Table 2 Outcome measures and instrumentation

Quality of life

ALS Assessment Questionnaire (ALSAQ-40) [40]

X

X

X

X

Short Form 36 (SF-36) [41]

X

X

X

X

ICF: Activities / participation

Self-reported physical activity

LASA Physical Activity Questionnaire (LAPAQ) [42]

X

X

X

X

Limitations in participation and autonomy

The Impact on Participation and Autonomy questionnaire (IPA) [48]

X

X

X

X

Self-perceived functional status

Sickness Impact Profile 68 (SIP 68; domains: mobility control, mobility range, social behaviour) [44]

X

X

X

X

Secondary outcome measures

ICF: Body functions

ALS disease severity

ALS Functional Rating Scale Revised (ALSFRS-R) [45]

X

X

X

X

Survival

Survival in months post diagnosis

X

X

X

X

Cardio-respiratory fitness

Submaximal exercise test with cycle ergometer [49]

X

X

X

X

Functional capacity

Stairs test [50]

X

X

X

X

Timed Up and Go (TUG) test [51]

X

X

X

X

Muscle strength

MicroFET handheld dynamometer

X

X

X

X

Jamar handheld dynamometer

X

X

X

X

Lung function

Spirometry: forced vital capacity (FVC) [52]

X

X

X

X

Sniff nasal inspiratory pressure (SNIP) [53]

X

X

X

X

Fatigue

Checklist Individual Strength (CIS; domain: fatigue) [54]

X

X

X

X

Sleep disturbances

Nottingham Health Profile (NHP; sleep dimension) [55]

X

X

X

X

Pain

Visual analogue scale, pain (VAS-pain)

X

X

X

X

Co-morbidity

Cumulative Illness Rating Scale (CIRS) [56]

X

Blood pressure

X

X

X

X

Height / Weight

X

X

X

X

Skinfold

X

X

X

X

ICF: Personal Factors

Illness cognitions

Ziekte Cognitie Lijst (ZCL) [57]

X

X

X

X

Coping

Coping Inventory for Stressful Situations (CISS-21) [58]

X

X

X

X

General self-efficacy

General Self-Efficacy Scale (ALCOS-16) [59]

X

Personality

Eysenck Personality Questionnaire (EPQ-RSS) [60]

X

Mood

Hospital Anxiety and Depression Scale (HADS) [32]

X

X

X

X

Profile of Mood States (POMS) [61]

X

X

X

X

Impact of events

Schokverwerkingslijst (SVL) [62]

X

X

X

X

ICF: Environmental factors

Social support

Social Support List - Discrepancies (SSL-D-12) [63]

X

X

X

X

Quality of life (partner)

Short Form 36 (SF-36) [41]

X

X

X

X

Coping (partner)

Coping Inventory for Stressful Situations (CISS-21) [58]

X

X

X

X

Mood (partner)

Hospital Anxiety and Depression Scale (HADS) [32]

X

X

X

X

Profile of Mood States (POMS) [61]

X

X

X

X

Caregiver strain (partner)

Caregiver Strain Index (CSI) [46]

X

X

X

X

Other factors

T0

T1

T2

T3

Demographic variables (age, gender, ethnicity, marital status, children, education, work, religion, participation in other study) of patient and partner

X