Table 3 Survey scales, Questionnaires or Instruments Used across Studies

Pediatric Quality of Life Inventory (PedsQL) neuromuscular module version 3.0 online [2, 8, 17, 19, 39, 41, 44, 60, 61]

9

SF-36 Health Survey [11, 28, 43, 54, 55, 62]

6

World Health Organization Quality of Life (WHOQoL) Scale [28, 43, 46, 54, 62]

5

KIDSCREEN questionnaire (child and adolescent version and parent version) [42, 63]

2

EuroQol (EQ-5D 3 L) [20] (EQ-5D 5 L) [56]

2

Zarit Caregiver Burden Interview (ZBI) [20, 46]

2

Pittsburgh Sleep Quality questionnaire (PSQI) [17, 64]

2

Children’s Assessment of Participation and Enjoyment (CAPE) [2, 65]

2

Child Health Questionnaire parent form (CHQ-PF50) [7, 66]

2

Health Utilities Index Questionnaire (HUI) [39]

1

SF-12 Health Survey [20]

1

Fatigue Severity Scale [43]

1

Hospital Anxiety and Depression Scale (HADS) [43]

1

Barthel Index (BI) [45]

1

Family Problems Questionnaire (FPQ) [45]

1

Muscular Dystrophy Care Schedule (MD-CS) [45]

1

Female Sexual Function Index (FSFI) [64]

1

Sleep Disturbance Scale for Children (SDSC) [68]

1

Caregiver Strain Index (CSI) [36]

1

Self-Rated Burden (SRB) [36]

1

Care-related Quality of Life instrument (CarerQol) [36]

1

Family Strain Questionnaire [7]

1

Family Burden Assessment Scale [33]

1

COPE Inventory (60-item) [33]

1

Caregiver Well-Being Scale [33]

1

Quality of Life in Neuromuscular Disease (QoL-NMD) [37]

1

DISABKIDS Questionnaire for 10–16 years [55]

1

Depressionsiventar fur Kinder und Jugendliche (DIKJ) [55]

1

Beck Depression Inventory (BDI) [55]

1

CARE-NMD questionnaire [62]

1

State-Trait Anxiety Inventory (STAI) [17]

1

validated pediatric QOL survey (Still in progress) [67]

1

Modified Brooks Scale (MBS) [67]

1

Life Satisfaction Index for Adolescents (LSI-A) [11]

1

Quality of Life Evaluation Scale (AUQUEI) [11]

1

Activity Limitations (ACTIVLIM) [65]

1