Table 3 Narrative summary of HRQoL findings for IBM patients
Study | HRQoL and mental illness assessments | Values compared | IBM HRQoL dimensions* | ||
|---|---|---|---|---|---|
Physical | Psychological | Social | |||
Feldon et al. [34] | HRQoL SF-12 (PCS, MCS) | Age- and sex-matched normative US sample and rheumatoid arthritis patients | PCS: 30 IBM diagnosis IBM impacted PCS relatively to DM/PM: ß -8.94 ± 0.80, p < 0.001 Effect on work negative effect of IBM on work performance impacted PCS negatively: − 2.82 ± 0.83, p < 0.001 Treated by rheumatologist negative effect on PCS: − 1.22 ± 0.81, p = 0.133 Joint swelling negative effect on PCS: − 1.75 ± 0.80, p = 0.029 Multiple immunomodulators negative effect on PCS: − 1.79 ± 0.82, p = 0.029 Lung disease negative effect on PCS: − 0.73 ± 0.92, p = 0.428; | MCS: 46.6 IBM diagnosis no difference among IIM; IBM impacts MCS not differently relatively to DM/PM: ß − 1.10 ± 0.83, p = 0.189 Disease duration positive effect on MCS: 0.14 ± 0.06, p = 0.233 Effect on work negative effect of IBM on work performance impacted MCS negatively: − 2.82 ± 1.40, p = 0.044 Treated by rheumatologist negative effect on MCS: − 3.00 ± 1.33, p = 0.025 Dysphagia negative effect on MCS: − 2.30 ± 1.16, p = 0.048 Lung disease negative effect on MCS: − 2.80 ± 1.57, p = 0.076 | |
Goyal et al. [36] | HRQoL EQ-5D-5L, EQ VAS | NT5c1A antibodies | Median seropositive: 55 (25–80), seronegative: 65 (50- 80); no difference (p = 0.14) among seropositive or seronegative patients | ||
Rose et al. [39] | HRQoL SF-36 | Normal population (data not shown) | Reduction of physical domains Reduction of ‘Physical Functioning’, ‘Role Physical’ and ‘General Health’ compared to values of normal population; | Reduction of mental health domains | Reduction of social domains |
HRQoL INQoL | NMD (cf. Table 1) | Reduction of HRQOL | |||
Weakness 64.2 ± 28.4, Pain 46.0 ± 29.3, Locking 30.9 ± 27.3, Fatigue 54.9 ± 25.7 | Emotional 40.6 ± 23.4, body image 55.5 ± 28.6; | Activity 58.0 ± 24.0, Independence 55.1 ± 33.4, Social 32.8 ± 26.7 Intergroup differences between NMD: ‘Independence’ (ANOVA F 5.2; p < 0.001) ‘Activity’ (ANOVA F 5.5; p < 0.001) | |||
Anxiety and depression HADS | Depression mainly affected ‘Fatigue’ | No significant differences among NMD between HADS anxiety (F 2.90; P 0.01) and depression (F 0.4; P 0.86) Depression mainly affected ‘Emotional’; | Depression mainly affected ‘Social’ | ||
Sadjadi et al. [38] | HRQoL SF-36V.1 | US normal population (Z scores) | Reduction of all physical domains Physical Functioning 24.21 ± 19.59, difference relatively to FSHD, MD, CMT1 Role Physical 38.75 ± 41.02, difference relatively to NMD Bodily pain 68.61 ± 27.17 General Health 57.69 ± 20.67, difference relatively to NMD, MD; Vitality score 47.06 ± 21.27 Strong correlation between MMT, timed stand, time walk and ALS-FRS and ‘Physical Functioning’; Moderate correlation between ALS-FRS and ‘Role Physical’ and ‘Vitality’; | No reduction of mental health domains Role-emotional 75.71 ± 37.05 Mental health 78.34 ± 15.68 difference relatively to NMD, CMT1 Moderate correlation between timed walk and ‘Role Emotional’ | Reduction of social domain Social Functioning 66.04 ± 26.85 Moderate correlation between timed walk and ALS-FRS and ‘Social Functioning’; |
Correlation between ALS-FRS and HRQoL | |||||
Mood/depression BDI | Strong correlation between BDI and ‘General Health’, ‘Vitality’; Moderate correlation between BDI and ‘Physical Functioning’, ‘Role Physical’, ‘Bodily Pain’; | Strong correlation between BDI and ‘Mental Health’; Mild correlation between BDI score and ALS-FRS (− 0.32, p < 0.001); Mild correlation between ALS-FRS and BDI (correlation coefficient − 0.32, p < 0.001) | Strong correlation between BDI and ‘Social Functioning’ | ||
Correlation between depression and HRQoL 1–14% of the correlation between disease severity and HRQoL was mediated by depression | |||||
Gibson et al. [35] | Individual semistructured in-depth interviews** | Physical impairments (mobility and walking, fine motor skills, weakness of shoulders and trunk muscles) (+) Mobility and ambulation as great influence (problems with stairs, avoiding stairs, use of mobility aids, getting up from a seated position, falls); (+) Swallowing problems; (+) Disease specific impairments (specific limitations in ADL, gastrointestinal complaints, fatigue, communication problems, pain, sleep disturbances, respiratory impairment, dizziness); (−) Facial weakness (chewing for longer, use of a straw); | (+) Mental impairments; (+) Emotional distress (fear of falling, thoughts about the future); (+) Impaired body image due to decrease of muscles; | (+) Social impairments; (+) Social role dissatisfaction and limitation (reliance on family members, avoidance of social situations); (−) Hand weakness in everyday life (typing, texting, use of a telephone); | |
Ortega et al. [37] | Focus groups interviews** | (−) Changes of quality of life | (−) Individual, need-oriented information from physicians; (−) Discussion with physician of individual patient preferences on therapies (especially medication), self-determined use of medication and endurance of side effects; (−) Future impact of IBM on everyday life and patient-relevant activities; (−) Changes of quality of life | (−) Future impact of IBM on everyday life and patient-relevant activities; | |