Socio-demographic characteristics and attitudes to MS
The data for the MS patients have been presented elsewhere [
17,
18].
Over a period of seven months, 170 consecutive patient-caregiver dyad attendees at the clinic met our inclusion criteria and agreed to participate in the study. The caregivers consisted of 60 men and 86 women (the gender of 24 caregivers was not recorded), with mean age of 35.7 years. Parents and spouses constituted about a quarter, each, of the sample. There were no significant sex and diagnostic differences in age, education, and marital status (P > 0.05). Men were significantly more in formal employment than the women(P < 0.001). The caregivers were well matched with the general population control group by sex, age, education, occupation and marital status (P > 0.05) (Table
1).
Table 1
Comparison of socio-demographic characteristics: MS family caregivers vs. general population control
Age of caregiver (SD) | 35.7(10.8) | 35.7(10.5) | | ns |
≤ High school (%) | 90(52.9) | 72(52.9) | | |
≥ College (%) | 80(47.1) | 64(47.1) | | ns |
Unemployed/housewife (%) | 54(38.0% of 142)* | 55(40.4) | | |
Employed (%) | 88(40.8% of 142) | 81(59.6) | 0.08 | ns |
Married (%) | 104(71.2% of 146) | 90(66.2) | 0.6 | ns |
Analysis of caregiver attitudes for the response options "moderate/a lot", showed that approximately two-thirds of caregivers expressed sadness about the patients' illness, while over one-half expressed feelings of disgust, exhaustion and fear of having MS.
There were no significant sex and diagnostic differences in caregiver attitudes to MS (P > 0.05).
Differences in QOL domain scores
The men and women had similar QOL domain scores (P > 0.05). In most domains, the caregivers of patients with RRMS tended to have higher QOL domain scores than the caregivers of patients with PMS. But this trend did not reach significance (P > 0.05).
Using raw scores, the general population control group had significantly higher scores than the caregivers in all the domains (P mostly < 0.01), except the environment (P = 0.2) (Table
2). Similarly, caregivers had significantly higher scores than the patients for all the domains (P mostly < 0.001), except the environment (P > 0.05).
Table 2
Comparison of QOL domain scores of caregivers and general population control group
Physical health 6-domain model | 10.5 (1.9) | 11.1(2.0) | 2.4 | 281 | 0.02 | 2.4 | 0.05 – 0.52 |
Psychological health 6-domain | 16.9 (2.5) | 17.7(2.9) | 2.6 | 278 | 0.01 | 0.31 | 0.07 – 0.54 |
Independence | 14.2 (2.2) | 15.7(2.7) | 5.3 | 281 | 0.001 | 0.63 | 0.38 – 0.86 |
Social relations | 10.5 (1.8) | 11.4(2.2) | 3.9 | 279 | 0.001 | 0.46 | 0.22 – 0.70 |
Environment | 28.2 (3.2) | 28.9(4.5) | 1.4 | 279 | 0.2 | 0.17 | - 0.06 – 0.41 |
Spiritual | 3.6 (0.8) | 3.9(0.8) | 2.9 | 281 | 0.004 | 0.34 | 0.11 – 0.58 |
General facet health & QOL | 7.5 (1.0) | 8.3(1.4) | 5.4 | 283 | 0.001 | 0.64 | 0.4 – 0.88 |
Physical health 4-domain model | 24.7 (3.8) | 26.8(4.4) | 4.2 | 280 | 0.001 | 0.51 | 0.27 – 0.75 |
Psychological health 4-domain | 20.5 (2.9) | 21.6(3.4) | 2.9 | 276 | 0.004 | 0.35 | 0.11 – 0.59 |
Comparison of MS caregivers' QOL with diabetes and psychiatric caregivers' QOL
Using means corrected for socio-demographic variables and duration of illness, we found that our MS caregivers had similar scores with caregivers of diabetic and psychiatric patients in the environment domain and general facet on health and QOL (P > 0.05). However, caregivers of psychiatric patients had higher scores than MS caregivers in the following domains: physical health (ES: 95% C.I. = 0.91: 0.67 – 1.16), and social relations (ES: 95% C.I. = 0.80: 0.55–1.04) (F = 15.3, df = 2/556, P < 0.0001). Caregivers of diabetes patients had higher scores than MS caregivers for the following domains: physical health (ES: 95% C.I. = 0.38: 0.12 – 0.63) and psychological health (ES: 95% C.I. = 1.08: 0.81 – 1.34) (F = 28.6, df = 2/556, P < 0.0001).
Factors associated with QOL
The only noteworthy trend for the relationship between caregiver attitudes and QOL scores was that caregivers who felt afraid of having MS (moderately/a lot) had significantly lower scores in the physical health domain than caregivers for whom this fear was "not present/or a little" (t = 2.4, df = 113, P = 0.02; Effect size = 0.46, 95% C.I., 0.08 – 0.83).
For caregiver relationship to the patient, parents had significantly higher psychological health scores than spouses (F = 4.5, df = 4/104, P = 0.002).
Although caregiver QOL scores were negatively correlated with patient's BDI and EDSS scores and duration of illness, the level of significance did not meet our Bonferroni correction criterion for any of the domains (except: duration of illness versus spiritual domain: r = - 0.23, P = 0.01). In view of these trends, we did an initial ANCOVA in which the following were entered as covariates: socio-demographic characteristics of patients and caregivers, caregiver attitudes to MS, and patients' clinical data. Caregiver QOL domain scores were each entered as dependent variables. Of the many trends (Table
3A), the only significant covariates were as follows: caregiver's fear of having MS, lower levels of caregiver education (P < 0.008), caregiver unemployed, patient's longer duration of illness, and lower levels of education of patient (P < 0.05), all of which were associated with diminished caregiver QOL.
Table 3
Factors associated with caregiver quality of life domain scores in analysis of covariance (ANCOVA)
Carer afraid of having MS | Physical health | 8.6 | 0.008 |
Education of caregiver | General facet health & QOL | 8.6 | 0.008 |
Occupation of caregiver | General facet health & QOL | 4.6 | 0.04 |
Patient's duration of illness | Physical health | 6.0 | 0.02 |
| General facet health & QOL | 3.7 | 0.07 |
Gender of patient | Physical health | 3.4 | 0.08 |
Education of patient | Environment | 5.9 | 0.02 |
Occupation of patient | Environment | 3.9 | 0.06 |
B. Significant covariates** | | | |
BDI (depression) score | Social relations | 4.0 | 0.05 |
| Environment | 3.9 | 0.05 |
EDSS (disability score) | Independence | 5.9 | 0.02 |
With regard to caregiver attitudes, this result implies that caregivers were affected more by their concern about developing MS in the future, than their feelings about the patients' illness and their caregiving role.
When the ANCOVA analysis was repeated using only patients' duration of illness, BDI and EDSS scores as covariates (Table
3B), we found that these variables had significant impact on social relations, environment (for BDI) and independence domains(for EDSS) (P < 0.05).
However, the resulting corrected means from this later ANCOVA analysis are highly interesting. First, Table
4 shows that, after controlling for the impact of patients' BDI and EDSS scores on caregivers' QOL scores, the resulting corrected caregivers' domain scores were now lesser than those of the control group for only the following: social relations, spiritual and general facet (P < 0.001, ES: 0.35 – 0.62). Second, caregivers of patients with PMS had significantly higher physical health domain scores than the general population control group (P < 0.03). Third, caregivers of patients with PMS had significantly higher scores than caregivers of patients with RRMS for physical health and independence (P < 0.01).
Table 4
Adjusted caregiver QOL domain scores compared with general population control group*
Physical health | 11.3 (3.6) | 11.1 (2.0) | 0.6 | 254 | 0.5 | 0.08 | - 0.17 – 0.32 |
Psychological health | 16.9 (4.9) | 17.7 (2.9) | 1.5 | 254 | 0.1 | 0.19 | - 0.06 – 0.44 |
Independence | 15.3 (4.3) | 15.7 (2.7) | 0.9 | 254 | 0.3 | 0.12 | - 0.13 – 0.36 |
Social relations | 10.4 (3.8) | 11.4 (2.2) | 2.5 | 254 | 0.01 | 0.62 | 0.37 – 0.87 |
Environment | 28.6 (6.2) | 28.9 (4.5) | 0.4 | 254 | 0.7 | - | - |
Spiritual | 3.4 (1.4) | 3.9 (0.8) | 3.5 | 254 | 0.007 | 0.43 | 0.18 – 0.68 |
General facet health & QOL | 7.7 (2.1) | 8.3 (1.4) | 2.8 | 254 | 0.005 | 0.35 | 0.11 – 0.60 |
Physical health: | | | | | | | |
RRMS (N = 103) | 10.5 (2.1)** | 11.1 (2.0)**** | 2.2 | 151 | 0.03 | 0.51 | 0.00 – 1.01 |
PMS (N = 17) | 12.2 (2.9) | | | | | | |
Independence: | | | | | | | |
RRMS (N = 103) | 14.2 (2.4)*** | 15.7 (2.7)**** | 0.9 | 151 | 0.3 | 0.25 | -0.26–0.75 |
PMS (N = 17) | 16.4 (3.4) | | | | | | |
In other words, caregivers seemed to be at risk for lower QOL, if they were afraid of having MS, and were less educated, unemployed, and caring for patients with longer duration of illness, less education and significant depression and disability (Tables
3 &
4). In addition, whatever negative attitudes they might have had towards MS, these attitudes had no significant impact on their QOL as a group; rather, their concern was a more personal one, namely, whether they would be stricken with the same disability and distress of MS that their relatives were suffering from.
Predictors of QOL
In multiple (stepwise) regression analysis, with the caregiver general facet as the dependent variable and patient's and caregiver's characteristics as independent variables, the only significant predictor of the caregiver's QOL was the general facet derived from the caregiver's impression of the patient's QOL. This accounted for 10.6% of the variance (standardized beta = 0.33, P < 0.001).
In view of this result, it was necessary to assess the impact of caregiver attitudes to MS on the caregiver impression of the patient's QOL. This was done by a series of t-tests (with Bonferroni correction), using domain scores derived from caregiver impression of the patient's QOL as the dependent variables. Each caregiver attitude (positive versus negative) was used as a grouping variable. The only noteworthy result was that caregivers who felt sad about the patients' illness rated the patients as having significantly lower physical health scores than caregivers who did not express sadness about the patients' illness (t = 2.56, df = 106, P = 0.01; Effect size = 0.52, 95% C.I. = 0.11 – 0.92). It is important to note that caregiver attitudes had no significant impact on their impression of patients' general facet on health and QOL.