Background
Formation of the conceptual framework for ASCQ-Me
Grounded item technique (GIT)
Methods
Participants
Measures
Topic | Example question |
---|---|
Cognitive Impact | In the past 7 days, how often did you have trouble remembering things people had just told you? |
Emotional Impact | In the past 7 days, how often were you very worried about needing to go to the hospital? |
Physical Impact | In the past 7 days, how often were your joints very stiff during the day? |
Social Impact | In the past 30 days, how much did your health make it hard for you to do things with your friends? |
Pain Episodes | Using any number from 0 to 10, where 0 is no pain and 10 is the worst imaginable pain, how severe was your pain during your last pain attack (crisis)? |
Data collection procedure
Analytic methods
Factor analysis
Multi-trait scaling analysis
Evaluation of unidimensionality
Item-level measurement bias
IRT calibration
Validity
Results
Respondent characteristics
Characteristic | Percent of respondents |
---|---|
Age
| |
18 to 24 | 29% |
25 to 34 | 33% |
35 to 44 | 20% |
45 to 54 | 11% |
55 to 64 | 6% |
65 to 74 | 1% |
Gender
| |
Male | 36% |
Female | 64% |
SCD Type
| |
Sickle Cell Anemia (SS) | 64% |
Sickle Hemoglobin C Disease (SC) | 21% |
Sickle Beta-Thalassemia Disease (Beta) | 10% |
Unspecified Sickle Cell Disease (Other) | 5% |
How much did your last pain attack (crisis) interfere with your life?
| |
I've never had a pain attack (crisis) | 2% |
Not at all, I did everything I usually do | 10% |
I had to cut down on some things I usually do | 21% |
I could not do most things I usually do | 30% |
I could not take care of myself…needed some help… | 18% |
I could not take care of myself and needed constant care… | 19% |
About how long did your most recent pain attack (crisis) last?
| |
I've never had a pain attack (crisis) | 2% |
Less than 1 hour | 4% |
1 - 12 hours | 18% |
13 - 24 hours | 8% |
1 - 3 days | 22% |
4 - 7 days | 25% |
1 - 2 weeks | 14% |
More than 2 weeks | 7% |
Patient rating of severity of pain in last attack (0 to 10)
| |
Mean | 7.76 |
Standard Deviation | 2.27 |
Data quality
Evaluation variables | F-Stat | |
---|---|---|
SCD-MHC
ǂ
|
Non-SCD-MHC
¥
| |
What is your age? | 47.07*** | 00.17 |
Past 12 mos, how many times did you go to the ED because of a pain attack (crisis)? | 12.03*** | 03.00 |
Severity of Vaso-Occlusive Events
| 04.3* | 00.80 |
Past 12 mos, how many sickle cell pain attacks (crises) did you have? | 03.57 | 06.35** |
When was your last pain attack (crisis)? | 05.96* | 00.27 |
Rate severity of pain in last attack | 12.54*** | 00.03 |
How much did your last pain attack (crisis) interfere with your life? | 13.24*** | 00.03 |
About how long did your most recent pain attack (crisis) last? | 36.37*** | 03.10 |
PROMIS Globals
| 31.99*** | 02.29 |
In general, would you say your health is: | 32.13*** | 02.29 |
In general, would you say your quality of life is: | 10.22** | 07.36** |
In general, how would you rate your physical health? | 10.64*** | 06.64** |
In general, how would you rate your mental health, including your mood and your ability to think? | 27.79*** | 18.82*** |
…, how would you rate your satisfaction with your social activities and relationships? | 31.91*** | 07.80** |
To what extent are you able to carry out your everyday physical activities? | 6.59** | 04.56* |
Past 7 days, how would you rate your pain on average? | 31.63*** | 00.61 |
Past 7 days, how would you rate your fatigue on average? | 03.07 | 10.13** |
Past 7 days, please rate how well you carry out your usual social activities and roles | 47.07*** | 00.17 |
Past 7 days, how often … bothered by emotional problems such as…? | 12.03*** | 03.00 |
Item bank construction
Unidimensionality
Cause for elimination | ||||||
---|---|---|---|---|---|---|
Question set | Original # of items | Item-total correlation < 0.40 | Simple structure violation | Local dependence | DIF | Final # of items |
Cognitive | 28 | 5 | 3 | 5 | 0 | 15 |
Emotional | 28 | 5 | 1 | 0 | 2 | 20 |
Pain | 17 | 0 | 0 | 4 | 0 | 13 |
Sleep | 20 | 2 | 0 | 4 | 2 | 12 |
Social | 28 | 3 | 1 | 3 | 4 | 17 |
Stiffness | 19 | 0 | 1 | 2 | 1 | 15 |
DIF
Question set | Gender bias | Age bias |
---|---|---|
Emotional
| … feel very good about your health? | |
… feel very hopeful about your health? | ||
Sleep
| … if you woke… how easy ….to fall back asleep? | |
… how easy …to fall asleep? | ||
Social
| …your family…worried about your health? | |
…health make it hard for you to go places? | ||
…have to change the plans because of your health? | …have to change the plans because of your health? | |
Stiffness
| … impossible for you to move…legs or arms |
Reliability
Question sets | Score range at < 0.33 SE§ | Internal consistency reliability | Model fitψ | Corr. between models* | Relat. to SCD severity (F-stat**) | |
---|---|---|---|---|---|---|
CFI¥ | RMSEAǂ | |||||
Cognitive Impact
| 3.7 | 0.95 | 0.95 | 0.10 | 0.96 | 02.92 |
Emotional Impact
| 4.1 | 0.96 | 0.93 | 0.09 | 0.97 | 16.56 |
Pain
| 4.0 | 0.95 | 0.94 | 0.09 | 0.96 | 31.67 |
Sleep Impact
| 4.1 | 0.92 | 0.98 | 0.08 | 0.96 | 12.13 |
Social Impact
| 4.8 | 0.95 | 0.95 | 0.10 | 0.96 | 20.51 |
Stiffness
| 4.4 | 0.95 | 0.94 | 0.11 | 0.96 | 38.72 |