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Study Detail

Study ID 1030
Name Adult Sickle Cell Quality of Life Measurement Information System Field Test
Contact Email sankeller@air.org
Acronym ASCQ-Me
Period 2016
Design Field Test
Study PI San Keller
Institution American Institutes of Research
URL https://dataverse.harvard.edu/dataset.xhtml?persistentId=doi:10.7910/DVN/8OFSL3
CTGovID NA
Funding Agency NHLBI
Grant Number HHSN-268-2005-74264C
Overview ASCQ-MeSM (Adult Sickle Cell Quality of Life Measurement Information System) is a patient-reported outcome measurement system that evaluates and monitors the physical, mental, and social well-being of adults with sickle cell disease. Measure development began with a comprehensive literature review that identified important aspects of HRQOL for assessment including pain and its management, emotional distress, functioning in social, family, sexual, and work-related roles, overall quality of life, and quality of care. Field testing of items was conducted with 556 adults recruited through seven geographically diverse US clinics.
Focus Areas 1. Pain
2. Emotional distress
3. Social-role functioning
4. Overall quality of life
5. Quality of care
Outcomes 1. Pain Impact
2. Emotional Impact
3. Sleep Quality
4. Social Functioning
5. Physical Functioning
Data Location Harvard Dataverse
Biospecimen Available N/A
Data Consent Harvard Dataverse
Biospecimen Consent No sample
Contact Consent NA
Genomic Data No
Age Range 18-64
No. Participants 561
Inclusion Criteria 1. Had a confirmed diagnosis of sickle cell disease (SCD).
2. Were 18 years of age or older.
3. Were able to provide informed consent.
4. Did not have significant cognitive impairments that would interfere with their ability to complete the survey.
Exclusion Criteria 1. Did not have a confirmed diagnosis of sickle cell disease (SCD).
2. Were under the age of 18.
3. Were unable to provide informed consent.
4. Had a significant cognitive impairment that would interfere with their ability to complete the survey.
Data ElementVariables
Substance Use Comrbd12
Data ElementVariables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease Q195_Severity2A_3
SC_Type
Data ElementVariables
Cancer Comrbd10
Data ElementVariables
Aneurysm
Cardiac Failure
Cardiovascular Problem Comrbd1
Heart Problem Comrbd4
Data ElementVariables
Gastrointestinal Problem
Hepatitis Comrbd2
Liver Problem
Data ElementVariables
Diabetes Mellitus Comrbd9
Endocrine Problem
Data ElementVariables
Genitourinary Problem
Kidney Problem SevYN_4
Priapism SexFxM1
SexFxM1_rc
Renal Dialysis History
Data ElementVariables
Fever
HIV Infection Comrbd13
Immune Problem
Infection
Vaccination
Data ElementVariables
Anxiety
Depression
Emotional Health B3_1_P_11
B3_1_P_17
B3_1_P_7
B3_2_A_1
B3_2_A_2
B3_2_A_3
B3_2_A_4
B3_2_A_5
B3_2_A_6
B3_2_A_7
B3_2_A_8
B3_2_A_9
B3_2_D_1
B3_2_D_10
B3_2_D_11
B3_2_D_12
B3_2_D_13
B3_2_D_14
B3_2_D_15
B3_2_D_16
B3_2_D_17
B3_2_D_18
B3_2_D_19
B3_2_D_2
B3_2_D_3
B3_2_D_4
B3_2_D_5
B3_2_D_6
B3_2_D_7
B3_2_D_8
B3_2_D_9
Mental status
Psychiatric Disorder Comrbd11
Data ElementVariables
Musculoskeletal Problem
Osteomyelitis
Osteonecrosis SevYN_6
Rheumatic Diseases Comrbd5
Data ElementVariables
Meningitis
Neurologic Event
Seizure
Stroke SevYN_7
Transient Ischemic Attack
Data ElementVariables
Ocular Problem
Sickle Retinopathy SevYN_5
Data ElementVariables
Abdominal Pain B3_1_P_8
General Pain B3_1_P_1
B3_1_P_10
B3_1_P_12
B3_1_P_13
B3_1_P_14
B3_1_P_15
B3_1_P_16
B3_1_P_2
B3_1_P_3
B3_1_P_9
Headache Comrbd6
Management
Pain Attack B3_1_P_5
SevPain1
SevPain1_rc
SevPain2
SevPain3
SevPain4
SevPain5
SexFx9
SexFxF1
SexFxF2
Times_Mng_at_home
Skeletal and Joint Pain B3_1_P_4
B3_1_P_6
B3_1_St_1
B3_1_St_10
B3_1_St_11
B3_1_St_12
B3_1_St_13
B3_1_St_14
B3_1_St_15
B3_1_St_16
B3_1_St_17
B3_1_St_18
B3_1_St_19
B3_1_St_2
B3_1_St_3
B3_1_St_4
B3_1_St_5
B3_1_St_6
B3_1_St_7
B3_1_St_8
B3_1_St_9
Data ElementVariables
Birth Outcome
Gestational Age
Menstruation
Pregnancy Comrbd3
Reproductive Behavior
Data ElementVariables
Acute Chest Syndrome SevYN_2
Asthma Comrbd7
Lung Disease Comrbd8
SevYN_3
Other Respiratory Problem
Data ElementVariables
Skin Problem SevYN_1
Data ElementVariables
Sleep Problem B3_1_Sl_1
B3_1_Sl_10
B3_1_Sl_11
B3_1_Sl_12
B3_1_Sl_13
B3_1_Sl_14
B3_1_Sl_15
B3_1_Sl_16
B3_1_Sl_17
B3_1_sl_18
B3_1_Sl_19
B3_1_Sl_2
B3_1_Sl_20
B3_1_Sl_3
B3_1_Sl_4
B3_1_Sl_5
B3_1_Sl_6
B3_1_Sl_7
B3_1_Sl_8
B3_1_Sl_9
Data ElementVariables
Cardiovascular
Digestive SevYN_9
Genitourinary
Lymphatic SevYN_8
Musculoskeletal
Ocular
Respiratory
Surgery History
Data ElementVariables
Address
Age Age
Ethnic Group
Gender Sex
Language
National Origin
Nuclear Family
Race
Data ElementVariables
Facility Type
Provider Type
Quality of Care Access2
BadEm
EmBleve
EmComm1
EmComm2
EmComm3
EmHlp_pain
EmWait
DlayCare
QOCEm
Visit NoVisPr
Screen1
Screen3
Times_Em_pain
Data ElementVariables
Country of Care
Facility Type
Quality of Care Screen2
QOCAll
QOCAppt
QOCDr
DrComm1
DrComm2
DrComm3
DrComm4
DrKnow
DrSCDSp
HIns
Access1
Data ElementVariables
General Health Global1
Global2
PROMIS SF-Sleep Disturb 1_ItmCnt
PROMIS SF-Sleep Disturb 1_RawScore
PROMIS SF-Sleep Disturb 1_SE
PROMIS SF-Sleep Disturb 1_TScore
PROMIS SF-Wake Disturb 1_ItmCnt
PROMIS SF-Wake Disturb 1_RawScore
PROMIS SF-Wake Disturb 1_SE
PROMIS SF-Wake Disturb 1_TScore
Data ElementVariables
Pain PROMIS Bank-Pain Interference 1_ItmCnt
PROMIS Bank-Pain Interference 1_RawScore
PROMIS Bank-Pain Interference 1_SE
PROMIS Bank-Pain Interference 1_TScore
PROMIS SF-Pain Behavior 1_ItmCnt
PROMIS SF-Pain Behavior 1_RawScore
PROMIS SF-Pain Behavior 1_SE
PROMIS SF-Pain Behavior 1_TScore
PROMIS SF-Pain Interference 1_ItmCnt
PROMIS SF-Pain Interference 1_RawScore
PROMIS SF-Pain Interference 1_SE
PROMIS SF-Pain Interference 1_TScore
Global7
Data ElementVariables
Cognitive Functioning B3_4_A_1
B3_4_A_2
B3_4_A_3
B3_4_A_4
B3_4_A_5
B3_4_E_1
B3_4_E_2
B3_4_E_3
B3_4_E_4
B3_4_E_5
B3_4_E_6
B3_4_E_7
B3_4_M_1
B3_4_M_2
B3_4_M_3
B3_4_M_4
B3_4_M_5
B3_4_M_6
B3_4_V_1
B3_4_V_10
B3_4_V_2
B3_4_V_3
B3_4_V_4
B3_4_V_5
B3_4_V_6
B3_4_V_7
B3_4_V_8
B3_4_V_9
Emotional Functioning Global10
Global4
PROMIS SF-Anger 1_ItmCnt
PROMIS SF-Anger 1_RawScore
PROMIS SF-Anger 1_SE
PROMIS SF-Anger 1_TScore
PROMIS SF-Anxiety 1_ItmCnt
PROMIS SF-Anxiety 1_RawScore
PROMIS SF-Anxiety 1_SE
PROMIS SF-Anxiety 1_TScore
PROMIS SF-Depression 1_ItmCnt
PROMIS SF-Depression 1_RawScore
PROMIS SF-Depression 1_SE
PROMIS SF-Depression 1_TScore
Physical Functioning Global3
Global6
Global8
PROMIS Bank-Fatigue 1_ItmCnt
PROMIS Bank-Fatigue 1_RawScore
PROMIS Bank-Fatigue 1_SE
PROMIS Bank-Fatigue 1_TScore
PROMIS Bank-Phys. Function 1_ItmCnt
PROMIS Bank-Phys. Function 1_RawScore
PROMIS Bank-Phys. Function 1_SE
PROMIS Bank-Phys. Function 1_TScore
PROMIS SF-Fatigue 1_ItmCnt
PROMIS SF-Fatigue 1_RawScore
PROMIS SF-Fatigue 1_SE
PROMIS SF-Fatigue 1_TScore
PROMIS SF-Phys. Function 1_ItmCnt
PROMIS SF-Phys. Function 1_RawScore
PROMIS SF-Phys. Function 1_SE
PROMIS SF-Phys. Function 1_TScore
SexFx1
SexFx2
SexFx3
SexFx4
SexFx4_rc
SexFx5
SexFx5_rc
SexFx6
SexFx7
SexFx8
SexFxM2
SexFxM3
School Functioning
Social Functioning B3_3_B_1
B3_3_B_2
B3_3_B_3
B3_3_B_4
B3_3_B_5
B3_3_B_6
B3_3_B_7
B3_3_B_8
B3_3_B_9
B3_3_F_1
B3_3_F_10
B3_3_F_11
B3_3_F_12
B3_3_F_2
B3_3_F_3
B3_3_F_4
B3_3_F_5
B3_3_F_6
B3_3_F_7
B3_3_F_8
B3_3_F_9
B3_3_G_1
B3_3_G_2
B3_3_G_3
B3_3_G_4
B3_3_G_5
B3_3_G_6
B3_3_SS_1
B3_3_SS_2
B3_3_SS_3
B3_3_SS_4
B3_3_SS_5
B3_3_SS_6
Global5
Global9
PROMIS SF-Social Sat DSA 1_ItmCnt
PROMIS SF-Social Sat DSA 1_RawScore
PROMIS SF-Social Sat DSA 1_SE
PROMIS SF-Social Sat DSA 1_TScore
PROMIS SF-Social Sat Rol 1_ItmCnt
PROMIS SF-Social Sat Rol 1_RawScore
PROMIS SF-Social Sat Rol 1_SE
PROMIS SF-Social Sat Rol 1_TScore
Data ElementVariables
Antibiotics
Asthma
Blood Medication History
Cardiovascular
Compliance
Current Medication
Depression Medication History
Hydroxyurea SevYN_10
Medication
Neurologic Medication History
Pain SevYN_12
SCD Medication
Sildenafil
Supplements
Data ElementVariables
Blood Transfusion SevYN_11
Chronic Transfusion
Transfusion Complications
Data ElementVariables
ASCQ-Me Emotional Impact B3_2_A_1
B3_2_A_2
B3_2_A_3
B3_2_A_4
B3_2_A_5
B3_2_A_6
B3_2_A_7
B3_2_A_8
B3_2_A_9
B3_2_D_1
B3_2_D_10
B3_2_D_11
B3_2_D_12
B3_2_D_13
B3_2_D_14
B3_2_D_15
B3_2_D_16
B3_2_D_17
B3_2_D_18
B3_2_D_19
B3_2_D_2
B3_2_D_3
B3_2_D_4
B3_2_D_5
B3_2_D_6
B3_2_D_7
B3_2_D_8
B3_2_D_9
ASCQ-Me Social Functioning B3_3_B_1
B3_3_B_2
B3_3_B_3
B3_3_B_4
B3_3_B_5
B3_3_B_6
B3_3_B_7
B3_3_B_8
B3_3_B_9
B3_3_F_1
B3_3_F_10
B3_3_F_11
B3_3_F_12
B3_3_F_2
B3_3_F_3
B3_3_F_4
B3_3_F_5
B3_3_F_6
B3_3_F_7
B3_3_F_8
B3_3_F_9
B3_3_G_1
B3_3_G_2
B3_3_G_3
B3_3_G_4
B3_3_G_5
B3_3_G_6
B3_3_SS_1
B3_3_SS_2
B3_3_SS_3
B3_3_SS_4
B3_3_SS_5
B3_3_SS_6
Brief Resiliency Scale
NeuroQOL Fatigue
NIH Toolbox Loneliness
Pearlin Enhanced Self-Efficacy Scale
Profile of Mood States (POMS)
PROMIS Anger PROMIS SF-Anger 1_ItmCnt
PROMIS SF-Anger 1_RawScore
PROMIS SF-Anger 1_SE
PROMIS SF-Anger 1_TScore
PROMIS Anxiety PROMIS SF-Anxiety 1_ItmCnt
PROMIS SF-Anxiety 1_RawScore
PROMIS SF-Anxiety 1_SE
PROMIS SF-Anxiety 1_TScore
PROMIS Depression PROMIS SF-Depression 1_ItmCnt
PROMIS SF-Depression 1_RawScore
PROMIS SF-Depression 1_SE
PROMIS SF-Depression 1_TScore
PROMIS Emotional Distress- Depression
PROMIS Emotional Support
PROMIS Fatigue PROMIS Bank-Fatigue 1_ItmCnt
PROMIS Bank-Fatigue 1_RawScore
PROMIS Bank-Fatigue 1_SE
PROMIS Bank-Fatigue 1_TScore
PROMIS SF-Fatigue 1_ItmCnt
PROMIS SF-Fatigue 1_RawScore
PROMIS SF-Fatigue 1_SE
PROMIS SF-Fatigue 1_TScore
PROMIS Global Mental Health
PROMIS Satisfaction with Participation in Discretionary Social Activities PROMIS SF-Social Sat DSA 1_ItmCnt
PROMIS SF-Social Sat DSA 1_RawScore
PROMIS SF-Social Sat DSA 1_SE
PROMIS SF-Social Sat DSA 1_TScore
PROMIS SF-Social Sat Rol 1_ItmCnt
PROMIS SF-Social Sat Rol 1_RawScore
PROMIS SF-Social Sat Rol 1_SE
PROMIS SF-Social Sat Rol 1_TScore
Data ElementVariables
Adaptive Behavior Assessment System-II
Adverse Childhood Experience Questionnaire (ACE-Q)
Beery Developmental Test of Visual-Motor Integration
Benton Tactile Form Perception Test
Mini Mental Status Examination (MMSE)
Oral Verbal Fluency Test
PROMIS Cognitive Function B3_4_A_1
B3_4_A_2
B3_4_A_3
B3_4_A_4
B3_4_A_5
B3_4_E_1
B3_4_E_2
B3_4_E_3
B3_4_E_4
B3_4_E_5
B3_4_E_6
B3_4_E_7
B3_4_M_1
B3_4_M_2
B3_4_M_3
B3_4_M_4
B3_4_M_5
B3_4_M_6
B3_4_V_1
B3_4_V_10
B3_4_V_2
B3_4_V_3
B3_4_V_4
B3_4_V_5
B3_4_V_6
B3_4_V_7
B3_4_V_8
B3_4_V_9
Purdue Pegboard (SPA version)
Test of Everyday Attention (TEA)
Vineland Adaptive Behavior Summary
Wechsler Intelligence Scales
Wechsler Memory Scale
Wisconsin Card Sorting Test
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability
Data ElementVariables
ASCQ-Me Pain Episode SevPain1
SevPain1_rc
SevPain2
SevPain3
SevPain4
SevPain5
Times_Mng_at_home
ASCQ-Me Pain Impact B3_1_P_1
B3_1_P_10
B3_1_P_11
B3_1_P_12
B3_1_P_13
B3_1_P_14
B3_1_P_15
B3_1_P_16
B3_1_P_17
B3_1_P_2
B3_1_P_3
B3_1_P_4
B3_1_P_5
B3_1_P_6
B3_1_P_7
B3_1_P_8
B3_1_P_9
ASCQ-Me Stiffness Impact B3_1_St_1
B3_1_St_10
B3_1_St_11
B3_1_St_12
B3_1_St_13
B3_1_St_14
B3_1_St_15
B3_1_St_16
B3_1_St_17
B3_1_St_18
B3_1_St_19
B3_1_St_2
B3_1_St_3
B3_1_St_4
B3_1_St_5
B3_1_St_6
B3_1_St_7
B3_1_St_8
B3_1_St_9
Brief Pain Inventory (BPI)
PROMIS Neuropathic Pain Quality
PROMIS Nociceptive Pain Quality
PROMIS Pain Behavior PROMIS SF-Pain Behavior 1_ItmCnt
PROMIS SF-Pain Behavior 1_RawScore
PROMIS SF-Pain Behavior 1_SE
PROMIS SF-Pain Behavior 1_TScore
PROMIS Pain Interference PROMIS Bank-Pain Interference 1_ItmCnt
PROMIS Bank-Pain Interference 1_RawScore
PROMIS Bank-Pain Interference 1_SE
PROMIS Bank-Pain Interference 1_TScore
PROMIS SF-Pain Interference 1_ItmCnt
PROMIS SF-Pain Interference 1_RawScore
PROMIS SF-Pain Interference 1_SE
PROMIS SF-Pain Interference 1_TScore
Data ElementVariables
6-Minute Walk Test
PROMIS Physical Functioning PROMIS Bank-Phys. Function 1_ItmCnt
PROMIS Bank-Phys. Function 1_RawScore
PROMIS Bank-Phys. Function 1_SE
PROMIS Bank-Phys. Function 1_TScore
PROMIS SF-Phys. Function 1_ItmCnt
PROMIS SF-Phys. Function 1_RawScore
PROMIS SF-Phys. Function 1_SE
PROMIS SF-Phys. Function 1_TScore
Tanner Stage
Data ElementVariables
ASCQ-Me Healthcare Utilization Access1
Access2
BadEm
DlayCare
DrComm1
DrComm2
DrComm3
DrComm4
DrKnow
DrSCDSp
EmBleve
EmComm1
EmComm2
EmComm3
EmHlp_pain
EmWait
HIns
NoVisPr
QOCAll
QOCAppt
QOCDr
QOCEm
Screen1
Screen2
Screen3
Times_Em_pain
ASCQ-Me Quality of Care (QOC)
Patient Satisfaction Questionnaire (PSQ)
Data ElementVariables
ASCQ-Me SCD Medical History Checklist Comrbd1
Comrbd10
Comrbd11
Comrbd12
Comrbd13
Comrbd2
Comrbd3
Comrbd4
Comrbd5
Comrbd6
Comrbd7
Comrbd8
Comrbd9
Q195_Severity2A_3
SevYN_1
SevYN_10
SevYN_11
SevYN_12
SevYN_2
SevYN_3
SevYN_4
SevYN_5
SevYN_6
SevYN_7
SevYN_8
SevYN_9
ASCQ-Me Sexual Health SexFx1
SexFx2
SexFx3
SexFx4
SexFx4_rc
SexFx5
SexFx5_rc
SexFx6
SexFx7
SexFx8
SexFx9
SexFxF1
SexFxF2
SexFxM1
SexFxM1_rc
SexFxM2
SexFxM3
Child Health Questionnaire (CHQ)
Ladder of Life
Pediatric Quality of Life Inventory Child Report (ages 13-18)
Pediatric Quality of Life Inventory Child Report (ages 8-12)
Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18)
Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12)
PROMIS Global Health Global1
Global10
Global2
Global3
Global4
Global5
Global6
Global7
Global8
Global9
PROMIS Global Physical Health
PROMIS Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey
Data ElementVariables
ASCQ-Me Sleep Impact B3_1_Sl_1
B3_1_Sl_10
B3_1_Sl_11
B3_1_Sl_12
B3_1_Sl_13
B3_1_Sl_14
B3_1_Sl_15
B3_1_Sl_16
B3_1_Sl_17
B3_1_sl_18
B3_1_Sl_19
B3_1_Sl_2
B3_1_Sl_20
B3_1_Sl_3
B3_1_Sl_4
B3_1_Sl_5
B3_1_Sl_6
B3_1_Sl_7
B3_1_Sl_8
B3_1_Sl_9
PROMIS Sleep Distrubance PROMIS SF-Sleep Disturb 1_ItmCnt
PROMIS SF-Sleep Disturb 1_RawScore
PROMIS SF-Sleep Disturb 1_SE
PROMIS SF-Sleep Disturb 1_TScore
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