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Table 3 Narrative summary of HRQoL findings for IBM patients

From: The health-related quality of life, mental health and mental illnesses of patients with inclusion body myositis (IBM): results of a mixed methods systematic review

Study HRQoL and mental illness assessments Values compared IBM HRQoL dimensions*
Physical Psychological Social
Feldon et al. [34] HRQoL
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
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
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
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
  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
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   
  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;
  1. ANOVA F: analysis of variance, F-statistic; BDI: Beck Depression Inventory; CMT1: Charcot-Marie-Tooth type 1; DM: dermatomyositis; EQ-5D-5L: 5-level EQ-5D version of European quality of life questionnaire; EQ VAS: EQ visual analogue scale, access; FSHD: facioscapulohumeral muscular dystrophy; HADS: Hospital Anxiety and Depression scale; IBM: inclusion body myositis; IIM: idiopathic inflammatory myopathies; INQoL: Individualized Neuromuscular Quality of Life questionnaire [47]; MCS: mental component summary, items of psychological and social health from SF-36 are aggregated to MCS; MD: myotonic dystrophy; PCS: physical component summary; SF-12: 12-Item Short-Form Health Survey SF-36: 36-Item Short-Form Health Survey;
  2. *Data are reported narratively. All values are shown, if data were reported in the included studies. Values are reported as mean ± SD or (range or IQR)
  3. **Statements for which statistically significant data were shown or a “high confidence” was assessed according to CERQual are marked in bolt type. “Moderate”, “low” or “very low” assessed confidence are marked respectively with (+), (−), (−). Shown qualitative findings correspond to the summaries of review findings