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Rheumatology careInvolvement in medical decisions received information satisfaction with care and unmet health care needs in patients with rheumatoid arthritis and ankylosing spondylitis.

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Arthritis & Rheumatism (Arthritis Care & Research)
Vol. 55, No. 3, June 15, 2006, pp 394 – 401
DOI 10.1002/art.21985
© 2006, American College of Rheumatology
Rheumatology Care: Involvement in Medical
Decisions, Received Information, Satisfaction
With Care, and Unmet Health Care Needs in
Patients With Rheumatoid Arthritis and
Ankylosing Spondylitis
Objective. To examine levels of received information, involvement in medical decisions, and satisfaction with care, to
explore factors related to current involvement in medical decisions, and to assess patients’ unmet health care needs
related to their disease.
Methods. A total of 1,193 patients with rheumatoid arthritis and ankylosing spondylitis completed self-reported health
status questionnaires, including registration of sociodemographic data and questions about rheumatology care. Separate
questions addressed information received, involvement in decisions, and satisfaction with care. Aspects of unmet health
were assessed by an open-ended question.
Results. The majority of patients reported medium to high levels of received information, involvement in medical
decisions, and satisfaction with care. High involvement in medical decisions was univariately associated with high levels
of perceived information and satisfaction, as well as with lower age and a good health status. In the multivariate analyses,
patient satisfaction (odds ratio [OR] 4.21) and a high level of received information (OR 7.85), age (OR 0.99), and >12 years
of formal education (OR 1.46) remained as significant predictors to current involvement. Nearly one-third reported a
variety of unmet health care needs, and this report was associated with poor health.
Conclusion. The results indicate a need for a more flexible and patient centered care model, in which patients to a larger
degree can decide which services they need and how these services should be delivered.
KEY WORDS. Arthritis; Patient participation; Patient satisfaction; Health services research.
In the last decade, patient participation in care has been
increasingly advocated. On an individual level, patients
are involved in medical decisions and take increased responsibility for managing their disease (1–3). On a broader
Ingvild Kjeken, OTR, MSc, Hanne Dagfinrud, RPT, MSc,
Petter Mowinckel, MSc, Till Uhlig, PhD, MD: National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway; 2Tore K. Kvien, PhD, MD:
Diakonhjemmet Hospital, Oslo, Norway; 3Arnstein Finset,
PhD: Institute of Basic Medical Sciences, University of Oslo,
Address correspondence to Ingvild Kjeken, OTR, MSc,
Diakonhjemmet Hospital, boks 23 Vinderen, 0319 Oslo,
Norway. E-mail:
Submitted for publication July 29, 2005; accepted in revised form September 15, 2005.
level, patients’ feedback on the content and provision of
health care is used to develop services that match the
patients’ needs (4). Moreover, patients influence the research agenda by raising research questions, and by identifying and assessing important outcomes (5–7).
Recent studies indicate that patient involvement in
medical decisions may lead to improved outcomes and
better adjustment (1,8). The patients want to be informed
about medications and alternative options in order to feel
competent to participate in such decisions (1,3,9). Therefore, patient education has been emphasized (10,11). The
rapid expansion of the Internet has facilitated access to
information about diseases, treatment options, and patients’ rights (12,13). However, several studies have shown
that personal factors, such as age, sex, and level of selfefficacy, play an important role in mediating the disease
outcomes (14 –16). Previous studies have also reported
that patients who are satisfied with their health care are
Rheumatology Care in RA and AS
more likely to be involved in medical decisions and to
comply with recommended treatment strategies, and less
likely to experience adverse health outcomes (4,17,18).
To ensure health care quality, it is important to ask
patients to identify unmet health care needs (4,19). When
specific needs are investigated, the recommendation is to
collect data directly from the targeted population, because
patient perceptions may be more sensitive to differences
across health care delivery systems than many traditional
measures of quality (4,20).
Diakonhjemmet Hospital has a catchments area of approximately 550,000 inhabitants, and is serving the vast
majority of patients with rheumatic diseases living in
Oslo, Norway. As in many other rheumatology departments, the number of rheumatology beds and length of
stay in the hospital have been considerably decreased over
the last 10 years, while the number of outpatient consultations has increased. However, little is known about how
these structural changes in delivery of care are experienced by the patients.
New collections of data in the hospital’s registries of
patients with rheumatoid arthritis (RA) and ankylosing
spondylitis (AS) were organized in 2004 and 2003, respectively. We wanted to use this opportunity to examine
levels of received information, involvement in medical
decisions and satisfaction with care, explore which factors
are related to current involvement in medical decisions,
and assess patients’ unmet health care needs related to
their disease and examine how these unmet needs were
related to health status.
Patients. Data for the analyses were retrieved from patient surveys of the Oslo Rheumatoid Arthritis Register
(RA-register) and the Ankylosing Spondylitis Register (ASregister) at Diakonhjemmet Hospital, Oslo, Norway. The
RA-register was established in 1994 (21). Inclusion criteria
are a diagnosis of RA and a residential address in Oslo.
The register is annually updated with data on new and
deceased cases, and was estimated in 1996 to have a completeness of 85% (i.e., 85% of all possible cases with RA in
the Oslo region were included in the register). Data in the
RA-register have been collected through postal surveys,
where the participants were asked to answer questions
regarding sociodemographic and disease related factors,
and to complete several self-reported health status questionnaires. The AS-register was established in 2002 (22).
Inclusion criteria are AS according to the New York classification criteria (23) and a residential address in Oslo. In
2003, those still living in Oslo were asked to undergo a
clinical examination including completion of questionnaires.
The inclusion criteria of the present study were the same
as in the registers, and all patients who attended the data
collection in the registers in 2003 (AS) and 2004 (RA) were
thus included in the study. Data collection in both registers has been approved by the Ethical Committee for Medical Research. Patient reported data from the respondents
seem to be representative of the entire patient population
in both registers (21,22).
Study design and data collection. This study was performed with a cross-sectional design. Age was measured in
years, whereas sex, marital status, and work status were
recorded as dichotomous variables. Formal education was
recorded as ⱕ12 years, or ⬎12 years of education. Selfefficacy is concerned with people’s judgements of their
capabilities to execute given levels of performance and to
exercise control over events (24), and was measured using
the pain subscale of the Arthritis Self-Efficacy Scale (25).
The self-efficacy pain score is the mean of 5 statements
concerning pain, and is expressed as a value between 10
and 100, with a score of 10 representing the lowest possible level of self-efficacy.
Disease duration was measured in years, and presence of
comorbidity was recorded as yes or no. The patients’
global assessments of pain, fatigue, and disease activity
were recorded on 100-mm visual analog scales, ranging
from 0 (indicating no pain, fatigue, or disease activity) to
100 (indicating highest levels of pain, fatigue, or disease
activity). Health status was measured using the Medical
Outcomes Study Short Form 36 (SF-36) and a modified
version of the Stanford Health Assessment Questionnaire
(MHAQ). SF-36 is a generic health measure with 8 subscales (physical functioning, role limitations due to physical problems, bodily pain, general health perceptions,
vitality, social functioning, mental health, and role limitation due to emotional problems) (26,27). Each scale is
expressed with values from 0 to 100, where low scores
indicate poor health. MHAQ is an 8-item questionnaire
developed to measure ability to perform activities of daily
living in patients with arthritis (the scale is 1– 4, where 4
indicates the worst health) (28).
Data on received information, patients’ involvement in
medical decisions, satisfaction with care, and unmet
health care needs were collected by a questionnaire, containing both closed and open-ended questions, thereby
tapping quantitative and qualitative data. Received information was scored by the patients on a 3-point scale
(none/some/much) as responses to the following questions: 1) Have you received information from health professionals on your diagnosis and medical treatment? 2)
Have you received advice and information from health
professionals on activities you can perform to improve
your condition, for example exercise or correct use of
joints and muscles? and 3) Have you received advice and
information from health professionals on what you can do
to improve performance of daily activities, such as to use
assistive devices, to alter working methods, or to do environmental changes at home or at work? Each of these 3
questions was followed by an additional question: Do you
need more information regarding this issue? The potential
response was yes or no.
To assess involvement in medical decisions, the patients
were asked 2 questions: 1) Have you experienced an influence on medical decisions? (possible responses no/
some/much), and 2) Do you to a greater extent want to
participate in medical decisions regarding your disease?
(possible responses yes/no). Satisfaction with care was
assessed on a 5-point scale (where 0 ⫽ very dissatisfied
and 4 ⫽ very satisfied) in response to the question “How
satisfied are you with the health care you receive for your
Kjeken et al
Table 1. Personal variables and disease variables in 1,193 patients with RA (data from 2004) or AS (data from 2003)*
Sex, % female
Age, years
Living with partner, % yes
Still working, % yes
Formal education ⬎12 years, %
ASES pain
Disease duration, years
Comorbidity, % yes
Disease activity‡
(n ⴝ 1,193)
(n ⴝ 1,041)
(n ⴝ 152)
59.6 ⫾ 15.6
54.6 ⫾ 18.5
61.5 ⫾ 15.1
53.9 ⫾ 18.5
46.9 ⫾ 13.1
59.0 ⫾ 17.8
⬍ 0.001
⬍ 0.001
⬍ 0.001
⬍ 0.001
14.2 ⫾ 12.0
39.6 ⫾ 25.0
47.7 ⫾ 29.6
36.1 ⫾ 24.5
1.55 ⫾ 0.54
14.1 ⫾ 11.3
38.9 ⫾ 25.2
46.6 ⫾ 29.5
35.2 ⫾ 24.2
1.6 ⫾ 0.55
15.2 ⫾ 12.3
44.4 ⫾ 23.2
55.0 ⫾ 28.5
42.5 ⫾ 26.0
1.4 ⫾ 0.43
⬍ 0.001
⬍ 0.001
* Values are mean ⫾ SD unless otherwise indicated. RA ⫽ rheumatoid arthritis; AS ⫽ ankylosing spondylitis; ASES ⫽ pain subscale of the Arthritis
Self-Efficacy Scale (range 10 –100, 10 is low efficacy); MHAQ ⫽ modified version of the Stanford Health Assessment Questionnaire (range 1– 4, 1 is good
† Difference between RA and AS patients by independent sample t-test for means and chi-square test for proportions.
‡ Measured on a 100-mm visual analog scale where 0 is no activity, no fatigue, or no pain.
arthritis?” Unmet health care needs were explored by the
yes/no question “Do you experience unmet health care
needs due to your disease?” followed by an open-ended
question “If yes, what are these?”
Statistical analysis. The qualitative data concerning unmet health care needs were analyzed in 2 steps: a first
analysis was carried out separately by 2 of the authors (IK
and HD), by reading through the patients’ statements concerning health care needs and identifying codes to describe the data, before combining the codes into broader
categories and themes (29). Thereafter the 2 analyses were
compared and discussed until an agreement was reached.
Frequency counts on responses were performed where
Statistical comparisons between groups (RA versus AS,
patients with low and high involvement in medical decisions, and patients with and without unmet health care
needs) were done for the continuous variables by t-test for
independent sample, and 2-sided chi-square test for proportions. Levels of perceived information and involvement were examined in the entire patient population and
in the subgroup who expressed a need for more information or involvement.
A multivariate logistic regression model of predictors for
current involvement in medical decisions was built as
follows: the dependent variable “current involvement”
was dichotomized by computing no involvement and
some involvement as 0 (low involvement), and much involvement as 1 (high involvement). Two of the independent variables were recoded as follows: satisfaction with
care was dichotomized by categorizing very dissatisfied,
somewhat dissatisfied, and neutral as dissatisfied, and
somewhat satisfied and very satisfied as satisfied. A patient information score was computed as the sum of the 3
information questions (ranging from 0 ⫽ no information to
6 ⫽ maximum information). Thereafter the patient information score was trichotomized by computing the 2 lowest
levels of information as no information, the 3 medium
values as some information, and the 2 highest levels of
information as much information. Mean MHAQ score was
used as a measure of global health status.
Explanatory variables with a P value ⱕ0.25 in the bivariate analysis were included in the model. Variables not
significantly associated with the outcome variable were
removed from the final model, except for age and sex,
which were included and kept regardless of the P value.
Thereafter, variables not statistically significant in the first
steps of the regression model were tested for confounding
effects. Finally, variables in the final model were examined for possible interactions. SPSS for Windows, version
11.0 (SPSS, Chicago, IL) was used for the statistical analyses. All variables in the analyses had fewer than 10%
missing cases. P values less than 0.05 were considered
Patients, personal variables, and disease variables. Of
the 283 patients with AS invited to participate, 152 patients (54%) attended the study, while 1,041 (58%) of the
1,794 invited RA patients completed the questionnaires.
Therefore, the analyses were based on a total of 1,193
The characteristics of the patients are presented in Table
1. As expected, there were significant differences between
the RA group and the AS group in all variables except
marital status and disease duration.
Rheumatology Care in RA and AS
Table 2. Percentage of rheumatoid arthritis (RA) and ankylosing spondylitis (AS) patients reporting various levels of received
information, involvement in medical decisions, satisfaction with care, and need for more information or involvement
Health care variables
Information about diagnosis and medication
Information about exercises
Information about daily activities
Involvement in medical decisions
Satisfaction with care
Very satisfied
Somewhat satisfied
Somewhat dissatisfied
Very dissatisfied
(n ⴝ 1,193)
(n ⴝ 1,041)
(n ⴝ 152)
Need for
⬍ 0.001
⬍ 0.001
* Distribution of percentages within the total population.
† Difference between RA and AS patients by independent sample t-test for means and chi-square test for proportions.
‡ Percentages within groups reporting none, some, or much information or involvement, respectively, who report need for more information or
Received information, involvement in medical decisions, and satisfaction with care. Of the total 1,193 patients, 12% reported that they had received no information
about diagnosis and medication, while 24% and 35% had
received no information about exercises and ways to improve performance of daily activities, respectively (Table
2). The AS patients had received significantly more information about both diagnosis and medication, and exercises when compared with the RA patients. A larger percentage of patients in the group who had received little or
no information wanted more information, compared with
those who had received much information (Table 2). Of
those patients reporting having received no information,
50% wanted more information about diagnosis and medications, 69% wanted more information about exercises,
and 48% wanted information on how to improve performance of daily activities.
Regarding involvement in medical decisions, 27% of the
patients reported no involvement, 48% reported some involvement, and 25% reported much involvement. The patients with AS were significantly more likely to report
involvement than RA patients (Table 2). However, among
those who reported no involvement, 30% of the patients
reported no desire for more involvement. A total of 68% of
the patients were very or somewhat satisfied with the
health care provided, while 8% of the patients were somewhat or very dissatisfied. There was no significant difference in satisfaction with care between the RA and the AS
Factors related to current involvement in medical decisions. In the bivariate analyses, high involvement in
medical decisions was significantly associated with high
levels of perceived information and satisfaction with care,
as well as with lower age and a good health status (Table
3). All explanatory variables had a P value ⱕ0.25 in the
bivariate analyses and were therefore included in the multivariate model. In the multivariate logistic regression analysis, 4 variables remained significantly associated with
patient involvement in medical decisions: lower age, high
level of formal education, high level of satisfaction with
care, and a high level of received information (Table 4).
Unmet health care needs. A total of 40 (26%) of the
patients with AS and 285 (27%) of the patients with RA
stated that they experienced unmet health care needs due
to their arthritis, whereas 37 (24%) of the AS respondents
and 267 (26%) of the RA respondents described specific,
and most commonly, multiple needs (Figure 1).
The descriptions were categorized into 9 themes: physical symptoms or consequences of the disease related to
body structures and body functions, quality of care, health
care services, psychological and/or social consequences of
the disease, medication, comorbidity, activity and participation, concerns about the future, and others (Figure 1).
The most frequently described needs related to body impairments were fatigue, pain, and joint dysfunction. Regarding quality of care, the need for more time with health
care providers, continuity, followup, and holistic care
Kjeken et al
Table 3. Comparison between the groups with low involvement and high involvement in
medical decisions (personal variables, disease variables, and health care variables) in
1,193 patients with RA or AS*
Sex, % female
Age, years
Living with partner, % yes
Still working, % yes
Formal education ⬍12 years, %
ASES self-efficacy pain
Diagnosis, % RA
Disease duration, years
Comorbidity, % yes
Disease activity‡
MHAQ physical function
Health care
Information, % received
Satisfaction with care, % satisfied
(75% of
(25% of
61.0 ⫾ 15.9
53.4 ⫾ 18.5
54.9 ⫾ 13.7
58.6 ⫾ 17.5
⬍ 0.001
⬍ 0.001
⬍ 0.001
⬍ 0.001
14.5 ⫾ 11.5
40.8 ⫾ 24.9
48.9 ⫾ 29.5
37.0 ⫾ 24.6
1.56 ⫾ 0.54
13.3 ⫾ 10.7
36.4 ⫾ 23.9
44.6 ⫾ 29.1
33.3 ⫾ 23.3
1.51 ⫾ 0.52
⬍ 0.001
⬍ 0.001
* Values are mean ⫾ SD unless otherwise indicated. RA ⫽ rheumatoid arthritis; AS ⫽ ankylosing
spondylitis; ASES ⫽ pain subscale of the Arthritis Self-Efficacy Scale (range 10 –100, where 10 is low
efficacy); MHAQ ⫽ modified version of the Stanford Health Assessment Questionnaire (range 1– 4, where
1 is good function).
† Difference between patients with low or high involvement by independent sample t-test for means and
chi-square test for proportions.
‡ Measured on a 100-mm visual analog scale where 0 is no activity, no fatigue, or no pain.
health status in all domains of the SF-36 (P ⬍ 0.001 for all
domains) (Figure 2). They were also more likely to report
comorbidity (P ⫽ 0.048). Patients who described unmet
health care needs were also significantly more likely to be
dissatisfied with the health care provided (P ⬍ 0.001).
were the most frequently described themes. There were no
statistically significant differences between patients reporting or not reporting unmet health care needs regarding
sex, age, diagnosis, or disease duration. However, those
with unmet health care needs reported significantly worse
Table 4. Associations between involvement in medical decisions, and personal factors,
disease variables, and health care variables in 1,193 patients with rheumatoid arthritis
or ankylosing spondylitis*
Formal education
ⱕ12 years
⬎12 years
Patient satisfaction
Patient information
0.99 (0.97–0.99)
1.1 (0.78–1.54)
1.46 (1.06–2.00)
⬍ 0.001
4.21 (2.63–6.73)
⬍ 0.001
2.03 (1.09–3.76)
7.85 (4.12–14.97)
OR (95% CI)
* Results after multivariate logistic regression enter-model. OR ⫽ odds ratio; 95% CI ⫽ 95% confidence
Rheumatology Care in RA and AS
Figure 1. Unmet health care needs among 1,193 patients with
rheumatoid arthritis or ankylosing spondylitis, given in rank order from the most frequently described to the least often described
problems and needs.
The majority of RA and AS patients in this study reported
that they had received information, had experienced involvement in medical decisions, and were satisfied with
their care. However, a considerable percentage, even
among those reporting high levels of received information,
wanted more information, highlighting the need for further improvement in the delivery of care. One reason for
this need for information may be that the fluctuating and
progressive nature of arthritis often brings forward new
and unpredictable challenges to patients, thereby creating
the need for updated information. Also, the rapid development of new medications and advanced surgery puts
focus on new practical procedures and documentation.
Therefore, patients with inflammatory rheumatic diseases
have an almost continuous need for information, and the
“fully informed patient” probably exists only in theory.
Compared with the RA group, the current levels of information about diagnosis, medication, and exercises were
considerably higher in the AS group. Some possible explanations may be that greater percentages of patients with
AS still work. The AS patients were also younger and more
educated than the RA patients. Therefore one might expect
that the AS patients have easier access to computerized
Figure 2. Mean Short Form 36 (SF-36) scores in patients with and
without unmet health care needs.
information and discussion forums. Also, they are more
routinely exposed to physiotherapy, which often includes
patient education (30).
Regarding involvement in medical decisions, 27% of the
patients reported no involvement, while 48% and 25%
reported some or much involvement, respectively. Regardless of the level of current involvement, most patients
wanted to be more involved. This demonstrates that patient participation in care still constitutes a challenge to
both the organization of health care, and the roles of the
patient and the practitioner. To facilitate progress in this
area, there is a need to develop methods and measures that
promote a patient-centered practice (2). However, a considerable amount of patients who reported no involvement
stated that they had no wish for more involvement. A
similar relationship was found in the patients who reported having received no information. These results are
in agreement with findings from other studies (3,31,32).
Therefore, one should recognize and respect that some
patients may still want to refuse information and leave the
medical decisions to the health professionals.
Patient satisfaction with care and level of received information were independently associated with current involvement in medical decisions, a finding also supported
by other studies (17,31,33). Age and formal education were
only weakly associated, which indicates that the organization and content of care are strong determinants of the
degree of patient participation. Moreover, the positive association between levels of information and involvement
supports the ideas that information is a premise for patient
participation, and that patient education should be one of
the cornerstones in the care of rheumatic patients (1,9,
The majority of patients were satisfied with their rheumatologic care, a result that is in concordance with findings from other studies (17,35). However, more than 30%
of the patients stated that they were neutral, somewhat, or
very dissatisfied, and 27% of the patients described unmet
health care needs due to their arthritis. These needs fall
into 2 main issues: consequences of the disease and delivery of care.
The most frequently reported unmet needs were related
to consequences of the disease, such as fatigue, pain, impaired function, and psychosocial problems. Patients with
unmet needs also reported comorbidity and poorer health,
a finding that is supported by former studies (4,18,36).
This finding indicates that the current care packages do
not adequately accommodate the patients’ symptoms and
problems. Other approaches, such as more extensive use of
specific complementary therapies and/or multidisciplinary team care, may be needed to target the multiple areas of
their life situation.
The other main issue of unmet health care needs was
related to delivery of care, reported as poor access to a
variety of health care services, professions, and interventions. Patients also described lack of time with the rheumatology staff/providers, continuity and followup, and
also lack of respect, communication, and holistic care.
Consistent with other findings (36,37) this indicates that
more diseased patients request more time to communicate
their problems and needs, stable caregivers who follow
their condition over time, and multidisciplinary care with
cooperating team members.
The cross-sectional design used in this study does not
permit any conclusions to be drawn on cause and effect
relationships. In addition, the association between involvement and satisfaction with care could be explained
by a third factor, such as the quality of the relationship
between patients and rheumatology care givers. Also,
there might be an interaction between satisfaction and
involvement, in which increased satisfaction leads to more
involvement and vice versa. Future studies are needed to
investigate such associations.
Another limitation of the study is that the instrument
used to assess patient information, satisfaction, and involvement has not been tested for psychometric properties, and the questions address arthritis health care in
general rather than specific care episodes. Results must
therefore be interpreted with these considerations in mind
The overall results of this study indicate that there is a
potential for further improvement in the way arthritis care
is delivered. Berry et al (39) described a patient centered
access model, characterized by availability, appropriateness, preference, and timeliness, as a way to secure the
patient’s appropriate and preferred medical assistance.
Central principles in this model are to serve when service
is needed, use information technology, align care with
need and preference, and use a team approach to care.
Recent research supports application of such a model. For
example, in a group of RA patients with direct access to
rheumatology care, satisfaction and confidence in the
health care system were significantly higher compared
with patients that received regular review initiated by the
rheumatologist (40). Moreover, the direct access group had
more than one-third fewer medical visits, while they were
still clinically and psychologically at least as well as the
patients having traditional physician initiated reviews. In
another study, patients stated that they want the opportunity to use the Internet to get in contact with their health
care providers (13). These results indicate that for patients,
rapid specialist access in times of need is important.
Former studies have demonstrated that even though patients report improvement of pain, fatigue, sexual ability,
physical function, and well-being as important outcomes,
professionals often have divergent opinions regarding
what issues should guide clinical decisions in medical
treatment (5,7,41– 45). Visit length and time for social conversation are significant mediators between health care
and satisfaction (18,36,46), and suggest that a differentiated time schedule should be used in consultations, accounting for the opportunity to address the needs of the
individual patient.
Over the years, a variety of arthritis care models have
been developed to meet the complex problems facing
rheumatic patients (47,48). Future research should be
aimed at documenting and comparing effects and effectiveness of such models, including exploring how team
structure and communication style influence the treatment
process, identifying which factors within the care models
are effective, and analyzing how the different elements
interact (49,50).
Kjeken et al
The results of our study indicate a need for development
of a flexible delivery of rheumatology care, in which patients to a larger degree can decide which services they
need and how these services should be delivered. This
may especially be of importance to patients with an aggressive and impairing disease. Furthermore, cooperation
with the patient and among team members, and communication styles and methods that are sensitive to the needs
and priorities of the individual patient should be emphasized.
1. Cahill J. Patient participation: a review of the literature. J Clin
Nurs 1998;7:119 –28.
2. Ward MM. Patient-centered care and health outcomes. Curr
Opin Rheumatol 2004;16:89 –90.
3. Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med 1998;47:329 –39.
4. Rosenthal GE, Shannon SE. The use of patient perceptions in
the evaluation of health-care delivery systems. Med Care
1997;35 Suppl:NS58 – 68.
5. Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmen
M, et al. Outcomes from the Patient Perspective Workshop at
OMERACT 6. J Rheumatol 2003;30:868 –72.
6. Kvien TK, Heiberg T. Patient perspective in outcome
assessments: perceptions or something more? J Rheumatol
2003;30:873– 6.
7. Quest E, Aanerud GJ, Kaarud S, Collins S, Leong A, Smedeby
B, et al. Patients’ perspective [letter]. J Rheumatol 2003;30:
884 –5.
8. Wressle E, Eeg-Olofsson AM, Marcusson J, Henriksson C.
Improved client participation in the rehabilitation process
using a client-centred goal formulation structure. J Rehabil
Med 2002;34:5–11.
9. Fraenkel L, Bogardus S, Concato J, Felson D. Preference for
disclosure of information among patients with rheumatoid
arthritis. Arthritis Rheum 2001;45:136 –9.
10. Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet 2004;364:1523–37.
11. Riemsma RP, Kirwan JR, Taal E, Rasker JJ. Patient education
for adults with rheumatoid arthritis. Cochrane Database Syst
Rev 2002;CD003688.
12. Gordon MM, Capell HA, Madhok R. The use of the Internet as
a resource for health information among patients attending a
rheumatology clinic. Rheumatology (Oxford) 2002;41:1402–5.
13. Van Lankveld WG, Derks AM, van den Hoogen FH. Disease
related use of the Internet in chronically ill adults: current
and expected use. Ann Rheum Dis 2006;65:121–3.
14. Smarr KL, Parker JC, Wright GE, Stucky-Ropp RC, Buckelew
SP, Hoffman RW, et al. The importance of enhancing selfefficacy in rheumatoid arthritis. Arthritis Care Res 1997;10:
18 –26.
15. Buescher KL, Johnston JA, Parker JC, Smarr KL, Buckelew SP,
Anderson SK, et al. Relationship of self-efficacy to pain behavior. J Rheumatol 1991;18:968 –72.
16. Brekke M, Hjortdahl P, Kvien TK. Self-efficacy and health
status in rheumatoid arthritis: a two-year longitudinal observational study. Rheumatology (Oxford) 2001;40:387–92.
17. Brekke M, Hjortdahl P, Kvien TK. Involvement and
satisfaction: a Norwegian study of health care among 1,024
patients with rheumatoid arthritis and 1,509 patients with
chronic noninflammatory musculoskeletal pain. Arthritis
Rheum 2001;45:8 –15.
18. Hall JA, Milburn MA, Roter DL, Daltroy LH. Why are sicker
patients less satisfied with their medical care? Tests of two
explanatory models. Health Psychol 1998;17:70 –5.
19. Hill J. Patient satisfaction in a nurse-led rheumatology clinic.
J Adv Nurs 1997;25:347–54.
20. Polit DF, Hungler BP. Nursing research: principles and methods. 5th ed. Philadelphia: J.B. Lippincott Company; 1995.
Rheumatology Care in RA and AS
21. Kvien TK, Uhlig T. The population based studies in rheumatoid arthritis: a method of longterm followup studies. J Rheumatol Suppl 2004;69:35– 40.
22. Dagfinrud H, Vollestad NK, Loge JH, Kvien TK, Mengshoel
AM. Fatigue in patients with ankylosing spondylitis: a comparison with the general population and associations with
clinical and self-reported measures. Arthritis Rheum 2005;53:
23. Moll JM. New criteria for the diagnosis of ankylosing spondylitis. Scand J Rheumatol Suppl 1987;65:12–24.
24. Bandura A, O’Leary A, Taylor CB, Gauthier J, Gossard D.
Perceived self-efficacy and pain control: opioid and nonopioid mechanisms. J Pers Soc Psychol 1987;53:563–71.
25. Lorig K, Chastain RL, Ung E, Shoor S, Holman HR. Development and evaluation of a scale to measure perceived selfefficacy in people with arthritis. Arthritis Rheum 1989;32:37–
26. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form
health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473– 83.
27. Kvien TK, Kaasa S, Smedstad LM. Performance of the Norwegian SF-36 Health Survey in patients with rheumatoid
arthritis. II. A comparison of the SF-36 with disease-specific
measures. J Clin Epidemiol 1998;51:1077– 86.
28. Pincus T, Summey JA, Soraci SA Jr, Wallston KA, Hummon
NP. Assessment of patient satisfaction in activities of daily
living using a modified Stanford Health Assessment Questionnaire. Arthritis Rheum 1983;26:1346 –53.
29. Kvale S. Interviews: an introduction to qualitative research
interviewing. 1st ed. Thousand Oaks (CA): Sage; 1996.
30. Dagfinrud H, Kvien TK, Hagen KB. Physiotherapy interventions for ankylosing spondylitis. Cochrane Database Syst Rev
31. Neame R, Hammond A, Deighton C. Need for information and
for involvement in decision making among patients with
rheumatoid arthritis: a questionnaire survey. Arthritis Rheum
2005;53:249 –55.
32. Beisecker AE. Aging and the desire for information and input
in medical decisions: patient consumerism in medical encounters. Gerontologist 1988;28:330 –5.
33. Thompson SC, Pitts JS, Schwankovsky L. Preferences for involvement in medical decision-making: situational and demographic influences. Patient Educ Couns 1993;22:133– 40.
34. Falardeau M, Durand MJ. Negotiation-centred versus clientcentred: which approach should be used? Can J Occup Ther
2002;69:135– 42.
35. Scholte op Reimer WJ, de Haan RJ, Limburg M, van den Bos
GA. Patients’ satisfaction with care after stroke: relation with
characteristics of patients and care. Qual Health Care 1996;5:
144 –50.
Rao JK, Weinberger M, Anderson LA, Kroenke K. Predicting
reports of unmet expectations among rheumatology patients.
Arthritis Rheum 2004;51:215–21.
Ward MM. Rheumatology care, patient expectations, and the
limits of time. Arthritis Rheum 2004;51:307– 8.
Sitzia J. How valid and reliable are patient satisfaction data?
An analysis of 195 studies. Int J Qual Health Care 1999;11:
319 –28.
Berry LL, Seiders K, Wilder SS. Innovations in access to care:
a patient-centered approach. Ann Intern Med 2003;139:568 –
Hewlett S, Kirwan J, Pollock J, Mitchell K, Hehir M, Blair PS,
et al. Patient initiated outpatient follow up in rheumatoid
arthritis: six year randomised controlled trial. BMJ 2005;330:
Carr A, Hewlett S, Hughes R, Mitchell H, Ryan S, Carr M, et al.
Rheumatology outcomes: the patient’s perspective. J Rheumatol 2003;30:880 –3.
Ahlmen M, Nordenskiold U, Archenholtz B, Thyberg I, Ronnqvist R, Linden L, et al. Rheumatology outcomes: the patient’s perspective: a multicentre focus group interview study
of Swedish rheumatoid arthritis patients. Rheumatology (Oxford) 2005;44:105–10.
Hewlett SA. Patients and clinicians have different perspectives on outcomes in arthritis. J Rheumatol 2003;30:877–9.
Kwoh CK, Ibrahim SA. Rheumatology patient and physician
concordance with respect to important health and symptom
status outcomes. Arthritis Rheum 2001;45:372–7.
Hill J, Bird H, Thorpe R. Effects of rheumatoid arthritis on
sexual activity and relationships. Rheumatology (Oxford)
2003;42:280 – 6.
Beisecker AE, Beisecker TD. Patient information-seeking behaviors when communicating with doctors. Med Care 1990;
28:19 –28.
Li LC. What else can I do but take drugs? The future of
research in nonpharmacological treatment in early inflammatory arthritis. J Rheumatol Suppl 2005;72:21– 4.
Petersson IF. Evolution of team care and evaluation of effectiveness. Curr Opin Rheumatol 2005;17:160 –3.
Li LC, Backman C, Bombardier C, Hammond A, Hill J, Iversen
M, et al. Focusing on care research: a challenge and an opportunity. Arthritis Rheum 2004;51:874 – 6.
Iversen MD. Moving the research agenda in rehabilitative
rheumatology: where are we going and how will we get there?
Curr Opin Rheumatol 2005;17:157–9.
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patients, receive, care, decisions, unmet, health, informatika, satisfaction, need, arthritis, rheumatology, ankylosis, careinvolvement, medical, spondylitis, rheumatoid
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