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Pre-Dialysis Patients ' Perceived Autonomy, Self-Esteem and Labor Participation: Associations With Illness Perceptions and Treatment Perceptions. A Cross-Sectional Study

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Jansen et al.

BMC Nephrology 2010, 11:35


http://www.biomedcentral.com/1471-2369/11/35

RESEARCH ARTICLE Open Access

Pre-dialysis patients’ perceived autonomy,


self-esteem and labor participation: associations
with illness perceptions and treatment perceptions.
A cross-sectional study
Daphne L Jansen1*, Diana C Grootendorst2, Mieke Rijken1, Monique Heijmans1, Ad A Kaptein3,
Elisabeth W Boeschoten4, Friedo W Dekker2, the PREPARE-2 Study Group

Abstract
Background: 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.
Methods: Patients (N = 109) completed questionnaires at home. Data were analysed using bivariate and
multivariate analyses.
Results: 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.
Conclusions: 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.

Background [2]. ESRD is associated with specific disease and treat-


Chronic renal failure, also referred to as end-stage renal ment aspects. Patients with ESRD often experience phy-
disease (ESRD; chronic kidney disease (CKD) stage V), sical symptoms such as fatigue, pain, cramps and itching
is a permanent condition which requires renal replace- [3]. Furthermore, patients are extremely dependent on
ment therapy (peritoneal dialysis, haemodialysis or treatment and the treatment itself - dialysis in particular
transplantation) to maintain life. At the end of 2005, - places substantial behavioral and psychosocial
approximately 1,9 million people were receiving renal demands on the patient. Neto et al. [4] showed that the
replacement therapy worldwide [1]. In January 2006, quality of life of ESRD patients is already lowered at the
12,038 people in the Netherlands received renal replace- initiation of dialysis treatment, which was clearly evi-
ment therapy (737 people per million Dutch residents) denced in the role limitations due to physical function
and emotional function aspects. Various studies demon-
strated lowered quality of life of patients with ESRD in a
* Correspondence: d.jansen@nivel.nl
1
NIVEL, Netherlands Institute for Health Services Research, P.O. Box 1568 later phase of the dialysis treatment compared to gen-
3500 BN Utrecht The Netherlands eral population samples [5-9].
Full list of author information is available at the end of the article

© 2010 Jansen et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons
Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in
any medium, provided the original work is properly cited.
Jansen et al. BMC Nephrology 2010, 11:35 Page 2 of 10
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Results of a literature study revealed that people with illness and treatment [10]. Braun Curtin et al. [11]
chronic renal insufficiency experience difficulties in par- demonstrated that employed dialysis patients did not
ticipating in various domains of life, such as paid work, feel limited by their health in the hours they worked or
sports and other social and leisure activities [10]. It the kind of work in which they could engage. Unem-
seems in particular difficult to combine dialysis treat- ployed patients on the other hand, perceived their illness
ment with a paid job: several studies found labour parti- as a barrier to work. These findings are important since
cipation rates around 24% in dialysis patients aged both patient groups did not differ with respect to objec-
below 65 [11-13]. It is notable that people with CKD tive health indicators.
who are being prepared for renal replacement therapy Patients’ beliefs about their illness are the central con-
(pre-dialysis patients; CKD stage IV) already experience cepts of the Common Sense Model (CSM), which is a
work-related problems. Results from a Dutch study self-regulation model of health threat [21,22]. This
showed that patients mainly drop out the labor market model aims to explain patients’ responses to illness from
before the start with dialysis treatment: at the start of the cognitive representations patients hold about their
the treatment only 35% of the patients, aged 18 to 64 medical condition. Five domains of illness representa-
years, had a paid job compared to 61% in the general tions have been identified: (1) the identity or label (e.g.
population in 1997, the year the study was carried out ‘renal disease’) with associated emotions (’it makes me
[14]. A Swedish study among pre-dialysis patients and afraid’) and symptoms (’tiredness’, ‘itching’); (2) timeline,
patients on dialysis demonstrated that around 30% of reflecting patients’ expectations about the duration of
the pre-dialysis patients and more than 50% of the dialy- the condition and its characteristic course (acute,
sis patients reported stressors with respect to work and chronic, or episodic), (3) cause, reflecting patients’ ideas
leisure time [15]. about how one gets the disease (e.g. by stress or bad
Restrictions with regard to labor participation can luck), (4) beliefs about the cure or controllability of the
have serious drawbacks for a person’s well-being. Work disease, and (5) patient’s expectations about the physical,
is generally good for physical and mental health and social, economic and emotional consequences of the dis-
well-being, and unemployment is associated with ease. The CSM predicts that these cognitions are
negative health effects [16]. Moreover, participation in directly related to coping and via coping to adaptive
general is important for feelings of autonomy and self- outcomes such as quality of life. Furthermore, as treat-
esteem. According to Self-Determination Theory (SDT) ment constitutes a major part of the experience of any
autonomy is one of the basic psychological needs for chronic illness, it should be anticipated that patients
optimal functioning [17]. Reis et al. [18] found that var- also develop their beliefs regarding treatment or engage
iations in the fulfilment of autonomy independently pre- in treatment appraisals and evaluations that complement
dicted variability in daily well-being. Factors in the illness perceptions [23-25]. Recent studies found rela-
person or situation that facilitate autonomy are thus tionships between dialysis patients’ illness representa-
expected to enhance well-being, whereas factors that tions and well-being [9], mortality [26], and dialysis and
detract from fulfilment of this need will undermine renal transplant patients’ representations about their
well-being. In the SDT view, self-esteem is a derivative illness and treatment and health related quality of life
or by-product of need dynamics. When the fulfilment of [27]. Our research team recently conducted a study
the need for autonomy is hindered, one’s experience of among patients on dialysis [12] and the results showed
self-worth is also damaged, leading to either insecure or that patients’ illness and treatment perceptions signifi-
low self-esteem [19]. The feelings of self-worth depend- cantly contributed to the explained variance in both per-
ing on a person’s experience, is referred to as state ceived autonomy and state self-esteem, after controlling
self-esteem. Research showed that high as well as stable for socio-demographic and clinical characteristics.
self-esteem are associated with greater psychological Beliefs about greater personal control over the disease,
well-being [20]. less perceived impact of the illness and treatment on
In light of these findings it is important to uncover daily life, and less concern about the illness were impor-
the factors that influence feelings of autonomy, self- tant determinants. Contrary to our expectations, no sig-
esteem and labor participation in patients with CKD. nificant associations were found between illness
Socio-demographic factors (e.g. age, educational level) perceptions, treatment perceptions and labor participa-
and medical factors (e.g. severity of the health condition, tion. This may be caused by the fact that the working
type of treatment) obviously determine the extent to age group (18-64 years) of dialysis patients was small
which patients with CKD participate in paid jobs. (N = 62). An additional explanation might be that
Besides these factors, psychological factors may be patients who are on dialysis do not value a paid job as
important for labor participation and perceived auton- that important anymore, i.e. performing paid work
omy as well, in particular the way patients view their does not contribute to their feelings of autonomy and
Jansen et al. BMC Nephrology 2010, 11:35 Page 3 of 10
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self-esteem. Patients in this stage of the illness are aware Measures


of the fact that they are seriously ill, and therefore other Perceived autonomy
life domains might have become more important. The Perceived autonomy was assessed with three items
aim of the present study was to investigate the associa- derived from the autonomy scale of the CASP-19 [28].
tions of the illness perceptions and treatment percep- One item ‘My health stops me from doing the things I
tions with perceived autonomy, self-esteem and labor want to do’ (reverse scored) was used as an indicator for
participation among pre-dialysis patients. It is expected ‘health related autonomy’. The other two items were
that the associations with employment are stronger in combined on the basis of their high factor loadings on
this group of patients compared to patients on dialysis, one factor (both factor loadings: 0.86, variance
since paid work is presumably more important and rele- explained: 74%) to assess ‘global autonomy’ (’I can do
vant to patients in an earlier phase of the illness. The the things that I want to do’, ‘I feel that I can please
following research questions were formulated: myself what I can do’). Items were scored on a 4-point
scale (0 = never, 1 = sometimes, 2 = not so often, 3 =
1) To what extent do pre-dialysis patients experience often). Global autonomy scores are expressed as average
autonomy, and state self-esteem, and to what degree scores based on the two items. Higher scores on both
do these patients participate in the work domain? measures signify a higher level of perceived autonomy.
2) Which perceptions do pre-dialysis patients have Sate self-esteem
about their illness and treatment? State self-esteem was measured with the Current
3) To what extent are illness perceptions and treat- Thoughts Scale [29], which comprises 20 items (e.g. ‘I
ment perceptions of pre-dialysis patients related to am worried about what other people think of me’
perceived autonomy, state self-esteem and labor (reverse scored)). Items were rated on a 5-point scale (1
participation? = not at all, 2 = a little bit, 3 = somewhat, 4 = very
much, 5 = extremely). Scores are summed across indivi-
Methods dual ratings with higher scores representing a higher
Participants and procedure level of state self-esteem. The Cronbach’s alpha for the
Pre-dialysis patients who were participating in the scale in the current study was 0.86. The scale has pro-
PREPARE-2 study, were invited to participate in the ven to be psychometrically sound and has a high degree
present cross-sectional study. PREPARE-2 is a prospec- of construct validity [29].
tive observational study started in 2004. At the end of Labor participation
2006, PREPARE-2 was operating in 18 pre-dialysis out- Labor participation was defined in conformity with Sta-
patient clinics in community and university hospitals tistics Netherlands (CBS), as performance of paid work
throughout the Netherlands. Patients with stage IV for at least 12 hours per week. A full-time employment
CKD (severe CKD) aged 18 years or older who were in the Netherlands consists usually of 36 working hours.
treated by a nephrologist and recently (within the pre- It should be noted that employers in the Netherlands
vious six months) referred to pre-dialysis care were eli- must pay at least 70% of the salaries of sick employees
gible for inclusion. All patients had to be suitable for for the first two years, consequently people who are on
renal replacement therapy. Patients with chronic trans- long-term sick leave are in fact still employed.
plant dysfunction were excluded from the study if the In addition people were asked to indicate whether per-
transplant was within the previous year. Clinical (medi- forming paid work was of personal importance on a
cal records) and quality of life (self report) data are 7-point scale (1 = not important at all to 7 = extremely
collected at inclusion and every six months thereafter important).
until start of dialysis, transplantation, end of study or Illness perceptions
death, whichever occurs earliest. All patients gave writ- Illness perceptions were assessed using the Brief Illness
ten informed consent. The PREPARE-2 study was Perception Questionnaire [30], which is a brief version
approved by the institutional review boards of all parti- of the Revised IPQ [31]. The questionnaire includes
cipating hospitals. eight items scored on an 11-point scale, ranging from 0
For the present study, data were collected in 2006 by to 10. Each item assesses a cognitive and emotional ill-
means of an additional survey sent in two phases to all ness representation dimension. A higher score on the
patients recruited at that time: in the period July-Sep- eight dimensions implies greater perceived influence of
tember 2006 to 123 patients and in November-Decem- the illness upon life (’consequences’), a stronger belief in
ber 2006 to another 62 newly recruited patients. a chronic time course (’timeline’), greater perceived per-
Patients completed a paper questionnaire at home. Of sonal control over the illness (’personal control’), greater
the 185 patients who received the questionnaire, 109 perceived treatment control over the illness (’treatment
returned the questionnaire (response rate 59%). control’), greater experience of severe symptoms as a
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result of the illness (’identity’), greater feelings of autonomy and state self-esteem on the other hand, con-
concern about the illness (’concern’), better understanding trolling for background characteristics. Two blocks of
of the illness (’understanding’) and a stronger emotional variables were entered separately; block 1: Background
response to the illness (’emotional response’). A ninth variables (age, gender, educational level, number of
open-ended response item assessing the patients’ causal comorbid diseases); block 2: Illness and treatment per-
representation was not included in the study. The Brief ceptions variables. To perform regression analyses, the
IPQ has proven to be a reliable and valid measure of missing values on the comorbidity variable were
illness perceptions in a variety of illness populations [30]. replaced by the mean number of comorbid diseases
Treatment perceptions computed over the total study group.
Treatment perceptions were assessed with the Treat-
ment Effects Questionnaire (TEQ; originally developed Results
as the IEQ-Tx by Greenberg and Peterson [32]; adapted Patients
by Griva et al. [27]). The TEQ consists of 20 items (e.g. Characteristics of the total study group are outlined in
‘My life revolves around this treatment’), scored on an Table 1. Approximately two-thirds of the patients were
8-point scale (0 = strongly disagree to 7 = strongly male. Patients had a mean age of 64 years (SD = 14.9
agree). Scores are summed across individual ratings with years). The patients’ number of comorbid conditions
higher scores indicating greater perceived disruption ranged from 0 to 5, with 46% of the patients suffering
from the treatment. The TEQ has been used in a study from two or more comorbid conditions. Differences
with ESRD patients [27]. The Cronbach’s alpha for the between the responders and the non-responders with
scale in the current study was 0.94. respect to age, gender, and number of comorbid diseases
Background variables were examined and no significant differences were
Background characteristics included age, gender, living found.
status (living with versus without a partner), educational
level (highest level of completed education, classified as
low (primary education, lower secondary and lower Table 1 Background characteristics of participating
vocational education), moderate (intermediate secondary patients
and intermediate vocational education) and high (higher Total group
vocational education and university)) and number of Gender - N (%)
comorbid diseases (based on the presence of diabetes Male 69 (64)
mellitus type 2, hypertension, cerebrovascular accident, Female 39 (36)
vascular problems, ischemic heart disease, and heart Unknown 1
failure). Age, mean in years (SD) 64.3 (14.9),
range: 19-92
Statistical analysis Age, in groups - N (%)
Descriptive statistics were computed to describe the 18 - 49 years 21 (20)
extent to which pre-dialysis patients experience auton- 50 - 64 years 24 (22)
omy and state self-esteem, participate in the work ≥ 65 years 63 (58)
domain, and rate work as personally important. Rela- Unknown 1
tionships of the background characteristics with auton- Educational level - N (%)
omy, state self-esteem and labor participation were Low 46 (43)
assessed by use of analysis of variance (ANOVA) and Moderate 45 (43)
Chi-square tests. High 15 (14)
Descriptive statistics were computed to describe Unknown 3
patients’ illness and treatment perceptions. Relationships Living status - N (%)
of the background characteristics with illness and treat- Living with a partner 69 (64)
ment perceptions were assessed by means of ANOVA. Living without a partner 38 (36)
Associations between illness perceptions and treatment Unknown 2
perceptions on the one hand and autonomy, state self- Number of comorbid diseases, 1.5 (1.2),
mean (SD) range: 0-5
esteem and labor participation on the other hand were
Number of comorbid diseases, in groups - N (%)
analysed by means of Pearson’s correlation coefficients
No comorbid diseases 23 (24)
and Student’s t-test. Furthermore, multiple linear regres-
One comorbid disease 28 (30)
sion analyses were performed, using the enter method,
Two or more comorbid diseases 44 (46)
to examine the relationship between illness and treat-
Unknown 14
ment perceptions on the one hand and perceived
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Perceived autonomy physical symptoms from their illness (identity) and


The mean global autonomy score of the total sample believe their illness affects their daily life to a rather
was 1.9 (SD = 0.8, range scores = 0-3, N = 100) and the large extent (consequences). On the other hand, patients
mean score on the health related autonomy item was experience rather little disruption of daily life from their
1.4 (SD = 1.0, range scores = 0-3, N = 101). No signifi- current treatment (in most cases medication and diet
cant differences in autonomy scores were found accord- restrictions). Patients are fairly concerned about their ill-
ing to age, gender, educational level, living status and ness, however, do not believe strongly that their illness
number of comorbid diseases. affects them emotionally. In addition, patients believe
that they understand their illness rather well, and con-
State self-esteem sider their illness to be positively influenced by the
The mean state self-esteem score of the total patient treatment they receive (treatment control), yet believe
group was 78.2 (SD = 10.3, range scores = 46-98, N = that they themselves have rather little control over their
104). ANOVA analysis showed that high educated illness (personal control) (Table 2). ANOVA analysis
patients had higher state self-esteem compared to showed that patients in the different age groups differed
patients with a low and moderate educational level with respect to their beliefs about the timeline of the
(F (2, 100) = 3.50, p = 0.03). No associations were found illness (Welch F (2, 29.35) = 4.36, p = 0.02). Games-
between state self-esteem and the other background Howell post hoc-tests, however, did not point to signifi-
characteristics. cant differences between two or more groups in particular.
High educated patients believed that their emotional state
Labor participation was less affected by their illness compared to low and
Of the total group of patients, forty-five people were of moderate educated patients (F (2, 100) = 3.31, p = 0.04).
working age (18-64 years), with a mean age of 50 years No differences were found with respect to gender, living
(10.7 years). Twenty-three patients (51%) performed status and number of comorbid diseases.
paid work for at least 12 h per week. Patients who The Pearson’s correlation coefficients between the ill-
worked (at least 12 h per week) were working for 34.7 h ness perceptions and treatment perceptions are depicted
per week on average (range: 20-60 h per week). The in Table 3. As patients experience a large impact from
majority worked in the ‘industry, mineral extraction, the illness on daily life, they believe that their treatment
construction’ sector (N = 4), ‘services provision’ sector disrupts their life, experience more physical complaints
(N = 4), ‘health and welfare’ sector (N = 4), and the from the illness, believe they have little personal control
‘commercial’ sector (N = 3). Eighteen people aged 18 to over the illness, are worried about their illness and feel
64 years (40%) were not employed (for at least 12 h per that their illness affects them emotionally. As patients
week) and the employment status of four people (9%) experience disruption from the treatment, they experi-
was unknown. Of those who were not employed, 15 ence more consequences and symptoms from the illness,
people indicated that they were employed in the past feel that their illness cannot be controlled by medical
(for at least 12 h per week). Most of them had worked treatment, are concerned about their illness and experi-
in the ‘industry, mineral extraction, construction’, ‘com- ence a large emotional impact due to the illness.
mercial’ and ‘health and welfare’ sector (N = 12). The
results of the ANOVA analysis showed that among the Table 2 Mean scores and standard deviations of illness
patients of working age, employed patients were signifi- and treatment perceptions of pre-dialysis patients (total
cantly younger than unemployed patients (F (1, 39) = group)
4.19, p = 0.047). No significant differences were found N Range Range M (SD)
with regard to the other background variables. scale scores
Working age patients’ mean importance rating score Illness and treatment
with respect to performing paid work was 5.1 (2.4), perceptions
which indicates that patients regard paid work as con- Consequences 105 0-10 0-10 6.7 (2.5)
siderably important. Unemployed patients rated the Timeline 104 0-10 0-10 9.3 (1.7)
importance of performing paid work with a mean score Personal control 103 0-10 0-10 4.7 (2.9)
of 3.4 (2.3) and employed patients’ mean importance Treatment control 103 0-10 0-10 6.8 (2.9)
score was 6.7 (0.6). Identity 103 0-10 0-10 5.2 (2.9)
Concern 104 0-10 0-10 6.9 (2.7)
Illness and treatment perceptions Understanding 102 0-10 0-10 7.3 (3.1)
Mean illness perceptions scores indicate that pre-dialysis Emotional response 104 0-10 0-10 5.0 (3.1)
patients believe that their illness is chronic (timeline). Treatment disruption 94 0-140 0-125 38.8
(25.9)
Furthermore, patients experience a moderate amount of
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Table 3 Pearson’s correlations between illness perceptions, treatment perceptions and perceived autonomy, state self-
esteem (total group)
1 2 3 4 5 6 7 8 9
1. Consequences
2. Timeline .11
3. Personal control -.33** -.05
4. Treatment control -.17 .06 .44***
5. Identity .65*** .07 -.18 -.16
6. Concern .59*** .09 -.30** -.20* .49***
7. Understanding .13 -.01 .18 .21* .23* .03
8. Emotional response .58*** .04 -.20* -.14 .44*** .62*** .24*
9. Treatment disruption .45*** .01 -.10 -.23* .47*** .45*** .12 .56***
Global autonomy -.36*** .00 .22* .29** -.37*** -.30** -.01 -.37*** -.42***
Health related autonomy -.44*** -.12 .16 .15 -.34*** -.28** -.02 -.24* -.21
State self-esteem -.39*** .04 .20* .21* -.37*** -.44*** .03 -.49*** -.48***
* p < .05; * * p < .01; *** p < .001

Personal and treatment control beliefs are positively the variance in global autonomy (Table 5). In this
interrelated and both associated with less concern. model, fewer comorbid diseases were significantly asso-
ciated with higher levels of global autonomy. Adding the
Associations between independent and dependent illness and treatment perceptions to the model (block 2)
variables the percentage of explained variance significantly
Pearson’s correlation coefficients between illness percep- increased to 20%. None of the included variables
tions and treatment perceptions and perceived auton- reached the level of significance, though less perceived
omy and state self-esteem showed that stronger positive disruption from treatment was close to significance (p =
beliefs about the illness and treatment are related to 0.054). The results of the regression analysis with health
higher levels of perceived autonomy and state self- related perceived autonomy being the dependent vari-
esteem (Table 3). Within the working age group, the able, demonstrated that the background variables and
associations between the illness and treatment represen- illness and treatment perceptions variables did not
tations and labor participation were investigated by explain any substantial amount of variance (adjusted R2
means of Student’s t-test and the results demonstrated = 3,5%; data not shown).
no significant associations (Table 4). Finally, we performed regression analysis with state
Regression analysis was conducted with global auton- self-esteem being the dependent variable. The results
omy being the dependent variable. The results showed showed that the background variables explained 5% of
that the background variables accounted for only 3% of the variance. In the second model, in which the illness
and treatment perceptions were added, the percentage
Table 4 Differences in mean illness and treatment of explained variance increased by 26%, to 31%, with
perceptions scores between employed and unemployed less perceived disruption from the treatment being the
patients of working age (18-64 years) only significant predictor of state self-esteem (Table 6).
Employed Unemployed
N M (SD) N M (SD) t Df P Discussion
Consequences 22 6.7 (2.3) 18 6.8 (2.9) .129 38 0.9 The first aim of the study was to investigate the extent
Timeline 22 8.5 (2.6) 18 8.6 (2.3) .071 38 0.9 to which pre-dialysis patients experience feelings of
Personal control 21 4.9 (2.8) 18 3.7 (3.2) -1.229 37 0.23 autonomy and self-esteem, and participate in the work
Treatment 21 6.8 (2.0) 18 5.6 (3.5) -1.331 26.072 0.20 domain. Secondly, we wished to explore the content of
control patients’ illness and treatment perceptions, and whether
Identity 22 5.1 (2.9) 18 5.4 (3.2) .365 38 0.72 these perceptions are related to patients’ perceived
Concern 22 7.0 (2.8) 18 7.0 (2.7) .051 38 0.9 autonomy, state self-esteem and labor participation.
Understanding 21 7.1 (3.0) 18 7.1 (3.2) -.032 37 0.9 The mean age of the study group (64 years) and the
Emotional 22 5.6 (2.7) 18 4.5 (3.2) -1.123 38 0.27 gender distribution (64% male) corresponds with pre-
response dialysis patients and patients starting dialysis in the
Treatment 21 34.7 (22.9) 17 44.3 (31.3) 1.095 36 0.28 Netherlands [33,34]. By comparing the mean scores on
disruption
the autonomy measures of the total group with the
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Table 5 Multiple linear regression models for the answer scale, the results indicate that patients feel less
association between the independent variables and autonomous because of their health condition or other-
perceived global autonomy in pre-dialysis patients (total wise. In spite of this, most patients reported a high level
group) of self-esteem. The autonomy and self-esteem levels of
Model 1 (block 1) Model 2 (block 1+2) the pre-dialysis patients are slightly higher than the
(N = 88) (N = 88)
Beta Beta
reported levels by patients on dialysis [12].
Looking at the mean illness and treatment perceptions
Block 1: Background
characteristics of pre-dialysis patients it is noticed that patients are
Age in years .14 .02 quite worried about their illness (M = 6.9) and believe
Gender (ref: male) .01 - .04 that they themselves have rather little control over their
Educational level (ref: illness (M = 4.7). To compare, patients on dialysis
low) reported mean levels of 6.3 on the ‘concern’ dimension
Moderate - .06 - .07 and 4.9 on the ‘personal control’ dimension [12]. In a
High .03 - .07 study of Broadbent et al. people with diabetes and peo-
Number of comorbid - .27* - .17 ple with asthma reported higher mean levels of personal
diseases control (M = 6.7) [30]. Feelings of personal control are
Block 2: Perceptions important for dialysis patients’ quality of life [35,9]. Per-
Consequences - .06 sonal control over the illness refers to the feeling that
Personal control .08 one can influence the course of the illness and one can
Treatment control .12 fit the disease and treatment into daily life. In order to
Identity - .22 manage their illness pre-dialysis patients obviously are
Concern .19 dependent on treatment. However, this does not indi-
Emotional response - .14 cate that there are no possibilities for personal control.
Treatment disruption - .25 It is of great importance that pre-dialysis patients prac-
Adjusted R2 0.03 0.20** tice self care behaviors, such as following diets and per-
F change model 1.51 3.52** forming daily exercise in order to optimise their health
condition [36]. However, patients in this stage of the ill-
ness got the news that they have to start with renal
Table 6 Multiple linear regression models for the replacement therapy in the near future, which indicates
association between the independent variables and state that despite of their self care activities they apparently
self-esteem in pre-dialysis patients (total group) were not able to remain sufficient renal function. This
Model 1 (block 1) Model 2 (block 1+2) knowledge might have a negative effect on patients’ per-
(N = 91) (N = 91)
Beta Beta sonal control beliefs.
On the whole, the correlation analyses demonstrated
Block 1: Background
characteristics that as patients hold more positive beliefs about their ill-
Age in years .18 .07 ness and their current treatment, they perceive more
Gender (ref: male) - .06 - .08 autonomy (both global and health related) and have a
Educational level (ref: higher self-esteem. In light of these findings it is impor-
low) tant to point out the difference between the construct of
Moderate .00 - .04 personal control and the construct of autonomy, since
High .18 .09 autonomy is often incorrectly equated with ideas of
Number of comorbid - .16 - .05 internal locus of control [37,38]. Beliefs of personal con-
diseases trol reflect individuals’ beliefs regarding the extent to
Block 2: Perceptions which one feels that one can control or influence an
Consequences .07 outcome, for example one’s illness. However, people are
Personal control .18 autonomous when they act in accord with their authen-
Treatment control - .06 tic interests or integrated values and desires [17,37-39].
Identity - .18 To make the distinction more explicit, a person can
Concern - .11 experience control over carrying out a walking program,
Emotional response - .13 but not feel intrinsically motivated, and thus do not act
Treatment disruption - .31* in accordance with his/her own values.
2
Adjusted R 0.05 0.31*** The regression analyses revealed that the illness and
F change model 1.88 5.57*** treatment perceptions explain a substantial amount of
* p < .05; * * p < .01; *** p < .001 variance in predicting both global autonomy and state
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self-esteem after controlling for background characteris- lower than in the general population. Because of the
tics. These results illustrate that less perceived disrup- small number of patients aged 18-64 years, we could
tion by the treatment upon life is a significant predictor not investigate the relationships between patients’ per-
of state self-esteem. The findings furthermore suggest ceptions of their illness and current treatment on the
that less perceived impact of the treatment upon life is one hand and employment on the other hand more
an important determinant of global autonomy as well. thoroughly. The findings, however, do show some
Treatment in the pre-dialysis phase in most cases trends: employed patients perceive their treatment as
includes taking pharmacotherapy and following a diet. less disruptive and their illness as better controllable by
Although these treatments are far less disruptive than self care and medical care than unemployed patients.
dialysis treatment, the findings show that treatment A limitation of this study is the replacement of the
already is a significant theme in this stage of the illness. missing values on the variable comorbidity with the
Illness representations are considered to be constantly mean value of the total study group. Mean substitution
updated as new experiences and knowledge are acquired preserves the mean of a variable’s distribution; however,
[22]. In this transition phase of treatments, in which mean substitution typically distorts other characteristics
patients receive information on all available renal repla- of a variable’s distribution (i.e., variance, median) [41].
cement therapies, it therefore can be expected that In spite of this we decided to substitute the missing
patients are more occupied with treatment in general, values by the mean in order to be able to make maximal
both their current treatment as well as their future use of the data of all our cases. Another issue to note is
treatment. the use of single-item measures in order to minimize the
It should be noted that a large amount of variance burden on respondents. Single-item measures are some-
remained unexplained. This indicates that other factors times seen as less psychometrically sound than multiple-
are of influence as well, for example the extent to which items. However, several studies show that single-item
people in the patient’s close environment, like the measures and their multiple counterparts are comparable
patient’s partner or care providers, support the patient. [42,43]. Moreover, Gardner et al. [42] demonstrate that a
Moreover, health related perceived autonomy could not well-developed single item measure can be appropriate in
be predicted by the illness perceptions and treatment avoiding common methods variance, which is often a
perceptions. An explanation for this finding might be problem with psychological measures that require
that patients are inclined to interpret ‘health’ as ‘physical respondent self-reports of attitudes, beliefs, perceptions,
health’. At this stage of the illness, the renal disease - in and the like. Furthermore, it is noteworthy that the pre-
most cases - will however not be associated with severe sent study had a cross-sectional design which means that
physical symptoms, which is also reflected by the mean no conclusions can be drawn regarding the causality of
score on the ‘identity’ dimension. the observed relationships. Notwithstanding this limita-
Because of the relatively old age of the study group (M tion, our results suggest that the beliefs pre-dialysis
= 64 years), only 45 patients (42%) were of working age patients hold about their illness and treatment are impor-
(18-64 years). Fifty-one percent of the patients aged tant factors for patients’ sense of (global) autonomy and
between 18 and 64 years performed paid work for at self-esteem. Finally, it should be noted that the study
least 12 h per week, which is a higher percentage com- sample was rather small (N = 109), as well as the working
pared to dialysis patients; 24% [12], though considerably age sample (N = 45). Consequently there was little statis-
lower than that of the general Dutch population tical power to demonstrate relationships between percep-
between the ages of 15-64 years; 65% [40]. Thus, as sug- tions and labor participation in particular. Future
gested by Van Manen et al. [14], drop out of the labor research should take this issue into account. It would be
market already occurs before patients start with dialysis worthwhile to investigate these relationships once again
treatment. Furthermore, the results show that, despite of in a larger sample of pre-dialysis patients.
their health condition, patients of working age place
relatively high importance on carrying out a paid job. Conclusions
These findings point to importance and necessity of In light of the findings it seems important that patients
work related assistance in an early stage of the illness with severe CKD are educated by a multi-professional
process. We wish to mention here that the average age team, comprising of nephrologists, dialysis nurses as well
of the working age group (18-64 years) was rather high as employment experts and social workers, on the possi-
(50 years) and 53% of the working age group was 50 bilities to combine CKD and its treatment with daily
years or older. To put this into perspective, in 2006, activities, including work. By means of education, positive
32% of the Dutch people aged 20-64 years were 50-64 (realistic) beliefs might be stimulated and negative beliefs
years [40]. Notwithstanding that, our results suggest that may be prevented or challenged. This might contribute
labour participation in pre-dialysis patients is indeed to a greater sense of autonomy and self-esteem as well as
Jansen et al. BMC Nephrology 2010, 11:35 Page 9 of 10
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to participation in general. This education should take The authors have had no involvements that might raise the question of bias
in the work reported or in the conclusions, implications, or opinions stated.
place as soon as possible. Research suggests that inter- The results presented in this paper have not been published previously in
ventions to change cognitions should focus on patients in whole or part, except in abstract format.
an early stage of the illness process [44]. The best
Received: 19 May 2010 Accepted: 8 December 2010
moment to offer interventions to alter maladaptive beliefs Published: 8 December 2010
in patients with CKD seems to be in the pre-dialysis
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