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Rheumatology Advance Access published online on September 24, 2008
Rheumatology, doi:10.1093/rheumatology/ken359
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© The Author 2008. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Working ability in relation to disease severity, everyday occupations and well-being in women with limited systemic sclerosis

G. Sandqvist1,2, A. Scheja1 and M. Eklund2,3

1Department of Rheumatology, Lund University Hospital 2Department of Health Sciences, Division of Occupational Therapy and Gerontology, Lund University, Lund and 3Faculty of Health and Society, Malmoe University, Malmoe, Sweden.

Correspondence to: G. Sandqvist, Department of Rheumatology, Lund University Hospital, SE-221 85 Lund, Sweden. E-mail: gunnel.sandqvist{at}skane.se


   Abstract
Top
 Abstract
Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 
Objective. To investigate how women with SSc and varying degrees of working ability differed regarding disease severity, everyday occupations and well-being. Working ability was operationalized according to the degree of sick leave.

Methods. Forty-four women of working age with lcSSc were assessed regarding sociodemographic characteristics, disease severity including organ manifestation, perceived physical symptoms, hand function, and satisfaction with everyday occupations, self-rated health and well-being.

Results. The subjects formed three groups with regard to reduction in working capacity. Twenty-one women (48%) had no sick leave, 15 women (34%) were on partial sick leave and eight women (18%) were temporarily on full-time sick leave or had a full disability pension. There were no statistically significant differences concerning sociodemographics between the groups. Women without sick leave had less physically demanding jobs (P = 0.026), and the hypothesis that working ability reflects lower disease severity was confirmed regarding dexterity grip force and perceived fatigue and breathlessness (P < 0.05). Greater working ability was associated with better capacity to perform activities of daily life (P < 0.01), greater satisfaction with occupations (P < 0.01), better well-being (P < 0.001) and better health (P < 0.001).

Conclusions. Fifty per cent of the women were restricted in their working ability; the lower the working ability, the lower their perceived well-being. This emphasizes the need for further research into the factors that promote working ability and the development of suitable methods to improve working ability.

KEY WORDS: Working ability, Disease severity, Well-being, Systemic sclerosis, Women


   Introduction
Top
 Abstract
 Introduction
Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 
Work is a major component of life for most adults, and the worker role strongly influences the balance of activities of daily life (ADL) [1]. Working ability is a multifactorial phenomenon, depending on individual factors such as physical capacity and psychological characteristics, as well as the demands of work [2].

In SSc, knowledge concerning working ability and the factors affecting it is very scarce. SSc is a rare autoimmune disease, characterized by microvascular injury and excessive fibrosis of the skin and internal organs [3]. SSc can influence all aspects of an individual's life [4, 5], including the performance of everyday occupations [6]. Everyday occupations can be classified as self-care, domestic chores, work/studies and leisure activities [7]. Also in lcSSc, which is more common and constitutes a milder form of the disease, performance of everyday occupations, satisfaction with those occupations and well-being are affected [8, 9].

SSc affects predominantly women (female/male ~ 4/1) [10]. This study included only women in order to avoid the confounding factor of gender. Thus, the aim of this study was to investigate how groups of women with lcSSc and varying degrees of working ability differed regarding disease severity, sociodemographic variables and everyday occupations. Working ability was operationalized according to the degree of sick leave. It was hypothesized that a lower reduction in working hours among the women was associated with (i) a less demanding job; (ii) lower disease severity; (iii) better capacity to perform everyday occupations; (iv) greater satisfaction with those occupations; and (v) better well-being.


   Patients and methods
Top
 Abstract
 Introduction
 Patients and methods
Results
 Discussion
 Acknowledgements
 References
 
Subjects
The individuals considered for this study were: women between 20 and 60 yrs of age, living in the southern region of Sweden and fulfilling the ACR criteria for SSc [11] and its limited form [12]. Sixty-two women matched the criteria. Of these, 14 women declined and four did not complete all the assessments. Thus, the study was based on 44 women with lcSSc. The median of the women's age was 52 yrs (range 24–60 yrs), and the median duration of disease was 8 yrs (range 2–44 yrs). Thirty-nine women lived with a partner, and 19 had children living at home. Eight women had compulsory education, 24 had upper secondary school and 12 university education. The study was approved by the regional ethical review board. Written and oral information explaining the study was given and the patients gave their consent in writing.

Instruments
The data collection comprised sociodemographic characteristics, assessments of disease severity including: manifestations in organs, perceived physical symptoms and hand function. Furthermore, performance of, and satisfaction with, everyday occupations, self-rated health and well-being were assessed by self-rating instruments.

Assessment of organ manifestation
Skin thickness was determined by the modified Rodnan skin score, using a scale from 0 (normal thickness) to 3. The scores for all 17 anatomic sites were summed [13]. Pulmonary function, determined by vital capacity, was measured with a Bernstein spirometer, and the carbon monoxide diffusing capacity (DLCO) was assessed with the single-breath test. ESR was used as a measure of the inflammatory status.

Perceived symptoms
The symptoms RP, general stiffness, pitting scars or ulcers, shortness of breath, general pain and fatigue were reported by the subjects, using a visual analogue scale (VAS) consisting of a 100-mm line with the end points ‘no problem at all’ and ‘worst possible problem’.

Hand function
Mobility was assessed by means of the nine-item Hand Mobility in Scleroderma (HAMIS) test. Items are graded on a scale of 0–3, where 0 corresponds to normal function. The scores are summed for each hand separately [14, 15].

Finger dexterity was assessed with the Purdue pegboard test that consists of five subtests [16, 17]. The right and left hand subtest was used in this study.

Grip force was measured with the Grippit instrument [18]. In this study, the average value over 10 s was used.

Assessment of everyday occupations
ADL capacity was estimated by means of the scleroderma Functional Score (FS). The FS consists of 11 daily activities associated with self-care and household chores. The scale is graded from 0 (no problem) to 3 (not possible) [19]. The performance of, and satisfaction with, occupations were assessed by means of the Satisfaction with Daily Occupations (SDO) instrument [20], which is an interview-based screening instrument, comprising nine questions regarding the occupational areas of work, leisure, domestic chores and self-care. Each item consists of a two-part question. First, the individual answers whether or not he or she has performed the occupation. Second, the person rates his or her satisfaction with the occupation. The scale used for the satisfaction questions is graded from 1 (could not be worse) to 7, (could not be better). The SDO has shown good internal consistency and construct validity for individuals with SSc [21].

Well-being
Well-being was operationalized as general satisfaction with life and self-rated health. Life satisfaction was assessed by means of the Manchester Short Assessment of Quality of Life (MANSA) test [22]. MANSA includes an item providing information on the individual's satisfaction with life in general, as well as items addressing satisfaction within specific life domains. The MANSA instrument has been shown to have good internal consistency and satisfactory construct validity for SSc [21].

The first item of the MOS 36-item short-form health survey (SF-36) was used as a measure of self-rated health [23, 24].

Data analysis
The mean value of both hands was used in all hand function tests. The answers regarding the first part of the SDO were summed to give the number of occupations performed, and scores from the second part were summarized into a satisfaction scale. The responses regarding the MANSA were analysed both on the item level and presented as a mean score for the whole MANSA.

The study group was divided into three subgroups on the basis of the degree of sick leave: (i) no sick leave; (ii) partial sick leave; and (iii) full-time sick leave or disability pension. The subgroups were compared with regard to sociodemographic variables and physical job demands, by means of the chi-squared test. Non-parametric test was used since the data was rather skewed and the sample small. The Jonckheere–Terpstra test was used to determine whether there were any linear trends between the subgroups concerning disease severity, everyday occupations and well-being. This test retains more statistical power than the Kruskal–Wallis test.


   Results
Top
 Abstract
 Introduction
 Patients and methods
 Results
Discussion
 Acknowledgements
 References
 
Working ability
Twenty-one women had no sick leave, 15 were on partial sick leave (25–50% of their ordinary working day), two were temporarily on full-time sick leave and six had been granted a full disability pension.

In the group without sick leave, 11 women were office clerks, seven were child care workers, two were shop assistants and one was a teacher. In the group on partial sick leave, six women were working in various forms of nursing, four were office clerks, three were shop assistants and two were teachers. The two women who were temporarily on full-time sick leave were a cleaner and a shop assistant. For further analyses, the participants were categorized into two groups based on the physical demands of the work: (i) less physically demanding jobs, including office clerks and teachers; and (ii) more physically demanding jobs, including various forms of nursing, child care workers, shop assistants and cleaners. Women without sick leave had less physically demanding jobs (P = 0.026). Women with full disability pension or on full-time sick leave were excluded from this analysis.

Sociodemographic factors, disease severity, everyday occupations and well-being in women with different degrees of working ability
Sociodemographic factors
There were no statistically significant differences between the groups concerning age, living with a partner, having children living at home or level of education.

Disease severity
There was a tendency towards a linear trend between the groups regarding less severe disease, as estimated with DLCO and ESR (P = 0.07). However, greater working ability was associated with better dexterity and grip force and less perceived fatigue and breathlessness (Table 1).


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  		TABLE 1. Organ manifestations, perceived physical symptoms and hand function in the three subgroups with various degrees of working ability

 
Everyday occupations
Greater working ability was associated with better ADL capacity, occupational performance within more occupational areas and greater satisfaction with occupations (Table 2).


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  		TABLE 2. Everyday occupations and well-being in the three subgroups with various degrees of working ability

 
Well-being
Greater working ability was related to better satisfaction with life and better self-rated health (Table 2). Regarding the separate items in MANSA, greater working ability was accompanied by better physical health and psychological health (P < 0.001 and P = 0.003, respectively), and better satisfaction with leisure activities and sex life (P = 0.025 and P = 0.037, respectively).


   Discussion
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
Acknowledgements
 References
 
Our results show that 50% were restricted in their working ability. These results are similar to those of Eberhardt et al. [25], who recently reported that 40% of the individuals with long-standing RA had reduced working hours. Sociodemographic factors were not associated with working ability in the present study, which could be explained by the rather high degree of homogeneity concerning age and disease duration in the study group, and the fairly small sample.

Our first hypothesis that greater working ability was related to less physically demanding jobs was supported by the results. Allaire et al. [26] emphasized hand use as one aspect of physical job demands, especially since hand use has increased with the introduction of computers at work. The importance of hand function in working ability was in the present study clearly supported by the fact that greater working ability was associated with better grip force and dexterity. Contrary to our expectations, no significant linear trend was found between the groups concerning organ manifestations, except concerning skin score. The finding that women with greater working ability had worse skin scores than women with lower working ability could mean that the thickness of the of skin was easier to compensate for in comparison with symptoms that influenced the women's overall physical capacity. The trend in the relationship between working ability and DLCO and ESR points to a possibility that these disease severity differences may contribute to some of the associations between working ability and others. However, the present study was carried out on a rather small, homogeneous sample, making it impossible to detect subtle differences.

The third hypothesis that women with better working ability would have a better capacity to perform occupations and be more satisfied with daily occupations was clearly confirmed. This agrees with findings regarding individuals with RA, showing that limitation of activity was one of the predictors of working disability [25, 27].

The final hypothesis that women with greater working ability would report better perceived health and well-being was also strongly supported by the results. Satisfaction with physical health especially distinguished the three working ability groups. However, the positive association between working ability and well-being cannot be interpreted in terms of causation. Better well-being may promote working ability, but it may also be that maintaining a paid job improves well-being.

Some methodological considerations of our study must be mentioned. The study comprised solely women with lcSSc, and the results are only valid for this specific group. Since lcSSc is more common than the diffuse form, we deemed it suitable to restrict our study to these patients at this stage. The small number of participants means that a certain degree of caution must be applied when interpreting the results, and future studies should include more participants and focus also on individuals with diffuse SSc and males.

In conclusion, the results of the present study underscore the need to raise awareness concerning work disability in individuals with SSc. Although the women in the present study had a rather mild general disability, 50% were restricted in their working ability. Symptoms such as fatigue, breathlessness and impaired hand function had the greatest negative influence on working ability. This suggests that the modification of working routines, allowing more frequent breaks and the adaptation of tasks could prevent these individuals from having to take sick leave. However, the present study, which to our knowledge is the only study so far focusing on working ability in SSc, has only illustrated some aspects of this complex issue. More research is needed to fully elucidate risk factors related to working disability in SSc. The ultimate goal is to gain knowledge that can be used to develop suitable vocational rehabilitation.

Formula


   Acknowledgements
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
References
 
Funding: Grants were obtained from the Lund University Hospital and the Faculty of Medicine at Lund University.

Disclosure statement: The authors have declared no conflicts of interest.


   References
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 

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Submitted 16 January 2008; revised version accepted 1 August 2008.
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This Article
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