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Rheumatology 2001; 40: 1169-1174
© 2001 British Society for Rheumatology
Original Papers |
Characteristics of handicap for patients with recent onset rheumatoid arthritis: the validity of the Disease Repercussion Profile
1 Department of Psychology, Royal Holloway, University of London, Egham, Surrey,
2 West Middlesex University Hospital, Twickenham Road, Isleworth, Middlesex,
3 Imperial College School of Medicine, London and
4 University College London, London, UK
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Abstract |
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Objectives. To investigate the applicability of the Disease Repercussion Profile (DRP) in the assessment of people with recently diagnosed rheumatoid arthritis. Previous research using this instrument has been confined to chronic samples.
Methods. Fifty-three patients with recent onset rheumatoid arthritis completed the DRP and other commonly used clinical outcome measures.
Results. The life areas of the DRP were highly interrelated, with the exception of finance. The total DRP score was associated with joint function, disability, subjective pain and coping, but was most highly associated with emotional disturbance, particularly depressive symptoms. No associations were found between measures of disease or demographic variables and DRP subscales. Activity was the area most often affected, with social life, emotions and appearance all more strongly endorsed than finances and relationships. However, whenever any of the areas was endorsed as affected, its impact was inevitably rated as very important. The pattern of self-perceived handicap was different from that reported in people with chronic arthritis.
Conclusions. These results offer evidence that the DRP provides a valid measure of handicap for patients with early illness even with relatively low levels of disability. However, handicap in early rheumatoid arthritis may be more highly associated with psychological distress than in later stages of the illness.
KEY WORDS: Rheumatoid arthritis, Quality of life, Handicap, Disability, Coping, Depression.
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Introduction |
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Rheumatoid arthritis (RA) is a chronic disease which often leads to high levels of disability, impairment and handicap [1]. Over the past decade, interest in measuring quality of life issues for patients with various chronic illnesses has grown and a growing body of literature describes measures that reliably assess concepts related to quality of life and/or patient-perceived handicap [2–7]. Wolfe and Hawley [7] have recently criticized the use of the EuroQOL with patients with rheumatic diseases, due to biases in the scoring system which question its validity. Thus, the need for alternative measures with demonstrated validity for samples of patients with RA is paramount to future research into quality of life issues.
Carr et al. [1, 3–6] have developed the Disease Repercussion Profile (DRP), which has been demonstrated to be a valid and reliable measure of patient-perceived handicap in samples of patients with RA in the UK, USA and Canada. However, the DRP was developed with patient samples with long-standing disease, with an average of 11 yr duration. The aim of the present study was to examine the clinical utility and validity of the DRP in a group of patients with recent onset RA. Correlations and multiple regressions between DRP scores and other related demographic and clinical outcome measures are reported.
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Participants |
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The participants were recruited into the study from the rheumatology clinics of three hospitals in and around west London. Fifty-three participants were recruited, all with a diagnosis of classical or definite RA [8], and all seropositive for rheumatoid factor. All participants had received their diagnosis in the past 2 yr, were able to read and write English and none had a history of psychotic illness or current alcohol or drug abuse. The mean age of the sample was 54.0 yr (S.D. 13.3). Thirty-two of the 53 participants were married and the majority were Caucasian. With regard to work status, the following proportions were represented in the sample: full-time work 24%, part-time work 16% and not working 60%. Table 1
reports the demographic and clinical characteristics of the sample.
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Procedure |
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At the point of entry to the study, the participants were given a series of questionnaires and clinical assessments, described below.
Measures
Handicap
Handicap was measured using the DRP [3]. The DRP covers six areas of functioning: activities, social function, relationships, emotion, finance and appearance. Participants are asked to indicate whether each of these areas of function has been affected by RA, and to estimate the importance of the impact for each area on a visual analogue scale rated 0–10. For relationships and finance, participants are asked to indicate whether the effect is positive or negative, although positive impacts score zero. A total score can be calculated by adding the scores for all six areas; this score ranges from 0 to 60. Individual scores are also available for perceived effects on each sphere.
Psychopathology
Anxiety and depression were measured using the Hospital Anxiety and Depression Scales (HADS) [9]. This measure offers an individual score for both anxiety and depression and was developed for use with hospital-based populations.
Clinical indices
The Ritchie Articular Index (RAI) [10] was determined by a rheumatology research nurse trained in its administration. Blood samples were taken on the day of the assessment for erythrocyte sedimentation rate (ESR) (Westergren) and C-reactive protein.
Disability and pain
Disability was measured with the Stanford Health Assessment Questionnaire (HAQ) [11], which has been demonstrated to be sensitive to clinical change in early RA [12]. Pain was assessed using a visual analogue scale, where level of pain was rated, three times a day over 7 consecutive days. The duration of pain was also estimated on a daily basis and the pain index was calculated by multiplying duration by intensity [13].
Coping measures
The Coping Strategies Questionnaire (CSQ) [14] measures coping strategies for dealing with pain. Although individual factor scores can be calculated, an aggregate score has been demonstrated to be equally useful and has been used in the present study [13].
Statistical analyses
All analyses were performed using SPSS 10.0 for Windows. The DRP data were normally distributed, although a few outliers were identified, which were replaced with values selected by the Explore program of SPSS as one above the next highest score. The only variables not normally distributed were depression and C-reactive protein. In both cases, the distributions were rendered normal through transformation, using a square root transformation for depression and a logarithmic transformation for C-reactive protein. Pearson product moment correlations were calculated between the clinical indices, ratings of handicap for each area of function and for the total DRP score. Although scores have in the past been reported separately for each of the six items, Cronbach alpha for the total DRP was acceptable (
=0.77) and as such this total score has also been used in the analyses. In addition, multiple regression analyses with simultaneous entry of variables were conducted to examine which variables were associated with independent variance in DRP scores. The following variables were consistently related to DRP scores and were entered as the predictor variables: RAI, CSQ, HADS depression and anxiety, pain index and disability (HAQ).
Carr et al. [3, 6] reported the percentage of patients in their chronic samples endorsing each area of function as affected by disease. They also reported correlations between various clinical variables such as depression and disability, and average DRP scores [3]. While these are valuable indices, they do not give an indication of the relative importance of dysfunction in each area to the person's lifestyle. The structure of the DRP means that if an area of function is unaffected by RA, that subscale is automatically assigned a score of zero. It is possible for one area of functioning (e.g. activity) to be more often affected by RA than another sphere (e.g. emotions), but when the latter sphere is affected, the resulting repercussions might be perceived as more important to the person's lifestyle. Therefore, it is of interest to know not only how frequently each area of functioning is affected (measured by the frequency of responses which are not zero), but the importance of that area in the sample as a whole (measured by the mean importance rating on that area of functioning for the whole sample). In addition, it is also relevant to assess the importance of each area of function for those people who are affected by the illness in that particular sphere (measured by the mean importance rating for that area of functioning among those patients who endorsed it as having been negatively affected by RA). This last measure is a type of weighted average, and will be referred to as such. In the present study, all three of these variables were calculated from the DRP subscale data. To compare the relative importance of different spheres across the sample, a series of paired t-tests was performed to identify differences between ratings of importance for each area of function. The weighted averages are presented for descriptive purposes only.
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Results |
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Correlational analysis
Intercorrelations between different areas of function on the DRP are presented in Table 2
. The total score was significantly correlated with each of the independent areas of function. Financial functioning was not associated with any of the other areas. However, there were strong associations between the other subscales.
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The correlations between demographic and clinical variables and the DRP scores are reported in Table 3
. None of the demographic variables analysed, nor C-reactive protein, was correlated with any of the DRP scores. The total DRP score was highly correlated with increased depression, anxiety, disability, pain and joint function. In addition, low levels of active coping were associated with a higher DRP score. Similar patterns were identified for each subscale, with the exception of finance.
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Regression analyses
A series of multiple regression analyses was conducted. The predictor variables were those correlated with DRP scores in the analyses reported above. The predictor variables significantly associated with the following DRP scores: total DRP (adjusted R2=0.46, P<0.000), activity (adjusted R2=0.20, P<0.008), social life (adjusted R2=0.23, P<0.004), relationships (adjusted R2=0.26, P<0.002), emotion (adjusted R2=0.50, P<0.000) and appearance (adjusted R2=0.21, P<0.007). The only variable that failed to be predicted by the regression equation was finance (P>0.5). For the activity and social domains, judgements appeared to be multiply determined with none of the predictors significantly contributing to the unique variance in scores, although coping strategies approached significance in the prediction of social disruption. Depression was the most consistent predictor variable being independently associated with the total DRP score (t(6,55)=3.333, P<0.002), relationships (t(6,55)=2.635, P=0.01), emotion (t(6,55)=2.896, P=0.006) and appearance (t(6,55)=2.887, P=0.006). The only other variable that contributed independently to the variance in any of the DRP scores was RAI which was uniquely associated with the appearance rating (t(6,55)=2.166, P=0.035). The seven regression models are presented in Table 4, with non-standardized coefficient beta and 95% confidence intervals for those variables that contributed independently to the variance of each score.
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Pattern of handicap
All but eight participants (85%) reported that at least one of the six areas of function had been negatively affected by the illness. The proportion of participants endorsing each area and the ratings of relative importance for the subset of participants who endorsed each area are reported in Table 5. Activity was the area most frequently reported to be negatively affected by RA, followed by social, emotional, appearance, financial and relationships. Interestingly, 13% of people felt that their relationships had been positively influenced by their illness.
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A one-way analysis of variance confirmed that there were differences between the different areas (F(5,52)=65.299, P<0.0005). Paired t-tests were performed to compare the overall levels of handicap for each of the six areas of function. The t-test results indicate that there was significantly more perceived handicap in the area of activity than in any other area. Relationship functioning and financial functioning were not significantly more handicapped than one another, but were significantly less handicapped than all other areas. All other areas were equally affected by the experience of RA. However, for the subset of those participants endorsing each area as being negatively affected, the average importance placed on that loss of function was universally high (7.0–8.5 on a 0–10 visual analogue scale), with the possible exception of the finance area (average importance 5.9).
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Discussion |
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This is the first investigation of patient-perceived handicap among patients in the early stages of RA. Those making up the sample were relatively able-bodied, with disability levels lower than those reported in trials of patients with more long-standing disease. Despite this, 85% endorsed at least one area of function assessed by the DRP that was affected as a result of RA. However, the frequencies of perceived handicaps in each of the areas differed from those reported by people with more chronic disease [3]. Relative to the chronic disease sample [3], our patients (Table 4
) more frequently reported disturbances to appearance (34 vs 11%) and finances (32 vs 20%). However, our patients were less likely than the chronic disease sample to report disturbance to activities (70 vs 96%), social life (49 vs 80%), relationships (42 vs 61%) and emotions (42 vs 61%). This suggests that there is considerable subjective handicap associated with RA which develops early in the course of the illness even in the absence of objective disability. However, the pattern of subjective handicap may differ with progression of the disease. The results of both correlational and regression analyses indicate that it is mood disturbance, rather than disease or disability, that accounts most reliably for subjective handicap early in the illness. Judgements concerning activity and social activities appear to be multiply determined by mood, disability, pain, coping and joint function, with none of these factors being dominant. Judgements about emotions, relationships and appearance, on the other hand, are primarily related to levels of depression, and this effect is carried through to the overall DRP score. Disability or disease parameters are not the main factors affecting any of these ratings, but depression was when mood-related areas are considered.
These results are partly consistent with Carr's [1] earlier work which also reported a relative dissociation between disease variables, such as C-reactive protein, and DRP scores. However, in her chronic sample, correlations between disability and the DRP (r=0.55) were greater than those between depression and the DRP (r=0.34), using the same outcome variables as those reported here. Despite the correlations between disability and the DRP, multiple regression analyses clearly indicate that depression is more strongly linked to subjective handicap in the present sample of patients in the early stages of RA.
In summary, the present results would indicate that even early in the course of RA, when patients have relatively low levels of disability, patients perceive high levels of handicap. However, handicap is more associated with disturbances in mood early in the disease course. Loss of activity is most strongly endorsed as an area of handicap, but areas such as social life, emotional consequences and appearance are also frequently endorsed. Relationship and financial changes may be longer-term consequences of illness and of less relevance to patients early in the course of RA. Indeed, some patients noted positive changes in these areas, which have not been widely reported in chronic samples [1, 3] and may be only short-term consequences of the illness. Although for finance the results from chronic samples indicated that this may not be a frequently endorsed item in long-term illness. Regardless of which area of function was endorsed, patients reporting a negative impact rated the effect on their lifestyle as, on average, very important.
The patients found the DRP easy to complete and scores derived from the DRP showed predicted correlations with other outcome variables, indicating validity. Strong intercorrelations among five of the six spheres and acceptable Cronbach alpha, indicate internal consistency in a sample of patients with early disease. These results taken together suggest that the DRP is a useful clinical tool, which is valid, reliable and appropriate for identifying the perceived handicap of living with RA early in the course of the disease.
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Acknowledgments |
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This study was supported by a grant from North Thames Regional Research and Development Programme. We are grateful to Bridget Ryan for her help in recruitment and administration of the outcome measures and to Sheila Davidson for her assistance in entering the data for this study. We also thank Diane Holmes, West Middlesex University Hospital, Dr Rod Hughes and Maggie Carr, St. Peter's Hospital, Chertsey, and the rheumatology staff at Charing Cross Hospital for their help in recruiting patients into the study. We would also like to thank the helpful comments of two anonymous referees.
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Notes |
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Correspondence to: L. Sharpe, Clinical Psychology Unit F12, Department of Psychology, University of Sydney, NSW 2006, Australia
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References |
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