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 goals stated concerning the topics included and pro-
and disposition of a systemic sclerosis (SSc; sclero- vided the opportunity for SSc patients to meet others
derma) patient education program. with the same diagnosis. A larger study group is
Methods. Six women with SSc constituted the needed in order to analyze the effects of the course
study group. Contents of the course were decided by and the measurements used.
the rheumatology team and were based on health Key words. Patient education; Systemic sclerosis;
assessments of the study participants made through Scleroderma; Self-efficacy; Evaluation.
medical examinations, measures of subjective symp-
toms, disability, physical and psychological func-
tion, and perceived self-efficacy, as well as the pa- INTRODUCTION
tients’ opinions. The self-efficacy theory was used as
the main theoretical basis for the education program. Systemic sclerosis (SSc; scleroderma) is an un-
Results. Both self-report and observer-scored usual and severe chronic rheumatic disease belong-
measurements of disease impact and function were ing to the group of systemic autoimmune connective
required to create the contents of the course. The tissue diseases. It is characterized by vascular
patients reported that the professional medical in- changes of the skin and internal organs, immune cell
formation met their needs, although skin care and activation, and an increased deposition of the extra-
pain are topics that need additional work in the cellular matrix (1). Studies indicate that scleroderma
curriculum. The participants were satisfied with the patients have significant physical disability (2,3).
program and the patient contacts, but found goal- SSc patients also describe a feeling of isolation and
setting to be an unfamiliar task. seldom or never meet someone else with the same
Conclusion. This pilot study of a multidisci- diagnosis (3).
plinary SSc education program fullfilled the general In Sweden patient education in chronic arthritis is
managed by all health professionals in the multidis-
ciplinary rheumatology team, i.e., a rheumatologist,
Supported by grants from the Swedish Rheumatism Associa- an occupational therapist (OT), a physical therapist
tion. (PT), a social worker, a nurse, and at times a dieti-
Ulla K. Samuelson, OT, Department of Occupational Therapy, tian. The aim of patient education courses (4 – 6) is to
and E. Monica Ahlmén, MD, Rheumatology Unit, Sahlgrenska give information about the disease and about joint
University Hospital/Mœlndal, Mœlndal, Sweden.
protection, to facilitate the performance of activities
Address correspondence to Ulla K. Samuelson, OT, Department
of Occupational Therapy, Sahlgrenska University Hospital/Mœln- of daily living (ADLs), and to reduce pain and fatigue
dal, S-431 80 Mœlndal, Sweden. through the use of assistive devices and adjusted
Submitted for publication August 19, 1998; accepted in revised working methods. At the time of this study, no SSc
form January 22, 2000. education program was available in Sweden.
© 2000 by the American College of Rheumatology. In studies of patient education in arthritis, benefi-

0893-7524/00/$5.00 141
142 Samuelson and Ahlmén Vol. 13, No. 3, June 2000

cial health outcomes have not correlated substan- steroid treatment— given to 5 of 6 patients at entry—
tially with adoption of taught behaviors, but have was the main cause of painful osteoporosis, with
correlated significantly with an unanticipated preex- multiple vertebral compression fractures noted in
isting psychological attribute, perceived self-effi- one of the study patients.
cacy, which also increased significantly during the The OT (UKS) examined SSc skin involvement of
time of education (7–9). Perceived self-efficacy is a the hands and made a joint examination including
patient’s judgment of his or her coping capabilities range of motion of digits and wrists. Three patients
in designated areas of functioning. had serious deficits of both flexion and extension of
Several methods to enhance the level of perceived all digits. Grip force of 10 seconds’ duration in the
self-efficacy have been described (10,11): skills mas- dominant hand, measured in Newtons (N) by means
tery, i.e., becoming more efficacious in the area con- of an electronic instrument (Grippit, AB Detektor,
cerned; providing a model, i.e., seeing someone else Sweden), had a mean value of 125 N (range 27–178
with the same problem successfully achieving a N), as compared with a mean value of 228 N (range
change of behavior; and persuasion combined with 94 –356 N) in healthy women (12). The study pa-
practical activities, e.g., participants in patient edu- tients had greater reduction of hand function (28%)
cation working together in small groups to solve than of arm function (5%) and leg function (8%),
problems and set goals. Reinterpretation of physio- according to the Signals of Functional Impairment
logic signs and symptoms is also a way to enhance measurement (SOFI; 13) performed by an observer
self-efficacy. The aims of the present study were thus (UKS).
to develop a multidisciplinary team education pro- At study start, the self-assessed Health Assessment
gram for persons with SSc and to test this program Questionnaire (HAQ; 2,14 –16), used to score ADL
on a representative group of patients, assessed by ability of the 6 patients, had a mean value of 0.3
observer examinations and a set of self-reported
(range 0 – 0.6), suggesting a low degree of ADL dys-
measurements, and to evaluate the content and dis-
function.
position of the course.
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
PATIENTS AND METHODS
obvious pain scored poorly on the VAS global health
measure.
Patients and assessment measures. Out of about
Two out of 6 subscales, depressed mood and pos-
55 SSc patients registered at the rheumatology units
of Sahlgrenska University Hospital, Goeteborg and itive well-being, from the Swedish version of the
Moelndal, Sweden in 1993, 6 female SSc patients self-administered Psychological General Well-Being
were recruited for this study. They expressed an index (PGWB) (18,19) were utilized in this pilot
interest in attending the education course and had a study. Four of the study patients had high positive
multisymptomatic medical history of SSc, including scores in both subscales, i.e., the patients were not
periods of pain. Mean age at baseline was 62 years depressed.
(range 47–74), and the duration of SSc symptoms The Swedish version of the Arthritis Self-Efficacy
was a mean of 8 years (range 4 –11). The duration Scale (ASES; 20 –23) was used to measure the per-
from diagnosis to taking part in the course ranged ceived self-efficacy to cope with the consequences of
between 2 and 9 years. a chronic rheumatic disease. The first subscale con-
At inclusion and 3 months after the course, a med- cerns self-efficacy perception for controlling pain
ical examination was performed, and a set of con- (SEP), the second self-efficacy for performing func-
ceivable assessment measurements was applied to tions of daily living (SEF), and the third self-efficacy
the study patients for further health screening. Five for controlling other symptoms (SEOS) related to the
of the 6 patients had gradually developed the CREST rheumatic disease. Three patients without current
syndrome. The dominating symptoms were Ray- pain (VAS ⫽ 0) reported maximum pain control in
naud’s phenomenon (R), sclerodactyly (S) and telan- the SEP subscale (Figure 1), while patient 6, who had
giectasia (T), while calcinosis (C) and esophageal a VAS pain score of 95 mm, had an extremely low
dysmotility (E) problems were less pronounced. In- SEP score at baseline. Also, the SEF scores (Figure 2)
ternal organ involvement of the SSc was noted in indicated evident differences between the patients
two patients who had pulmonary fibrosis and im- in controlling ADL function. Because of the small
pairment of the renal glomerular filtration rate. Va- number of study patients, no reliable statistical ana-
sodilating drugs were given to all patients. Cortico- 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

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-
Figure 2. Self-efficacy function subscale. Assessment of sions for 5 weeks (Table 1). Every session began with
self-efficacy for performing functions of daily living. 10 ⫽ a summation of the preceding meeting. The OT
very uncertain, 100 ⫽ very certain. served as the group leader and joined the group
144 Samuelson and Ahlmén Vol. 13, No. 3, June 2000

during all sessions. The education methods used tions. After that the patients carried out practical
were group discussion, problem-solving, guided activities in the training kitchen, with the opportu-
practice, and lecture. nity to use ergonomic methods and assistive devices.
The first session began with a presentation of the This activity also served as an appropriate conclu-
team members and the patients taking part in the sion of the course.
course. A conversation concerning experiences of
“living with scleroderma” followed, led by the social Evaluation of the program. The content and dis-
worker and the OT. After the education program was position of the program was evaluated by the study
introduced, the participants had an opportunity to patients utilizing a questionnaire distributed imme-
suggest additional topics for the course, and some diately after the course. It included questions con-
free time was also reserved at a later point to address cerning the number, frequency, and length of the
these topics. sessions, the size and composition of the study
During the second session, the rheumatologist group, and opinions about meeting others with the
(EMA) informed the participants about medical as- same disease. There were also questions about the
pects of the disease and about available treatment education methods, the opportunity to express opin-
methods. Time for discussion was included. Disease ions and ask questions, and whether the participants
problems suitable as topics for the session with the had had sufficient opportunities to influence the
dietitian were suggested. The assignment of home- content of the course.
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 RESULTS
mobility in regard to bones, muscles, and joints. The
importance of physical activity was emphasized, After the course, the rheumatology team members
and the patients were led through the activities of a discussed and evaluated the program. Most members
home exercise program. Together with the nurse, the found that they themselves had improved their
PT provided information about different kinds of knowledge about SSc patients. The professional
physical pain control methods. medical information given to the study patients was
During the fourth session, the OT told the patients readily accepted and led to fruitful discussions in
about hand function and common SSc hand prob- the group. However, the information about pain con-
lems. A practical test of thermotherapy and hand trol was less appreciated, as some of the study pa-
exercises was introduced, and information about tients were free from current pain.
joint protection and splints was given. Skin care, The rheumatology team nurse’s presentation of
including problems concerning Raynaud’s phenom- additional information about SSc medication and
enon and digital ulcers, was also a topic of this physical medical treatment was found satisfying to
session. The patients discussed ADLs affected by the the patients. The team members found the session
disease, and how to solve such problems. Again, the about skin care to be more difficult to provide infor-
OT encouraged the patients to set goals; to facilitate mation about because the team members had too
cooperation in making contracts, the participants little practical experience of this problem. Among
were divided into smaller groups. the patients there was an interest in vegetarian diet
During the fifth session, the patients carried out and other possible ways to influence disease symp-
exercises in a temperate pool, and were taught dif- toms by choosing different kinds of food. The pa-
ferent relaxation methods by the PT. This was fol- tients also discussed swallowing and feeding prob-
lowed by a discussion, led by the OT, about ergo- lems with the dietitian.
nomics, the use of assistive devices, and energy The task of setting goals was found to be diffi-
conservation behaviors. cult— both for the OT and for some of the patients.
A followup of the result of the goal-setting exercise The task proved a bit easier when allowing less time
opened the sixth session. Information presented by for theoretical information and more time for prac-
the dietitian and questions about dietary matters ticing and followup. The participants were divided
followed. The social worker introduced a discussion into two groups. One group needed a lot of support
about how the disease influences everyday tasks, from the OT and found the goal-setting hard to carry
work, and leisure activities. She also provided infor- out, while the participants of the other group, in-
mation about available community resources. cluding two teachers, had their own ideas and for-
During the last session, the rheumatologist met the mulated their contracts without any help from the
patients once again for followup and time for ques- OT. The OT session concerning activities of daily
Arthritis Care and Research 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-
Figure 3. Self-efficacy other symptoms subscale. Assess- tion of the course and with the size of the group.
ment of self-efficacy for controlling other symptoms re- They were very pleased to meet others with SSc, and
lated to the rheumatic disease. 10 ⫽ very uncertain, 100 ⫽ expressed a wish to convey a positive message con-
very certain. cerning the development of the disease to recently
diagnosed fellow SSc patients. The participants had
ample opportunities for questions and discussions,
living, ergonomics, and energy conservation behav- and they were satisfied with the practical activities
iors inspired a lively discussion, and the partici- involved in the course. On the other hand, they did
pants compared experiences and gave advice to one not get as much chance as desired to influence the
another about how to solve problems. contents of the course. They wanted more informa-
Withdrawal of corticosteroid medication in one tion about, for example, alternative medicine, add-
patient resulted in an increased inflammatory reac- ing minerals to the diet, and the influence of amal-
tion with more joint pain and stiffness, noted not gam teeth fillings and other poisons. The setting of
only at the medical examination but also by the goals was, as mentioned, judged as less valuable.
assessment measurements. Also, an increase of va- The study patients had no problems understanding
sodilating medication in another patient was dis- or filling in the set of health assessment measure-
closed by the medical examination but was not ob- ments presented to them.
viously revealed by the other measurements.
Because the self-efficacy theory was used as the
main theoretical basis for the education program, the DISCUSSION
ASES measures were of special interest, although the
small number of study subjects did not permit a This pilot study of multidisciplinary patient edu-
proper statistical analysis. The SEP (Figure 1) of 3 cation in SSc included only 6 test subjects. Never-
patients with obvious pain at baseline was higher at theless, the course evaluation by the patients dis-
the end of the course, indicating improvement. The closed that the general aims were fullfilled in regard
SEF scores (Figure 2) seemed stable. An increase in to adequate medical SSc information, the discus-
perceived self-efficacy to cope with physical and sions of the various disease symptoms, and the func-
psychological symptoms of the disease, SEOS (Fig- tional concern included in the topics chosen for the
ure 3), was noted in 5 patients, while the sixth pa- course. The opportunity to make contact and com-
tient had excellent scores from the start. pare experiences with other SSc patients was as-
One patient reported no pain, had a perfect global sessed as stimulating and important. The self-effi-
health VAS score, and had high scores on the self- cacy theory was useful as a theoretical basis of the
efficacy scales (ASES) and the self-assessed PGWB. education program, and its behavioral approach cor-
In contrast, observer examinations disclosed sclero- related well with the treatment methods and goals of
dactyly and calcinosis, symptoms of Raynaud’s phe- the rheumatology team. The aim of combining lec-
nomenon, contractures of fingers, esophageal dys- ture, discussion, practical activities, and problem-
function, and lung fibrosis. A high dysfunction was solving was achieved and appreciated by the study
146 Samuelson and Ahlmén Vol. 13, No. 3, June 2000

group. However, the goal-setting component seemed droth (29) found that better ability to handle pain
unfamiliar to some of the patients. The patients correlated to increased knowledge about treatment
noted positive experiences with the set of health and pain relief.
assessment measurements and found the tests rea- As noted, the rheumatology team members did not
sonable. The multidimensional functional informa- feel competent to handle the session about skin care.
tion received was appreciated both by the patients A specialized, dermatology-trained nurse would be
and by the team members as a basis for topics to be needed to match the demands and prior knowledge
included in the course. These measures can be rec- of the SSc patients concerning information on skin
ommended for use in future studies involving SSc care.
patients. As mentioned, the number of patients in Hand problems are central to SSc patients, as was
this study was too small for reliable statistical ana- confirmed in our study. Thus, the OT’s topics in-
lyses of the results of the measurements. spired much discussion and problem-solving during
As legally established in the Swedish Act Con- the sessions. To see someone else with similar prob-
cerning Health and Medical Services, the patient has lems perform daily activities and solve these suc-
the right to decide on his or her care and treatment. cessfully inspired other participants. Practical activ-
It is therefore of importance that participants agree ities were combined with persuasion, e.g., in the
with the goals of an education program. Information session about energy conservation behaviors and er-
about this course was given both in writing, by a gonomic instructions in a training kitchen, and also
followup telephone call, and during an individual in the sessions concerning thermotherapy and hand
meeting with the course leader before the start of the exercises. Because of its importance, the OT sug-
course. That meeting was also an opportunity for the gested more time be allotted during a course for
patient and the group leader to get to know each problem-solving, especially concerning ADL, hand
other. Presumably, it created a feeling of confidence
problems, and Raynaud’s phenomenon symptoms.
and security within the group. Using one group
To enhance goal-setting, the participants were di-
leader who took part in all the sessions and who
vided into two groups to formulate contracts, e.g.,
could give support during the discussions, making it
doing their home exercises once a day. The goals
possible for everyone to speak, was looked on as a
were reviewed at the next group session. One reason
great advantage.
for the reluctance among the participants to set goals
The opportunity to take part in the development of
could be the fact that the group leader was not very
the content of the course is presumably important for
familiar with the method. Also, the method was new
the participants and might influence outcome (6).
That part was not altogether successful in our pro- to most of the patients and demanded a lot of activity
gram, although a multidimensional health assess- from each participant. The leader needs to strive to
ment was achieved. One recommendation is to meet make goal-setting more practical and less abstract.
with the participants some time before the course in As described for one of our study patients, the
order to solicit their requests for course content and HAQ has been noted to be an unreliable ADL dys-
utilize these in the program. This method was ap- function measure in some chronically ill patients
plied successfully in the rheumatoid arthritis (RA) who deny ADL problems and have gradually grown
education program developed by Lindroth and into an adjusted ADL pattern, which is then recog-
Brattström (6). Another idea would be to study the nized as normal and free from scoreable problems.
patients’ needs and problems by using focus group On the other hand, Poole et al (16) have reported that
interviews (26). In a Swedish study, the focus group SSc subjects scored themselves on the HAQ as hav-
method has been used in developing a patient edu- ing greater disability and need of assistance and
cation program for elderly visually impaired persons assistive devices than was observed during their per-
(27) and also in an early RA study (28). formance of the activity in front of an examiner.
Before inclusion, all study patients had reported Thus, a set of different overall health measure-
experience of pain as a result of their disease. At ments— both self- and observer-assessed—seem jus-
baseline, only 3 patients reported current pain. We tifiable to disclose the proper condition and need of
find it important to point out that an analysis of the course topics and/or treatment interventions in SSc
presence of pain and also of the type and cause of patients. For assessment of results of occupational
pain among course participants is necessary before therapy treatment, an alternative instrument, the
preparing the pain session. The cause of pain in our Evaluation of the Daily Activity Questionnaire, has
study patients varied, and each patient was in need recently been presented (30).
of individual information on pain control (6). Lin- All pilot study participants were very pleased to
Arthritis Care and Research Education Program for Scleroderma Patients 147

meet others with SSc, and this seemed to be of much this study. Also, special thanks to Anna-Lisa Thorén Jœnsson, OT,
benefit to everybody. Only one of the 6 participants for guidance and fruitful discussions during the study.
had previously met someone else with SSc. With a
disease duration of between 4 and 10 years, the
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