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.
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.
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.
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.
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 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 self-efficacy, 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 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 AND METHODS
Data for the analyses were retrieved from patient surveys of the Oslo Rheumatoid Arthritis Register (RA-register) and the Ankylosing Spondylitis Register (AS-register) 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 ≤12 years, or >12 years of education. Self-efficacy 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 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?”
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 appropriate.
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 ≤0.25 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 significant.
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 patients.
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.
Table 1. Personal variables and disease variables in 1,193 patients with RA (data from 2004) or AS (data from 2003)*
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 function).
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.
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.
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
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 involvement.
Information about diagnosis and medication
Information about exercises
Information about daily activities
Involvement in medical decisions
Satisfaction with care
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 patients.
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 ≤0.25 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).
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*
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.
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*
OR (95% CI)
Results after multivariate logistic regression enter-model. OR = odds ratio; 95% CI = 95% confidence interval.
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 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 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).
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 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, 31, 34).
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 (38).
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).
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.