barthel-Index was used to assess the activity of daily living in 10 areas -LRB- feeding , transfers bed to chair and back , grooming , toilet use , bathing , mobility , climbing stairs , dressing , stool control , bladder control -RRB- . The Spitzer Index is a global quality of life measure covering five areas -LRB- activity , daily life , health , social relations , future -RRB- with a maximum score of 10 points . The BCRS , GDS , and Spitzer Index had been rated by physicians and the Barthel index by nurses . All ratings including the 65 items list were made on the same occasion . Data collection was carried out using electronic questionnaires implemented through the Quality-of-Life-Recorder technology -LSB- 12 -RSB- . Statistical analysis Descriptive statistics were generated for demographic data and diagnostic categories and for the BCRS and GDS scales , for the Barthel and Spitzer Indices , as well as for the newly developed instrument . A factor analysis -LRB- principle component analysis , oblimin with Kaiser normalisation as rotation method -RRB- , based on these 771 assessments was performed . The number of interpretable factors was determined by interpretation of a Scree plot . The consistency of the factors was tested by Cronbach 's alpha coefficients . To improve the consistency of the scales , items have been deleted based on the criteria of changes in magnitude of the Cronbach 's alpha coefficients and on the fit of the item with the content of the core items of the factors . To test the stability of the factor structure , we conducted separate analyses for doctors and nurses . For testing construct validity , we used the two external criteria , Brief Cognitive Rating Scale and the Barthel-Index . To test for inter-rater reliability Spearman rank correlation coefficients were calculated . We included only data in which the electronic recording confirmed that it was obtained at exactly the same time . Results Most patients suffered from severe dementia as indicated by the results of the BCRS -LRB- mean ± SD : 57 ± 8.8 -RRB- and GDS -LRB- mean ± SD : 5.7 ± 1.1 -RRB- and the low level of activity of daily living -LRB- mean ± SD of Barthel Index : 26.8 ± 29.7 -RRB- in the present sample also reflected by the distribution of diagnoses according to ICD-10 . Of the 771 assessments 386 had been performed by nurses and 385 assessments by physicians . By means of the electronic recordings we identified 22 pairs of assessments made at the same time by a nurse and a physician . A planned feasibility analysis after 120 assessments resulted in the exclusion of the Spitzer Index because of a general floor effect -LRB- mean score < 3 -RRB- . The factor analysis suggested five factors based on the interpretation of the Scree plot . The results of the five-factor solution are given in Table 1 with high Eigenvalues and an explained variance of more than 60 per cent . Table 1 Eigenvalues and explained amounts of variance for the 5-factor solution Eigenvalues % of Variance Cumulative % Factor nurse physician nurse physician nurse physician 1 10.0 10.7 24.4 26.0 24.4 26.0 2 5.7 6.1 13.8 15.0 38.2 41.0 3 4.9 4.8 11.9 11.8 50.0 52.1 4 2.5 2.1 6.1 5.0 56.1 58.0 5 2.0 2.5 4.9 6.1 61.0 63.9 Extraction Method : Principal Component Analysis . To improve the consistency of the five factors , 18 of the original 65 items were deleted based on the criteria of changes in magnitude of the Cronbach alpha coefficients and on the fit of the item with the content of the core items of the factors . As a next step , eight further items were excluded due to different factor-loadings between raters and of content considerations resulting in the following five factors : communication -LRB- 15 items -RRB- , negative affect -LRB- 10 items -RRB- , bodily contact -LRB- 5 items -RRB- , aggression -LRB- 4 items -RRB- and mobility -LRB- 6 items -RRB- . The factor structure matrix including the single items for physicians and nurses is shown in table 2 and demonstrates a high congruency of the factor structure between both groups of raters on the item level . Table 2 Structure Matrix Factor 1 2 3 4 5 Nurse Physician Nurse Physician Nurse Physician Nurse Physician Nurse Physician Communication ITEM 59 0.82 0.83 -0.19 -0.14 0.04 -0.32 0.29 0.05 0.06 0.25 ITEM 62 0.81 0.64 0.02 0.16 0.08 -0.39 0.28 0.22 -0.09 0.34 ITEM 6 0.79 0.78 -0.26 0.13 -0.07 -0.29 0.18 0.08 0.10 0.17 ITEM 61 0.79 0.67 -0.23 -0.13 0.10 -0.56 0.22 0.09 0.08 0.25 ITEM 8 0.78 0.81 -0.20 0.08 -0.16 -0.25 0.14 0.12 0.12 0.18 ITEM 65 0.73 0.77 -0.27 -0.13 -0.05 -0.05 0.52 0.10 0.01 0.48 ITEM 56 0.70 0.69 -0.08 0.08 -0.15 0.07 0.07 -0.06 0.05 0.10 ITEM 14 0.70 0.85 -0.11 -0.11 0.02 -0.10 0.44 -0.06 0.15 0.26 ITEM 32 0.66 0.64 -0.14 -0.06 0.35 -0.48 0.03 -0.11 0.15 0.22 ITEM 31 0.65 0.65 -0.12 0.01 0.32 -0.54 0.08 0.00 0.15 0.19 ITEM 13 0.64 0.76 -0.24 -0.04 0.06 -0.42 0.11 0.13 0.12 0.20 ITEM 50 0.64 0.77 -0.40 -0.19 -0.04 -0.17 0.46 -0.03 0.19 0.35 ITEM 64 0.62 0.61 0.05 0.13 0.06 -0.17 0.49 -0.21 0.03 0.40 ITEM 60 0.59 0.69 0.12 0.17 -0.27 0.03 0.01 0.28 -0.11 0.07 ITEM 15 0.45 0.73 0.03 -0.13 -0.08 0.19 0.34 -0.19 0.12 0.06 Negative Affect ITEM 18 -0.08 0.04 0.83 0.87 -0.03 -0.14 -0.08 0.11 -0.28 -0.02 ITEM 22 -0.04 0.09 0.80 0.74 0.11 -0.34 -0.10 0.08 -0.20 0.00 ITEM 3 -0.07 0.02 0.75 0.82 0.16 -0.18 -0.13 0.17 -0.11 -0.06 ITEM 24 -0.09 -0.01 0.74 0.76 -0.05 -0.18 -0.05 0.12 -0.37 0.08 ITEM 27 0.04 0.02 0.66 0.77 -0.13 -0.10 -0.17 0.45 -0.45 -0.05 ITEM 17 -0.28 -0.17 0.66 0.71 -0.08 0.14 -0.16 0.38 -0.58 -0.12 ITEM 25 -0.30 0.17 0.65 0.63 0.03 -0.02 -0.29 -0.02 -0.08 -0.07 ITEM 54 -0.20 -0.20 0.62 0.58 -0.09 0.10 0.19 0.28 -0.34 0.05 ITEM 53 -0.10 -0.01 0.60 0.50 -0.07 0.23 0.14 0.17 -0.28 0.01 ITEM 47 -0.28 -0.26 0.53 0.61 0.00 0.11 -0.26 0.37 -0.45 -0.11 Bodily contact ITEM 35 0.00 0.17 0.02 -0.03 0.93 -0.76 -0.08 -0.13 0.11 -0.11 ITEM 34 0.01 0.27 0.00 0.07 0.93 -0.81 -0.09 -0.12 0.12 -0.09 ITEM 33 0.03 0.37 0.00 0.14 0.90 -0.77 -0.09 -0.06 0.12 0.00 ITEM 36 -0.06 -0.21 0.01 0.10 0.89 -0.81 -0.13 -0.15 0.16 -0.08 ITEM 37 -0.06 -0.27 0.01 0.15 0.86 -0.76 -0.12 -0.16 0.17 -0.06 Aggression ITEM 4 -0.14 0.01 0.25 0.27 -0.19 0.08 0.13 0.91 -0.88 0.08 ITEM 19 -0.24 -0.05 0.31 0.18 -0.22 0.16 0.13 0.84 -0.83 0.09 ITEM 1 0.05 0.20 0.28 0.20 -0.07 0.12 0.01 0.71 -0.78 0.08 ITEM 29 0.22 0.11 0.20 0.21 -0.10 0.05 0.03 0.84 -0.77 0.15 Mobility ITEM 40 0.42 0.56 -0.31 -0.23 -0.20 0.08 0.79 -0.14 0.22 0.80 ITEM 41 0.49 0.64 -0.28 -0.27 -0.23 0.07 0.71 -0.19 0.23 0.63 ITEM 57 0.01 0.01 0.01 0.08 -0.05 0.00 0.68 0.14 -0.18 0.70 ITEM 42 0.04 0.07 0.07 0.06 -0.02 0.05 0.68 0.20 -0.18 0.80 ITEM 43 0.43 0.63 -0.43 -0.15 -0.08 -0.09 0.66 0.00 0.22 0.64 ITEM 55 0.41 0.46 -0.14 -0.07 -0.10 0.04 0.42 -0.23 0.03 0.34 Extraction Method : Principal Component Analysis . Rotation Method : Oblimin with Kaiser Normalization . In addition , it appeared that the factors were generally unrelated to each other except for significant correlations between the factors ` communication ' and ` bodily contact ' -LRB- r = 0.25 ; p < 0.001 each -RRB- and of ` mobility ' with ` negative affect ' -LRB- physicians : r = 0.22 ; p = 0.001 ; nurses : r = -0.33 ; p < 0.01 -RRB- . The Cronbach alpha coefficients as a measure of internal consistency were high for both nurses and physicians -LRB- table 3 -RRB- . The congruence of nurses ' and physician 's ratings is further demonstrated by similar item severity -LRB- relative ratings -RRB- and selectivity of the single factors -LRB- table 4 -RRB- . Table 3 Cronbach alpha coefficients Factor Number of Items Nurse Physician 1 -- Communication 15 0.93 0.94 2 -- Negative Affect 10 0.88 0.89 3 -- Bodily Contact 5 0.90 0.90 4 -- Aggression 4 0.86 0.87 5 -- Mobility 6 0.81 0.82 Table 4 Item severity and Item selectivity Item severity Item selectivity Communication Nurse Physician Nurse Physician 59 Responding to distant calls 0.57 0.63 0.82 0.85 62 Looking for contact 0.53 0.56 0.81 0.71 06 Speaks comprehensibly 0.64 0.69 0.79 0.81 61 Contact possible 0.83 0.90 0.79 0.74 08 Speaks meaningful groups of words 0.59 0.68 0.77 0.82 65 Eats and drinks by him - / herself 0.66 0.68 0.79 0.78 56 Reads newspaper 0.24 0.19 0.69 0.64 14 Carries out simple orders 0.39 0.64 0.73 0.84 32 Maintains visual contact 0.72 0.74 0.65 0.71 31 Visual contact possible 0.80 0.85 0.63 0.72 13 Comprehends single words 0.89 0.88 0.63 0.81 50 Uses both hands intentionally 0.62 0.67 0.70 0.79 64 Worries about others 0.25 0.23 0.65 0.63 60 Rings the bell 0.29 0.31 0.58 0.67 15 Carries out complicated orders 0.08 0.24 0.47 0.64 Negative Affect 18 Full of despair 0.40 0.43 0.82 0.86 22 Sad/crying 0.32 0.36 0.77 0.75 03 Whining voice 0.33 0.32 0.72 0.83 24 Nervous/anxious 0.37 0.40 0.76 0.75 27 Wailing 0.30 0.31 0.69 0.80 17 Tensed 0.36 0.43 0.73 0.72 25 Resignated 0.27 0.38 0.65 0.63 54 Restless/confused 0.25 0.31 0.62 0.59 53 Problems to fall asleep 0.25 0.36 0.59 0.49 47 Muscular tension 0.37 0.43 0.60 0.62 Bodily Contact 35 Bodily contact possible at shoulders 0.77 0.87 0.92 0.78 34 Bodily contact possible at arms 0.81 0.91 0.90 0.80 33 Bodily contact possible at hands 0.82 0.94 0.88 0.73 36 Bodily contact possible at the head 0.63 0.63 0.91 0.88 37 Bodily contact possible in the face 0.56 0.55 0.88 0.84 Aggression 04 Aggressive voice 0.27 0.27 0.89 0.90 19 Aggressive acts 0.21 0.19 0.85 0.84 01 Loud voice 0.32 0.33 0.80 0.80 29 Insulting others 0.23 0.22 0.81 0.88 Mobility 40 Walking upright 0.37 0.40 0.92 0.95 41 Walking straightup to 0.33 0.36 0.87 0.87 57 Departs from ward 0.07 0.05 0.53 0.46 42 Wanders around 0.16 0.17 0.53 0.62 43 Sitting upright 0.57 0.57 0.80 0.81 55 Ready to help on ward 0.13 0.09 0.55 0.54 For testing construct validity , we used two external criteria , the Brief Cognitive Rating Scale -LRB- BCRS -RRB- used by physicians and the Barthel-Index used by nurses -LRB- table 5 -RRB- . The correlation coefficients between the various areas of the BCRS and the two relevant scales of the new instrument -LRB- communication and mobility -RRB- point to a satisfactory validity . Concerning the second criteria , the Barthel-Index -LRB- a measure of activities of daily living -RRB- , it was significantly correlated with the scales `` communication '' and `` mobility '' of our instrument . Furthermore , the latter was correlated with the scale `` negative affect '' and `` acceptance of body contact '' in the expected direction . Table 5 Correlations with BCRS scores and Barthel Index Communication Negative Affect Bodily contact Aggression Mobility Physicians BCRS 1 -- concentration -0.71 * 0.05 0.07 -0.02 -0.45 * BCRS 2 -- short time memory -0.67 * 0.02 0.11 -0.01 -0.42 * BCRS 3 -- long time memory -0.68 * 0.14 0.09 0.08 -0.46 * BCRS 4 -- orientation -0.65 * 0.12 0.12 0.11 -0.40 * BCRS 5 -- everyday life competency -0.47 * -0.04 -0.04 -0.10 -0.44 * BCRS 6 -- language -0.71 * -0.02 0.02 -0.09 -0.37 * BCRS 7 -- psychomotorics -0.41 * -0.01 0.06 -0.10 -0.59 * BCRS 8 -- mood and behaviour -0.60 * 0.10 -0.02 0.03 -0.34 * BCRS 9 -- constructive skills -0.55 * 0.03 0.02 -0.06 -0.34 * BCRS 10 -- calculation skills -0.59 * 0.17 * 0.09 0.09 -0.35 * Main axis -0.73 * 0.07 0.09 0.02 -0.49 * Co-axis -0.71 * 0.07 0.04 -0.03 -0.49 * BCRS total score -0.74 * 0.07 0.06 -0.01 -0.50 * Nurses Barthel Item 1 -- feeding 0.70 * -0.21 * -0.10 0.02 0.63 * Barthel Item 2 -- transfer 0.46 * -0.27 * -0.17 * -0.08 0.83 * Barthel Item 3 -- personal care 0.41 * -0.17 * -0.02 -0.12 0.36 * Barthel Item 4 -- toilet use 0.47 * -0.25 * -0.20 * -0.12 0.67 * Barthel Item 5 -- bathing 0.08 -0.07 0.04 -0.06 0.09 Barthel Item 6 -- moving 0.43 * -0.28 * -0.18 * -0.09 0.83 * Barthel Item 7 -- stairs 0.32 * -0.23 * -0.14 -0.03 0.72 * Barthel Item 8 -- dressing 0.51 * -0.23 * -0.22 * -0.09 0.67 * Barthel Item 9 -- bowel 0.48 * -0.20 * -0.16 * -0.15 * 0.57 * Barthel Item 10 -- bladder control 0.44 * -0.20 * -0.22 * 0.14 0.56 * Barthel Index 0.56 * -0.28 * -0.20 * -0.10 0.83 * * p < 0.001 When testing for gender differences concerning the factors , we found significant differences for all but one factor -LRB- table 6 -RRB- . Table 6 Factor Scores of Observations by Gender of the Patients Factor Observations of Males -LRB- x ± SD -RRB- N = 123 Observations of Females -LRB- x ± SD -RRB- N = 648 t-score p value 1 -- Communication 34.8 ± 13.2 33.8 ± 11.8 0.82 0.415 2 -- Negative Affect 9.5 ± 6.7 14.8 ± 6.7 -8.37 < 0.001 3 -- Bodily Contact 14.9 ± 4.3 16.7 ± 4.9 -4.18 < 0.001 4 -- Aggression 3.1 ± 3.0 4.3 ± 3.5 -3.21 0.001 5 -- Mobility 8.1 ± 5.5 6.3 ± 5.5 3.38 0.001 The interrater-reliability between sub-samples of physicians and nurses proved to be satisfactory -LRB- table 7 -RRB- . Table 7 Paired sample test and Spearman Rank correlation coefficients between nurses and physicians related to the same patient at the same day -LRB- 22 pairs -RRB- Factor Nurse -LRB- x ± SD -RRB- Physician -LRB- x ± SD -RRB- t-score/p R/p 1 -- Communication 25.8 ± 10.5 26.4 ± 8.9 -0.35 / 0.727 0.71 / < 0.001 2 -- Negative Affect 11.9 ± 7.6 8.6 ± 5.0 2.46 / 0.023 0.57 / 0.006 3 -- Bodily contact 15.9 ± 5.7 18.4 ± 2.9 -2.22 / 0.038 0.53 / 0.011 4 -- Aggression 4.3 ± 3.0 2.2 ± 2.1 3.69 / 0.001 0.35 / 0.112 5 -- Mobility 6.5 ± 5.7 5.1 ± 5.8 2.03 / 0.056 0.81 / < 0.001 Discussion The special problem in the assessment of well-being in patients with severe dementia is their lack of competence which is compromising the reliability of their reports . Consequently , observer ratings are the only alternative for such self-ratings . However , observer ratings inherit the potential risk of overrating the well-being of patients if the provider and rater of health care services are identical . We have controlled for this risk by semi-quantitatively describing the frequency of distinct behaviour patterns in demented patients . The results of this study demonstrate that the behaviour of old-old patients with severe dementia can be described by five factors of the Vienna List . By explaining more than 60 % of the total variance these five factors obviously cover a considerable part of the possible spectrum of behaviour in these patients . Since nurses and physicians have different intensity of contact and corresponding different perspectives , it was surprising that their assessments were highly correlated in three of the five factors . The two factors , aggression and mobility , yielded higher scores among the nurses as compared to doctors . As concerns aggression , there are mainly two explanations for this difference . Firstly , nurses spend more time and have closer contact with the patients and consequently have a higher risk to induce aggressive behaviour in the patients . In addition , the extended period of contact increases the chance to experience an episode of aggressive behaviour . Secondly , patients normally behave differently towards nurses and doctors due to differences in role expectation and familiarity related to the frequency of contact . However , we consider this later explanation as unlikely in these patients due to their cognitive impairment . Regarding mobility it is plausible that the doctors report lower scores for mobility of the patients as the doctor mainly sees the patient under certain circumstances , i.e. during the rounds where the ward routines limit the mobility of the patient . Since these five factors encompass most of the behavioural repertoire of demented old-old patients we assume that these factors can be regarded as a useful approach to describe the well-being in these patients .

O O O O O O O O O O O O B I O O O O O O O O O B I O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O