Research Article
Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis
Table 1
Participant’s characteristics and outcomes.
| | | Mean
(SD; range [min–max])
Count (%) |
| | Patients () | | | Demographic characteristics | | | Gender (female) | 59/92 (64%) | | Age (years) | 46.4 (13.9; [17–77]) | | Clinical outcomes | | | MS subtype | | | Relapsing-remitting | 41 (41%) | | Primary and secondary progressive | 58 (59%) | | Duration of MS (years) | 14.8 (10.2; [1–44]) | | EDSS score | 5.5 (2.0; [1–9.5]) | | DEX score | 24.8 (17.9; [0–63]) | | Bladder dysfunction (yes) | 68 (74%) | | Urinary intermittent catheterisation (yes) | 19 (19%) | | Current disease-modifying treatment (yes) | 76/91 (84%) | | Socioeconomic variables | | | Professional activity (yes) | 45/94 (48%) | | Outpatient rehabilitation (yes) | 68 (69%) | | Use of formal care (yes) | 28 (28%) | | Mean formal care time (hours per day) | 2.9 (4.7; [0.3–24]) | | Informal caregivers () | | | Demographic characteristics | | | Gender (male) | 51 (51.5%) | | Age | 52.3 (14.4; [19–88]) | | Relationship to the patient | | | Parent | 21 | | Spouse | 69 | | Brother or sister + friend | 5 + 1 | | Child | 3 | | Clinical outcomes | | | SF12-PCS | 41.6 (6.8; [10.5–55.2]) | | SF12-MCS | 39.5 (11.0; [9.9–61.6]) | | Socioeconomic variables | | | Coresident with the patient (yes) | 82 (83%) | | Professional activity (yes) | 61 (61.6%) | | Retired (yes) | 27 (28%) | | In charge of an elderly person + child <18 years (yes) | 24 + 26 (51%) | | Conflicting role (yes) | 73 (74%) | | Reduced professional activity due to caregiving (yes) | 18 (18%) | | Reduced leisure activities due to caregiving (yes) | 52 (53%) | | Reduced friend network due to caregiving (yes) | 32 (32%) |
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