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%) |
|
|