Women with established rheumatoid arthritis perceive pain as the predominant impairment of health status

P. Minnock1,, O. FitzGerald1,2,3 and B. Bresnihan1,2,3

1 Rheumatology Rehabilitation, Our Lady's Hospice, Dublin,
2 St Vincent's University Hospital, Dublin and
3 Department of Rheumatology, University College Dublin, Ireland


    Abstract
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Objective. The aim of this study was to characterize perceptions of health and well-being in women with established rheumatoid arthritis (RA).

Methods. Women aged between 40 and 60 yr with RA for more than 3 yr, and who were receiving stable doses of anti-rheumatic drug therapy, were selected for study. The Arthritis Impact Measurement Scales 2 (AIMS2) was employed to quantify current health status impairments, the impairments that were attributed to RA, perceptions of current health status compared with other women of the same age, and perceptions of future health status.

Results. Fifty-eight patients were studied. The full range of 12 AIMS2 dimensions was used when quantifying impairments in health status. The dominant impairment was pain. Moreover, 88% of patients attributed current pain to RA. Fifty-two per cent perceived their health status to be fair, poor or very poor compared with other women of the same age. Twenty-five per cent expected poor future health status, compared with 10% who perceived poor current health status. Only one patient (2%) expected excellent future health status.

Conclusion. In this study, a large majority of women perceived impairments of health status that they attributed to RA. Pain was perceived as the predominant impairment. Deterioration in health status was anticipated by many. The inclusion of patient perceptions of health status and disease impact as outcome measures in both cross-sectional and longitudinal clinical research protocols merits further study.

KEY WORDS: Rheumatoid arthritis, Patients' perceptions, Pain, Women's health.


    Introduction
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory disease of unknown aetiology and unpredictable course and prognosis [1]. The annual incidence of RA is between 20 and 40 cases per 100 000 adults, with onset typically between ages 20 and 45 yr. RA occurs two to four times more frequently in women than in men [2]. It is associated with significant levels of pain and functional disability, and has a wider psychosocial impact on relationships, psychological well-being, ability to work, exercise and recreation [3]. It is has also been suggested that the occupational impact of RA on women is underestimated because of the conventional assessment of disability in modern society [3, 4]. Three levels of disease impact have been defined: impairment, disability and handicap. Impairment is any loss or abnormality of psychological or anatomical structure or function [5].

The earliest measurement of impairment in health status within rheumatology was developed by Steinbrocker [6]. Limited to four broad categories and intended for completion by health professionals, it neither included psychosocial aspects of well-being nor patient's own perceptions of disease impact. More recently, the emphasis shifted to patient-centred outcome measures [7, 8]. Perceived health status is defined as the individual's self-evaluation of health across the domains of physical, social and psychological well-being [9]. It has been shown that patients and professionals fail to agree on the importance of disabilities, physical function and pain in RA [1013]. There is increasing interest in the unique perspectives of patients in the evaluation of their own clinical status and outcomes. This interest spans outcome measures in both clinical trials and multidisciplinary clinical research [14, 15]. Both quantitative and qualitative approaches are advocated [14–25].

The aim of this descriptive study was to ascertain perceptions of health and well-being among a cohort of female patients with established RA. Quantitative data were gathered to determine the patients' perceptions of the health status impairments that they attributed to RA, their long-term outcomes, and their current and future health status.


    Patients and methods
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Successive patients were recruited from both the in-patient and out-patient rheumatology services at St Vincent's University Hospital, Dublin. Patients satisfying the following selection criteria were enrolled over a 4-month period: (i) women between the ages of 40 and 60 yr with an established diagnosis of RA [26] for at least 3 yr; and (ii) stable treatment with a disease-modifying anti-rheumatic drug (DMARD) for at least 4 months. These criteria were applied to ensure the selection of patients with established RA who were of the same gender, within the same age range, and had similar therapeutic requirements, so as to minimize the number of compounding variables.

Sixty-eight questionnaires were administered. All patients were informed of the nature of the study by one of the investigators (PM), a rheumatology nurse specialist. Consent to participate was documented as required by the institutional Ethics and Medical Research Committee. Patients were informed that the questionnaire was designed specifically for individuals with a rheumatic disease and would take at least 20 min to complete. The majority completed the questionnaires in their own homes.

Measures
The Arthritis Impact Measurement Scales2 (AIMS2) [27] was the quantitative data collection instrument used to ascertain current health status scores, health status impairments attributable to RA, overall arthritis impact, perceptions of current health status, perceptions of future health status, and expected long-term outcome. The AIMS2 is a patient-based tool designed to assess the impact of RA [28]. It is regarded as a more comprehensive and sensitive instrument than the original AIMS due to the addition of scales to evaluate arm function, work and social support as well as assessment of satisfaction with function, attribution of problems to arthritis, and self-designation of priority areas for improvement [29].

It was the instrument of choice because it includes scales designed to measure the physical, psychological, social and affective aspects of health status, consistent with the WHO model of health, as a psychosocial state of well-being [30]. It is disease-specific, based on patients' own responses, can be administered either by interview or by self-completion, and is easy to score. AIMS2 is a 78-item instrument. There are 57 items broken into 12 scales: mobility level, walking and bending, hand and finger function, arm function, self-care tasks, household tasks (physical component model), social activity and social support from family and friends (social interaction component health model), arthritis pain (symptom model), work (role model of health status), and level of tension and mood (affect component model) (Fig. 1Go). These are followed by questions that determine the respondents' satisfaction with each of the 12 health status dimensions, problems attributed to arthritis and areas of priority for desired improvement. Information regarding patients' perception of current and future health status and disease impact is also elicited. Final questions relate to clinical and demographic details, including the type and duration of arthritis, concurrent illnesses, gender, race, marital status, education received and family income. Scoring is consistent in that the lowest value, 0, represents the best possible health status and the worst possible score is 10.



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FIG. 1. AIMS2 health status dimensions. 1=mobility; 2=walking and bending; 3=hand and finger function; 4=arm function; 5=self-care tasks; 6=household tasks; 7=social activity; 8=social support from family and friends; 9=pain; 10=work; 11=tension; 12=mood. Scores are expressed in the range 0–10. High values indicate poor health status. The full range of scores was utilized. Each boxplot represents the median, the interquartile range, the range and outliers.

 

Statistics
The software computer package Excel (Microsoft) and the statistical package Data Desk (Data Description Inc., Ithaca, NY, USA) were used to analyse the data. Summary statistics and frequency distributions were employed.


    Results
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Clinical and demographic details
Fifty-eight (85%) completed questionnaires were returned for analysis. The clinical and demographic details have been described previously [31]. In brief, the mean age of the patients was 50.5 yr (range 41–60 yr) and the mean disease duration was 14 yr (range 3–34 yr). Nine patients (15%) had disease duration <5 yr, 15 (26%) between 5 and 10 yr, and 34 (59%) >10 yr. The majority were married (86%), and only 11 (19.6%) had received university education. Eight (14%) were in paid employment and 15 (26%) were unemployed, registered as disabled or retired. Housework was the documented form of work for the majority (n=35, 60%). The clinical manifestations of RA varied, and were not systematically documented. The median C-reactive protein level of the study patients at the time of recruitment was 14 mg/l (mean 21.1, range 0–169). These values were not statistically different from the values in the 10 patients who failed to return the questionnaires (median 7.5, mean 15.4, range 0–75). Comorbidities included peptic ulcer disease (n=12), anaemia (n=12), hypertension (n=6), cancer (n=3), mental illness (n=1), alcohol/drug abuse (n=1), lung disease (n=1) and kidney disease (n=1).

Measurements of health status
Figure 1Go demonstrates the 12 health status dimensions measured by AIMS2. The dimensions that demonstrated the poorest health status were pain (median 5.5) and social activity (median 5.0). Median values <5 and >2 were observed for walking and bending, hand and finger function, tension and mood. Median values <=2 were observed for the remaining six dimensions: mobility, arm function, self-care tasks, household tasks, social support, and work. The full range of scores was utilized.

Health impairments attributed to RA
Current health impairments were attributed either largely or entirely to RA by 82% (data not shown). Patients were asked to estimate the amount of impairment they attributed to RA for each individual health status dimension (Fig. 2Go). Eighty-eight per cent of both current pain levels and impaired work status were attributed to RA. The patients attributed 50–80% of impaired tension (80%), mood (80%), household tasks (78%), mobility (78%), walking and bending (74%), hand and finger function (71%), arm function (58%), self-care tasks (56%) and social activity (54%) to RA. They attributed 42% of impaired social support to RA.



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FIG. 2. Health status impairments attributed to rheumatoid arthritis. The women were asked to rate the impact of arthritis on each health status dimension.

 

Perceptions of overall arthritis impact on health status
Patients were asked to consider all of the ways that they were affected by RA, and how they perceived their health status compared with others of their own age group (Fig. 3Go). Fifty-two per cent perceived their health status to be fair, poor or very poor compared with others. Forty-eight per cent considered themselves to be either well or very well.



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FIG. 3. Perceptions of overall impact of RA on health status. Considering all of the ways that they were affected by RA, the women were asked how they percieved their health status compared with others of their own age group.

 

Perceptions of health status
Figure 4AGo demonstrates the patients' perceptions of their current health status. Fifty-eight per cent perceived that their current health status was fair or poor, and 40% perceived that it was good. Only 2% reported that their current health status was excellent. Perceptions of future health status are compared in Fig. 4BGo. The percentage of patients who perceived poor current health status was 10%, and 25% expected poor future health status. This difference was associated with a fall from 48 and 40% of patients who perceived a fair or good current health status to 36 and 37%, respectively, who expected fair or good health status in the future. The percentage of patients who expected excellent future health status (2%) was similar to the percentage who perceived excellent current health status. When asked how big a problem they expected their arthritis to be in 10 yr, 56 and 25% expected arthritis would be a moderate or major health problem, respectively (Fig. 4CGo), indicating a pessimistic outlook in the majority of patients.



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FIG. 4. Perceptions of health status. The women were asked how they rated their current health status (A). The women were also asked how they expected their health status to be 10 yr from now (B), and how big a problem they expected their arthritis to be in 10 yr (C).

 


    Discussion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
This study evaluated perceptions of health and well-being amongst women with established RA. The health status impairments that they attributed to RA, as well as the overall impact of RA, were also studied. Finally, perceptions of current health status and expectations for the future were examined. The responses demonstrated that impairments ranged from mild to severe and, in 11 of the 12 dimensions, were attributed to RA by the majority of women. In the self-evaluation of overall arthritis impact, 52% perceived that their health was fair, poor or very poor, relative to the health of others. A sense of pessimism dominated perceptions of future health status for most of the women. The number anticipating a decline to poor health status in the future increased from 1 in 10 who perceived poor current health status to 1 in 4. The majority expected moderate to major arthritis-related health problems in 10 yr.

Traditionally, patient questionnaires are used either as an outcome measure to assess various treatment interventions [15, 29, 32] or for the purpose of enhancing patient care [15, 33]. The latter approach places emphasis on patients' own appraisal of their health status, i.e. patients' perceptions of their health, and is gaining increasing recognition [10, 15]. The comprehensive nature of AIMS2 permits assessment of the standard outcome measures such as functional and work disability, and mortality. It also allows the evaluation of psychosocial variables, which can modify the impact and outcome of the disease, such as social interaction, work status, tension, mood, and patients' own perceptions of their global health [15, 26]. The value and prognostic validity of subjective global health assessments is recognized [15, 33, 34]. It is believed that data of this nature cannot be obtained from a source other than the patient. Completion of AIMS2 by patients permits the collection of subjective information that depicts the patients' own appraisal of their overall health status [15, 35] using a quantitative approach.

In this study, the evaluation of patients' physical, social, occupational and psychological well-being, and pain status demonstrated impairments that ranged from mild to severe. The predominant health impairment was pain, which is consistent with another recent study in which a large cohort of patients with RA perceived pain as the preferred area for improvement [36]. Social activity was perceived as the second most impaired health status dimension. The capacity for pain and social activity impairments to negatively influence an individual's perception of life's quality in RA has been extensively documented [34, 3743]. Thus, this study is noteworthy within the context of analysis of self-perceived health as it highlights the persistent nature of well-recognized variables that may be neglected [36], or remain largely resistant to successful management [31].

Subjective evaluation of the percentage of health impairments that the women considered to be a direct consequence of their RA was sought. Weighted highest were current pain and work status, followed by psychological status (i.e. tension and mood). Limitations in all six dimensions of the physical health model were attributed to RA. RA also imposed restrictions on social activity for the majority. These data are consistent with previous findings [41, 4448]. Having acknowledged and prioritized the health limitations imposed by their disease, patients were then asked their perceptions of the overall impact of RA in terms of wellness relative to people of similar age. The majority regarded their own well-being as only fair, poor or very poor. These findings, although not new [34, 49], give some insight into what each patient defines as health. According to the value judgements of these women, health status is compromised in the presence of pain, unemployment, physical impairments and restricted social activity. Their quality of life is less than they perceive it should be.

A complex array of factors has been found to influence individuals' health perceptions. These include age, sex, socioeconomic status, education, marital status and culture. The exploration of self-assessed health in RA has demonstrated that pain was associated with worst health perceptions, and depression and physical activity were identified as important correlates [34]. Although arthritis is the most prevalent dominant condition in women [2, 50], there are few studies on health perceptions in RA that are gender-specific. Similarly, there have been few that were conducted from a qualitative perspective [23]. One study used a qualitative approach to explore women's experiences of RA [19]. While acknowledging that qualitative research findings should not be generalized, the areas of concern highlighted are noteworthy. They related to the uncertainty imposed by the disease due to limitations in both the treatment and understanding of disease aetiology. Also, disease unpredictability was reported to affect role competencies, dependency levels and relationships.

The observation that present health status was only fair to poor dominated the perceptions of the women in this study. Expectations for the future were even lower, with an increase in the numbers anticipating poor health attributable to RA. A similar pessimistic tendency, concerning future disability, was found in a 2-yr prospective study on the expectations and perceptions of patients with RA. This existed despite a poor correlation between perceptions of disability and actual change in disability [18]. Other studies of patients' perceptions in arthritis found worsening of disease as the greatest concern reported [51, 52]. More especially, self-reported disease severity was found to be a significant predictor of psychological, coping, social and financial concern [52]. This supports the theory that patients invariably assign weight, importance and meaning to symptoms [48]. Therefore uncovering and respecting ‘lay beliefs' and ‘schema’ [21, 53] should enhance all therapeutic interventions and ultimately long-term outcomes in rheumatology care.

The incorporation of patients' perspectives into outcome measures respects the uniqueness and individuality of patients' adjustments to disease chronicity. It must be acknowledged that small study numbers can limit the generalization and significance of findings. Nonetheless, this methodology has highlighted pain as the predominant health status impairment. Traditionally, emphasis has been placed on the collection of objective quantifiable data even in the subjective appraisal of disease impact, as in this study. It is recognized that there is no one best method of scientific research [54, 55]. Therefore, the merits of combining both quantitative and qualitative methodology, to adequately elucidate patients' perspectives, are advocated [23, 24, 56]. Combined data from rheumatologists, health-care professionals and patients can then be utilized to impact positively on health status and prognosis in patients with RA.


    Acknowledgments
 
We thank Marianne McGiffin, University of Dublin, for her helpful advice throughout the study. We also thank our colleague, Dr Douglas Veale, and Dr John Kirwan, Bristol, for critical reading of the manuscript. PM was supported by a research grant from the Religious Sisters of Charity, Our Lady's Hospice, Dublin, Ireland.


    Notes
 
Correspondence to: P. Minnock, Rheumatology Rehabilitation, Our Lady's Hospice, Harold's Cross, Dublin 6, Ireland. E-mail: minnockp{at}eircom.net Back


    References
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 

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Submitted 24 September 2002; Accepted 16 January 2003