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)
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 |
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 |
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 | |
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 |
General/unspecified | 0 (5) | Y | Family member's satisfaction | Frequency (3) | English (US) | Adult patients | Screening | |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
General/unspecified | 0 (22) | Y | Caregiver burden | Frequency (5) | English (US) | Adult carers | Unclear |