Table 1: Details of Included Studies.
| Author & publication year, study design, and total sample size (evaluated for QoL/enrolled) | Purpose of the study | Intervention (evaluated/ enrolled) | Control (evaluated/ enrolled) | Outcome measures (QoL measure in bold) | Overall study results | QoL results |
| Drory, et al., 2001 Randomized Controlled Trial; N = 14/25 (males) Moderate Daily Exercise (DE) vs. No exercise or Physical Activity other than daily life activities (PA) | To determine the effect moderate exercise under professional guidance have on motor deficit, disability, fatigue, MSK pain and QoL | Daily exercise N = 8/14 (males) | Daily activities N = 6/11 (males) | MMT, Ashworth spasticity scale, ALSFRS, FSS, VAS, SF-36 | QoL deteriorated slightly with a non-significant trend towards the control group |
Mean at baseline: PA - 84.1 DE - 82.9 Mean at 3 months: PA - 83.0 DE - 80.4 Mean at 6 months: PA - 81.2 DE - 72.7 |
| Dal Bello-Haas, et al., 2007 Randomized Control Trial; N = 27 Resistance exercise (RE) vs. Stretching Exercise (SE) | To determine the effects of resistance exercise on function, fatigue, and QoL | Resistance exercise = 13 | Stretching group = 14 | ALSFRS, FSS, SF-36, Muscle strength (MVIC) | No adverse effects occurred with relation to intervention and decline in leg strength was lower in resistance exercise group |
3 months: No difference between groups (SE and RE) 6 months: RE significantly higher than SE t = 2.58 df = 16 p = 0.02 |
| Creemers, et al., 2013 Cluster Randomized Controlled Trial; N = 298 Multidisciplinary ALS Care with Case management (MDC+CS) vs. Usual Multidisciplinary ALS Care (MDC) | To determine the effect of case management on QoL, caregiver strain, and perceived quality of care (QOC) in patients with ALS and their carers | Case management and usual care ALS patients N = 71, Caregivers N = 66) | Usual care ALS patients N = 61, Caregivers N = 60) | ALSFRS-R, ALSAQ-40, CSI, QOC | Introducing case management for people with ALS showed no benefit in QoL scores. |
Mean (SD), n (Emotional Functioning)- Baseline MDC + CS: 21.3 (18.2), 70 Baseline MDC: 19.4 (17.0), 61 p-value: 0.524 4 months MDC + CS: 19.8 (14.6), 43 4 months MDC: 19.4 (16.6), 39 p-value: 0.35 8 months MDC + CS: 21.5 (13.5), 28 8 months MDC: 20.0 (16.1), 22 p-value: 0.33 12 months MDC + CS: 22.8 (16.4), 30 12 months MDC: 19.1 (14.7), 27 p-value: 0.68 |
| Jensen, et al., 2005 Survey study N = 193 ALS = 30 Physiotherapy consisting of a variety of interventions (e.g. passive range of motion and stretching, massage, specific muscle strengthening exercises) | To examine the nature and scope of pain in persons with Neuromuscular Disorder (NMD) | (not applicable) | No comparison group | Neuropathic Pain Scale (NPS), Brief Pain Inventory (BPI), SF-36 | Pain appeared to be particularly severe in people with ALS affecting their QoL significantly. However, no response from contacted author regarding ALS - specific data |
Physical Functioning Scale (Past 3 months - one time measure): Physical functioning- 50.41 (15.98) Role functioning-physical- 62.28 (17.77) General health perception- 58.76 (20.37) Body pain- 51.50 (15.74) Mental Health (Past 3 months - one time measure): Vitality- 47.95 (17.10) Social functioning- 67.12 (20.93) Role functional-emotional- 79.01 (21.44) Mental health- 73.23 (14.94) |
| Korner, et al., 2013 Cohort study; N = 38 (26 females, 12 males) Speech therapy and communication devices | To investigate and compare the impact speech therapy and communication devices have on QoL and mood in ALS patients | Speech therapy with communication device(s) N = 4/16 (males) | Speech therapy only N = 8/22 (males) | Beck Depression Inventory (BDI), SF-36, ALSFRS-R | Patients described a high impact of the communication device on QoL yet the impact of speech therapy was rated lower. Additionally, multiple regression analysis confirmed that an independent positive effect of communication device use on depression and mental QoL. Time point not mentioned, however data |
Speech therapy only (S); Speech therapy + Additional communication device (S+C)
Physical functioning scale: Physical functioning- S: 33.18 S + C: 35.38 Role functioning-physical- S: 31.26 S + C: 28.97 General health perception- 34.84 Body pain- 70.24 Mental Health: Vitality- 38.99 Social functioning- 51.90 Role functional-emotional- 47.51 Mental health- 57.28 General health perception- 41.31 Body pain- 63.00 Mental health: Vitality- 33.21 Social functioning- 51.85 Role functional-emotional- 41.39 Mental health- 54.98 |
| Van den Berg, et al., 2005 Cross-sectional study N = 208 Multidisciplinary ALS care vs. Non- specialized general ALS care | To examine the effect of Multidisciplinary Care (MDC) on QoL in ALS patients and their carers | Multidisciplinary ALS care N = 133 | General ALS care N = 75 | SF-36, VAS | Providing people with ALS a high standard of care improves their mental-QoL. |
Adjusted difference, 95% CI, p-value Physical functioning scale (data collected once, time point not mentioned): Physical summary scale - (-1.22), -4.2 to 1.7, 0.42 Physical functioning - (-0.63), -8.6 to 7.4, 0.88 Role functioning - physical - (-1.1), -11.5 to 9.3, 0.83 General health perception - (0.94), -5.2 to 7.0, 0.76 Body pain - (-2.49), -10.9 to 5.9, 0.56 Mental health (data collected once, time point not mentioned): Mental summary scale - (4.28), 1.2 to 7.4, 0.01 Vitality- (4.02), -2.2 to 10.3, 0.21 Social functioning - (15.0), 6.8 to 23.3, < 0.001 Role functional-emotional - (5.1), -7.7 to 18.0, 0.43 Mental health (4.5), -0.2 to 9.2, 0.06 |
Abbreviations: MMT: Manual Muscle Testing; ALSFRS: Amyotrophic Lateral Sclerosis Functional Rating Scale; FSS: Fatigue Severity Scale; VAS: Visual Analogue Scale; SF-36: Short Form-36; Muscle strength MVIC: Maximum Voluntary Isometric Contraction; ALSAQ-40: Amyotrophic Lateral Sclerosis Assessment Questionnaire-40; CSI: Caregiver Strain Index; QOC: Quality of Care; NPS: Neuropathic Pain Scale; BPI: Brief Pain Inventory; BDI: Beck Depression Inventory; MDC: Multi-Disciplinary Care; CM: Case Management; RE: Resistance Exercise; SE: Stretching Exercise; DE: Moderate Daily Exercise (DE); PA: no exercise or physical activity other than daily life activities.