Role overload, pain and physical dysfunction in early rheumatoid or undifferentiated inflammatory arthritis in Canada

Arthritis is a prevalent chronic illness in Canada. In 2008, 4.2 million (16%) Canadians 15 years or older had arthritis. Arthritis was the second most prevalent chronic condition among women and the third among men, preceded only by back pain and hypertension. Prevalence of arthritis increased with age, yet, 58% of patients were younger than 65 years. Arthritis was almost twice as prevalent in women as in men, regardless of age [1].

Disability is difficulty functioning due to structural/functional bodily impairment, activity limitation (difficulty executing tasks such as climbing stairs) or participation restriction (difficulty getting involved in life situations) [2]. In 2001, 3.75% of Canadians reported disability participating in societal roles such as paid work and family due to arthritis [1]. Arthritis prevalence was higher among the separated or divorced compared to those living with spouse. This could stem from the strain arthritis puts on family dynamics and/or economics with the ultimate consequence of separation. Regarding paid employment, arthritis patients had to reduce working hours, change jobs, undergo workplace modifications, work from home, or ultimately quit [3‐5].

The large societal costs of arthritis can be minimized through early treatment. There exists a crucial “window of opportunity” when disease course can be altered. Arthritis medications include analgesics, non-steroidal anti-inflammatory drugs, corticosteroids, disease modifying anti-rheumatic drugs such as methotrexate and the newest biologicals such as the tumor necrosis factor alpha inhibitor adalimumab. Biologicals and disease modifying anti-rheumatic drugs effectively prevent joint damage, limit disease progression and even achieve full remission thus enhancing the overall quality of life and enabling patients fulfill their social roles such as maintaining employment [6, 7].

Arthritis refers to more than a hundred joint and surrounding tissue rheumatic disorder. Inflammatory arthritis is joint inflammation due to immune disruption. It includes rheumatoid arthritis (chronic destructive synovitis) and seronegative arthritis. Early inflammatory arthritis (EIA) has no agreed upon definition but is used to describe any inflammatory arthritis condition of certain maximum duration, ranging from 16 weeks to 36 months [8]. Undifferentiated arthritis is one which does not fulfill any specific set of disease classification criteria. Little is known about the incidence and prevalence of EIA. Early treatment prevents the transition of undifferentiated arthritis to classified rheumatoid arthritis or early rheumatoid arthritis to the fully blown one [8]. In Canada, early detection of arthritis is attempted through a self-administered arthritis screening tool used by patients suffering early symptoms of musculoskeletal disorders [9].

A social role is a position held in a social institution. Examples of social institutions are the family and the economic system. Position holders in these institutions, also known as role occupants or actors, are expected to behave according to certain standards. Role occupancy describes the number of positions people hold across various social institutions. Examples of roles highly salient and hence co-occupied by most people are paid work, personal relationships such as marriage, parenting and friendships, caregiving, household as well as leisure activities such as travel or sports. Occupying multiple social roles is likely to cause role stress, because of the limited nature of human energy, according to the role strain hypothesis. Role overload is a form of role stress that reflects, mainly, time constraints. Role balance, on the other hand, refers to the smart distribution of resources across diverse roles giving rise to well being and sense of accomplishment rather than role strain [10‐13].

Participation in social roles continues to be highly valued by people with arthritis despite their suffering [14]. However, this is not an easy task. Occupying multiple social roles was associated with higher levels of role stress; role conflict and role overload, less role balance and hence less psychological well being in women with rheumatoid arthritis [15]. Multiple social roles also increased the fatigue related negative emotions experienced by younger women with rheumatoid arthritis [16]. Achieving role balance between inflammatory/osteoarthritis, paid work and personal life roles proved stressful. Role overload was evident as arthritis, paid work or both compromised the time available for personal life activities eventually leading to role loss; leisure activities being the first to give up [17]. Individuals with osteoarthritis were low to moderately satisfied with their performance and the time they spent in roles they considered highly salient [18]. Arthritis patients rated higher and hence were more protective of their involvement in the labor force and social relationships as compared to physical leisure or household activities [17, 18].

Disease factors can also play a role in arthritis. Pain was perceived by inflammatory and osteoarthritis patients as an aggravating factor for role conflict [17]. Greater pain was associated with less satisfaction with role performance and time spent on roles in osteoarthritis [18]. Pain limited activities such as getting in and out of a car which in turn restricted participation in social and leisure tasks [19].

The present study centers on the concept of role overload [20]. The role overload construct was developed in the social sciences and was researched in relation to global health measures but rarely to specific disease processes. Role overload evaluates the pressure from the viewpoint that the time available is too short for all roles to be performed effectively. It thus detects how overwhelmed, rushed and uncomfortable people might feel towards their life responsibilities. Moreover, the role overload construct captures the overall/cumulative effect of all roles without having to individually assess them.

Although the body of evidence relating role difficulties to arthritis is growing, sufficiently missing is the possible association between disease variables and perceptions of role overload. In an attempt to fill this void, the present study examined the relationship between pain, physical functioning and role overload. We postulated that worse disease outcomes such as more intense pain and compromised physical functioning will be associated with higher role overload in patients with EIA.

Past literature indicating role overload in arthritis patients occupying multiple social roles [15, 16] encouraged us to examine the same in our sample. Our approach was to reduce to the three social roles basic to most arthritis patients as supported by the literature [17, 18]; namely paid employment and the social relationships spouse and parent.

The majority of participation literature in arthritis focused on longstanding illness populations [15]. In the present study we stress the early stage of the illness when the major disruption to social roles occurs, adjusting the roles and accommodating the illness are most needed and interventions proved most effective [21].

The current study investigated both biological (pain and physical functioning) and psychosocial (role occupancy and role overload) factors in arthritis. Its aim was to contribute towards securing full participation and role balance to individuals burdened with arthritis.

Our sample consisted of 104 patients with a mean age of 56 years. The majority (70.2%) was female living with spouse and 27.9% had children under 18 years old living at home. Almost half (49.0%) of the participants were engaged in paid work. The average yearly household income was distributed as follows: 38.5% earned less than $60 000, 41.3% earned $60 000 or more and 17.3% refused to answer. Regarding education level, 45.2% of the participants had high school education or less and 53.8% had college, university or post-graduate education. Participants in this study had a mean duration of illness of 7.61 months. Of our patients, 79.8% were diagnosed with undifferentiated and 20.2% with rheumatoid arthritis.

The overall McEAR population had an average age of 56.18 (14.69) years, 67.7% were female, 62.2% lived with spouse and 26.9% had children living at home. Average disease duration was 6.75 (6.65) months. These descriptive characteristics were not significantly different from the group that participated in this study.

The mean number of social roles occupied by our patients was 1.45 roles. Of our patients, 16 (15.4%) occupied all three measured roles; namely, spouse, parent and paid worker, 34 (32.7%) occupied two of the three roles, 35 (33.7%) occupied one role and 19 (18.3%) did not occupy any of the specified social roles.

Means, standard deviations of the means and frequencies of all study variables are described in Table 1.

The level of role overload (ROS) was not significantly correlated to any of the demographic variables measured, namely, age, sex, living with spouse, having children under 18 years old in the same household, paid employment, yearly household income or education level. Similarly, role overload did not significantly correlate with the number of social roles or disease duration. However, ROS did significantly correlate with MPQ total pain. The relation was in the positive direction. This means that the more intense is the pain the higher the role overload (or vice versa). ROS also correlated with SF-36 physical functioning (Table 2). This time the correlation was in the negative direction implying greater overload with lower physical functioning abilities.

Table 3 shows the multiple linear regression model for the dependent variable role overload, controlling for relevant sociodemographic variables. The overall model and the independent variable indicating physical functioning were significant, adjusted R² = 0.114, F(df = 8,82) = 2.453, p = 0.020. However, the independent variables of age, sex, living with spouse, having children under 18 living at home, having paid work as well as the disease variables disease duration and pain were not significant.

According to the results of the present investigation, the hypothesis that, in EIA, role overload and the disease variables pain and physical dysfunction are interrelated is confirmed. Univariate correlation analysis showed that, poorer physical functioning and severer pain are associated with higher role overload. Multivariate regression analysis revealed that worse physical functioning and role overload stay related no matter what the potential confounding variables. In other words, the present study found that patients do feel they do not have enough time and/or energy to get their social roles fulfilled. Pain and physical dysfunction were related to this sensed role overload, however, in which way is yet to be determined. It could be that pain and physical dysfunction are making role overload worse or it could well be that they are getting worse by role overload. Role overload was previously seen to correlate to illness severity in women with rheumatoid arthritis [15]. However, the study by Coty & Wallston (2008) differed from ours in that the number of social roles occupied by patients was positively related to role stress; role conflict and role overload. That is, rheumatoid arthritis women who reported occupying more roles also reported higher levels of role stress. In our study, however, engaging in multiple social roles was not significantly associated to role overload. The discrepancy could be due to the larger numbers of roles included in the other study (nine roles; wife, mother, paid worker, unpaid worker at home, caregiver of spouse or parent, student, volunteer, friend, or grandparent), a mean of 5.8 roles. This is in contrast to the three typical social roles selected for our study; namely spouse, parent and/or paid worker, and a mean of 1.45 roles carried out by our patients. Other explanations of the discrepancy in results could relate to gender where all their patients were women while ours were 30% men with the consequent differences in sex roles, and the chronic duration of illness in the population they studied; mean disease duration of six years as compared to 7.61 months in ours.

Our results are also in agreement with Gignac et al (2012) who found role overload to be evident in individuals with inflammatory or osteoarthritis [17]. Similar to our findings, the authors reported pain, fatigue, symptom unpredictability and disability to interfere with work and personal roles. Ultimately, many patients were forced out of some of their roles, especially socializing, leisure and household activities. The authors warned that role overload may eventually lead to role loss, an alarming consequence. The study by Gignac et al. was qualitative while we measured our associations in a quantitative way.

Gignac et al (2012) found arthritis patients to be highly protective of their paid employment even at the expense of their own health [17]. In addition, Gignac et al (2008) found that social relationships are identified by osteoarthritis patients as most important [18]. Patients were relatively more satisfied with their performance and the time they spent in those social relations than physical leisure, travel, and vacation. The lack of association between role overload and number of roles in our study might thus be a reflection of the esteem our patients had for these three important roles (spouse, parent, paid worker) that compensated for or masked the strain they might have been producing.

The present study highlights the burden that impaired physical functioning, pain and distress around timely fulfillment of social role demands can pose on patients in the early months of their journey with arthritis. This implies interrelatedness between patients’ physical health and participation in valued life activities which calls for a multifaceted approach regarding the care for patients with arthritis. Not only are the physical symptoms of arthritis to be managed, but also the emotional distress attendant upon the pain and functional impairment associated with the disease. Rheumatologists could be invited to include social role participation issues in their global care of patients and/or refer to allied health care professionals for further assessment on an individualized basis. Gignac et al. (2012) actually found that increasing instrumental support helped role overloaded arthritis patients meet their role demands [17]. Our study’s emphasis on the very early stage of the disease points towards the necessity of addressing role overload from the onset of illness when approaching patients starting a struggle with inflammatory arthritis.

Michael Starr, MD³, Michel Gagné, MD³, Michael Stein, MD³, Harb Kang, MD³, Morton Kapusta, MD³, François Couture, MD³, Mary-Ann Fitzcharles, MD³, Bruce Garfield, MD³, Henri A. Ménard, MD³, Laeora Berkson, MD², Christian Pineau, MD³, Andrzej Gutkowski, MD³, Michel Zummer, MD⁴, Jean-Pierre Mathieu, MD⁴, Suzanne Mercille, MD⁴, Sophie Ligier, MD⁴, Jiri Krasny, MD³, Carole Bertrand, MD⁴, Sai Yan Yuen, MD⁴, Jan Schulz, MD³.

²Division of Rheumatology, Sir Mortimer B. Davis – Jewish General Hospital

³Division of Rheumatology, McGill University, Montreal, Quebec, Canada

⁴Service de rhumatologie, Hôpital Maisonneuve-Rosemont, Montreal, Quebec, Canada