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Keywords:

  • Rheumatoid arthritis;
  • Quality of life;
  • Social support;
  • Caregivers;
  • Knowledge of disease

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Objective

To examine the relationships between the quality of life (QOL) of women with rheumatoid arthritis (RA) and 1) their perceived levels of social support and 2) their primary caregivers' knowledge of RA and its treatment.

Methods

Women aged 40–60 years with established RA completed validated questionnaires on health status (Arthritis Impact Measurement Scales 2) and satisfaction with the levels of social support from their primary caregiver (Significant Others Scale A). In addition, both the caregivers and patients independently completed questionnaires that were designed to elicit knowledge of RA and its treatment.

Results

Fifty-eight patients and their primary caregivers completed the questionnaires. Analysis of the patients' health status demonstrated widespread biopsychosocial impairments. Arthritis pain, identified as the poorest health status dimension, was associated with the lowest levels of satisfaction, and received the highest priority for health status improvement. In contrast, the patients reported highest levels of satisfaction with social support from family and friends. Positive associations between social support variables and a number of QOL measures were observed. Both the caregivers and the patients displayed limited knowledge of RA and its treatment. Associations between the levels of knowledge and the patients' QOL measures were not observed.

Conclusion

In this study of women with RA and their caregivers, a limited knowledge of disease did not appear to impact QOL measures. However, failure to detect an association between knowledge of disease and QOL may have been influenced by a combination of the relatively small study numbers and insufficient variation in caregivers' knowledge, such that a floor effect existed.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Rheumatoid arthritis (RA) is a chronic disabling disease with an estimated prevalence of 1% (1). It affects women more frequently than men (2, 3), and the peak age of onset is 30–50 years. The associated constitutional features, such as fatigue and weight loss, may occur early and sometimes predominate (4). Inflammation can involve organ systems, including blood vessels, the nervous system, heart, and lungs (3, 4). RA can have a considerable impact on patients' quality of life (QOL) (5). The goals of treatment are usually relief of pain and stiffness, prevention of structural damage, and the preservation or improvement of function. Treatment may include medication, the judicious selection of rest and exercise regimens, and adaptation to the limitations of the disease (6).

There is increasing interest in the assessment of QOL measures, particularly in chronic and potentially disabling diseases such as RA (7, 8). The domains most frequently studied in rheumatology are physical, social, psychological, and occupational well-being (9–12). QOL is regarded as a complex amalgam of satisfaction in these 4 areas (10). Health and social gains are concerned with adding quality to the patient's life. This may require short-term or long-term treatments (13). Despite the subjective nature of QOL measures, therapeutic interventions that improve health status have been shown to consistently improve QOL measures (7). There is a growing emphasis on measuring QOL when evaluating the benefits of health care intervention. In RA, it has been suggested that the individual's health status may be determined more by their own actions than by the health professional's intervention, or by public policy (14). It has also been suggested that the family members of patients with RA can both influence and be influenced by the impact of the disease (12).

The importance of patient empowerment towards self care in the management of rheumatic diseases has been demonstrated in patient education and self management programs (15–17). Patient education is recommended as a combined effort between the multidisciplinary team, the patient, and the primary caregiver (18). However, the relationship between the principal caregiver's knowledge of RA and its treatment, and the patients' QOL has not been studied previously.

The hypothesis proposed in this study is that QOL in RA is in part determined by the level of family support, and that the quality of that support is influenced by the primary caregivers' knowledge of the disease and its treatment. This descriptive study examined the relationships between the QOL of women with RA and their perceived levels of social support, and their primary caregivers' knowledge of RA and its treatment.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Patients.

Patients attending the Department of Rheumatology, St. Vincent's University Hospital, Dublin, were recruited to the study by a single investigator (P.M.) over a 3-month period. A total of 68 questionnaires were administered according to the following selection criteria: 1) women between the ages of 40 and 60 years with an established diagnosis of RA (19) for at least 3 years; 2) stable treatment with a disease-modifying antirheumatic drug for at least 4 months; and 3) the agreement of a primary caregiver to participate in the study. Thus, a relatively homogeneous cohort of women with RA was selected for evaluation. Neither the patients nor the caregivers had previously received structured health education in relation to RA and its management.

The investigator spent a minimum of 20 minutes with each patient explaining the details of the study. All were given a specifically designed patient and family information leaflet. After agreeing to participate, each patient provided written consent. At the same time, the details of the caregivers participation were explained. The patients were asked to nominate the person who, on a day-to-day basis, was their chief provider of emotional and instrumental support. The request made was that the patients and their caregivers would complete the knowledge questionnaires independently in their home environment. A stamped addressed envelope for returning the completed questionnaires was given to each patient. Permission to remind the patient by telephone to complete and return the questionnaires was obtained. Ethical approval for the study was granted by the Ethics and Medical Research Committee, St. Vincent's University Hospital.

Measures.

The Arthritis Impact Measurement Scales 2 (AIMS2), a multidimensional self-administered questionnaire, was used to quantify a broad range of QOL issues (20). It measures the physical, psychological, social, and occupational aspects of health status. Thus, it supports the World Health Organization's concept of health as a biopsychosocial state of well-being (12, 21). It is a 78-item questionnaire; the first 57 items are broken down into 12 scales that can be combined into 5 component models of health status: physical, affect, symptom, social interaction, and role. Physical measures include 6 items: mobility level, walking and bending, hand and finger function, arm function, self care, and household tasks. When combined, they give the physical component model of health care. Psychological measures combine the level of tension and mood to give the affect model. The social model measures social activity and social support from family and friends. The symptom model refers to the pain scales. Finally, work scales provide the role model of health status. Each scale contains 4–7 items, and each item contains 2–6 possible responses. Item responses are summed by group to produce scale scores, and then a final score is produced by normalizing or scaling to a standard of 0–10. A low value is indicative of a high health status. The remaining items relate to satisfaction, attribution, and prioritization of health issues in relation to arthritis, details of comorbidities, medication, and sociodemographics. The 12 individual scales (6 physical, 2 psychological, 2 social, 1 pain, and 1 work) were used to indicate QOL measures.

The Significant Others Scale A (SOS-A), a validated and reliable instrument (22), was used to measure satisfaction with social support because the sensitivity of the AIMS2 social support scales has not been extensively documented (21). This self-administered scale permits the user the flexibility of rating from 1 to 7 social supports. It allows the measurement of satisfaction with perceived support to be linked to the 1 relevant caregiver specified by the patient. The SOS-A assesses 4 different social support functions (2 emotional and 2 practical functions). For each of the 4 social support functions, the individual being rated is scored in terms of the actual level of support received and the ideal level of support desired. Ratings are made using a 7-point scale from 1 (never) to 7 (always). Scores are thus derived for actual and ideal levels of support. In addition, the discrepancy between the actual and ideal levels of support is determined. This discrepancy score essentially provides an index of likely satisfaction with emotional and practical social support, the 2 social support variables analyzed in this study. This measurement tool is user friendly, which gives due regard to the potential physical impairments of the subjects.

The Patient Knowledge Questionnaire (PKQ) was developed for use with patients with RA (23). It is self administered and is used to assess patients' knowledge of the disease and its treatment. Topics assessed were identified as important by patients themselves in a previous study (24). These items are also congruent with certain facts that are considered essential for adequate self management (25) and embrace 4 major areas: general arthritis knowledge, medication and compliance, exercise regimens, and joint protection (24). It was designed to measure knowledge prior to intervention. The questionnaire consists of 16 questions with a choice of 80 possible answers, 30 of them correct (100%). A “don't know” option is provided to enhance compliance.

The one caregiver specified by each individual patient was asked to complete an additional questionnaire to evaluate their knowledge of RA. This was derived from the PKQ (21), which was rephrased to address caregivers' knowledge, and retitled the Rheumatoid Arthritis Knowledge Questionnaire (RAKQ). Of the 16 questions in PKQ, only 6 (questions 4 and 11–15) required rephrasing. Completed RAKQs and PKQs were assigned 1 overall percentage score, which represented the knowledge variable.

Statistics.

All analyses were performed on a desktop personal computer using Microsoft Excel (Redmond, WA) and the statistical package Data Desk (Data Description, New York, NY). Summary statistics and frequency distributions were used to describe and interpret the meaning of the data. A Pearson's correlation coefficient was used to demonstrate the nature of associations between QOL variables and the social support variables and the knowledge variables. The association between RAKQ and PKQ was also explored: The caregivers and the patients were considered matched and, therefore, a paired Student's t-test was used to examine the differences in knowledge.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Clinical and demographic details.

Fifty-eight matched sets of patient and caregiver questionnaires were completed and returned, giving a response rate of 85%. The clinical and demographic details of the 58 patients are displayed in Table 1. The average age was 50.5 years, with mean disease duration of 14 years. The majority were married (86.2%). Formal education was limited to 8 years in 39.3%; 19.6% had a third-level qualification. Approximate family income was less than IR£19,000 for 80.7%; 48% had an income of less than IR£10,000 per annum. The main form of work for most of the women (60.3%) was housework. The remaining 15 (25.8%) were either unemployed, disabled, or retired. Forty-four women (81.5%) identified their husband or partner as their primary caregiver; 10 (18.6%) identified either their closest son or daughter (n = 5), brother or sister (n = 2), best friend (n = 2), or mother (n = 1).

Table 1. Demographic details of patients with rheumatoid arthritis
Total patients58
Mean age ± SD (range), years50.5 ± 5.5 (41–60)
Mean disease duration ± SD (range), years13.9 ± 8.4 (3–34)
Marital status 
 Married (%)50 (86.2)
 Separated (%)3 (5.2)
 Never married (%)5 (8.6)
Education, n = 56 (%) 
 Primary (8 years)22 (39.3)
 Second level (5–6 years)23 (41.1)
 Third level (3–4 years)11 (19.6)
Income/year, n = 52 (%) 
 <£10,00025 (48.1)
 £10,000–19,00017 (32.7)
 £20,000–29,0005 (9.6)
 >£30,0005 (9.6)
Work status, n = 58 (%) 
 Paid8 (13.8)
 House work35 (60.3)
 Unemployed2 (3.4)
 Disabled10 (17.2)
 Retired3 (5.2)
Caregiver, n = 54 (%) 
 Spouse/partner44 (81.5)
 Son/daughter5 (9.2)
 Sibling2 (3.7)
 Best friend2 (3.7)
 Mother1 (1.8)

Quality of life measures.

Table 2 outlines the 12 health status dimensions measured by AIMS2. The dimensions that patients scored highest, indicating poorest health status, were arthritis pain (5.5 ± 2.3), social activity (5.2 ± 1.9), level of tension (4.3 ± 2.1), and walking and bending (4.1 ± 2.6). The mean scores for the remaining dimensions ranged between 1.2 and 3.4. The full range of scores was utilized.

Table 2. AIMS2 12 health status dimensions of patients with rheumatoid arthritis*
AIMS2 scaleMean ± SD (range)
  • *

    AIMS2 = Arthritis Impact Measurement Scales 2.

Mobility (n = 56)2.5 ± 2.2 (0–9)
Walking and bending (n = 57)4.1 ± 2.6 (0–9.5)
Hand and finger function (n = 57)3.4 ± 2.5 (0–9)
Arm function (n = 57)2.0 ± 2.2 (0–8.5)
Self-care tasks (n = 56)1.2 ± 1.8 (0–6.2)
Household tasks (n = 58)2.4 ± 2.6 (0–10)
Social activity (n = 57)5.2 ± 1.9 (1–8.5)
Social support from family and friends (n = 57)2.4 ± 2.3 (0–8.1)
Arthritis pain (n = 58)5.5 ± 2.3 (1–9)
Work attendance (n = 58)2.5 ± 2.8 (0–9.4)
Level of tension (n = 58)4.3 ± 2.1 (0–8.5)
Mood (n = 58)3.3 ± 1.9 (0–7.5)

Table 3 indicates patients' satisfaction with each of the 12 health status dimensions. The least satisfaction (32.2%) and the greatest level of dissatisfaction (57.1%) related to arthritis pain. The greatest level of satisfaction was with support from family and friends (73.2%). More than half of the patients expressed greater levels of satisfaction than dissatisfaction with an additional 5 dimensions (mobility, walking and bending, arm function, self care, and social activity).

Table 3. Details of patient's satisfaction with each of the 12 health status scales*
AIMS2 scale1, %2, %3, %4, %5, %
  • *

    AIMS2 = Arthritis Impact Measurement Scales; 1 = very satisfied; 2 = somewhat satisfied; 3 = neither satisfied nor dissatisfied; 4 = somewhat dissatisfied; 5 = very dissatisfied.

Mobility level (n = 57)22.836.822.88.78.7
Walking and bending (n = 58)20.727.622.413.815.5
Hand/finger function (n = 56)21.433.923.217.93.6
Arm function (n = 57)29.835.112.317.55.3
Self care (n = 58)32.832.88.610.315.5
Household tasks (n = 58)20.725.924.118.910.3
Social activity (n = 56)35.726.819.610.77.1
Support from family (n = 56)50.023.212.58.95.4
Arthritis pain (n = 56)5.426.810.732.125.0
Work (n = 54)13.022.231.520.413.0
Level of tension (n = 56)17.925.030.419.67.1
Mood (n = 57)21.722.821.026.38.8

Figure 1 examines the patients' priorities for health status improvement. Patients' were requested to highlight the 3 dimensions where improvement was most desired. Fifty-seven of the 58 patients completed this scale. Thirty-nine patients (68.4%) prioritized arthritis pain as 1 of 3 dimensions most needing improvement. In addition, this analysis confirmed social support from family and friends as 1 of 3 dimensions least needing improvement. Only 9 patients (15.8%) selected this dimension as a priority for improvement.

thumbnail image

Figure 1. Patients' priorities for improvement in health status. Patients were requested to highlight 3 of the 12 dimensions where improvement was most desired: 68.4% prioritized arthritis pain.

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Social support.

Patients' satisfaction with the levels of social support provided by primary caregivers was further highlighted by the SOS-A questionnaire, which was completed by 54 patients. Figure 2 demonstrates that most patients experienced high levels of satisfaction with both emotional and practical support. Thus, 35 of the 54 patients (64%) reported no discrepancy between actual and their ideal levels of support. Table 4 examines correlations between social support and QOL measures. A number of significant correlations were observed between both the AIMS2 social support scale and the SOS-A practical support variable, and some of the AIMS2 physical component scales. No significant correlations were observed between SOS-A emotional support variable and AIMS2 scales. Additional significant correlations were observed between the AIMS2 social support variable and social activity, as well as both affect scales.

thumbnail image

Figure 2. Index of satisfaction with social support measured by the Significant Other Scale A. This instrument assesses both emotional and practical social support functions. For each function, the patient rated the actual level of support received and the ideal level of support desired. The discrepancy between the 2 represents the index of satisfaction; zero discrepancy equates to satisfaction. The median value was 0 for both functions, indicating no discrepancy between the actual and the ideal levels. Each boxplot also represents the interquartile range, the range, and outliers.

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Table 4. Correlations between social support and QOL measures*
AIMS2 scaleAIMS2 social supportSOS-A emotional supportSOS-A practical support
rPrPrP
  • *

    Only P values with a 5% significance level are shown. QOL = quality of life; AIMS2 = Arthritis Impact Measurement Scales 2; SOS-A = Significant Others Scale A; NS = not significant.

Mobility (n = 56)0.17NS−0.094NS0.175NS
Walking and bending (57)0.310.0180.183NS0.256NS
Hand and finger function (n = 57)0.370.0030.169NS0.3270.015
Arm function (n = 57)0.20NS−0.163NS0.095NS
Self-care tasks (n = 56)0.24NS−0.292NS−0.020NS
Household tasks (n = 58)0.340.010.038NS0.3870.023
Social activity (n = 57)0.350.007−0.192NS0.125NS
Arthritis pain (n = 58)0.23NS−0.115NS0.258NS
Work attendance (n = 58)0.02NS0.057NS0.256NS
Level of tension (n = 58)0.360.0050.140NS0.216NS
Mood (n = 58)0.340.0090.009NS0.182NS

Knowledge of disease and QOL.

The level of knowledge of RA and its treatment, among caregivers and patients, was limited. Patients had greater levels of knowledge than caregivers (median PKQ 18 [60% of maximum 30]; mean 18 [60%], range 5–26, interquartile range 7 [46.7%–70%]; versus median RAKQ 15 [50% of maximum 30], mean 15.5 [51%], range 2–24, interquartile range 5 [43%–60%]; P = 0.0003). A positive correlation between the PKQ and RAKQ values was observed (r = 0.522, P = 0.0001).

To examine the hypothesis that QOL in RA is in part determined by the primary caregivers' knowledge of the disease and its treatment, the relationship between the caregivers' knowledge and the patients' health status was examined. No statistically significant associations between the results of the RAKQ (or the PKQ) and any of the 12 health status dimensions were observed (Table 5).

Table 5. Correlations between knowledge and QOL measures*
AIMS2 scaleRAKQ rPKQ r
  • *

    QOL = quality of life; AIMS2 = Arthritis Impact Measurement Scales; RAKQ = Rheumatoid Arthritis Knowledge Questionnaire; PKQ = Patient Knowledge Questionnaire.

Mobility (n = 56)0.0930.093
Walking and bending (57)0.1810.243
Hand and finger function (n = 57)−0.016−0.026
Arm function (n = 57)−0.002−0.079
Self care tasks (n = 56)0.2410.133
Household tasks (n = 58)0.1550.135
Social activity (n = 57)−0.086−0.085
Social support/family/friends (n = 57)0.1720.206
Arthritis pain (n = 58)−0.100−0.167
Work attendance (n = 58)0.0640.126
Level of tension (n = 58)0.0150.042
Mood (n = 58)0.0230.023

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

This study examined the relationships between QOL measures in women with established RA and their perceived levels of social support from family and friends, and their primary caregivers' knowledge of RA and its treatment. As expected, the analysis of patients' health status demonstrated widespread biopsychosocial impairments. In particular, arthritis pain was reported as the worst health status dimension, associated with the greatest level of dissatisfaction, and given top priority for improvement. In contrast, most patients reported high levels of satisfaction with the quality of social support provided by family and friends. Significant associations between the levels of social support and some physical health scales, social activity, and affect scales were demonstrated. Both the caregivers and the patients displayed limited knowledge of RA and its treatment, but a statistically significant association between the patients' QOL and the limited knowledge levels did not emerge.

The women that participated in the study associated arthritis pain with the poorest health status ratings, the highest levels of dissatisfaction, and the highest priority for improvement. These observations are consistent with previous findings (26, 27). Pain is a determinate of disability that distinguishes RA from many other chronic disabling diseases. As well as influencing the patients' assessment, arthritis pain can also influence the physicians' assessment of health status and disability, and can impact medication usage (28–32). Moreover, current pain is a predictor of future pain and disability (29). Therefore, the observations reported in this study highlight the need to prioritize pain management strategies in therapeutic and health education interventions in RA.

The level of the patients' satisfaction with social support from family and friends, including their primary caregiver, was noteworthy in this study and is consistent with the hypothesis that the level of family support in part determines QOL in RA. This suggestion is supported by the observed associations between social support variables and a number of QOL measures. Previous studies have demonstrated the benefits of supportive relationships for individuals with RA (12, 33). The perception of adequate and positive social support enhances adherence to treatment regimens, rehabilitation, and overall health outcomes (34, 35). Social support involves a reciprocal relationship (12). For the patient with RA, different types and levels of support may be needed at different stages of the disease course. It has been suggested that the provision of optimal social support in RA is dependent on both the patient and the caregiver having a similar knowledge base and understanding (12, 36, 37). Where spouses were included in a pain coping skills training intervention for patients with knee osteoarthritis, the benefits of social support were demonstrated (38). Therefore, the involvement of the primary caregivers in education programs has the potential to enhance patient competencies and improve their QOL.

A novel objective of this study was to measure both caregivers' and patients' knowledge of RA and its treatment to examine possible relationships with the patients' QOL. The patients demonstrated limited knowledge levels, which were equivalent to the knowledge level described in similar cohorts of randomly selected British patients using the same questionnaire (23, 39). The knowledge levels observed in the caregivers were significantly lower than in the patients. Relationships between the knowledge levels and the patients' QOL measures were not observed. This is consistent with previous studies that evaluated relationships between patients' knowledge and their QOL (40, 41). The low cluster of knowledge scores found in this study may have minimized the potential to find an association with QOL measures.

This was a descriptive study that evaluated limited numbers of patients, and no education intervention was included. Future studies that evaluate the association between knowledge of disease and QOL should incorporate an education component directed at both patients and their caregivers.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

We thank Marianne McGiffin, MPhil, Trinity College Dublin, for her advice throughout the study. We also thank Margaret P. Treacy, Professor of Nursing, University College Dublin, and Dr. Michael Shanahan, Flinders University of South Australia, for critical reading of the manuscript.

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  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
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