Rheumatology 2005;44:105–110
Advance Access publication 20 September 2004
doi:10.1093/rheumatology/keh412
Rheumatology outcomes: the patient’s perspective.
A multicentre focus group interview study of Swedish
rheumatoid arthritis patients
M. Ahlmén, U. Nordenskiöld, B. Archenholtz, I. Thyberg1, R. Rönnqvist2,
L. Lindén2, A.-K. Andersson3 and K. Mannerkorpi
Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More
knowledge is needed about how patients assess outcomes in order to update current measurements.
Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were
included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and
satisfaction/dissatisfaction with RA treatments were discussed.
Results. The participants’ initial outcome assessments included physical and psychosocial items, which comprised overall
treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were
‘Normal life’, ‘Physical capacity’, ‘Independence’ and ‘Well-being’. Satisfaction with treatment was associated with the quality
of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work.
Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it
possible for patients to ‘take charge’ of their life situation. Good resources for and access to rheumatology care were desired.
Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have
to be evaluated within an individual RA patient’s total life situation, described in the identified themes: ‘Normal life’, ‘Physical
capacity’, ‘Independence’ and ‘Well-being’. Development and validation of measurements covering these issues is suggested.
More research is needed about communication and how patients experience their roles in the rheumatology clinic.
KEY WORDS: Rheumatoid arthritis, Qualitative research, Focus groups, Outcome assessment, Patient perspectives.
The clinical care of rheumatic patients requires assessment not only
of the condition of organs and laboratory measures but also of
their functional ability. Since its publication in 1949, the assessormade Steinbrocker Functional Classification [1] has been used
clinically for patients with rheumatoid arthritis (RA). However,
the paradigm shift in the assessment of disease activity and
outcome did not obtain general acceptance for several decades,
when it was advocated that professionals involved in rheumatology
care should add patient-centred, self-reported measurements of
symptoms and disability for use in clinical practice [2]. A large
number of measurements have been created and validated [3–7].
Thus, core sets of variables for use in short-term assessments of
therapeutic response in RA are suggested. They include joint
scores, symptom reports by patients and physicians, measures of
inflammation, joint damage and of physical and psychosocial
dysfunction influencing quality of life according to the ACR, the
EULAR and/or the ILAR definitions. Additionally, measures for
the important long-term multidimensional outcome assessments
are presented, comprising items suggested not only by health
professionals but also by patients, who were interviewed when the
measurements were created. A recent reconstruction of the World
Health Organization (WHO) International Classification of
Functioning, Disability and Health (ICF) [8] is also available for
multifactorial assessment of health and health-related states.
There is still no general agreement about which self-report
multidimensional functional measurement should be used in
routine clinical care. However, the Health Assessment Questionnaire (HAQ) disability index [7, 9, 10] has been used globally as
‘the gold standard’ [11] in spite of its scoring problems [12, 13].
Experts keep evaluating the qualities of the measurements
[14–16]. As a result, a growing number of studies have been
found to report a discordance in opinion between patients and
professionals when it comes to symptoms, the impact of the disease
and treatment outcomes [17–20]. Consequently, one vital goal now
is to reconsider patients’ perspectives and cooperation in the
assessment of important treatment outcomes [21].
Inspired by an on-going British multicentre study exploring RA
patients’ preferences on treatment and outcomes [22], we adopted
the same qualitative focus group method and topics in this Swedish
study. The research questions to be addressed in the interactive
discussions by the focus group participants concerned the most
important outcomes from their RA treatments, decisions relating
to when a treatment is working, and factors associated with
satisfaction/dissatisfaction with a treatment.
Methods
The focus group method
A qualitative research approach provides methods for obtaining
a better understanding of factors that are not quantifiable but
Department of Rheumatology, Sahlgrenska University Hospital/SU, Göteborg and Mölndal, 1Linköping University Hospital, Linköping, 2Karolinska
University Hospital/KS, Stockholm and 3Spenshult Rheumatology Hospital, Oskarström, Sweden.
Submitted 19 April 2004; revised version accepted 20 August 2004.
Correspondence to: M. Ahlmén, Department of Rheumatology, SU/Göteborg and Mölndal, Box 1094, SE–436 22 Askim, Sweden.
E-mail: [email protected]
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Rheumatology Vol. 44. No. 1 ß British Society for Rheumatology 2004; all rights reserved
M. Ahlmén et al.
106
TABLE 1. Characteristics of the RA participants in the focus groups at the four centres
Rheumatology centre
N
Median age
(yr)
Age range
(yr)
Median RA
duration (yr)
RA duration
range (yr)
Gender
Karolinska University Hospital
Linköping University Hospital
Sahlgrenska University Hospital
Spenshult Hospital
Total group
9
5
6
5
25
59
61
38.5
65
55
32–77
49–72
31–49
37–74
31–77
12
14
8.5
31
14
5–35
4–37
3–24
12–44
3–44
Male
Female
Female
Female
9/16
undoubtedly influence people’s experiences of health, illness,
health-care and rehabilitation. In this study, the focus group
interview method was used [23]. This is a well-established research
technique in which the participants in each focus group, guided
and encouraged by a neutral moderator, discuss different aspects
of specific questions designed by the researchers. The participants’
experiences, opinions and concerns relating to the particular topics
are thus explored interactively.
Study sample and procedure
To gather a maximum amount of diversified information, four
multicentre focus groups with five to nine RA participants were
designed (Table 1). These numbers of groups and participants were
thought to be satisfactory as all the participants represented the
same diagnosis, and the research questions were clearly defined and
delimited to issues about treatments and outcomes, familiar to all
study patients from their former rheumatology expert team care
contacts.
Written information about the study was sent to the patients.
After having obtained their written consent, they were invited to
participate in one group session. Permission from each patient’s
physician was received before the start of the study. One moderator
and one observer with experience of rheumatology team care were
responsible for each focus group. The focus group sessions lasted
for about 1.5–2 h, including a coffee break. At the start, the
participants were informed once again about the topics of their
discussion and also about the moderator’s role. The patients were
asked to address the following questions: What outcomes from
your treatments are important to you? What makes you satisfied or
dissatisfied with a treatment? How do you decide that a treatment
is working?
The interviews were tape-recorded and the discussion material
was transcribed verbatim and analysed using an established
method [23]. A first analysis was made by the researchers at each
centre who read through their interview material in detail. Codes
were identified to describe the content of the data [23, 24].
Categories related to each of the three research questions were
created. The researchers at all four centres then met to examine all
the sets of analyses in order to combine categories and identify
themes. They were discussed until an agreement was reached. Some
differences with regard to labelling the themes were found, but
agreement was reached on the central meanings. Scientific rigour
was established by inviting an independent researcher to examine
the reports, at every stage, to see whether the identified themes were
in agreement with the raw data. Reports on the analyses were sent
out to the participants in each focus group to validate the content.
The study was approved by the ethics committees at all four
centres.
Results
In all, 25 RA patients (9 males, 16 females) with a median age
of 55 yr (range 31–77 yr) and a median disease duration of 14 yr
(range 3–44 yr) participated (Table 1). All participants fulfilled the
1987 ACR criteria for RA [25] and belonged to Steinbrocker
Functional
class
II
II
II
II, III
Functional classes II–III [1]. Eight patients worked full time or part
time, while the others were on sick leave (n ¼ 7), had a disability
pension (n ¼ 2) or had retired (n ¼ 8). All the study patients had
had access to multidisciplinary rheumatology team care.
Analyses of the interview material disclosed that similar items
of treatment results were found to be of importance by the participants at all four centres and that similar categories of priority
regarding outcome assessments could be created. Identified
themes were found to cut across the two questions: ‘What
outcomes from your treatments are important to you?’ and ‘How
do you decide that a treatment is working?’. The discussions of the
first question concerned subjective symptoms that described the
patients’ perceptions of ill-health, and specified items on the RA
disease such as pain, stiffness and fatigue. Addressing the following
question, it became clear that the patients gathered the isolated
items of desired symptom relief reported earlier into treatment
goals that were of value to them in the context of their overall life
situation, both physical and psychosocial. As shown in Table 2
these two questions were therefore combined [23].
The patients’ perceptions, thoughts and feelings about the most
important outcomes of RA treatment and when a treatment works
were developed into the following themes: ‘Normal life’, ‘Physical
capacity’, ‘Independence’ and ‘Well-being’.
Normal life
Regaining full health and living a normal life were overall
treatment goals, which were also expected in the later stages of
the disease. The patients expressed a desire not to be regarded as
differing from ordinary people or to be seen as different because of
the disability caused by the RA. Living a normal life also meant
feeling no limitations when it came to managing the household and
normal social functioning:
‘It is self-evident that you want to be perfectly healthy.’
‘To be able to live the life I had before.’
‘Live as people usually do.’
Physical capacity
The patients’ conceptions of physical disability emerged as an
important factor. They had experienced being unhealthy in terms
of functional losses. Reduced pain and stiffness, increased mobility, muscle strength, grip force and balance were outcomes that
made patients feel more flexible and happy:
‘I feel that mobility has a great deal to do with personal
integrity–—the more mobile you are, the better you manage
and the better you feel.’
A reduction in the oppressive fatigue, invisible and difficult to
describe and quantify but acting to screen off reality, was related to
the ability to be more active.
‘The treatment is effective when I have been relieved from pain
and that terrible fatigue which is like a fog over life.’
‘You become completely unable to act and you want to do
nothing.’
Patient perspectives on outcome assessments in RA
107
TABLE 2. Themes prioritized by the RA participants
Research questions
‘What outcomes from your treatments are
important to you?’ and ‘How do you decide
that a treatment is working?’
Themes
Categories
Normal life
Be looked upon as before. Feel no limitations.
Manage normal social roles
Physical capacity
Reduce pain, stiffness and fatigue. Increase mobility,
grip force and muscle strength
Manage daily activities. Care for oneself and family.
Manage work and leisure time
Be able to enjoy life. Regain self-confidence.
Get psycho-social support
Experience improvement in symptom severity.
Increase levels of ability and activity
Obtain good mutual relationship with the rheumatology
staff. Receive satisfactory expert treatment
Independence
Well-being
‘What makes you satisfied/dissatisfied
with a treatment?’
Benefit from treatments
Communication with the
rheumatology staff
‘Taking charge’
Resources of and access to
rheumatology care facilities
Independence
One much appreciated treatment outcome was being able to
manage daily activities such as personal hygiene, dressing, walking
and house-keeping:
‘When you begin to feel better, that is when you first realize how
unwell you have been. . .and then you are suddenly capable of
dressing yourself again.’
To care for oneself and one’s family and to able to work and
enjoy leisure time activities were important. All kinds of treatments
given, including assistive devices, became meaningful when the
patients could increase their degree of ability and activity:
‘For me, it is important that daily activities function, that I can
look after my home, my children and manage to work.’
‘Living as flexibly as possible in spite of your joint deformities—
some of which you can do nothing about—you have to
compensate for them.’
Well-being
The participants mentioned well-being as an important outcome,
but they had difficulty defining the content of this item. They
wanted to feel happy, bright and breezy, to be able to enjoy life and
regain self-confidence:
‘I didn’t know that the colours were so bright, the music so
beautiful, I have lived inside a bubble of glass.’
‘It is a shining moment when you feel that you have been down
there for a long period, but now you can climb up to the next
level.’
The study participants were aware of and discussed the fact that
their RA caused not only physical but also psychological problems.
They pointed out that it was very important for them to use
positive thinking and a good sense of humour in combination with
their physical and medical treatment. Psychological support from
the health professionals and fellow network members—including
other RA patients—and a positive treatment atmosphere at the
rheumatology clinic was found to strengthen the participants’ selfconfidence:
‘When you get support, it gives you a boost and you can
manage more.’
Regarding the last question, about satisfaction/dissatisfaction
with a treatment, the themes identified were ‘Benefit from
Be accepted as experts on living with rheumatoid
arthritis. Take own responsibility for their situation
Get resources of rheumatology care. Have access
to rehabilitation facilities
treatments’, ‘Communication with the rheumatology staff’,
‘Taking charge’ and ‘Resources for and access to rheumatology
care facilities’ (Table 2).
Benefit from treatments
Benefit from treatments was a principal factor in terms of
satisfaction and it was basically defined as relief from pain, stiffness and fatigue and increased ability and activity. The patients
were dissatisfied by the knowledge that several weeks were needed
for most disease-modifying anti-rheumatic drugs (DMARDs)
to disclose signs of RA improvement, if any. However, partial
resolution as a result of medication and other treatments was also
regarded as a benefit. The risk of adverse events was well known
and caused dissatisfaction. The participants said that drug compliance increased with sufficient information about what to expect,
combined with encouragement and support from the physician and
the nurse in charge:
‘I began to notice a bit of an improvement after three to four
months, but it took about half a year before I felt almost like
I did before I got RA.’
‘This is actually the hard part . . . if you have to start with a
new drug that takes three months before you know whether it
helps or not.’
Communication with the rheumatology staff
A good relationship with the health professionals played a
prominent role in the degree of satisfaction. It was associated
with mutual respect, increased patient trust in the treatment and a
reduction in uneasiness. The participants established the fact that:
‘If the communication doesn’t work, then the treatment won’t
work. It doesn’t depend on the physician, it doesn’t depend on
the patient. It is all about the mutual relationship and this
teamwork requires good communication.’
Another demand was that all the rheumatology staff members
should be experts in rheumatology. Only kindness and sociability
were not regarded as a consultation. A desired condition for good
communication was continuity with care givers:
‘Perhaps some of the health professionals at the rheumatology
clinic are not experts in rheumatology. I really don’t know how
this works.’
108
M. Ahlmén et al.
Taking charge
The participants reflected on their roles as patients making a
distinction between the expert roles. The rheumatology staff
members were regarded as experts in their area, while the patients
regarded themselves as experts on their own bodies and on living
with arthritis. They expected to be regarded as appreciated,
valuable communicating partners:
‘. . . the clinicians are specialists in rheumatology, but as a
patient you are an enormous specialist on your own body, and
so every patient with RA studies books and articles about the
disease.’
With this expert knowledge and relationship as the starting
point, patients were willing to take charge of/take responsibility for
their disease situation and to mobilize the best possible of mood
and strength:
‘You must fight and not just now but for your whole life–—and
you must fight hard.’
Resources for and access to rheumatology care facilities
The availability of rheumatology care facilities including local
rheumatology departments, rehabilitation facilities and complementary treatment options elsewhere, was important. This related
to the patients’ wish to ‘take charge’ of their treatment and
situation:
‘I was referred to a rheumatologist during an early phase of my
disease and received help. So I could make full use of all the
specialist resources and assistive devices and all the things that
you are informed about.’
For some participants, satisfaction with treatment involved
access to rehabilitation facilities close to their place of work and at
late hours. For others, it included access to rehabilitation centres in
the country or abroad in a subtropical climate.
Discussion
This multicentre focus group study reports Swedish RA patients’
perspectives on outcome assessments from treatment. Basically,
improvement of physical and psychological disease symptoms were
of importance according to the participants. However, these specified items of ill-health were found to be related to the patients’
individual treatment goals and valued in their overall life situations. The patients wanted to regain normal life, physical capacity,
independence and well-being.
Satisfaction/dissatisfaction with treatments comprised benefits
from medical and physical procedures and good mutual communication with the rheumatology staff. Expert rheumatology knowledge on the part of all the health professionals was assumed,
together with the fact that the RA patients were accepted as experts
on the symptoms of their own bodies and were authorized to ‘take
charge’ of their disease. Moreover, multiple resources for and
access to rheumatology care facilities were important.
As was noted in the British focus group report on RA patients’
perspectives on treatment outcomes [22], our RA study not only
confirms earlier findings but also reports new findings of special
interest. Fatigue, described as devastating and consuming with
a negative impact on all functional activities and psychosocial
factors, was one important outcome. This symptom complex has
been discussed in several studies [26–29], is repeatedly reported by
patients, but is seldom included in routine clinical assessments [2]
or in core sets of items of RA activity [5].
Increased well-being was of vital importance for the patients.
One psychological aspect of this outcome probably includes
overcoming the crisis that occurs when the risk of becoming
severely disabled by the RA makes patients lose their selfconfidence. As reported by Dildy [30], this impact of suffering
from the disease includes a disintegration of self and the
disappearance of normal roles. New strategies and resources
have to be identified by the patients in order to rebuild their self,
while still fighting the chronic impacts and unforeseeable flares of
their RA.
Getting better may have a different meaning for each patient
and, as mentioned in the report by Beaton et al. [31], our study
participants reviewed not only the resolution—also partial—of
disease symptoms but also the readjustment of life and redefinition
of self and health as important recovery outcomes from treatments. In later stages of the disease patients were willing to adapt
to a certain amount of pain and to cope with other RA symptoms,
mastering their dysfunctional qualities.
In all the study focus groups, ‘taking charge’ [32] was important
for satisfaction with treatment. The patients wanted the rheumatology staff to adopt a holistic approach to care [32–34] and see the
whole person behind the disease and not only the arthritic individual. In addition, a positive, realistic approach was required by
the staff to inspire the patients to search for adequate information
about the disease. Other studies eliciting the experience of living
with RA report similar aspects [17, 30–38].
In this study there were four focus groups and the total number
of patients in the study was 25. This number of participants can be
regarded as small, but the focus groups represented both male and
female patients of varying ages and with a wide range of disease
durations. The participants appeared to have stimulated each other
in the interactive discussions and the sessions resulted in new and
important knowledge about how the patients viewed RA treatments and outcomes. However, a limitation of this study is the fact
that we did not use saturation as a criterion to decide how many
groups we needed to interview. It is thus possible that new groups
might have contributed with further aspects to the results.
Three focus group moderators were occupational therapists
and the fourth was a nurse. All the researchers were familiar with
rheumatology expert team care and the multitude of patient information commonly received and discussed at team conferences.
This ‘researchers’ pre-understanding’ was of help when guiding
and encouraging the participants at the focus group sessions.
The transcribed interviews from the four groups were similar in
character, as were the categories, which were first formulated
separately by the researchers at each local centre. We assume that
these facts increase the validity of the results representing all the
groups. Two of the three questions that initiated the discussions
in the focus groups resulted in similar categories, indicating that
the questions about ‘outcomes’ and ‘what works’ overlapped. Thus,
all the answers to these two questions were formed into the four
themes of normal life, physical activity, independence and wellbeing. This also indicates that the three research questions were not
exclusive enough, which is another limitation of the study.
Information about the degree of reduction in RA symptoms
was scarce. The only ‘quantity’ issue that was mentioned was that
improvement in pain was most important during the early phase
of RA and in RA flares. This has also been reported in the British
study [22] and in other studies [12, 17]. Interestingly, a small
improvement in symptoms could also be regarded as a valuable
improvement according to the participants.
In conclusion, the results of this study indicate that the illness
and treatment outcomes have to be evaluated in the individual RA
patient’s total life situation, described in the themes of normal life,
physical capacity, independence and well-being, suggesting a
holistic approach to rheumatology care. Multifactorial symptoms
like pain, fatigue and diminished well-being, emphasized by the
patients, indicate that further development and validation of
measurements covering these issues are needed. More research is
also needed about how patients experience their roles at a rheumatology clinic, as improvement of communication skills, the wish
Patient perspectives on outcome assessments in RA
to ‘take charge’ of their disease, and the scarcity of adequate
resources of and access to care were highlighted by the participants
in this study. These results also indicate that previous suggestions
of including rheumatic patients as co-workers in rheumatology
clinical research [21, 39, 40] is still of importance.
Rheumatology
Key messages
Prioritized outcomes should include
the overall situation of the individual
RA patient, e.g. Normal life, Physical
capacity, Independence and Well-being.
More research is needed about communication and about patients ‘taking
charge’.
Acknowledgements
We thank all focus group participants who made this study
possible. We are especially grateful for the advice and support
given by Maria Nylander-Lundberg, Margareta Pantzar and
Birgitta Smedeby. The study was supported by grants from
the Göteborg Region Foundation for Rheumatology Research/
GSFR, the Rheumatic Patient Society in Göteborg/RiG and
the Rune and Ulla Amlöv Association for Neurological,
Rheumatological and Audiological Research, Göteborg, Sweden.
The authors declare no conflicts of interest.
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Clinical Vignette
Rheumatology 2005;44:110
doi:10.1093/rheumatology/keh255
Sciatic nerve entrapment secondary to heterotopic
ossification: imaging findings and potential effect
of selective cox-2 inhibitors
A young woman was admitted with a 3-week history of pain and
restricted mobility. Six weeks previously she had developed sudden
respiratory distress and was successfully extubated 3 weeks after
this episode, and later she returned home. On examination she
had weakness in the muscles of the right lower extremity, almost
exclusively in the territory of the tibial nerve. The diagnosis of
neurogenic heterotopic ossification (NHO) was established by
X-ray. Axial CT scanning of the pelvis demonstrated NHO that
had developed along the fibres of the obturator internus muscle
(straight black arrows) and between the obturator internus
muscle and the gluteus maximus muscle (straight white arrows),
including the sciatic nerve (white star). High signal on T1-weighted
pelvic MRI images with gadolinium-DTPA injection was also
demonstrated inside the NHO and around the right sciatic nerve
(black stars).
Following treatment with 3 weeks of selective cox-2 inhibitors,
the range of motion improved. Surgical release of the sciatic nerve
was not appropriate because of her improvement and the presence
of significant inflammatory phenomena on MRI.
Our case illustrates the importance of radiology in therapeutic
decisions. The MRI clearly highlighted inflammatory phenomena
[1] around the sciatic nerve. Our observation suggests that a study
to assess the effectiveness of selective cox-2 inhibitors in inhibiting
NHO would be of interest.
The authors have declared no conflicts of interest.
A. LABORDE, M. HERMIER, and F. COTTON
Correspondence to: F. Cotton. E-mail: francois. cotton@
chu-lyon.fr
1. Ledermann HP, Schweitzer ME, Morrison WB. Pelvic heterotopic
ossification: MR imaging characteristics. Radiology 2002;222:189–95.