Plain English summary
Introduction
Methods
Participants
Amazon’s mechanical turk (MTurk) development sample
Characteristic | Development sample | Preference sample |
---|---|---|
Age (median, IQR) | 37 (31, 47) | 37 (31, 44) |
N (%) | N (%) | |
Race | ||
White | 4699 (82.3) | 96 (82.8) |
Black or African American | 660 (11.6) | 13 (11.2) |
Asian or Asian American | 409 (7.2) | 4 (4.5) |
White; Asian | 0 (0.0) | 1 (0.9) |
White Black or African American | 0 (0.0) | 1 (0.9) |
Native Hawaiian or Pacific Islander | 36 (0.6) | 1 (0.9) |
Native American | 39 (0.7) | 0 (0.0) |
Other races | 44 (0.8) | 0 (0.0) |
Multiracial | 151 (2.7) | 0 (0.0) |
Ethnicity | ||
Non-Hispanic | 4902 (85.8) | 112 (94.9) |
Hispanic | 812 (14.2) | 6 (5.1) |
Sex | ||
Female | 2617 (45.8) | 42 (35.9) |
Male | 3047 (53.3) | 74 (63.3) |
Transgender | 28 (0.5) | 1 (0.9) |
Do not identify as female, male, or transgender | 23 (0.4) | 0 (0.0) |
Education | ||
Bachelor’s degree or higher | 3831 (67.3) | NA |
Chronic conditions | ||
Hypertension | 1578 (27.3) | 27 (23.1) |
High cholesterol | 1160 (20.1) | 12 (10.3) |
Coronary heart disease | 300 (5.2) | 5 (4.3) |
Angina, also called angina pectoris | 281 (4.9) | 1 (0.9) |
Heart attack | 264 (4.6) | 0 (0.0) |
Stroke | 254 (4.4) | 4 (3.5) |
Asthma | 889 (15.4) | 5 (4.4) |
Cancer or a malignancy of any kind | 295 (5.1) | 8 (6.9) |
Diabetes | 678 (9.1) | 10 (8.7) |
Chronic obstructive pulmonary disease, COPD, emphysema, or chronic bronchitis | 293 (5.1) | 3 (2.6) |
Some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia | 728 (12.6) | 11 (9.4) |
Any type of anxiety disorder | 1618 (28.1) | 24 (20.5) |
Any type of depression | 2005 (34.7) | 29 (24.8) |
Chronic or seasonal allergies or sinus trouble | 2112 (36.6) | 31 (26.7) |
Back pain | 2307 (40.0) | 29 (25.0) |
Sciatica or radiating leg pain | 808 (14.0) | 11 (9.5) |
Neck pain | 1393 (24.2) | 21 (18.1) |
Trouble seeing, even when wearing glasses or contact lenses | 817 (14.2) | 6 (5.1) |
Dermatitis or other chronic skin rash | 637 (11.1) | 11 (9.4) |
Stomach trouble | 1204 (20.9) | 13 (11.1) |
Trouble hearing, including deafness, in one or both ears | 442 (7.7) | 4 (3.4) |
Trouble sleeping | 2054 (35.6) | 21 (18.3) |
Last saw a doctor or other health professional about your health | ||
Within the past year | NA | 58 (49.2) |
How many times to a hospital emergency room during the last 12 months? | ||
≥ 1 | NA | 30 (25.4) |
During the past 12 months, have you been hospitalized overnight? | ||
Yes | NA | 19 (16.1) |
MTurk preference sample
Stakeholder panel
Measures
Participant demographics
Candidate items for the short PROMIS profile
Domain (abbreviation) | # of items | PROMIS-29 + 2 | PROPr-14 | UPMC16 | SIGNAL |
---|---|---|---|---|---|
Physical function (PF) | 8 | x | x | x | |
Ability to participate in social roles and activities (SOC) | 6 | x | x | x | x |
Anxiety (ANX) | 4 | x | x | ||
Depression (DEP) | 6 | x | x | x | x |
Sleep disturbance (SLP) | 8 | x | x | x | x |
Pain interference (PI) | 6 | x | x | x | x |
Cognitive function (CF) | 5 | x | x | x | x |
Fatigue (FTG) | 7 | x | x | x | x |
Item pair preference questions
Approach
Results
Phase 1
Domain | N pairs | Mean T-score | Correlations among items in each domain | Correlations with gold standard | Mean difference from gold standard (Cohen’s d) | ||||
---|---|---|---|---|---|---|---|---|---|
Average | Range | Average | Range | Average | Range | Average | Range | ||
Physical function | 28 | 49.4 | 47.6–51.7 | 0.57 | 0.28–0.71 | 0.87 | 0.69–0.96 | 0.05 | − 0.17–0.33 |
Ability to participate in social roles and activities | 15 | 52.6 | 51.7–53.3 | 0.74 | 0.68–0.79 | 0.94 | 0.89–0.97 | − 0.06 | − 0.16–0.01 |
Anxiety | 6 | 53.9 | 52.9–54.8 | 0.70 | 0.67–0.77 | 0.95 | 0.94–0.96 | − 0.04 | − 0.15–0.06 |
Depression | 15 | 52.6 | 51.6–53.8 | 0.71 | 0.63–0.79 | 0.92 | 0.83–0.97 | − 0.05 | − 0.14–0.07 |
Sleep disturbance | 28 | 49.6 | 48.8–50.4 | 0.52 | 0.29–0.78 | 0.85 | 0.66–0.97 | 0.01 | − 0.08–0.10 |
Pain interference | 15 | 51.3 | 50.4–52.1 | 0.76 | 0.70–0.83 | 0.94 | 0.86–0.98 | − 0.02 | − 0.12–0.07 |
Cognitive function; abilities | 10 | 50.6 | 49.5–52.1 | 0.56 | 0.44–0.64 | 0.91 | 0.82–0.94 | − 0.03 | − 0.16–0.13 |
Fatigue | 21 | 49.6 | 47.9–51.3 | 0.68 | 0.46–0.81 | 0.92 | 0.82–0.97 | − 0.03 | − 0.20–0.15 |
Phase 2
Phase 3
Domain | Rated pairs | Selected pair | Stakeholders* | MTurk sample |
---|---|---|---|---|
Physical function | PF_23, PF_56 | PF_23 | 5/9 | 83% |
Ability to participate in social roles | SOC_16, SOC_46 | SOC_46 | 5/9 | 56% |
Anxiety | ANX_23, ANX_24 | ANX_23 | 5/9 | 61% |
Depression | DEP_34, DEP_35 | DEP_34 | 5/9 | 51% |
Sleep disturbance | NA | SLP_56 | NA | NA |
Pain interference | PI_12, PI_13 | PI_13 | 6/9 | 58% |
Cognitive function - abilities | CF_15, CF_25 | CF_25 | 7/9 | 56% |
Fatigue | NA | FTG_12 | NA | NA |
PROMIS-16: item content and psychometric properties of HRQOL domain scores
Domain | Mean (SD) T-score | Correlation between items (95% CI) | Correlation with gold standard (95% CI) | Mean difference from gold standard (Cohen’s d; 95% CI) |
---|---|---|---|---|
Physical function | 49.9 (7.6) | 0.71 (0.69, 0.72) | 0.92 (0.91, 0.92) | 0.11 (0.08, 0.13) |
Ability to participate in social roles and activities | 51.9 (9.2) | 0.72 (0.71, 0.73) | 0.93 (0.93, 0.93) | − 0.14 (− 0.17, − 0.12) |
Anxiety | 54.8 (9.6) | 0.77 (0.75, 0.78) | 0.94 (0.93, 0.94) | 0.06 (0.03, 0.09) |
Depression | 53.0 (9.8) | 0.75 (0.74, 0.77) | 0.97 (0.97, 0.97) | 0.00 (− 0.03, 0.02) |
Sleep disturbance | 49.6 (8.4) | 0.64 (0.62, 0.65) | 0.80 (0.79, 0.81) | 0.01 (− 0.01, 0.04) |
Pain interference | 52.0 (8.7) | 0.77 (0.75, 0.78) | 0.98 (0.98, 0.98) | 0.06 (0.04, 0.09) |
Cognitive function—abilities | 49.5 (8.5) | 0.50 (0.48, 0.52) | 0.93 (0.92, 0.93) | − 0.16 (− 0.18, − 0.13) |
Fatigue | 49.3 (9.6) | 0.70 (0.69, 0.71) | 0.96 (0.96, 0.97) | − 0.06 (− 0.09, − 0.04) |
PF | SOC | ANX | DEP | SLP | PI | CF | FTG | |
---|---|---|---|---|---|---|---|---|
PF | 0.54 | − 0.38 | − 0.37 | − 0.35 | − 0.63 | 0.33 | − 0.42 | |
SOC | 0.64 | − 0.64 | − 0.63 | − 0.59 | − 0.67 | 0.48 | − 0.65 | |
ANX | − 0.43 | − 0.66 | 0.77 | 0.56 | 0.50 | − 0.48 | 0.65 | |
DEP | − 0.43 | − 0.66 | 0.82 | 0.58 | 0.47 | − 0.45 | 0.69 | |
SLP | − 0.30 | − 0.49 | 0.52 | 0.53 | 0.49 | − 0.38 | 0.64 | |
PI | − 0.72 | − 0.71 | 0.51 | 0.50 | 0.37 | − 0.38 | 0.51 | |
CF | 0.33 | 0.39 | − 0.37 | − 0.37 | − 0.31 | − 0.31 | − 0.41 | |
FTG | − 0.47 | − 0.68 | 0.70 | 0.71 | 0.61 | 0.54 | − 0.30 |
Without any difficulty | With a little difficulty | With some difficulty | With much difficulty | Unable to do | |
---|---|---|---|---|---|
Physical function | |||||
Are you able to go up and down stairs at a normal pace?… | 3524 (61) | 1255 (22) | 712 (12) | 217 (4) | 66 (1) |
Are you able to go for a walk of at least 15 min? | 4014 (70) | 946 (16) | 529 (9) | 201 (4) | 79 (1) |
Ability to participate in social roles and activities | Never | Rarely | Sometimes | Usually | Always |
---|---|---|---|---|---|
I have trouble taking care of my regular personal responsibilities… | 2409 (42) | 1326 (23) | 1301 (23) | 515 (9) | 187 (3) |
I have trouble doing all of the activities with friends that I want to do… | 2568 (45) | 1330 (23) | 1250 (22) | 445 (8) | 143 (3) |
Anxiety (In the past 7 days…) | Never | Rarely | Sometimes | Usually | Always |
---|---|---|---|---|---|
I found it hard to focus on anything other than my anxiety… | 2499 (43) | 1444 (25) | 1304 (23) | 430 (8) | 92 (2) |
My worries overwhelmed me… | 2294 (40) | 1441 (25) | 1338 (23) | 534 (9) | 164 (3) |
Depression (In the past 7 days…) | |||||
I felt depressed… | 2203 (38) | 1318 (23) | 1371 (24) | 641 (11) | 236 (4) |
I felt hopeless… | 2805 (49) | 1146 (20) | 1170 (20) | 479 (8) | 167 (3) |
Sleep disturbance (In the past 7 days…) | |||||
I had trouble sleeping… | 1593 (28) | 1496 (26) | 1625 (28) | 750 (13) | 285 (5) |
Not at all | A little bit | Somewhat | Quite a bit | Very much | |
---|---|---|---|---|---|
I had problems during the day because of poor sleep… | 2141 (37) | 1746 (30) | 1184 (21) | 494 (9) | 183 (3) |
Pain interference (In the past 7 days…) | |||||
How much did pain interfere with your day-to-day activities?…. | 2582 (45) | 1613 (28) | 978 (17) | 429 (8) | 134 (2) |
How much did pain interfere with your ability to participate in social activities?…. | 3134 (55) | 1188 (21) | 836 (15) | 413 (7) | 160 (3) |
Cognitive function (In the past 7 days…) | |||||
I have been able to remember to do things, like take medicine or buy something I need… | 377 (7) | 627 (11) | 1030 (18) | 1460 (26) | 2230 (39) |
I have been able to think clearly without extra effort…… | 251 (4) | 802 (14) | 1182 (21) | 1584 (28) | 1893 (33) |
Fatigue (In the past 7 days…) | |||||
I feel fatigued… | 1421 (25) | 2023 (35) | 1339 (23) | 728 (13) | 261 (5) |
I have trouble starting things because I am tired … | 1977 (34) | 1828 (32) | 1127 (20) | 594 (10) | 241 (4) |