Development and Evaluation of a
Patient Education Program for Persons
with Systemic Sclerosis (Scleroderma)
Ulla K. Samuelson and E. Monica Ahlmén
Objective. To develop and evaluate the contents
and disposition of a systemic sclerosis (SSc; sclero-
derma) patient education program.
Methods. Six women with SSc constituted the
study group. Contents of the course were decided by
the rheumatology team and were based on health
assessments of the study participants made through
medical examinations, measures of subjective symp-
toms, disability, physical and psychological func-
tion, and perceived self-efficacy, as well as the pa-
tients’ opinions. The self-efficacy theory was used as
the main theoretical basis for the education program.
Results. Both self-report and observer-scored
measurements of disease impact and function were
required to create the contents of the course. The
patients reported that the professional medical in-
formation met their needs, although skin care and
pain are topics that need additional work in the
curriculum. The participants were satisfied with the
program and the patient contacts, but found goal-
setting to be an unfamiliar task.
Conclusion. This pilot study of a multidisci-
plinary SSc education program fullfilled the general
Supported by grants from the Swedish Rheumatism Associa-
tion.
Ulla K. Samuelson, OT, Department of Occupational Therapy,
and E. Monica Ahlmén, MD, Rheumatology Unit, Sahlgrenska
University Hospital/Mœlndal, Mœlndal, Sweden.
Address correspondence to Ulla K. Samuelson, OT, Department
of Occupational Therapy, Sahlgrenska University Hospital/Mœln-
dal, S-431 80 Mœlndal, Sweden.
Submitted for publication August 19, 1998; accepted in revised
form January 22, 2000.
© 2000 by the American College of Rheumatology.
0893-7524/00/$5.00
goals stated concerning the topics included and pro-
vided the opportunity for SSc patients to meet others
with the same diagnosis. A larger study group is
needed in order to analyze the effects of the course
and the measurements used.
Key words. Patient education; Systemic sclerosis;
Scleroderma; Self-efficacy; Evaluation.
INTRODUCTION
Systemic sclerosis (SSc; scleroderma) is an un-
usual and severe chronic rheumatic disease belong-
ing to the group of systemic autoimmune connective
tissue diseases. It is characterized by vascular
changes of the skin and internal organs, immune cell
activation, and an increased deposition of the extra-
cellular matrix (1). Studies indicate that scleroderma
patients have significant physical disability (2,3).
SSc patients also describe a feeling of isolation and
seldom or never meet someone else with the same
diagnosis (3).
In Sweden patient education in chronic arthritis is
managed by all health professionals in the multidis-
ciplinary rheumatology team, i.e., a rheumatologist,
an occupational therapist (OT), a physical therapist
(PT), a social worker, a nurse, and at times a dieti-
tian. The aim of patient education courses (4 – 6) is to
give information about the disease and about joint
protection, to facilitate the performance of activities
of daily living (ADLs), and to reduce pain and fatigue
through the use of assistive devices and adjusted
working methods. At the time of this study, no SSc
education program was available in Sweden.
In studies of patient education in arthritis, benefi-
141
142 Samuelson and Ahlmén
cial health outcomes have not correlated substan-
tially with adoption of taught behaviors, but have
correlated significantly with an unanticipated preex-
isting psychological attribute, perceived self-effi-
cacy, which also increased significantly during the
time of education (7–9). Perceived self-efficacy is a
patient’s judgment of his or her coping capabilities
in designated areas of functioning.
Several methods to enhance the level of perceived
self-efficacy have been described (10,11): skills mas-
tery, i.e., becoming more efficacious in the area con-
cerned; providing a model, i.e., seeing someone else
with the same problem successfully achieving a
change of behavior; and persuasion combined with
practical activities, e.g., participants in patient edu-
cation working together in small groups to solve
problems and set goals. Reinterpretation of physio-
logic signs and symptoms is also a way to enhance
self-efficacy. The aims of the present study were thus
to develop a multidisciplinary team education pro-
gram for persons with SSc and to test this program
on a representative group of patients, assessed by
observer examinations and a set of self-reported
measurements, and to evaluate the content and dis-
position of the course.
PATIENTS AND METHODS
Patients and assessment measures. Out of about
55 SSc patients registered at the rheumatology units
of Sahlgrenska University Hospital, Goeteborg and
Moelndal, Sweden in 1993, 6 female SSc patients
were recruited for this study. They expressed an
interest in attending the education course and had a
multisymptomatic medical history of SSc, including
periods of pain. Mean age at baseline was 62 years
(range 47–74), and the duration of SSc symptoms
was a mean of 8 years (range 4 –11). The duration
from diagnosis to taking part in the course ranged
between 2 and 9 years.
At inclusion and 3 months after the course, a med-
ical examination was performed, and a set of con-
ceivable assessment measurements was applied to
the study patients for further health screening. Five
of the 6 patients had gradually developed the CREST
syndrome. The dominating symptoms were Ray-
naud’s phenomenon (R), sclerodactyly (S) and telan-
giectasia (T), while calcinosis (C) and esophageal
dysmotility (E) problems were less pronounced. In-
ternal organ involvement of the SSc was noted in
two patients who had pulmonary fibrosis and im-
pairment of the renal glomerular filtration rate. Va-
sodilating drugs were given to all patients. Cortico-
Vol. 13, No. 3, June 2000
steroid treatment— given to 5 of 6 patients at entry—
was the main cause of painful osteoporosis, with
multiple vertebral compression fractures noted in
one of the study patients.
The OT (UKS) examined SSc skin involvement of
the hands and made a joint examination including
range of motion of digits and wrists. Three patients
had serious deficits of both flexion and extension of
all digits. Grip force of 10 seconds’ duration in the
dominant hand, measured in Newtons (N) by means
of an electronic instrument (Grippit, AB Detektor,
Sweden), had a mean value of 125 N (range 27–178
N), as compared with a mean value of 228 N (range
94 –356 N) in healthy women (12). The study pa-
tients had greater reduction of hand function (28%)
than of arm function (5%) and leg function (8%),
according to the Signals of Functional Impairment
measurement (SOFI; 13) performed by an observer
(UKS).
At study start, the self-assessed Health Assessment
Questionnaire (HAQ; 2,14 –16), used to score ADL
ability of the 6 patients, had a mean value of 0.3
(range 0 – 0.6), suggesting a low degree of ADL dys-
function.
Visual analog scales (VAS) for pain and for global
health during the previous week (17) were also ad-
ministered to the patients. At entry, 3 patients with
obvious pain scored poorly on the VAS global health
measure.
Two out of 6 subscales, depressed mood and pos-
itive well-being, from the Swedish version of the
self-administered Psychological General Well-Being
index (PGWB) (18,19) were utilized in this pilot
study. Four of the study patients had high positive
scores in both subscales, i.e., the patients were not
depressed.
The Swedish version of the Arthritis Self-Efficacy
Scale (ASES; 20 –23) was used to measure the per-
ceived self-efficacy to cope with the consequences of
a chronic rheumatic disease. The first subscale con-
cerns self-efficacy perception for controlling pain
(SEP), the second self-efficacy for performing func-
tions of daily living (SEF), and the third self-efficacy
for controlling other symptoms (SEOS) related to the
rheumatic disease. Three patients without current
pain (VAS ⫽ 0) reported maximum pain control in
the SEP subscale (Figure 1), while patient 6, who had
a VAS pain score of 95 mm, had an extremely low
SEP score at baseline. Also, the SEF scores (Figure 2)
indicated evident differences between the patients
in controlling ADL function. Because of the small
number of study patients, no reliable statistical ana-
lyses could be made (24).
Arthritis Care and Research Education Program for Scleroderma Patients 143

Table 1. Education program

Session 1
Presentation
Living with scleroderma
Patients suggest additional topics for the course
Goal-setting
Session 2
Followup
Medical aspects of scleroderma
Suggestion of topics for the dietitian
Goal-setting
Session 3
Followup
Anatomy
Home training program, leisure time, and exercise
Pain and pain control methods
Goal-setting
Session 4
Figure 1. Self-efficacy pain subscale. Assessment of self- Followup
efficacy perception for controlling pain. 10 ⫽ very uncer- Hand function in scleroderma, thermotherapy, and hand
tain, 100 ⫽ very certain. exercises
Joint protection and splints
Activity of daily living and problem-solving
Skin care
The education program. The patient education Goal-setting
program was developed by the rheumatology team Session 5
members and was based on the needs and problems Followup of goal-setting
registered in the study patient group. A SSc educa- Physiotherapy and thermotherapy
tion program from Sydney, Australia, was used as a Relaxation methods
Ergonomics, assistive devices, and energy conservation
model (25). The self-efficacy theory described previ- behaviors
ously (10,11) was used as the main theoretical basis.
Session 6
The OT (UKS) had the main responsibility for the
Followup
modeling of the course. Dietary matters
Influence of the disease on work, family, and leisure activities
Session 7
Followup of medical aspects of scleroderma
Patients’ topics
Practical activity in training kitchen
Conclusion

The following goals were set for the course: 1) to

Figure 2. Self-efficacy function subscale. Assessment of
self-efficacy for performing functions of daily living. 10 ⫽
very uncertain, 100 ⫽ very certain.
increase the patients’ knowledge about the disease,
2) to decrease the patients’ feelings of being con-
cerned about the illness, 3) to facilitate daily activi-
ties and influence the participants to adapt their
behavior to their current capacity, 4) to help the
participants formulate realistic goals that they could
reach during the course, and 5) to make possible
contacts and comparisons of experiences with other
SSc patients.
The program included seven 3-hour group ses-
sions for 5 weeks (Table 1). Every session began with
a summation of the preceding meeting. The OT
served as the group leader and joined the group
144 Samuelson and Ahlmén
during all sessions. The education methods used
were group discussion, problem-solving, guided
practice, and lecture.
The first session began with a presentation of the
team members and the patients taking part in the
course. A conversation concerning experiences of
“living with scleroderma” followed, led by the social
worker and the OT. After the education program was
introduced, the participants had an opportunity to
suggest additional topics for the course, and some
free time was also reserved at a later point to address
these topics.
During the second session, the rheumatologist
(EMA) informed the participants about medical as-
pects of the disease and about available treatment
methods. Time for discussion was included. Disease
problems suitable as topics for the session with the
dietitian were suggested. The assignment of home-
work concerning goal-setting ended this session.
During the third session, the PT taught the patients
about the construction of the human body and about
mobility in regard to bones, muscles, and joints. The
importance of physical activity was emphasized,
and the patients were led through the activities of a
home exercise program. Together with the nurse, the
PT provided information about different kinds of
physical pain control methods.
During the fourth session, the OT told the patients
about hand function and common SSc hand prob-
lems. A practical test of thermotherapy and hand
exercises was introduced, and information about
joint protection and splints was given. Skin care,
including problems concerning Raynaud’s phenom-
enon and digital ulcers, was also a topic of this
session. The patients discussed ADLs affected by the
disease, and how to solve such problems. Again, the
OT encouraged the patients to set goals; to facilitate
cooperation in making contracts, the participants
were divided into smaller groups.
During the fifth session, the patients carried out
exercises in a temperate pool, and were taught dif-
ferent relaxation methods by the PT. This was fol-
lowed by a discussion, led by the OT, about ergo-
nomics, the use of assistive devices, and energy
conservation behaviors.
A followup of the result of the goal-setting exercise
opened the sixth session. Information presented by
the dietitian and questions about dietary matters
followed. The social worker introduced a discussion
about how the disease influences everyday tasks,
work, and leisure activities. She also provided infor-
mation about available community resources.
During the last session, the rheumatologist met the
patients once again for followup and time for ques-
Vol. 13, No. 3, June 2000
tions. After that the patients carried out practical
activities in the training kitchen, with the opportu-
nity to use ergonomic methods and assistive devices.
This activity also served as an appropriate conclu-
sion of the course.
Evaluation of the program. The content and dis-
position of the program was evaluated by the study
patients utilizing a questionnaire distributed imme-
diately after the course. It included questions con-
cerning the number, frequency, and length of the
sessions, the size and composition of the study
group, and opinions about meeting others with the
same disease. There were also questions about the
education methods, the opportunity to express opin-
ions and ask questions, and whether the participants
had had sufficient opportunities to influence the
content of the course.
RESULTS
After the course, the rheumatology team members
discussed and evaluated the program. Most members
found that they themselves had improved their
knowledge about SSc patients. The professional
medical information given to the study patients was
readily accepted and led to fruitful discussions in
the group. However, the information about pain con-
trol was less appreciated, as some of the study pa-
tients were free from current pain.
The rheumatology team nurse’s presentation of
additional information about SSc medication and
physical medical treatment was found satisfying to
the patients. The team members found the session
about skin care to be more difficult to provide infor-
mation about because the team members had too
little practical experience of this problem. Among
the patients there was an interest in vegetarian diet
and other possible ways to influence disease symp-
toms by choosing different kinds of food. The pa-
tients also discussed swallowing and feeding prob-
lems with the dietitian.
The task of setting goals was found to be diffi-
cult— both for the OT and for some of the patients.
The task proved a bit easier when allowing less time
for theoretical information and more time for prac-
ticing and followup. The participants were divided
into two groups. One group needed a lot of support
from the OT and found the goal-setting hard to carry
out, while the participants of the other group, in-
cluding two teachers, had their own ideas and for-
mulated their contracts without any help from the
OT. The OT session concerning activities of daily
Arthritis Care and Research
Figure 3. Self-efficacy other symptoms subscale. Assess-
ment of self-efficacy for controlling other symptoms re-
lated to the rheumatic disease. 10 ⫽ very uncertain, 100 ⫽
very certain.
living, ergonomics, and energy conservation behav-
iors inspired a lively discussion, and the partici-
pants compared experiences and gave advice to one
another about how to solve problems.
Withdrawal of corticosteroid medication in one
patient resulted in an increased inflammatory reac-
tion with more joint pain and stiffness, noted not
only at the medical examination but also by the
assessment measurements. Also, an increase of va-
sodilating medication in another patient was dis-
closed by the medical examination but was not ob-
viously revealed by the other measurements.
Because the self-efficacy theory was used as the
main theoretical basis for the education program, the
ASES measures were of special interest, although the
small number of study subjects did not permit a
proper statistical analysis. The SEP (Figure 1) of 3
patients with obvious pain at baseline was higher at
the end of the course, indicating improvement. The
SEF scores (Figure 2) seemed stable. An increase in
perceived self-efficacy to cope with physical and
psychological symptoms of the disease, SEOS (Fig-
ure 3), was noted in 5 patients, while the sixth pa-
tient had excellent scores from the start.
One patient reported no pain, had a perfect global
health VAS score, and had high scores on the self-
efficacy scales (ASES) and the self-assessed PGWB.
In contrast, observer examinations disclosed sclero-
dactyly and calcinosis, symptoms of Raynaud’s phe-
nomenon, contractures of fingers, esophageal dys-
function, and lung fibrosis. A high dysfunction was
Education Program for Scleroderma Patients 145
disclosed in this patient by the SOFI, as scored by an
examiner, while the self-assessed HAQ score was
zero, showing good ADL function. The discrepancy
between the patient’s perception of the impact of her
disease and the serious consequences and dysfunc-
tion of the SSc found by the observer measures was
remarkable.
Already during the first session, the participants
showed a notable interest in each other, resulting in
a lot of conversation as they compared symptoms
and experiences of “living with scleroderma.” The
patients described both the great importance of hav-
ing support from their spouses and, for those who
were single, the importance of having a job. Saving
some energy for leisure time was judged as important.
The course evaluation questionnaire disclosed
that the participants were satisfied with the disposi-
tion of the course and with the size of the group.
They were very pleased to meet others with SSc, and
expressed a wish to convey a positive message con-
cerning the development of the disease to recently
diagnosed fellow SSc patients. The participants had
ample opportunities for questions and discussions,
and they were satisfied with the practical activities
involved in the course. On the other hand, they did
not get as much chance as desired to influence the
contents of the course. They wanted more informa-
tion about, for example, alternative medicine, add-
ing minerals to the diet, and the influence of amal-
gam teeth fillings and other poisons. The setting of
goals was, as mentioned, judged as less valuable.
The study patients had no problems understanding
or filling in the set of health assessment measure-
ments presented to them.
DISCUSSION
This pilot study of multidisciplinary patient edu-
cation in SSc included only 6 test subjects. Never-
theless, the course evaluation by the patients dis-
closed that the general aims were fullfilled in regard
to adequate medical SSc information, the discus-
sions of the various disease symptoms, and the func-
tional concern included in the topics chosen for the
course. The opportunity to make contact and com-
pare experiences with other SSc patients was as-
sessed as stimulating and important. The self-effi-
cacy theory was useful as a theoretical basis of the
education program, and its behavioral approach cor-
related well with the treatment methods and goals of
the rheumatology team. The aim of combining lec-
ture, discussion, practical activities, and problem-
solving was achieved and appreciated by the study
146 Samuelson and Ahlmén
group. However, the goal-setting component seemed
unfamiliar to some of the patients. The patients
noted positive experiences with the set of health
assessment measurements and found the tests rea-
sonable. The multidimensional functional informa-
tion received was appreciated both by the patients
and by the team members as a basis for topics to be
included in the course. These measures can be rec-
ommended for use in future studies involving SSc
patients. As mentioned, the number of patients in
this study was too small for reliable statistical ana-
lyses of the results of the measurements.
As legally established in the Swedish Act Con-
cerning Health and Medical Services, the patient has
the right to decide on his or her care and treatment.
It is therefore of importance that participants agree
with the goals of an education program. Information
about this course was given both in writing, by a
followup telephone call, and during an individual
meeting with the course leader before the start of the
course. That meeting was also an opportunity for the
patient and the group leader to get to know each
other. Presumably, it created a feeling of confidence
and security within the group. Using one group
leader who took part in all the sessions and who
could give support during the discussions, making it
possible for everyone to speak, was looked on as a
great advantage.
The opportunity to take part in the development of
the content of the course is presumably important for
the participants and might influence outcome (6).
That part was not altogether successful in our pro-
gram, although a multidimensional health assess-
ment was achieved. One recommendation is to meet
with the participants some time before the course in
order to solicit their requests for course content and
utilize these in the program. This method was ap-
plied successfully in the rheumatoid arthritis (RA)
education program developed by Lindroth and
Brattström (6). Another idea would be to study the
patients’ needs and problems by using focus group
interviews (26). In a Swedish study, the focus group
method has been used in developing a patient edu-
cation program for elderly visually impaired persons
(27) and also in an early RA study (28).
Before inclusion, all study patients had reported
experience of pain as a result of their disease. At
baseline, only 3 patients reported current pain. We
find it important to point out that an analysis of the
presence of pain and also of the type and cause of
pain among course participants is necessary before
preparing the pain session. The cause of pain in our
study patients varied, and each patient was in need
of individual information on pain control (6). Lin-
Vol. 13, No. 3, June 2000
droth (29) found that better ability to handle pain
correlated to increased knowledge about treatment
and pain relief.
As noted, the rheumatology team members did not
feel competent to handle the session about skin care.
A specialized, dermatology-trained nurse would be
needed to match the demands and prior knowledge
of the SSc patients concerning information on skin
care.
Hand problems are central to SSc patients, as was
confirmed in our study. Thus, the OT’s topics in-
spired much discussion and problem-solving during
the sessions. To see someone else with similar prob-
lems perform daily activities and solve these suc-
cessfully inspired other participants. Practical activ-
ities were combined with persuasion, e.g., in the
session about energy conservation behaviors and er-
gonomic instructions in a training kitchen, and also
in the sessions concerning thermotherapy and hand
exercises. Because of its importance, the OT sug-
gested more time be allotted during a course for
problem-solving, especially concerning ADL, hand
problems, and Raynaud’s phenomenon symptoms.
To enhance goal-setting, the participants were di-
vided into two groups to formulate contracts, e.g.,
doing their home exercises once a day. The goals
were reviewed at the next group session. One reason
for the reluctance among the participants to set goals
could be the fact that the group leader was not very
familiar with the method. Also, the method was new
to most of the patients and demanded a lot of activity
from each participant. The leader needs to strive to
make goal-setting more practical and less abstract.
As described for one of our study patients, the
HAQ has been noted to be an unreliable ADL dys-
function measure in some chronically ill patients
who deny ADL problems and have gradually grown
into an adjusted ADL pattern, which is then recog-
nized as normal and free from scoreable problems.
On the other hand, Poole et al (16) have reported that
SSc subjects scored themselves on the HAQ as hav-
ing greater disability and need of assistance and
assistive devices than was observed during their per-
formance of the activity in front of an examiner.
Thus, a set of different overall health measure-
ments— both self- and observer-assessed—seem jus-
tifiable to disclose the proper condition and need of
course topics and/or treatment interventions in SSc
patients. For assessment of results of occupational
therapy treatment, an alternative instrument, the
Evaluation of the Daily Activity Questionnaire, has
recently been presented (30).
All pilot study participants were very pleased to
Arthritis Care and Research
meet others with SSc, and this seemed to be of much
benefit to everybody. Only one of the 6 participants
had previously met someone else with SSc. With a
disease duration of between 4 and 10 years, the
participants had reached a certain level of adapta-
tion to the SSc itself. They discussed their experi-
ences from the first appearance of their illness, be-
fore they had received their diagnosis, and just after.
In an American study of SSc patients (31), the results
showed that uncertainty related to the disease, har-
diness, and social support were of great importance
in the capacity for social adaptation. This was also
noted among our study subjects. It is possible that a
study group with recently diagnosed patients to-
gether with patients with more experience of their
disease would have allowed more use of “model-
ing.” This mixing of course participants was also
recommended by the study patients.
Patient education is not only “a nice extra” but
should be accepted as an important part of the man-
agement of patients with a chronic rheumatic dis-
ease (32). Among studies of patients with arthritis,
educational interventions were noted to be approx-
imately 25% as efficacious as nonsteroidal anti-in-
flammatory drug (NSAID) treatment for pain relief
and 30 – 40% as efficacious as NSAID treatment for
improvement in functional disability (33). This
study supports the view that patient education is
also of importance for SSc patients.
This pilot study presents a multidisciplinary rheu-
matology team education program for patients with
SSc, tested on a representative, but small, 6-patient
study group. Most medical topics of the course, me-
diated by each team member, were judged adequate
by the course evaluation. Pain and skin care were
areas that needed special consideration. The use of
the self-efficacy theory as the basis of the education
program and its behavioral approach correlated well
with the treatment methods and goals of team care.
Goal-setting should be encouraged and facilitated.
The opportunity to contact other SSc patients and to
compare experiences was much appreciated by all
study patients. Patients stated their desire to have
influence on the topics of the course. The patients’
noted positive experiences with the set of health
assessment measurements are also of importance to
future and larger studies involving both qualitative
and quantitative followup of SSc patients. Studies
with larger groups of patients are needed to confirm
the value of multidisciplinary team educational
courses in SSc.
The authors acknowledge the valuable assistance of all team
members and especially the patients who took an active part in
Education Program for Scleroderma Patients 147
this study. Also, special thanks to Anna-Lisa Thorén Jœnsson, OT,
for guidance and fruitful discussions during the study.
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