Pre-dialysis patients' perceived autonomy, self-esteem and labor participation: associations with illness perceptions and treatment perceptions. A cross-sectional study
© Jansen et al; licensee BioMed Central Ltd. 2010
Received: 19 May 2010
Accepted: 8 December 2010
Published: 8 December 2010
Compared to healthy people, patients with chronic kidney disease (CKD) participate less in paid jobs and social activities. The aim of the study was to examine a) the perceived autonomy, self-esteem and labor participation of patients in the pre-dialysis phase, b) pre-dialysis patients' illness perceptions and treatment perceptions, and c) the association of these perceptions with autonomy, self-esteem and labor participation.
Patients (N = 109) completed questionnaires at home. Data were analysed using bivariate and multivariate analyses.
The results showed that the average autonomy levels were not very high, but the average level of self-esteem was rather high, and that drop out of the labor market already occurs during the pre-dialysis phase. Positive illness and treatment beliefs were associated with higher autonomy and self-esteem levels, but not with employment. Multiple regression analyses revealed that illness and treatment perceptions explained a substantial amount of variance in autonomy (17%) and self-esteem (26%). The perception of less treatment disruption was an important predictor.
Patient education on possibilities to combine CKD and its treatment with activities, including paid work, might stimulate positive (realistic) beliefs and prevent or challenge negative beliefs. Interventions focusing on these aspects may assist patients to adjust to CKD, and ultimately prevent unnecessary drop out of the labor market.
Chronic renal failure, also referred to as end-stage renal disease (ESRD; chronic kidney disease (CKD) stage V), is a permanent condition which requires renal replacement therapy (peritoneal dialysis, haemodialysis or transplantation) to maintain life. At the end of 2005, approximately 1,9 million people were receiving renal replacement therapy worldwide . In January 2006, 12,038 people in the Netherlands received renal replacement therapy (737 people per million Dutch residents) . ESRD is associated with specific disease and treatment aspects. Patients with ESRD often experience physical symptoms such as fatigue, pain, cramps and itching . Furthermore, patients are extremely dependent on treatment and the treatment itself - dialysis in particular - places substantial behavioral and psychosocial demands on the patient. Neto et al.  showed that the quality of life of ESRD patients is already lowered at the initiation of dialysis treatment, which was clearly evidenced in the role limitations due to physical function and emotional function aspects. Various studies demonstrated lowered quality of life of patients with ESRD in a later phase of the dialysis treatment compared to general population samples [5–9].
Results of a literature study revealed that people with chronic renal insufficiency experience difficulties in participating in various domains of life, such as paid work, sports and other social and leisure activities . It seems in particular difficult to combine dialysis treatment with a paid job: several studies found labour participation rates around 24% in dialysis patients aged below 65 [11–13]. It is notable that people with CKD who are being prepared for renal replacement therapy (pre-dialysis patients; CKD stage IV) already experience work-related problems. Results from a Dutch study showed that patients mainly drop out the labor market before the start with dialysis treatment: at the start of the treatment only 35% of the patients, aged 18 to 64 years, had a paid job compared to 61% in the general population in 1997, the year the study was carried out . A Swedish study among pre-dialysis patients and patients on dialysis demonstrated that around 30% of the pre-dialysis patients and more than 50% of the dialysis patients reported stressors with respect to work and leisure time .
Restrictions with regard to labor participation can have serious drawbacks for a person's well-being. Work is generally good for physical and mental health and well-being, and unemployment is associated with negative health effects . Moreover, participation in general is important for feelings of autonomy and self-esteem. According to Self-Determination Theory (SDT) autonomy is one of the basic psychological needs for optimal functioning . Reis et al.  found that variations in the fulfilment of autonomy independently predicted variability in daily well-being. Factors in the person or situation that facilitate autonomy are thus expected to enhance well-being, whereas factors that detract from fulfilment of this need will undermine well-being. In the SDT view, self-esteem is a derivative or by-product of need dynamics. When the fulfilment of the need for autonomy is hindered, one's experience of self-worth is also damaged, leading to either insecure or low self-esteem . The feelings of self-worth depending on a person's experience, is referred to as state self-esteem. Research showed that high as well as stable self-esteem are associated with greater psychological well-being .
In light of these findings it is important to uncover the factors that influence feelings of autonomy, self-esteem and labor participation in patients with CKD. Socio-demographic factors (e.g. age, educational level) and medical factors (e.g. severity of the health condition, type of treatment) obviously determine the extent to which patients with CKD participate in paid jobs. Besides these factors, psychological factors may be important for labor participation and perceived autonomy as well, in particular the way patients view their illness and treatment . Braun Curtin et al.  demonstrated that employed dialysis patients did not feel limited by their health in the hours they worked or the kind of work in which they could engage. Unemployed patients on the other hand, perceived their illness as a barrier to work. These findings are important since both patient groups did not differ with respect to objective health indicators.
To what extent do pre-dialysis patients experience autonomy, and state self-esteem, and to what degree do these patients participate in the work domain?
Which perceptions do pre-dialysis patients have about their illness and treatment?
To what extent are illness perceptions and treatment perceptions of pre-dialysis patients related to perceived autonomy, state self-esteem and labor participation?
Participants and procedure
Pre-dialysis patients who were participating in the PREPARE-2 study, were invited to participate in the present cross-sectional study. PREPARE-2 is a prospective observational study started in 2004. At the end of 2006, PREPARE-2 was operating in 18 pre-dialysis outpatient clinics in community and university hospitals throughout the Netherlands. Patients with stage IV CKD (severe CKD) aged 18 years or older who were treated by a nephrologist and recently (within the previous six months) referred to pre-dialysis care were eligible for inclusion. All patients had to be suitable for renal replacement therapy. Patients with chronic transplant dysfunction were excluded from the study if the transplant was within the previous year. Clinical (medical records) and quality of life (self report) data are collected at inclusion and every six months thereafter until start of dialysis, transplantation, end of study or death, whichever occurs earliest. All patients gave written informed consent. The PREPARE-2 study was approved by the institutional review boards of all participating hospitals.
For the present study, data were collected in 2006 by means of an additional survey sent in two phases to all patients recruited at that time: in the period July-September 2006 to 123 patients and in November-December 2006 to another 62 newly recruited patients. Patients completed a paper questionnaire at home. Of the 185 patients who received the questionnaire, 109 returned the questionnaire (response rate 59%).
Perceived autonomy was assessed with three items derived from the autonomy scale of the CASP-19 . One item 'My health stops me from doing the things I want to do' (reverse scored) was used as an indicator for 'health related autonomy'. The other two items were combined on the basis of their high factor loadings on one factor (both factor loadings: 0.86, variance explained: 74%) to assess 'global autonomy' ('I can do the things that I want to do', 'I feel that I can please myself what I can do'). Items were scored on a 4-point scale (0 = never, 1 = sometimes, 2 = not so often, 3 = often). Global autonomy scores are expressed as average scores based on the two items. Higher scores on both measures signify a higher level of perceived autonomy.
State self-esteem was measured with the Current Thoughts Scale , which comprises 20 items (e.g. 'I am worried about what other people think of me' (reverse scored)). Items were rated on a 5-point scale (1 = not at all, 2 = a little bit, 3 = somewhat, 4 = very much, 5 = extremely). Scores are summed across individual ratings with higher scores representing a higher level of state self-esteem. The Cronbach's alpha for the scale in the current study was 0.86. The scale has proven to be psychometrically sound and has a high degree of construct validity .
Labor participation was defined in conformity with Statistics Netherlands (CBS), as performance of paid work for at least 12 hours per week. A full-time employment in the Netherlands consists usually of 36 working hours. It should be noted that employers in the Netherlands must pay at least 70% of the salaries of sick employees for the first two years, consequently people who are on long-term sick leave are in fact still employed.
In addition people were asked to indicate whether performing paid work was of personal importance on a 7-point scale (1 = not important at all to 7 = extremely important).
Illness perceptions were assessed using the Brief Illness Perception Questionnaire , which is a brief version of the Revised IPQ . The questionnaire includes eight items scored on an 11-point scale, ranging from 0 to 10. Each item assesses a cognitive and emotional illness representation dimension. A higher score on the eight dimensions implies greater perceived influence of the illness upon life ('consequences'), a stronger belief in a chronic time course ('timeline'), greater perceived personal control over the illness ('personal control'), greater perceived treatment control over the illness ('treatment control'), greater experience of severe symptoms as a result of the illness ('identity'), greater feelings of concern about the illness ('concern'), better understanding of the illness ('understanding') and a stronger emotional response to the illness ('emotional response'). A ninth open-ended response item assessing the patients' causal representation was not included in the study. The Brief IPQ has proven to be a reliable and valid measure of illness perceptions in a variety of illness populations .
Treatment perceptions were assessed with the Treatment Effects Questionnaire (TEQ; originally developed as the IEQ-Tx by Greenberg and Peterson ; adapted by Griva et al. ). The TEQ consists of 20 items (e.g. 'My life revolves around this treatment'), scored on an 8-point scale (0 = strongly disagree to 7 = strongly agree). Scores are summed across individual ratings with higher scores indicating greater perceived disruption from the treatment. The TEQ has been used in a study with ESRD patients . The Cronbach's alpha for the scale in the current study was 0.94.
Background characteristics included age, gender, living status (living with versus without a partner), educational level (highest level of completed education, classified as low (primary education, lower secondary and lower vocational education), moderate (intermediate secondary and intermediate vocational education) and high (higher vocational education and university)) and number of comorbid diseases (based on the presence of diabetes mellitus type 2, hypertension, cerebrovascular accident, vascular problems, ischemic heart disease, and heart failure).
Descriptive statistics were computed to describe the extent to which pre-dialysis patients experience autonomy and state self-esteem, participate in the work domain, and rate work as personally important. Relationships of the background characteristics with autonomy, state self-esteem and labor participation were assessed by use of analysis of variance (ANOVA) and Chi-square tests.
Descriptive statistics were computed to describe patients' illness and treatment perceptions. Relationships of the background characteristics with illness and treatment perceptions were assessed by means of ANOVA. Associations between illness perceptions and treatment perceptions on the one hand and autonomy, state self-esteem and labor participation on the other hand were analysed by means of Pearson's correlation coefficients and Student's t-test. Furthermore, multiple linear regression analyses were performed, using the enter method, to examine the relationship between illness and treatment perceptions on the one hand and perceived autonomy and state self-esteem on the other hand, controlling for background characteristics. Two blocks of variables were entered separately; block 1: Background variables (age, gender, educational level, number of comorbid diseases); block 2: Illness and treatment perceptions variables. To perform regression analyses, the missing values on the comorbidity variable were replaced by the mean number of comorbid diseases computed over the total study group.
Background characteristics of participating patients
Gender - N (%)
Age, mean in years (SD)
64.3 (14.9), range: 19-92
Age, in groups - N (%)
18 - 49 years
50 - 64 years
≥ 65 years
Educational level - N (%)
Living status - N (%)
Living with a partner
Living without a partner
Number of comorbid diseases, mean (SD)
1.5 (1.2), range: 0-5
Number of comorbid diseases, in groups - N (%)
No comorbid diseases
One comorbid disease
Two or more comorbid diseases
The mean global autonomy score of the total sample was 1.9 (SD = 0.8, range scores = 0-3, N = 100) and the mean score on the health related autonomy item was 1.4 (SD = 1.0, range scores = 0-3, N = 101). No significant differences in autonomy scores were found according to age, gender, educational level, living status and number of comorbid diseases.
The mean state self-esteem score of the total patient group was 78.2 (SD = 10.3, range scores = 46-98, N = 104). ANOVA analysis showed that high educated patients had higher state self-esteem compared to patients with a low and moderate educational level (F (2, 100) = 3.50, p = 0.03). No associations were found between state self-esteem and the other background characteristics.
Of the total group of patients, forty-five people were of working age (18-64 years), with a mean age of 50 years (10.7 years). Twenty-three patients (51%) performed paid work for at least 12 h per week. Patients who worked (at least 12 h per week) were working for 34.7 h per week on average (range: 20-60 h per week). The majority worked in the 'industry, mineral extraction, construction' sector (N = 4), 'services provision' sector (N = 4), 'health and welfare' sector (N = 4), and the 'commercial' sector (N = 3). Eighteen people aged 18 to 64 years (40%) were not employed (for at least 12 h per week) and the employment status of four people (9%) was unknown. Of those who were not employed, 15 people indicated that they were employed in the past (for at least 12 h per week). Most of them had worked in the 'industry, mineral extraction, construction', 'commercial' and 'health and welfare' sector (N = 12). The results of the ANOVA analysis showed that among the patients of working age, employed patients were significantly younger than unemployed patients (F (1, 39) = 4.19, p = 0.047). No significant differences were found with regard to the other background variables.
Working age patients' mean importance rating score with respect to performing paid work was 5.1 (2.4), which indicates that patients regard paid work as considerably important. Unemployed patients rated the importance of performing paid work with a mean score of 3.4 (2.3) and employed patients' mean importance score was 6.7 (0.6).
Illness and treatment perceptions
Mean scores and standard deviations of illness and treatment perceptions of pre-dialysis patients (total group)
Illness and treatment perceptions
Pearson's correlations between illness perceptions, treatment perceptions and perceived autonomy, state self-esteem (total group)
3. Personal control
4. Treatment control
8. Emotional response
9. Treatment disruption
Health related autonomy
Associations between independent and dependent variables
Differences in mean illness and treatment perceptions scores between employed and unemployed patients of working age (18-64 years)
Multiple linear regression models for the association between the independent variables and perceived global autonomy in pre-dialysis patients (total group)
Model 1 (block 1) (N = 88)
Model 2 (block 1+2) (N = 88)
Block 1: Background characteristics
Age in years
Gender (ref: male)
Educational level (ref: low)
Number of comorbid diseases
Block 2: Perceptions
F change model
Multiple linear regression models for the association between the independent variables and state self-esteem in pre-dialysis patients (total group)
Model 1 (block 1) (N = 91)
Model 2 (block 1+2) (N = 91)
Block 1: Background characteristics
Age in years
Gender (ref: male)
Educational level (ref: low)
Number of comorbid diseases
Block 2: Perceptions
F change model
The first aim of the study was to investigate the extent to which pre-dialysis patients experience feelings of autonomy and self-esteem, and participate in the work domain. Secondly, we wished to explore the content of patients' illness and treatment perceptions, and whether these perceptions are related to patients' perceived autonomy, state self-esteem and labor participation.
The mean age of the study group (64 years) and the gender distribution (64% male) corresponds with pre-dialysis patients and patients starting dialysis in the Netherlands [33, 34]. By comparing the mean scores on the autonomy measures of the total group with the answer scale, the results indicate that patients feel less autonomous because of their health condition or otherwise. In spite of this, most patients reported a high level of self-esteem. The autonomy and self-esteem levels of the pre-dialysis patients are slightly higher than the reported levels by patients on dialysis .
Looking at the mean illness and treatment perceptions of pre-dialysis patients it is noticed that patients are quite worried about their illness (M = 6.9) and believe that they themselves have rather little control over their illness (M = 4.7). To compare, patients on dialysis reported mean levels of 6.3 on the 'concern' dimension and 4.9 on the 'personal control' dimension . In a study of Broadbent et al. people with diabetes and people with asthma reported higher mean levels of personal control (M = 6.7) . Feelings of personal control are important for dialysis patients' quality of life [35, 9]. Personal control over the illness refers to the feeling that one can influence the course of the illness and one can fit the disease and treatment into daily life. In order to manage their illness pre-dialysis patients obviously are dependent on treatment. However, this does not indicate that there are no possibilities for personal control. It is of great importance that pre-dialysis patients practice self care behaviors, such as following diets and performing daily exercise in order to optimise their health condition . However, patients in this stage of the illness got the news that they have to start with renal replacement therapy in the near future, which indicates that despite of their self care activities they apparently were not able to remain sufficient renal function. This knowledge might have a negative effect on patients' personal control beliefs.
On the whole, the correlation analyses demonstrated that as patients hold more positive beliefs about their illness and their current treatment, they perceive more autonomy (both global and health related) and have a higher self-esteem. In light of these findings it is important to point out the difference between the construct of personal control and the construct of autonomy, since autonomy is often incorrectly equated with ideas of internal locus of control [37, 38]. Beliefs of personal control reflect individuals' beliefs regarding the extent to which one feels that one can control or influence an outcome, for example one's illness. However, people are autonomous when they act in accord with their authentic interests or integrated values and desires [17, 37–39]. To make the distinction more explicit, a person can experience control over carrying out a walking program, but not feel intrinsically motivated, and thus do not act in accordance with his/her own values.
The regression analyses revealed that the illness and treatment perceptions explain a substantial amount of variance in predicting both global autonomy and state self-esteem after controlling for background characteristics. These results illustrate that less perceived disruption by the treatment upon life is a significant predictor of state self-esteem. The findings furthermore suggest that less perceived impact of the treatment upon life is an important determinant of global autonomy as well. Treatment in the pre-dialysis phase in most cases includes taking pharmacotherapy and following a diet. Although these treatments are far less disruptive than dialysis treatment, the findings show that treatment already is a significant theme in this stage of the illness. Illness representations are considered to be constantly updated as new experiences and knowledge are acquired . In this transition phase of treatments, in which patients receive information on all available renal replacement therapies, it therefore can be expected that patients are more occupied with treatment in general, both their current treatment as well as their future treatment.
It should be noted that a large amount of variance remained unexplained. This indicates that other factors are of influence as well, for example the extent to which people in the patient's close environment, like the patient's partner or care providers, support the patient. Moreover, health related perceived autonomy could not be predicted by the illness perceptions and treatment perceptions. An explanation for this finding might be that patients are inclined to interpret 'health' as 'physical health'. At this stage of the illness, the renal disease - in most cases - will however not be associated with severe physical symptoms, which is also reflected by the mean score on the 'identity' dimension.
Because of the relatively old age of the study group (M = 64 years), only 45 patients (42%) were of working age (18-64 years). Fifty-one percent of the patients aged between 18 and 64 years performed paid work for at least 12 h per week, which is a higher percentage compared to dialysis patients; 24% , though considerably lower than that of the general Dutch population between the ages of 15-64 years; 65% . Thus, as suggested by Van Manen et al. , drop out of the labor market already occurs before patients start with dialysis treatment. Furthermore, the results show that, despite of their health condition, patients of working age place relatively high importance on carrying out a paid job. These findings point to importance and necessity of work related assistance in an early stage of the illness process. We wish to mention here that the average age of the working age group (18-64 years) was rather high (50 years) and 53% of the working age group was 50 years or older. To put this into perspective, in 2006, 32% of the Dutch people aged 20-64 years were 50-64 years . Notwithstanding that, our results suggest that labour participation in pre-dialysis patients is indeed lower than in the general population. Because of the small number of patients aged 18-64 years, we could not investigate the relationships between patients' perceptions of their illness and current treatment on the one hand and employment on the other hand more thoroughly. The findings, however, do show some trends: employed patients perceive their treatment as less disruptive and their illness as better controllable by self care and medical care than unemployed patients.
A limitation of this study is the replacement of the missing values on the variable comorbidity with the mean value of the total study group. Mean substitution preserves the mean of a variable's distribution; however, mean substitution typically distorts other characteristics of a variable's distribution (i.e., variance, median) . In spite of this we decided to substitute the missing values by the mean in order to be able to make maximal use of the data of all our cases. Another issue to note is the use of single-item measures in order to minimize the burden on respondents. Single-item measures are sometimes seen as less psychometrically sound than multiple-items. However, several studies show that single-item measures and their multiple counterparts are comparable [42, 43]. Moreover, Gardner et al.  demonstrate that a well-developed single item measure can be appropriate in avoiding common methods variance, which is often a problem with psychological measures that require respondent self-reports of attitudes, beliefs, perceptions, and the like. Furthermore, it is noteworthy that the present study had a cross-sectional design which means that no conclusions can be drawn regarding the causality of the observed relationships. Notwithstanding this limitation, our results suggest that the beliefs pre-dialysis patients hold about their illness and treatment are important factors for patients' sense of (global) autonomy and self-esteem. Finally, it should be noted that the study sample was rather small (N = 109), as well as the working age sample (N = 45). Consequently there was little statistical power to demonstrate relationships between perceptions and labor participation in particular. Future research should take this issue into account. It would be worthwhile to investigate these relationships once again in a larger sample of pre-dialysis patients.
In light of the findings it seems important that patients with severe CKD are educated by a multi-professional team, comprising of nephrologists, dialysis nurses as well as employment experts and social workers, on the possibilities to combine CKD and its treatment with daily activities, including work. By means of education, positive (realistic) beliefs might be stimulated and negative beliefs may be prevented or challenged. This might contribute to a greater sense of autonomy and self-esteem as well as to participation in general. This education should take place as soon as possible. Research suggests that interventions to change cognitions should focus on patients in an early stage of the illness process . The best moment to offer interventions to alter maladaptive beliefs in patients with CKD seems to be in the pre-dialysis phase (preferably even before CKD stage IV) or at the start of renal replacement therapy, in which patients are most susceptible to change. In the Netherlands, psychological support is not yet a primary area of attention in pre-dialysis care and renal care in general. It is therefore important that interventions which focus on these psychological concepts are developed .
The study was supported by a grant from the Dutch Kidney Foundation and the Institute Gak Foundation, The Netherlands. We would like to thank the nurses, dieticians and laboratory staff from the participating hospitals for the data collection. Furthermore, we would like to thank the trial nurses and data managers from the Hans Mak Institute (Naarden, The Netherlands) for data monitoring and data management.
The PREPARE-2 Study Group consists of I. Keur and R.T. Krediet, Amsterdam Medical Center, Amsterdam; H. Brulez, St Lucas Andreas Hospital, Amsterdam; C.E. Douma, VU Medical Center, Amsterdam; Y. Vermeeren and J. Barendregt, Gelre Hospital, Apeldoorn; R. Bakker, Amphia Hospital, Breda; H. Boom, Reinier de Graaf Gasthuis, Delft; E. Hoogeveen, Jeroen Bosch Hospital, Den Bosch; M. Groeneveld, Haga Hospital, The Hague; M. den Hartog and G.W. Feith, Gelderse Vallei Hospital, Ede; S. Konings, Catharina Hospital, Eindhoven; G.H. Vastenburg, Scheper Hospital, Emmen; A. Lavrijsen, Oosterschelde Hospital, Goes; J.W. Eijgenraam, Groene Hart Hospital, Gouda; C.F.M. Franssen, University Medical Center Groningen, Groningen; C.A. Verburgh, Kennemer Gasthuis, Haarlem; M.H. Hemmelder, Medical Center Leeuwarden, Leeuwarden; Y.W.J. Sijpkens, Leiden University Medical Center, Leiden; A. Schrander-van der Meer, Rijnland Hospital, Leiderdorp; S. Boorsma, Laurentius Hospital, Roermond; T. Noordzij and H. Krepel, Franciscus Hospital, Roosendaal; Y. Schrama, St. Franciscus Gasthuis, Rotterdam; C. Beerenhout and J. van Ampting, Maxima Medical Center, Veldhoven; M. Ho-dac-Pannenkeet, Zaans Medical Center, Zaandam; S.H.A. Diepeveen, Isala Klinieken, Zwolle - all in The Netherlands.
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