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Table 3 Outcome measures for psychosocial wellbeing used in the included studies

From: Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review

Name of outcome measure

Purpose

Age group

Domains

Scoring

Cited in

Patient-Reported Outcomes Measurement Information System (PROMIS) 57 v2 profile

Evaluation of mental and physical health

Adults (> 18 years old)

Anxiety, depression, fatigue, pain interference, physical function, sleep disturbance, and ability to participate in social roles and activities as well as a single pain intensity item

The mean (T = 50) plus or minus one standard deviation (SD) is considered average (T = 40 to 60)

Altiok et al. [36]

PROMIS general health

Overall evaluation of one's physical and mental health

Adults (> 18 years old)

Physical and mental health

The mean (T = 50) plus or minus one standard deviation (SD) is considered average (T = 40 to 60)

Altiok et al. [36]

PROMIS pediatric

Evaluation of mental and physical health

Children (5–17 years old)

Depression, anxiety, peer relations

The mean (T = 50) plus or minus one standard deviation (SD) is considered average (T = 40 to 60)

Wall et al. [30]

Satisfaction with Life Scale (SWLS)

Measure of the judgmental component of subjective well-being

Adults (> 18 years old)

Satisfaction with life

7 point likert scale

31–35 Extremely satisfied

26–30 Satisfied

21–25 Slightly satisfied

20 Neutral

15–19 Slightly dissatisfied

10–14 Dissatisfied

5–9 Extremely dissatisfied

Altiok et al. [36]

Pediatric Outcomes Data Collection Instrument (PODCI)

To assess changes following pediatric orthopedic interventions for a broad range of diagnoses, with a focus on function and quality of life in children and adolescents

Children (2–18 years old)

1. Upper Extremity and Physical Function

2. Transfers and Basic Mobility

3. Sports and Physical Functioning

4. Pain/Comfort

5. Happiness with physical condition

6. Global Functioning

0–100 (better score = better health)

Amor et al. [5], Cao et al. [27], Church et al. [28], Spencer et al. [7], Wall et al. [29, 30]

Hospital Anxiety and Depression Scale (HADS)

Understand the experience of suffering in the setting of medical practice

Adults (> 18 years old)

Anxiety and depression

0–3 (lower = better), a score for each domain over than 11 indicates anxiety or depression

Dai et al. [37]

Child Health Questionnaire—Parent Form 50 (CHQ-PF50)

To assess health related quality of life for pediatric patients ages 5–12

Children (5–18 years old)

1. Physical Functioning

2. Role/social limitations

3. General Health perceptions

4. Bodily pain/discomfort

5. Family activity

6. Role/Social Limitations

7. Parent impact

8. Self-esteem

9. Mental Health

10. Behavior

11. Family Cohesion

12. Change in health

0–100 (higher score = better functioning)

Eriksson et al. [31]

Oswestry Disability Index (ODI)

Subjective percentage score of level of function (disability) in activities of daily living in those rehabilitating from low back pain

Adults (> 18 years old)

Pain intensity,

Personal care

Lifting

Walking

Sitting

Standing

Sleeping

Sex life

Social life

Travelling

0–5 scale (lower = better)

then percentage calculated based on number of answers

0–20%: minimal disability

21–40%: moderate disability

41–60%: severe disability

61–80%: crippling back pain

81–100%: bed bound or exaggerating

Jones et al. [33]

Euroquol five dimensions questionnaire:

Adults version EQ-5D

Youth version: EQ-5D-Y

To assess health relative quality of life. EQ-5D-Y

EQ-5D: > 18 years

EQ-5D-Y: 4–18 years old

1. Mobility

2. Looking after myself

3. Doing usual activities

4. Having pain or discomfort

5. Feeling worried, sad or unhappy

Five levels of perceive problem for each domain: No problem, slight problem, moderate problem, severe problem, unable to extreme problem

Eriksson et al. [31], Jones et al. [33]

Medical outcome study short form 36 (SF-36)

A measure of health status

Adults (> 18 years old)

1. physical function

2. Role/physical

3. Role/emotional

4. Energy/fatigue

5. Emotional wellbeing

6. Social functioning

7. Pain

8. General health

0–100 (lower = better)

Jones et al., [33], Nouraei et al. [34], Sawatsky et al. [35]