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Table 5 Summary of the 32 instruments used to assess carer QoL in DMD from the full-texts meeting the Stage 1 eligibility criteria (n = 31)

From: Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN

Instrument Recall period N subscales (items) Total score
(Y/N)
Dimensions of QoL assessed (sub-domains) Response option type (N options) Origin language (country) Target population Intended context of use
12-Item Short Form Survey (SF-12) [31] Varies by item 2 or 8 (12) N Physical health (Physical functioning, role-physical, bodily pain, general health), Mental health (vitality, social functioning, role-emotional, mental health) Varies by item (varies by item) English (US) Adults (general population) Research
36-Item Short Form Survey (SF-36) [32, 33]a Varies by item 2 or 8 (36) N Physical health (Physical functioning, bodily pain, role limitations due to physical health problems, general health), Mental health (role limitations due to personal or emotional problems, emotional well-being, social functioning, energy/fatigue) Varies by item (varies by item) English (US) Adult patients and general population Research/Clinical
Beck Depression Inventory (BDI) [34]a General/unspecified 0 (21) Y Depression Varies by item (4) English (US) Adult patients Research/Screening
Caregiver Strain Index (CSI) [7] General/unspecified 0 (13) Y Caregiver strain Agreement (2) English (US) Adult carers Research/Screening
Caregiver Strain Index Plus (CSI +) [7] 1 week 0 (18) Y Caregiver strain (including positive aspects of care) Agreement (2) Dutch (Netherlands) Assumed same as CSI Assumed same as CSI
Caregiver Well-being Scale (CWBS) [35] 3 months 2 (45) Yb Caregiver wellbeing (Basic human needs, activities of daily living) Frequency (5) English (US) Adult carers Social work/Practice
Care-related Quality of Life Instrument (CarerQoL) [7] Present 7 (7 + VAS) Y Caregiver burden (fulfillment, relational problems, mental health problems, problems with daily activities, financial problems, support, physical problems) Severity (4) Dutch (Netherlands) (assumed) Informal adult caregivers Economic evaluation
DUKE Health Profile (DUKE) [36,37,38,39,40] Varies by item 11 (17) Y Health status (Physical health, mental health, social health, general health, perceived health, self-esteem, anxiety, depression, anxiety-depression (DUKE-AD), pain, disability) Varies by item (3) English (US) Adult patients Research/Clinical
EQ-5D-3L [7, 31, 41,42,43]a Today 5 (5 + VAS) Y Health status (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) Severity (3) Multiple Adults (general population) Research
EQ-5D-5L [41] Today 5 (5 + VAS) Y Health status (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) Severity (5) English (UK) and Spanish Assumed same as 3L Assumed same as 3L
ENRICHD Social Support Instrument (ESSI) [44] Present 0 (6 + 1) Y Social Support Frequency (5) English (US) Adult patients Screening
Epworth Sleepiness Scale (ESS) [45] Recent times 0 (8) Y Daytime sleepiness Probability (4) English (Australia) Adult patients Unclear
Family APGAR (FAPGAR) [34, 36,37,38,39,40] General/unspecified 0 (5) Y Family member's satisfaction Frequency (3) English (US) Adult patients Screening
Family Problems Questionnaire (FPQ) [46, 47] 2 months 5 (34 + 2) N Objective burden, subjective burden, support received by professionals and from members of social network, relative's positive attitude toward the patient, relative criticism of the patient's behaviour (+ indirect costs, burden on children) Varies by item (4) Italian (Italy) Adult carers Clinical/Screening
Female Sexual Function Index (FSFI) [48] 4 weeks 6 (19) Y Female sexual functioning (desire, arousal, lubrication, orgasm, satisfaction, pain) Varies by item (varies by item) English (US) Adult women Research
Hospital Anxiety and Depression Scale (HADS) [7, 32]a Last week 2 (14) N Anxiety, depression Frequency (4) English (UK) Adult patients Clinical/Screening
Kessler Psychological Distress Scale (K6) [44] 30 days 0 (11) Y Non-specific psychological distress Varies by item (varies by item) English (US) Adults (general population) Research/Screening
PedsQL Family Impact Module (PedsQL FIM) [49, 50] 1 month or 1 week 8 (36) Y Family impact (physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities, family relationships) Frequency (5) English (US) Parents Unclear
Perceived Personal Control Questionnaire (PPC) [51] General/unspecified 0 (5) Y Control Amount (11) English (US) Parents Unclear
Perceived Stress Scale (PSS) [32] 1 month 0 (10) Y Perceived stress Frequency (5) English (US) Adults (general population) Research
Pittsburg Sleep Quality Index (PSQI) [45, 48, 52] 1 month 7 (19) Y Sleep quality (subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medications, daytime dysfunction) Varies by item (varies by item) English (US) Adult patients Research/Clinical
Psychological Adaptation Scale (PAS) [51] General/unspecified 4 (20) Y Adaptation (coping efficacy, self-esteem, social integration, spiritual well-being) Severity (5) English (US) Adult patients and carers Research/Clinical
Questionnaire on Resources and Stress (QRS) [53, 54] General/unspecified 15 (285) Yb Burden (Poor health/mood, excess time demands, negative attitude toward index case, overprotection/dependency, lack of social support, overcommitment/martyrdom, pessimism, lack of family integration, limits on family opportunity, financial problems, physical incapacitation, lack of activities for index case, occupational limitations for index case, social obtrusiveness, difficult personality characteristics) Agreement (2) English (US) Adult carers Research/Clinical
Satisfaction with Life Scale (SWLS) [54]a General/unspecified 0 (5) Y Life satisfaction Agreement (3) English (UK) Unclear Unclear
Social Networks Questionnaire (SNQ) [46, 47] Varies by item 4 (15) N Quality/frequency of social contacts, practical social support, emotional support, presence/quality of an intimate supportive relationship Varies by item (varies by item) Multiple language versions Adult carers Unclear
State-Trait Anxiety Inventory (form X) (STAI-X) [55] Present (state); General (trait) 2 (40) N State anxiety, Trait anxiety Severity (state); Frequency (trait) (4) English (US) Adults (general population) Research/Clinical
Symptom Checklist 90-Revised (SCL-90-R) [56] 1 week 9 or 3 global indices (90) Y Global severity (somatization, obsessive–compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, psychoticism) Severity (5) English (US) Adult and adolescent patients Research/Clinical
WHO Quality of Life-BREF (WHOQOL-BREF) [34, 57, 58]a 2 weeks 4 (26) Yb Quality of life (Physical health, psychological, social relationships, environment) Varies by item (4) Multiple Adult patients, carers, and general population Research/Clinical
Worry about Care for Child with DBMD (WAC-DBMD) [51] Varies by item 0 (3) Y Worry Severity (5) English (US) Parents Unclear
Zarit Burden Inventory (ZBI) 4-item [44] General/unspecified 0 (4) Y Caregiver burden Frequency (5) English (US) Adult carers Research/Screening
Zarit Burden Inventory (ZBI) 12 item [51] General/unspecified 0 (12) Y Caregiver burden Frequency (5) English (US) Adult carers Research
Zarit Burden Inventory (ZBI) 22 item [31, 41, 42, 58,59,60] General/unspecified 0 (22) Y Caregiver burden Frequency (5) English (US) Adult carers Unclear
  1. Citations included next to instrument name are the studies included in the review where that questionnaire has been used in DMD carers
  2. aInformation already extracted and adapted from Powell et al. [20]
  3. bTotal score not specified by developers, but total score used in an identified DMD carer study