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International Journal for Quality in Health Care 16:73-81 (2004)
© International Society for Quality in Health Care and Oxford University Press 2004; all rights reserved

Quality of rheumatoid arthritis care: the patient’s perspective

Catharina E. Jacobi1,2, Hendriek C. Boshuizen3, Ines Rupp1,3, Huibert J. Dinant4,5 and Geertrudis A. M. Van Den Bos1,3

1 Department of Social Medicine and
5 Department of Clinical Immunology and Rheumatology, Academic Medical Center, University of Amsterdam,
2 Department of Medical Decision Making, Leiden University Medical Center, Leiden,
3 National Institute of Public Health and the Environment, Bilthoven,
4 Jan van Breemen Institute, Center for Rheumatology and Rehabilitation, Amsterdam, The Netherlands

Objective. To identify health care aspects of inadequate quality in rheumatoid arthritis (RA) care from the perspective of patients, and to study to what extent patients’ perspectives on quality of care are associated with patient characteristics.

Design. Cross-sectional questionnaire survey performed in 1999.

Setting. Secondary and tertiary rheumatology outpatient clinics.

Study participants. A random sample (n = 683) of patients diagnosed with rheumatoid arthritis according to the 1987 revised American College of Rheumatology criteria. Patients varied widely with respect to age (mean 61.5 years) and disease duration (mean 10.7 years).

Main outcome measures. Using the method of the QUOTE-questionnaire, patients’ were asked to rate the importance to them of 29 aspects of care, and to rate the performance of five different health care providers [i.e. rheumatologist, general practitioner (GP), physiotherapist, home nurse, and formal home help] relating to these aspects. To identify aspects of inadequate quality, patients’ performance ratings were weighted by importance ratings within each health care service. Inadequate performance on an extremely important aspect was found to be a more serious quality problem than an inadequate performance on an aspect that was less important to patients. Using regression analyses, the association between patients’ quality ratings and patient characteristics was assessed.

Results. Several aspects of inadequate quality were identified, namely in the field of knowledge of rheumatism and particularly for GPs, physiotherapists, home nurses, and formal home help, and in the field of information on medication and treatment for rheumatologists and GPs. Furthermore, for the majority of the importance and performance ratings, we found no association with patient-related characteristics.

Conclusions. Our study demonstrated that the quality of care could be improved further from the perspective of patients. These findings may be used for making health care more responsive to patients’ needs.

Keywords: health care services, importance of aspects, patient perspective, patient’s view, quality of health care, rheumatoid arthritis

Accepted for publication October 10, 2003.

Rheumatoid arthritis (RA) is a chronic disabling condition with unpredictable course and wide variation in severity [1]. RA has a prevalence of 1% in most Western countries [2] including the Netherlands [3], with a higher prevalence both in older age groups and in women [2,3]. RA causes pain and physical and psychological impairments, and in many patients these impairments result in moderate to severe disabilities [4–7]. Consequently, these patients are dependent long-term on a wide variety of health care services [8]. Given the need profile of RA patients, the long-term dependency on health care, and the many caregivers involved, high health care quality is an important issue.

Quality of care from the perspective of patients is increasingly considered an important component of comprehensive chronic disease management [9]. In the Netherlands, there is a strong move towards patient-centered care; this patient-centered approach is fundamental to the current policy of the Ministry of Health, Welfare and Sport [10], to research policy [11,12], and to the policy of patient support groups [13].

The patients’ perspective on quality of care has often been conceptualized as patient satisfaction [14–17]. Patient satisfaction has been widely investigated in health care research, and many measuring instruments have been developed for this purpose [14–16]. In more recent studies of quality of care from the perspective of patients, patient satisfaction is considered an indicator of quality of care [16]. Van Campen and colleagues presented in their review [16] five instruments measuring quality of care from the patients’ perspective [18–22]. Although these instruments were both theoretically and methodologically acceptable, none was evaluated positively on all criteria. Subsequently, intensive efforts have been made in the Netherlands to develop an instrument for assessing quality of care from the perspective of patients and incorporating both the theoretical and methodological knowledge as provided by the five reviewed instruments, resulting in the QUOTE-questionnaire [23,24]. This instrument matches the dimensions of health care found in the international literature [16,18,25,26], and incorporates both patients’ preferences in health care and patients’ evaluations of the performance of health care providers, resulting in quality ratings.

Patients’ ratings on quality of care, however, should not be accepted without some discussion, because these ratings may be biased by sociodemographic characteristics such as age, education, or marital status [26,27] and health characteristics [26,28–31]. In addition, patients’ ratings may be sensitive for bias due to the patients’ tendency to agree with statements of opinion regardless of the content [32]. For patient ratings to be useful for quality improvement in health care, these ratings should reflect the variance in quality of care rather than be associated with patient characteristics.

Previous research regarding quality of care from the perspective of patients with RA focused on patients’ satisfaction with health care [28], or on general practice care only [33]. As little is known about the quality of care from the perspective of patients with RA in the range of medical and non-medical health care services that RA patients need, we focused in this study on the quality of care of five health care services from the perspective of patients with RA using the QUOTE-questionnaire [34]. The aims of the study were, firstly, to identify aspects of inadequate quality in RA health care, and secondly to determine the usefulness of patients’ quality ratings for quality improvement in health care by studying to what extent patients’ ratings of quality of care were associated with patient characteristics.


   Methods
Top
 Methods
Results
 Discussion
 References
 
Patients
The present study was undertaken in 1999 as a part of a longitudinal study on health and health care among patients with RA, which started in 1997. At the start of this study, 1200 patients diagnosed with RA, with a wide variety of disease durations, were randomly selected from the register of an outpatient clinic for rheumatology and rehabilitation in Amsterdam, that also included patients from several allied rheumatology outpatient clinics. Inclusion criteria were: (i) patients must be >=16 years of age; (ii) patients must meet the 1987 revised American College of Rheumatology (ACR) criteria for RA [35]; and (iii) patients must have given informed consent. The medical ethics committee approved the study design. In the first year, 882 patients responded. Non-respondents at the start of the study were found to be older than respondents, but no differences were found with respect to gender, educational level, or disability [36]. For the present study, the 882 respondents from 1997 were asked to participate in a postal questionnaire survey.

Questionnaire
The questionnaire included sociodemographic variables, health characteristics, health care utilization, and patient views on quality of care. Sociodemographic variables were age, gender, and marital status. Age was grouped into <55 years, 55–70 years, and >=70 years. Marital status was rated as ‘single’ and ‘married or cohabiting’.

Health characteristics encompassed disease duration, physical health, and mental health. Physical health was measured by means of the validated Dutch version [37] of the Health Assessment Questionnaire (HAQ), an arthritis-specific instrument [38]. The HAQ consists of 20 items measuring the degree of difficulty a patient has in performing activities ofdaily living. Responses to each item can range from 0 (nodifficulty) to 3 (unable to do). The scores for each item are averaged to create a mean score (range 0–3, with higher scores indicating greater disability). Mental health was assessed using the validated Dutch version [39] of the Center for Epidemiological Studies depression scale (CES-D) [40]. The scores of each item are summed to a total mental health score, ranging from 0 to 60, with higher scores indicating more depressive symptomatology. Possible depression is defined by the manual as CES-D >=16 [39].

Health care utilization was assessed with respect to the preceding 12 months for the following five health care providers: rheumatologist, general practitioner (GP), physiotherapist, home nurse, and formal home help. A total visit score was computed, ranging from 0 (no use of health care) to 5 (use of all five health care providers).

Quality of care from the perspective of patients was assessed using the QUOTE-questionnaire [34,41], which was found to be valid and reliable among patients with chronic obstructive pulmonary disease [42], rheumatic patients [34], the frail elderly [43], and HIV patients [44]. Using the method of the QUOTE-questionnaire, quality of care from the perspective of patients was assessed in two phases. Firstly, patients were asked to rate the importance of 29 aspects of care (Table 1) in general (e.g. ‘Health care providers should always explain the advantages and disadvantages of a treatment’). Importance was rated on a four-point scale (‘not important’, ‘fairly important’, ‘important’, and ‘extremely important’). Secondly, patients were asked to rate the actual performance on these aspects separately for five different health care providers (e.g. ‘My physiotherapist has enough knowledge of rheumatism’). Patients were then asked to rate the performance of only those aspects of care that were relevant to the specific providers. The performance response categories were dichotomized into percentages by the responses ‘no’ and ‘not really’ (i.e. inadequate performance) and ‘yes’ and ‘on the whole yes’ (i.e. adequate performance). Patients could only rate the performance of health care providers they had attended in the previous 12 months.


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  		Table 1 The importance of the 29 aspects of care (translated here from Dutch into English)1

 

Ratings on quality of care
To evaluate the quality of care, the performance of health care providers with respect to aspects of care were weighted by the importance ratings of these aspects. We categorized both the performance ratings and the importance ratings into several levels. The importance of the aspects of care were ranked according to the percentage of patients that rated the aspect as ‘extremely important’, and we divided these ranked aspects into quartiles. The health care providers’ performance for these aspects was categorized into 20% groups, according to the percentage of patients that reported inadequate performance. Subsequently, we defined aspects to be of inadequate quality as described in Table 2. Inadequate performance as rated by up to 5% of patients was allowed for all aspects of care before aspects could be assigned an ‘inadequate quality’ rating.


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  		Table 2 Weighting method for patients’ ratings of a health care provider’s performance by importance ranking, resulting in quality ratings

 

Statistics
Univariate regression analyses were performed for each variable (i.e. sociodemographic variables, health characteristics, and total visit score), with the importance rating or the performance rating as the dependent variable. In addition, multivariate analyses were carried out to investigate the contribution of sociodemographic variables, health characteristics, and total visit score to the proportion of explained variance in importance ratings or in the performance ratings. The total visit score was used in the analyses for adjustment, because a patient’s chance of reporting inadequate performance in health care is associated with the number of care services received.

Results of all analyses were considered statistically significant if P-values were <0.05. The analyses were performed using SPSS 10.0.7 for Windows (SPSS, Chicago, IL).


   Results
Top
 Methods
 Results
Discussion
 References
 
Patients
Of the 882 patients who were approached for participation, 41 patients had died or had moved to an unknown address. These 41 patients were significantly older (P = 0.001) than participants, but no differences were found regarding gender or educational level. Of the remaining patients (n = 841), 683 (81%) responded. Between the drop-outs (n = 158) and the respondents (n = 683), no differences were found with respect to age, gender, or educational level.

The characteristics of the 683 respondents are shown in Table 3. The mean age of the patients was 61.5 years (range 23.4–92.1 years). Seventy-one per cent of the patients (n = 487) were women, and 67% (n = 454) were married or cohabiting. Patients had a mean disease duration of 10.7 years (range 1.5–57.8 years). On average, patients had minor disabilities (HAQ mean 0.73; range 0.00–2.90) and good mental health (CES-D mean 12.0; range 0–49). In addition, across the subgroups of patients as defined by provider use, differences regarding health characteristics were observed (Table 3).


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  		Table 3 Characteristics of study population (n = 683)

 

In accordance with the selection procedure, 94% of the patients (n = 638) had had contact with a rheumatologist inthe past year. Furthermore, 146 patients (22%) had attended a GP and 223 (33%) had attended a physiotherapist. Thirty-one patients (5%) received help from a home nurse, while 116 patients (17%) received help from a formal home help. Twenty-two patients (3%) made no use of health care.On average, patients used 1.76 of the five health care services.

Identification of aspects of inadequate quality
The following aspects were rated as the five most important (Table 4): ‘knowledge of rheumatism’, ‘information about concomitant use of medication’, ‘explain side-effects of medication’, ‘keep patient’s file confidential’, and ‘open to questions’.


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  		Table 4 Aspects of inadequate quality from the perspective of patients with rheumatoid arthritis (n = 683), resulting from the weighting of health care providers’ performance by importance ranking of aspects of care

 

The weighting of the health care providers’ performance ratings by the importance ranking of care aspects revealed several areas of inadequate quality (Table 4). With respect to the aspect that was rated as the most important, i.e. ‘knowledge of rheumatism’, patients rated the performance of all health care providers, with exception of the rheumatologist, as inadequate. The ‘knowledge of rheumatism’ of GPs was not up to the patients’ standards according to 27.2% of patients. The ‘knowledge of rheumatism’ of the physiotherapist, home nurse, and formal home help was not rated as up to the patients’ standards by 54.7%, 32.3%, and 84.4% of the patients, respectively. Inadequate quality was also observed, for all relevant health care providers, for ‘information on the course of symptoms’, ‘give patient access to file’, ‘choice of another care provider’, and ‘information about home adjustments’.

In the case of the rheumatologist and the GP, ‘information about concomitant use of medication’ and ‘explain side-effects of medication’ were of inadequate quality. Regarding ‘information about concomitant use of medication’, 26.3% and 16.4% of the patients, respectively, indicated that rheumatologists and GPs failed to provide this information, although 47.5% of the patients rated this aspect as extremely important. Similarly, 18.7% and 21.5% of the patients, respectively, indicated that rheumatologists and GPs failed to ‘explain the side-effects of medication’, although 46.5% of the patients rated this aspect as extremely important.

For the other aspects, large differences in quality ratings were found among the five health care providers. Inadequate quality was observed for the following aspects: ‘keep patient’s file confidential’, ‘open to questions’, ‘information in plain language’, ‘waiting rooms and treatment rooms accessible for physically disabled people’, ‘modified toilet in practice’, ‘information about aids’, and ‘take care of good care coordination’.

In addition, most health care providers performed inadequately with respect to ‘waiting time not exceeding 15 minutes’. However, no inadequate quality was assigned to this aspect, because patients rated this aspect as less important.

Patients’ ratings in relation to patient characteristics
Univariate and multivariate regression analyses revealed that the variance of importance and performance ratings could partly be explained by socio-demographic characteristics, health characteristics, and total visit score. We performed analyses for both importance and performance ratings of all 29 aspects separately. For brevity, we present the results of these analyses only for the performance on two aspects of care of three health providers for whom these aspects were relevant (Table 5). All other analyses yielded similar results. No association was found between patients’ ratings on the importance of care aspects, the performance of health care providers, and patients’ health characteristics. For the majority of the importance and performance ratings, no influence of patient characteristics was found. Statistically significant associations between age or gender and patients’ ratings were observed for only a few aspects. Older patients and women rated performance on aspects such as ‘explain physical examination’, ‘be open to questions’, ‘inform on course of symptoms’, and ‘give information about aids’ significantly better than younger or male patients. The explained variance of these models, however, was low, varying from 0.6 to 10.1%, indicating that the variance in patients’ ratings was mostly due to factors other than patient characteristics.


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  		Table 5 Impact of socio-demographic and health characteristics on quality ratings of patients with rheumatoid arthritis (n = 683)

 


   Discussion
Top
 Methods
 Results
 Discussion
References
 
In this study, we have investigated, across several health care providers of rheumatoid arthritis care, specific aspects of care for which quality improvement might be indicated. We identified for each discipline several aspects of inadequate quality. We also found that for most aspects of care, patients’ ratings of quality of care were not associated with patient-related characteristics.

Remarkably, patients noted that all health care providers, with the exception of the rheumatologist, had inadequate knowledge of rheumatism. This finding sustains the need for educational programs to enhance the arthritis knowledge of health care providers. Educational programs especially for professionals in arthritis-related occupations have been shown to increase skills and knowledge regarding arthritis care [45–47], and may therefore be of value for quality improvement among health care providers.

In addition, health care aspects regarding informational topics were often found to be of inadequate quality, i.e. ‘information about concomitant use of medication’, ‘information on course of symptoms’, and ‘information in plain language’. This finding raises concerns as it has been observed previously among patients with RA [28]. The inadequate quality assigned to these informational aspects may be explained in part by overly high expectations of health care among patients, as was suggested by Ovretveit [48]. Educational programs developed for patients may be of value in this respect [49,50].

We found no firm evidence that patients’ quality ratings are influenced by patient-related characteristics. Although disability level could be expected to influence patients’ ratings, as was shown in previous studies [26,28–31], our analyses proved otherwise. For only a minority of the health care aspects, we observed that older patients and women were more likely to rate the performance significantly better than younger or male patients. In most cases, however, we observed no association between patients’ demographic or health characteristics and patients’ ratings. These results suggest that patients’ views on care are a valuable tool for quality improvement and for making health care more responsive to patients’ needs. It has to be noted, however, that patients receiving care from a home nurse or a formal home help tended to have longer duration of the disease, and poorer scores on physical and mental health measures, combined with less variation in patient characteristics such as marital status and gender. These findings may, at least in part, explain the absence of a relationship between patient characteristics and patients’ quality ratings.

The performance of the health care providers was rated by the patients who had attended the specific health care service. The number of patients per health care service varied widely. The performance of home nurses was rated by only a small number of patients (31). Therefore, the results regarding the home nurses should be interpreted with some caution.

Furthermore, we have investigated the performance of five health care providers in very different disciplines. Not every health care provider is expected to have an equal level of knowledge on topics of health care. It is self-evident, for instance, that a rheumatologist should have an excellent knowledge of rheumatism, whereas a formal home help needs only broad knowledge. Because we asked the patients themselves to rate the performance of the health care providers, they were able to include their own standards in the ratings. We therefore do not expect that the variety in necessary knowledge across professional health care providers reduces the usefulness of our results in daily practice.

Our study demonstrated that the method of weighting ratings of performance of health care providers on aspects of care by rating the importance of these aspects is very useful in identifying discipline-specific quality problems. This finding is in line with previous research [24,51]. A further elaboration, however, is recommended. We have assessed the importance ratings in general. Even more detailed insight could be gathered if patients were asked not only to rate discipline-specific performance, but also the discipline-specific importance of aspects of care. Research among diabetes patients [52] and HIV patients [44] has revealed namely that importance ratings of aspects of care are not similar for different health care providers. Furthermore, although we found that aspects of adequate and inadequate quality are discriminated well using this method, the instrument consists of too many items for use in daily practice. Further research should investigate whether the number of items on the QUOTE questionnaire could be reduced, for instance by excluding the items with the lowest importance ranking.

To summarize, in this study patients with RA rated the quality of care relatively well. Quality improvement is, however, indicated in the field of ‘knowledge of rheumatism’, particularly among GPs, physiotherapists, home nurses, and formal home help, and in the field of ‘information on medication and treatment’ among rheumatologists and GPs.

The authors would like to thank M. Kammeijer for her large contribution to the collection of data. The Netherlands Organization for Health Research and Development, Medical Sciences (ZON-MW), and the Dutch Arthritis Association (het Nationaal Reumafonds) supported this study financially.


   References
Top
 Methods
 Results
 Discussion
 References
 

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J. S. Tabrizi, A. J. Wilson, P. K. O'Rourke, and E. T. Coyne
Patient Perspectives on Consistency of Medical Care With Recommended Care in Type 2 Diabetes
Diabetes Care, November 1, 2007; 30(11): 2855 - 2856.
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Y. P M Goekoop-Ruiterman, J. K de Vries-Bouwstra, C. F Allaart, P. J S M Kerstens, B. A M Grillet, M. H de Jager, K H. Han, I. Speyer, P. A H M van der Lubbe, P. E H Seys, et al.
Patient preferences for treatment: report from a randomised comparison of treatment strategies in early rheumatoid arthritis (BeSt trial)
Ann Rheum Dis, September 1, 2007; 66(9): 1227 - 1232.
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