Do spouses know how much fatigue, pain, and physical limitation their partners with rheumatoid arthritis experience? Implications for social support.

Abstract

To determine whether perceptions of clinical manifestations (fatigue, pain, and physical limitation) of rheumatoid arthritis (RA) differ between spouses and their partners with RA, and to determine whether the differences are associated with the perception of beneficial and problematic spousal social support.
English-speaking adults with RA of ≥ 6 months' duration and their spouses (n = 222 couples) completed standardized questionnaires for fatigue, pain, physical limitation, beneficial spousal support, and problematic spousal support. Spouses completed questionnaires based on their perception of their partner with RA. Agreement scores for fatigue, pain, and physical limitation were calculated by subtracting spouse scores from the scores of the partner with RA. Agreement levels were defined a priori: agreement (within ± one-half of a minimum clinically important difference [MCID] unit), overestimator (< one-half an MCID), and underestimator (> one-half an MCID). Separate hierarchical linear regression models were used to measure the association between beneficial support and problematic support after adjusting for RA duration, physical health, sex, educational level, relationship duration, and satisfaction.
Response rate for couples was 82%. Relative to participants with RA, spouses overestimated fatigue (26%), pain (29%), and physical limitation (39%), and underestimated fatigue (11%), pain (17%), and physical limitation (34%). After statistically controlling for demographic, disease, and psychosocial variables, participants with RA whose spouses underestimated fatigue received more problematic support (R(2) = 3.7%, P = 0.002), as did those whose spouses underestimated or overestimated physical limitation (R(2) = 3.4%, P = 0.017).
Persons with RA perceived more problematic spousal support when their spouse underestimated fatigue, or underestimated or overestimated physical limitation levels.

Full text

Page 1

Do Spouses Know How Much Fatigue, Pain,
and Physical Limitation Their Partners
With Rheumatoid Arthritis Experience?
Implications for Social Support
ALLEN J. LEHMAN,1DANIEL D. PRATT,2ANITA DELONGIS,2JOHN B. COLLINS,2KAM SHOJANIA,2
BARRY KOEHLER,2ROBERT OFFER,2AND JOHN M. ESDAILE3
Objective. To determine whether perceptions of clinical manifestations (fatigue, pain, and physical limitation) of
rheumatoid arthritis (RA) differ between spouses and their partners with RA, and to determine whether the differences
are associated with the perception of beneficial and problematic spousal social support.
Methods. English-speaking adults with RA of >6 months’ duration and their spouses (n ? 222 couples) completed
standardized questionnaires for fatigue, pain, physical limitation, beneficial spousal support, and problematic spousal
support. Spouses completed questionnaires based on their perception of their partner with RA. Agreement scores for
fatigue, pain, and physical limitation were calculated by subtracting spouse scores from the scores of the partner with RA.
Agreement levels were defined a priori: agreement (within ? one-half of a minimum clinically important difference
[MCID] unit), overestimator (< one-half an MCID), and underestimator (> one-half an MCID). Separate hierarchical
linear regression models were used to measure the association between beneficial support and problematic support after
adjusting for RA duration, physical health, sex, educational level, relationship duration, and satisfaction.
Results. Response rate for couples was 82%. Relative to participants with RA, spouses overestimated fatigue (26%), pain
(29%), and physical limitation (39%), and underestimated fatigue (11%), pain (17%), and physical limitation (34%). After
statistically controlling for demographic, disease, and psychosocial variables, participants with RA whose spouses
underestimated fatigue received more problematic support (R2? 3.7%, P ? 0.002), as did those whose spouses
underestimated or overestimated physical limitation (R2? 3.4%, P ? 0.017).
Conclusion. Persons with RA perceived more problematic spousal support when their spouse underestimated fatigue, or
underestimated or overestimated physical limitation levels.
INTRODUCTION
One of the greatest challenges that persons with rheuma-
toid arthritis (RA) report is coping with varying periods
and intensities of fatigue and pain (1,2). Social support for
those with RA is a potentially modifiable psychosocial
factor impacting fatigue, pain, and disability. Beneficial
(positive) support links to improved physical and psycho-
logical health (3–7), including reduction in pain and dis-
ability 5 years after baseline assessment (3,4). Problematic
(negative) support (e.g., lack of empathy, criticism), how-
Presented by Dr. Lehman in partial fulfillment of the re-
quirements for a PhD degree, University of British Colum-
bia, Vancouver, British Columbia, Canada.
Dr. Lehman’s work was supported by the Canadian Insti-
tutes of Health Research Doctoral Research award, the Ca-
nadian Arthritis Network Graduate Student award, the
Michael Smith Foundation for Health Research Graduate
Student award, and the Pfizer Fellowship in Arthritis
Research.
1Allen J. Lehman, PhD: Simon Fraser University, and The
Arthritis Research Centre of Canada, Vancouver, British
Columbia, Canada;2Daniel D. Pratt, PhD, Anita DeLongis,
PhD, John B. Collins, PhD, Kam Shojania, MD, FRCPC,
Barry Koehler, MD, FRCPC, Robert Offer, MD, FRCPC: Uni-
versity of British Columbia, Vancouver, Canada;3John M.
Esdaile, MD, MPH, FRCPC, FRCHA: University of British
Columbia and The Arthritis Research Centre of Canada,
Vancouver, British Columbia, Canada.
Dr. Shojania has received consultancy fees, speaking fees,
and/or honoraria (less than $10,000 each) from Roche Can-
ada, Bristol-Myers Squibb Canada, Abbott Canada, and
Schering Canada.
Address correspondence to Allen J. Lehman, PhD, Arthri-
tis Research Centre of Canada, 895 West 10th Avenue,
Vancouver, British Columbia V5Z 1L7, Canada. E-mail:
alehman@arthritisresearch.ca.
Submitted for publication March 13, 2009; accepted in
revised form August 10, 2010.
Arthritis Care & Research
Vol. 63, No. 1, January 2011, pp 120–127
DOI 10.1002/acr.20330
© 2011, American College of Rheumatology
ORIGINAL ARTICLE
120

Page 2

ever, is associated with deleterious health outcomes in RA
(6–8). The effects of problematic support on health are
independent of the favorable influences of beneficial sup-
port (6,7).
Persons with arthritis frequently report that their
spouses have limited understanding of their illness, yet
they most frequently turn to them for support (9). Little
research exists on predictors of support for those with RA.
Lacking an understanding of RA and its impact on those
affected presumably impairs the ability to provide optimal
support matching the needs of the person with RA. For
example, if spouses do not recognize that their partners
are experiencing high levels of fatigue, they may be un-
supportive or provide remarks construed by the person
with RA as overly critical. Consequently, spouses may
offer insufficient support to minimize challenges in coping
with RA. The stress support or optimal matching hypoth-
esis holds that support received from others to deal with
a stressful event, when matched with the demands of the
particular stressor, better predicts positive health out-
comes (10–12). Research has yet to contrast the percep-
tions of people with RA with those of their spouses and to
analyze how the differing perceptions of disease impact
may be associated with beneficial or problematic social
support.
We are not aware of any investigations of couple con-
cordance on perceptions of fatigue in RA, and only a few
published studies have examined concordance between
participants and their spouses on perceptions of pain or
physical function in RA (13,14) and osteoarthritis (OA)
(15,16). Several definitions for concordance have been
used. Some studies have defined concordance as the per-
ception scores of people with RA and their spouses being
perfectly equal on a physical function questionnaire (13).
It is, however, unreasonable to expect spouses to assess
the same health domain identically, and small differences
may have little meaning. Other studies have assessed
health outcomes in persons with cancer or musculoskele-
tal pain, along with the perceptions of their spouses, and
have used the lack of any significant between-group aver-
ages to define concordance (17,18). Still others have de-
fined concordance as ?1 point (10 cm) on a numerical
rating scale or visual analog scale (16,17). And yet another
study used raw difference scores not accounting for direc-
tion of discordance (14). More innovative approaches to
defining concordance are required to allow assessment of
couple concordance levels (i.e., overestimation, agree-
ment, underestimation), identification of their relationship
to health outcomes, and identification of clinical implica-
tions for the development of interventions to improve
health outcomes.
The objectives of our study were to determine whether
perceptions of the clinical manifestations of RA (fatigue,
pain, and physical limitation) differ between spouses and
their partners living with the disease, and to determine
whether differences in perceptions associate with spousal
support. We hypothesized that, after adjusting for differ-
ences in demographic, psychosocial, and disease factors,
concordance between persons with RA and their spouses
on perceptions of RA, compared with spouses’ underesti-
mation and overestimation, would associate with more
beneficial and less problematic spousal support.
PATIENTS AND METHODS
Participants and procedure. Research was in compli-
ance with the Helsinki Declaration and approval was
granted by the University of British Columbia ethics board.
People living with RA were included if they met the in-
clusion criteria: 1) reported being diagnosed with RA by a
physician, 2) had lived with RA for ?6 months, 3) both the
participant with RA and the partner/spouse (spouse) were
?19 years of age, 4) both members of the couple provided
informed consent, and 5) the couple had lived together for
?12 months. Couple status was defined as married or
maintaining a common-law relationship. Those excluded
were unable to comprehend written English. Participants
were recruited from the metro Vancouver area of British
Columbia via postings in rheumatologists’ offices, as well
as nationwide via electronic advertisements with patient
advocacy groups. Postings invited couples to share RA
experiences.
Interested persons requested questionnaires for them-
selves and their spouse; participants were screened via
telephone or e-mail to determine eligibility. To reduce
missing data, research staff examined all returned ques-
tionnaires for unanswered questions and contacted partic-
ipants via telephone to complete the information. Each
couple member was instructed to independently complete
and mail standardized questionnaires assessing the fa-
tigue, pain, and physical limitation of the participant with
RA. Spouses were asked to complete questionnaires based
on their perception of their partner with RA. Persons with
RA reported beneficial and problematic spousal support.
The participants with RA and their spouses responded
based on experiences in the preceding week. The question-
naire included items about physical health, relationship
satisfaction, and comorbidities. Completion of question-
naires took ?35 minutes. Couples’ names were entered
into lottery draws for prizes valued between $50 and $500.
Measures. Beneficial and problematic spousal support.
Spousal support received by the partner with RA was
assessed with a scale previously designed and validated
specifically for people with RA (6). On it, 16 items assess
beneficial support (e.g., Does your spouse boost your spir-
its; give you advice if you want it?) and 4 items assess
problematic support (e.g., Does your spouse find it hard to
understand the way you feel?). Responses to questions
ranged from 1 to 5, where 1 ? never and 5 ? almost
always. Items were summed and an average score was
calculated for both beneficial and problematic support
(higher scores reflected greater levels of beneficial or prob-
lematic support). Cronbach’s alpha for the beneficial sup-
port scale showed excellent internal consistency (? ?
0.94). Cronbach’s alpha for the problematic support scale
evidenced good internal consistency (? ? 0.85).
Fatigue. The 16 items of the Multidimensional Assess-
ment of Fatigue scale were used to assess fatigue and
degree of interference in daily activities (e.g., How severe
Spousal Concordance on Fatigue, Pain, and Physical Limitation in RA121

Page 3

is the fatigue? To what degree has fatigue interfered
with your ability to do household chores; work?) (19).
Cronbach’s alpha for the scale showed excellent internal
consistency (? ? 0.93) and the measure has high concur-
rent validity with other mood and fatigue scales (20).
Spouses completed identical Multidimensional Assess-
ment of Fatigue questions reworded to reflect their percep-
tions of the fatigue level of their partner with RA; Cron-
bach’s alpha showed acceptable internal consistency
(? ? 0.74).
Pain. An 11-point numerical rating scale was used to
assess RA pain in the previous week (21). The scale ranges
from 0 to 10, where 0 ? no pain and 10 ? extreme pain.
The spouses completed an identical scale but worded in
the context of their perception of their partner’s pain level
in the preceding week.
Physical limitation. The Disabilities of the Arm, Shoul-
der, and Hand (DASH) outcome questionnaire was used to
assess multidimensional aspects of physical limitation
(22). The DASH assesses a range of physical challenges
experienced by people with RA (e.g., Ability to open a
tight jar? Wash your back? Participate in social activities?).
Responses ranged from 1 to 5, where 1 ? no difficulty
and 5 ? unable to do. Total scores range from 0 to 100,
where 0 ? no disability and 100 ? most severe disability.
Cronbach’s alpha showed good internal consistency
(? ? 0.86). The spouses of persons with RA completed
DASH questions that were identical except for being
worded in the context of their perception of their part-
ner’s physical limitation level in the preceding week
(? ? 0.82).
Sociodemographic and clinical variables. The sex of
persons with RA was coded female ? 0 and male ? 1. The
highest level of education for the participant with RA was
scored from 1 ? elementary school through 8 ? graduate
or postgraduate training. The duration of the couple’s re-
lationship was reported by the person with RA and scored
in years. RA duration was scored according to years living
with a physician-confirmed diagnosis of RA.
General physical health. The general physical health of
participants with RA was assessed with the physical
health component summary score on the Short Form 12
health survey (23). Respondents reported their level of
physical health in general (ranging from poor to excellent)
and the extent to which their physical health limited
their ability to perform specific tasks or social activities.
Standardized scores on the 12-item instrument range from
0 to 100, with higher scores representing better health
(? ? 0.89).
Relationship satisfaction. RA participants’ spousal rela-
tionship satisfaction was assessed with the 7-item Rela-
tionship Assessment Scale (24). The items assess how well
a spouse meets one’s needs, how well the relationship
compares with others’, and how well expectations about
the relationship have been met. The items also assess
relationship regrets, level of love for the spouse, and rela-
tionship problems. Final scores range from 1 to 5, where
1 ? low and 5 ? high. The Relationship Assessment Scale
has demonstrated moderate to high correlations with mar-
ital satisfaction across age-diverse samples (25). Cron-
bach’s alpha for the scale showed excellent internal con-
sistency (? ? 0.93).
Statistical analysis. Bivariate analyses were conducted
to measure the relationship between predictor variables
and outcome variables. Factors relating to social support
outcomes based on previous research and theory (demo-
graphic variables of the person with RA [sex, education,
relationship duration, general physical health], disease-
related variables [duration], and psychosocial variables
[relationship satisfaction]) were treated as statistical con-
trols in the multivariate analyses (26–28).
To calculate concordance between the perception of fa-
tigue, pain, and physical limitation of the participants
with RA and their spouses, difference scores were calcu-
lated by subtracting spouse scores from those of the person
with RA. Published minimum clinically important differ-
ence (MCID) scores for fatigue of 18.7 (29), for pain of 1.97
(21), and for physical limitation of 10 (30) in persons with
RA aided in defining spouse concordance levels a priori.
As shown in Figure 1, couple concordance levels included
agreement (agreement score within ? one-half of an MCID
unit), spouse overestimator (agreement score ? one-half of
an MCID unit), and spouse underestimator (agreement
score ? one-half of an MCID unit). The MCID is the small-
est difference in score on an outcome measure that pa-
tients perceive as beneficial. It is typically used as a crite-
Figure 1. Distribution of couple concordance levels on A, fatigue, B, pain, and C, physical limitation (n ? 222 couples).
122 Lehman et al

Page 4

rion to assess clinical efficacy (31). Given the limitations of
perfect agreement defining concordance, ? one-half MCID
scores were used pragmatically to aid in defining concor-
dance (i.e., couple difference score equivalent to the span
of 1 MCID unit was considered spouse agreement). For
example, persons with RA with a pain numerical rating
scale score of 7 whose spouses reported a score of 6, 7, or,
8 were considered in concordance; a spouse reporting a
score of 9 or 10 was an overestimator; and a spouse report-
ing a score of ?5 was an underestimator of pain (Figure 1).
For the multivariate analyses, couple concordance lev-
els were trichotomized into spouse underestimator (0 ver-
sus 1), agreement (0 versus 1), or spouse overestimator
(0 versus 1) for each of fatigue, pain, and physical limita-
tion. Couple agreement served as the reference category.
Others have adopted a similar statistical approach in ex-
amining spousal underestimation and overestimation
(15,16). Spouse underestimator and overestimator vari-
ables for fatigue, pain, and physical limitation were en-
tered as step 2 in separate hierarchical linear regression
models to measure association with beneficial and prob-
lematic support, after controlling for sex, education level,
disease duration, physical health, relationship duration,
and relationship satisfaction of the person with RA in step
1. The 2-tailed alpha level remained at P ? 0.05 for all
hypothesis testing as the tests reflected an examination of
1 model (i.e., couple concordance on perception of RA
clinical manifestations associated with more beneficial
and less problematic support).
RESULTS
Sample characteristics. Of the 290 people who con-
tacted the researchers, 15 were ineligible due to non-RA
diagnosis (n ? 8), language (n ? 3), not cohabitating (n ?
Table 1. Demographics of participants with RA and their spouses (n ? 222 couples)*
Person with RASpouse
Women, %
Age, years
Median education level completed
Employment status, %†
Full time
Part time
Homemaker
Retired
Disability pension
Unemployed
Student
Other/did not specify
White, %
?1 comorbidity, %
Relationship duration, years
?1 child, %
RA duration, years
General physical health score
Relationship satisfaction score
Problematic support score
Beneficial support score
73 28
60 ? 14 60 ? 14
Technical/trade schoolTechnical/trade school
22
12
11
37
15
1
1
2
92
59
42
6
6
41
1
1
1
4
93
51
31 ? 16
82
12 ? 11
36.2 ? 10
4.3 ? 0.8
2.3 ? 0.7
3.8 ? 0.8
31 ? 16
82
–
–
–
–
–
* Values are the mean ? SD unless otherwise indicated. RA ? rheumatoid arthritis.
† Percentage totals do not add up to 100% due to rounding errors.
Table 2. Bivariate correlations and descriptive statistics of participants with rheumatoid arthritis (RA; n ? 222)
12345678
1. Sex
2. Education
3. Physical health
4. Years married
5. RA duration, years
6. Relationship satisfaction
7. Beneficial support
8. Problematic support
Mean ? SD
–
?0.17*
0.12
0.18†
?0.08
0.04
0.08
0.01
–
–
0.19†
?0.25†
?0.02
0.10
0.07
?0.01
–
–
?0.15*
?0.12
0.16*
0.20†
?0.14*
36.2 ? 10.0
–
0.12
0.06
0.10
0.05
31 ? 16
–
0.15*
0.11
?0.07
12 ? 11
–
0.70†
?0.34†
4.3 ? 0.8
–
?0.33
3.8 ? 0.8
–
2.3 ? 0.7
* Correlation is significant at the 0.05 level (2-tailed).
† Correlation is significant at the 0.01 level (2-tailed).
Spousal Concordance on Fatigue, Pain, and Physical Limitation in RA123

Page 5

3), or being single (n ? 1). The response rate of eligible
couples requesting and returning questionnaires (both the
person with RA and the spouse) within a week of each
other was 82% (n ? 226 of 275). Of those, 4 couples were
excluded due to significant amounts of missing data.
Among the 222 couples completing the study, 217 were in
heterosexual relationships; the average age was 60 years,
ranging from 21 to 88 years; on average, the participant
with RA had lived with RA for more than a decade; and the
couples were in long-term relationships with high levels of
relationship satisfaction (mean score 4.3, range 2–5) (Ta-
bles 1 and 2).
Concordance between spouses on perception of RA par-
ticipants’ fatigue, pain, and physical limitation ranged
from approximately one-quarter to two-thirds. Figure 1
illustrates the range of concordance, with the center area
between negative one-half an MCID value and positive
one-half an MCID value reflecting couple agreement,
and the areas to the left and right of center reflecting
spouse overestimators and underestimators, respectively.
Of the spouses, 38% disagreed with their RA partners’
perception of fatigue; of these, 26.1% of spouses overesti-
mated fatigue and 11.4% underestimated fatigue. Nearly
half the spouses (46%) lacked concordance with their
partner on perception of pain (29% overestimated and
16.7% underestimated). Approximately three-quarters of
the spouses lacked concordance with the person with
RA on perceptions of physical limitation (39.2% overesti-
mated and 33.9% underestimated).
Association of concordance for fatigue with social sup-
port. In the bivariate analyses, no significant relationship
existed between spousal agreement levels for fatigue and
the perceptions of the persons with RA about beneficial
spousal support. Analyses, however, revealed that when
spouses underestimated the fatigue of the person with
RA, the person with RA was likely to perceive greater
problematic spousal support (Table 3). Conversely, when
spouses overestimated the fatigue of the person with RA,
the person with RA was likely to perceive less problematic
spousal support (see Table 3).
In the multivariate analyses accounting for the effects of
demographic, disease-related, and psychosocial variables
in step 1 of the regression model (12.6% of the variance)
(Table 4), persons with RA whose spouses underestimated
their level of fatigue reported greater problematic spousal
support than those whose spouses were in concordance or
overestimated their level of fatigue (? ? 0.133, P ? 0.05,
Table 3. Bivariate correlations and descriptions of participants with rheumatoid arthritis (n ? 222 couples)
FatiguePain Physical limitation
Spouse
overestimation Agree
Spouse
underestimation
Spouse
overestimationAgree
Spouse
underestimation
Spouse
overestimationAgree
Spouse
underestimation
Beneficial support
Problematic support
Beneficial support,
mean ? SD
Problematic support,
mean ? SD
0.09
?0.18*
3.80 ? 0.96
?0.10
0.07
3.69 ? 0.74
0.02
0.15†
0.09
?0.05
3.31 ? 0.96
0.04
?0.15†
3.79 ? 0.79
?0.19*
0.16*
3.91 ? 0.55
?0.04
0.07
3.75 ? 0.72
?0.01
?0.18*
3.76 ? 0.80
0.04
0.10‡
3.86 ? 0.763.81 ? 0.83
2.13 ? 0.622.36 ? 0.71 2.59 ? 0.832.26 ? 0.722.26 ? 0.712.60 ? 0.742.38 ? 0.812.10 ? 0.622.40 ? 0.66
* Significant at the 0.01 level (2-tailed).
† Significant at the 0.05 level (2-tailed).
‡ Significant at the 0.10 level (2-tailed).
Table 4. Hierarchical linear regression analyses examining spousal concordance regarding fatigue, pain, and physical
limitation, and spousal problematic support (n ? 213 couples) and beneficial support (n ? 217 couples)
Predictors
Fatigue concordancePain concordance Physical limitation concordance
Problematic
support
Beneficial
support
Problematic
support
Beneficial
support
Problematic
support
Beneficial
support
??R2
??R2
??R2
??R2
??R2
??R2
Step 1*
Relationship satisfaction
Physical health
Step 2¶
Relationship satisfaction
Physical health
Spouse underestimator
Spouse overestimator
Total R2
12.6%† 50.6%† 13.5%†52.5%† 13.9%†52.4%
?0.323† 0.671†
0.110‡
?0.333† 0.689†
0.099§
?0.353†0.690†
0.101‡
3.7%‡0.4% 0.8%0.6%3.4%‡ 0.3%
?0.312†
?0.360†
0.08
0.041
0.059
0.09
0.036
?0.025
0.133‡
?0.119
0.087
?0.018
0.010
0.079
0.214‡
0.188§
16.3%51.0%14.3%53.1%17.3%52.6%
* Statistical control variables included the sex, highest level of education obtained, general physical health, years married, years living with
rheumatoid arthritis, and relationship satisfaction of the person with rheumatoid arthritis. The table only displays the statistically significant variables
that were controlled for in the analyses.
† P ? 0.001.
‡ P ? 0.01.
§ P ? 0.05.
¶ Only displays the statistically significant variables that were controlled for in the analyses.
124Lehman et al

Page 6

95% confidence interval [95% CI] 0.001–0.627). Spouse
underestimators of fatigue explained an additional 3.7% of
the variability in problematic spousal support (P ? 0.002).
No significant relationship existed between spousal agree-
ment levels for fatigue and the perceptions of persons with
RA about beneficial spousal support.
Association of concordance for pain and social support.
Bivariate analyses revealed that when spouses underesti-
mated the pain experienced by the person with RA, the
person with RA reported significantly greater problematic
spousal support (Table 3). Conversely, when couples were
in agreement about pain, persons with RA were signifi-
cantly more likely to report less problematic support. Par-
ticipants with RA whose spouses underestimated their
level of pain also reported lower levels of beneficial sup-
port (Table 3).
In the multivariate analyses, the control variables ex-
plained 13.5% (P ? 0.001) and 52.5% (P ? 0.001) of the
variability in problematic and beneficial support, respec-
tively. Analyses revealed no significant relationships be-
tween couples’ discordant views on pain and the percep-
tions of the person with RA about problematic or
beneficial spousal support.
Association of concordance for physical limitation and
social support. In bivariate analyses, persons with RA
whose spouses were in agreement on perceptions of phys-
ical limitation were less likely to report receiving problem-
atic spousal support, and those whose spouses were un-
derestimators were more likely to indicate problematic
support (Table 3).
After accounting for the effects of demographic, disease-
related, and psychosocial variables (13.9% variance ac-
counted for) in the multivariate analyses (Table 4), par-
ticipants with RA whose spouses overestimated or
underestimated level of physical limitations reported re-
ceiving greater problematic support than couples in con-
cordance (overestimators: ? ? 0.214, P ? 0.008, 95% CI
0.044–0.506; underestimators: ? ? 0.188, P ? 0.02, 95%
CI 0.092–0.584). Couple concordance explained an addi-
tional 3.4% of the variability in problematic social support
received (P ? 0.02) (Table 4). No significant association
existed between concordance on perceptions of physical
limitation and beneficial support.
DISCUSSION
Our findings provide support for the optimal matching
hypothesis, which contends that support is effective when
it is a match with perceived needs (10–12). We hypothe-
sized that couple concordance on levels of fatigue, pain,
and physical limitation would be associated with persons
with RA reporting that their spouses provided higher-
quality support. Findings suggest that couples’ discordant
views of fatigue and physical limitation in particular are
associated with significantly greater problematic spousal
support, even after adjusting for the effects of the sex,
education, physical health, years married, disease dura-
tion, and relationship satisfaction of the person with RA.
Results suggest that persons with RA whose spouses
underestimated their fatigue are more likely to report re-
ceiving greater problematic spousal support. Others have
found such negative spousal interactions as problematic
support to have deleterious effects on patient outcomes
(32). To many without the disease, fatigue associated with
RA may be an invisible dimension of RA due to the chal-
lenge of recognizing the complexity or severity of symp-
toms. Consequently, spouses not recognizing the severity
of fatigue in their partners may be more critical when their
partners are not able to participate in activities, or they
may be less sympathetic to the emotional needs of those
coping with RA.
As expected, our results suggest that discordant spousal
perception of physical limitation in RA is significantly
associated with the perception of greater problematic sup-
port. Spouses’ overestimation or underestimation of phys-
ical limitation in partners with RA was likely associated
with being overly compensatory to those with poorer func-
tioning or overly solicitous to partners with few physical
limitations (33). In a study of 188 couples, discordant
spousal perception of RA-related disability was associated
with poorer well-being in persons with RA (13). Problem-
atic spousal support in RA is linked with poorer coping
behaviors (8), but it may be reduced when couples are in
agreement about the challenges the disease presents.
We were initially surprised to find no relationship be-
tween spousal overestimation or underestimation of pain
and support. Some research has found patients and care-
giver estimations of pain in cancer (17), OA (16), and RA
(13) to be associated with greater caregiver or patient well-
being when concordance exists. Although assessment of
well-being is not a proxy for support, we expected an
association between spousal overestimators and underes-
timators of pain with social support. A more multidimen-
sional assessment of pain than the single item used in our
study may allow for a more meaningful interpretation of
couple concordance on perceptions of pain. Another ex-
planation is that what is related to support is not recogni-
tion of pain per se but more a recognition of pain coping
behaviors. These behaviors are visible actions a person
attuned to the spouse’s experience may recognize and
support. Some may be more sympathetic toward those in
pain and coping with it in silence. Others may respond to
pain negatively when it is verbalized.
One limitation of the current research is that we relied
exclusively on the perceptions of spouse support of the
person with RA. The accuracy of spousal perceptions of
RA may not be critical to effective support provision. The
spouse may have provided support, yet the behavior may
not have been recognized as present or supportive by the
person with RA. Personality factors, for example, might
taint the lens through which one views the presence or
absence of support. Future research would benefit from, in
addition to obtaining data on each spouse’s perceptions,
obtaining observational data.
Longitudinal studies are required to establish causality
between perceptions of RA clinical manifestations and
spousal support. A family-systems perspective and ac-
counting for disease course might offer clues to under-
standing the causal chain. For example, discordant couple
Spousal Concordance on Fatigue, Pain, and Physical Limitation in RA 125

Page 7

perceptions might be most predictive of support in early
RA before a history of (non)supportive RA behaviors has
been established or during times of disease flare up. Our
findings, however, suggest that couple discordance on
perceptions of physical limitation and fatigue in RA may
be an indicator of potential problems in spousal sup-
port. Given the small magnitude of our findings, more re-
search is required to determine whether they are clinically
meaningful.
Our sample of individuals with RA was highly satisfied
with their spousal relationships and was homogenous on
many sociodemographic variables. The generalizability of
our study findings is limited given that couples less satis-
fied in their relationships may differ on a variety of factors.
Research involving more diverse populations in terms of
relationship satisfaction and duration may aid in better
understanding predictors of social support over the dis-
ease course (34,35).
Although we adjusted for a number of factors linked to
support that helped explain significant amounts of the
variability in support outcomes, including relationship
satisfaction and general physical health, future research
should examine other support recipient and support pro-
vider factors to increase understanding of social support
predictors. Empathic responding, for example, has been
identified in research as a type of relationship-focused
coping correlating with positive health outcomes and
stress reduction (36). It may also correlate with support
provision. Personality traits such as optimism and neurot-
icism may also help explain individual differences in ex-
pectations, experience, and effectiveness of spousal sup-
port and couple concordance. Other third variables such
as satisfaction with support, as has recently been sug-
gested (37), may play central roles in ultimately affecting
health outcomes. Gaining an increased understanding of
such factors would not only help explain predictors of
spousal support and couple concordance but also inform
the development and evaluation of psychoeducational
interventions.
Although support intervention studies in general have
produced mixed results (38), self-management and other
education programs focusing on both the person with RA
and the spouse may be able to both minimize differences
in perceptions of RA symptoms and improve the quality
of spousal support. A randomized controlled trial of the
intervention developed by Karlson and colleagues (39) for
people with lupus and their partners revealed that teach-
ing couples communication and disease self-management
skills promoted support and resulted in reduced fatigue in
people living with lupus. Keefe and colleagues (40) con-
ducted a spouse-assisted coping skills intervention for
couples in which one person was affected by OA. Keefe
reported that a couple’s focus on effective pain coping
skills, including skills training for spouses and couples’
communication skills, significantly improved outcomes in
the spouse with OA. Further research is required to deter-
mine whether couple concordance on perceptions of RA
predicts support over time. Such advances are necessary to
inform the development of couple-based interventions.
Our research findings are consistent with calls for work
on dyadic coping, recognizing the role of both members of
a couple on health outcomes (41). Additionally, our results
highlight a direction for future research to better under-
stand how coping with and adapting to chronic illness is
influenced by both persons in a relationship at many levels
over time (e.g., age, sex, relationship satisfaction, phase of
illness, stressors associated with coping) (34). Our findings
suggest a new avenue of research 1) to better understand
how couple awareness of RA clinical manifestations is
linked to spousal social support and 2) to modify problem-
atic spousal support through better understanding of RA
clinical manifestations, thereby achieving positive health
outcomes. Longitudinal research needs to identify predic-
tors of spousal support and to delineate the relationship
between couples’ disease perceptions and receipt of spou-
sal social support.
ACKNOWLEDGMENTS
The authors are most appreciative of all of the couples
who participated in the study and shared their experi-
ences in living with RA. Thanks to Mr. Don Olsen and
Dr. Antonio Avin ˜a for helpful comments on manuscript
drafts and to others who advised on the study, assisted
with recruitment, and volunteered countless hours to the
success of the project: Statistical Consultant: Michael
Papsdorf, PhD; Consumer (Patient) Advisory Panel: Otto
Kamensek, Colleen Maloney, and Gordon Whitehead; Par-
ticipant Recruitment: Drs. Kam Shojania, Barry Koehler,
Robert Offer, Alice Klinkhoff, Andrew Chalmers, Diane
Lacaille, and Jolanda Cibere; Arthritis Consumer Experts
and Canadian Arthritis Patient Alliance; Volunteers: Tina
Lee, Erica Amari, Natasha Eginli, Wendy Lai, Jeannie Lai,
Phillip Choi, Pam Rogers, and Dr. Antonio Avin ˜a.
AUTHOR CONTRIBUTIONS
All authors were involved in drafting the article or revising
it critically for important intellectual content, and all authors
approved the final version to be submitted for publication.
Dr. Lehman had full access to all of the data in the study and takes
responsibility for the integrity of the data and the accuracy of the
data analysis.
Study conception and design. Lehman, Pratt, DeLongis, Collins,
Esdaile.
Acquisition of data. Lehman, DeLongis, Shojania, Koehler, Offer.
Analysis and interpretation of data. Lehman, Pratt, DeLongis,
Collins, Esdaile.
REFERENCES
1. Kirwan JR, Minnock P, Adebajo A, Bresnihan B, Choy E,
de Wit M, et al. Patient perspective: fatigue as a recommended
patient centered outcome measure in rheumatoid arthritis.
J Rheumatol 2007;34:1174–7.
2. Heller JE, Shadick NA. Outcomes in rheumatoid arthritis:
incorporating the patient perspective. Curr Opin Rheumatol
2007;19:101–5.
3. Evers AW, Kraaimaat FW, Geenen R, Jacobs JW, Bijlsma JW.
Stress-vulnerability factors as long-term predictors of disease
activity in early rheumatoid arthritis. J Psychosom Res 2003;
55:293–302.
4. Evers AW, Kraaimaat FW, Geenen R, Jacobs JW, Bijlsma JW.
Longterm predictors of anxiety and depressed mood in early
rheumatoid arthritis: a 3 and 5 year followup. J Rheumatol
2002;29:2327–36.
5. Goodenow CS, Reisine T, Grady KE. Quality of social sup-
126 Lehman et al

Page 8

port and associated social and psychological functioning in
women with rheumatoid arthritis. Health Psychol 1990;9:
266–84.
6. Revenson TA, Schiaffino KM, Majerovitz SD, Gibofsky A.
Social support as a double-edged sword: the relation of posi-
tive and problematic support to depression among rheuma-
toid arthritis patients. Soc Sci Med 1991;33:807–13.
7. Riemsma RP, Taal E, Wiegman O, Rasker JJ, Bruyn GA,
van Paassen HC. Problematic and positive support in relation
to depression in people with rheumatoid arthritis. J Health
Psychol 2000;5:221–30.
8. Manne SL, Zautra AJ. Spouse criticism and support: their
association with coping and psychological adjustment among
women with rheumatoid arthritis. J Pers Soc Psychol 1989;
56:608–17.
9. Neville C, Fortin PR, Fitzcharles MA, Baron M, Abramowitz
M, DuBerger R, et al. The needs of patients with arthritis: the
patient’s perspective. Arthritis Care Res 1999;12:85–95.
10. Cohen S, McKay G. Social support, stress and the buffering
hypothesis: a theoretical analysis. In: Baum A, Taylor SE,
Singer JE, editors. Handbook of psychology and health. Hills-
dale (NJ): Erlbaum; 1984. p. 253–67.
11. Cutrona CE. Stress and social support: in search of optimal
matching. J Soc Clin Psychol 1990;9:3–14.
12. Cutrona CE, Russell DW. Type of social support and specific
stress: towards a theory of optimal matching. In: Sarason BR,
Sarason IP, Pierce GR, editors. Social support: an interac-
tional view. New York: Wiley; 1990. p. 319–66.
13. Riemsma RP, Taal E, Rasker JJ. Perceptions about perceived
functional disabilities and pain of people with rheumatoid
arthritis: differences between patients and their spouses
and correlates with well-being. Arthritis Care Res 2000;13:
255–61.
14. Sterba KR, DeVellis RF, Lewis MA, DeVellis BM, Jordan JM,
Baucom DH. Effect of couple illness perception congruence
on psychological adjustment in women with rheumatoid ar-
thritis. Health Psychol 2008;27:221–9.
15. Cremeans-Smith JK, Stephens MA, Franks MM, Martire LM,
Druley JA, Wojno WC. Spouses’ and physicians’ perceptions
of pain severity in older women with osteoarthritis: dyadic
agreement and patients’ well-being. Pain 2003;106:27–34.
16. Martire LM, Keefe FJ, Schulz R, Ready R, Beach SR, Rudy TE,
et al. Older spouses’ perceptions of partners’ chronic arthritis
pain: implications for spousal responses, support provision,
and caregiving experiences. Psychol Aging 2006;21:222–30.
17. Miaskowski C, Zimmer EF, Barrett KM, Dibble SL, Wallhagen
M. Differences in patients’ and family caregivers’ perceptions
of the pain experience influence patient and caregiver out-
comes. Pain 1997;72:217–26.
18. Cano A, Johansen AB, Geisser M. Spousal congruence on
disability, pain, and spouse responses to pain. Pain 2004;109:
258–65.
19. Belza BL. Comparison of self-reported fatigue in rheumatoid
arthritis and controls. J Rheumatol 1995;22:639–43.
20. Belza BL, Henke CJ, Yelin EH, Epstein WV, Gilliss CL. Cor-
relates of fatigue in older adults with rheumatoid arthritis.
Nurs Res 1993;42:93–9.
21. Farrar JT, Young JP Jr, LaMoreaux L, Werth JL, Poole RM.
Clinical importance of changes in chronic pain intensity mea-
sured on an 11-point numerical pain rating scale. Pain 2001;
94:149–58.
22. Hudak PL, Amadio PC, Bombardier C, and the Upper Extrem-
ity Collaborative Group. Development of an upper extremity
outcome measure: the DASH (disabilities of the arm, shoulder
and hand) [published erratum appears in Am J Ind Med
1996;30:372]. Am J Ind Med 1996;29:602–8.
23. Ware J Jr, Kosinski M, Keller SD. A 12-Item Short-Form
Health Survey: construction of scales and preliminary tests of
reliability and validity. Med Care 1996;34:220–33.
24. Hendrick SS. A generic measure of relationship satisfaction.
J Marriage Fam 1988;50:93–8.
25. Hendrick SS, Dicke A, Hendrick C. The Relationship Assess-
ment Scale. J Soc Pers Relat 1998;15:137–42.
26. Coyne JC, DeLongis A. Going beyond social support: the role
of social relationships in adaptation. J Consult Clin Psychol
1986;54:454–60.
27. Dowdy SW, Dwyer KA, Smith CA, Wallston KA. Gender and
psychological well-being of persons with rheumatoid arthri-
tis. Arthritis Care Res 1996;9:449–56.
28. Taylor SE, Klein LC, Lewis BP, Gruenewald TL, Gurung RA,
Updegraff JA. Biobehavioral responses to stress in females:
tend-and-befriend, not fight-or-flight. Psychol Rev 2000;107:
411–29.
29. Pouchot J, Kherani RB, Brant R, Lacaille D, Lehman AJ,
Ensworth S, et al. Determination of the minimal clinically
important difference for seven fatigue measures in rheuma-
toid arthritis. J Clin Epidemiol 2008;61:705–13.
30. Gummesson C, Atroshi I, Ekdahl C. The disabilities of the
arm, shoulder and hand (DASH) outcome questionnaire: lon-
gitudinal construct validity and measuring self-rated health
change after surgery. BMC Musculoskelet Disord 2003;4:11.
31. Jaeschke R, Singer J, Guyatt GH. Measurement of health
status: ascertaining the minimal clinically important differ-
ence. Control Clin Trials 1989;10:407–15.
32. Kiecolt-Glaser JK, Newton TL. Marriage and health: his and
hers. Psychol Bull 2001;127:472–503.
33. Affleck G, Pfieffer CA, Tennen H, Fifield J. Social support and
psychosocial adjustment to rheumatoid arthritis: quantitative
and qualitative findings. Arthritis Care Res 1988;1:71–7.
34. Berg CA, Upchurch R. A developmental-contextual model of
couples coping with chronic illness across the adult life span.
Psychol Bull 2007;133:920–54.
35. Uchino BN. What a lifespan approach might tell us about why
distinct measures of social support have differential links to
physical health. J Soc Pers Relat 2009;26:53–62.
36. O’Brien TB, DeLongis A, Pomaki G, Puterman E, Zwicker A.
Couples coping with stress: the role of empathic responding.
Euro Psychol 2009;14:18–28.
37. Norton TR, Manne SL. Support concordance among couples
coping with cancer: relationship, individual, and situational
factors. J Soc Pers Relat 2007;24:675–92.
38. Lepore SJ, Coyne JC. Psychological interventions for distress
in cancer patients: a review of reviews. Ann Behav Med
2006;32:85–92.
39. Karlson EW, Liang MH, Eaton H, Huang J, Fitzgerald L, Rogers
MP, et al. A randomized clinical trial of a psychoeducational
intervention to improve outcomes in systemic lupus erythem-
atosus. Arthritis Rheum 2004;50:1832–41.
40. Keefe FJ, Blumenthal J, Baucom D, Affleck G, Waugh R, Cald-
well DS, et al. Effects of spouse-assisted coping skills training
and exercise training in patients with osteoarthritic knee
pain: a randomized controlled study. Pain 2004;110:539–49.
41. Revenson TA, Kayser K, Bodenmann G. Couples coping with
stress: emerging perspectives on dyadic coping. Washington,
DC: American Psychological Association; 2005.
Spousal Concordance on Fatigue, Pain, and Physical Limitation in RA127