Loading…

Protocol - Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)

Add to Toolkit

Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

Description:

This protocol includes 30 self-administered questions from the short form of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Domains covered include emotional impact (5 items), social functioning impact (5 items), sleep impact (5 items), stiffness impact (5 items), pain episode (5 items), and pain frequency (5 items).

Protocol:

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)

Answer all the questions by checking the box to the left of your answer.

Emotional Impact

1. In the past 7 days, how often did you feel completely hopeless because of your health?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how lonely did you feel because of your health problems?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

3. In the past 7 days, how depressed were you about your health problems?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

4. In the past 7 days, how much did you worry about getting sick?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

5. In the past 7 days, how often were you very worried about needing to go to the hospital?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Social Functioning Impact

1. In the past 30 days, how much did you rely on others to take care of you because of your health?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

2. In the past 30 days, how often did your health slow you down?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 30 days, how often did your health make it hard for you to do things?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 30 days, how often did your health keep you from going out?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 30 days, how much did your health make it hard for you to do things with your friends?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

Sleep Impact

1. In the past 7 days, how often did you stay up most of the night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often was it very easy for you to fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often did you have a lot of trouble falling asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you stay up all night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did you stay up half of the night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Stiffness Impact

1. In the past 7 days, how often were your joints very stiff when you woke up?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often were your joints very stiff during the day?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often were your joints so stiff during the day that you could not move?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you wake up so stiff that you could not move?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did it take you a very long time to get out of bed because of stiffness?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Pain Impact

1. In the past 7 days, how often did you have pain so bad that you could not do anything for a whole day?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often did you have pain so bad that you could not get out of bed?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often did you have very severe pain?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you have pain so bad that you had to stop what you were doing?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did you have pain so bad that it was hard to finish what you were doing?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Pain Episodes

1. In the past 12 months, how many sickle cell pain attacks (crises) did you have?

[ ] I did not have a pain attack (crisis) in the past 12 months

[ ] 1

[ ] 2

[ ] 3

[ ] 4 or more

2. When was your last pain attack (crisis)?

[ ] I’ve never had a pain attack (crisis)

[ ] More than 5 years ago

[ ] 1-5 years ago

[ ] 7-11 months ago

[ ] 1-6 months ago

[ ] 1-3 weeks ago

[ ] Less than a week ago

[ ] I have one right now

3. Using any number from 0 to 10, where 0 is no pain and 10 is the worst pain imaginable, how severe was your pain during your last pain attack (crisis)?

[ ] 0 No pain

[ ] 1

[ ] 2

[ ] 3

[ ] 4

[ ] 5

[ ] 6

[ ] 7

[ ] 8

[ ] 9

[ ] 10 Worst pain imaginable

[ ] I’ve never had a pain attack (crisis)

4. How much did your last pain attack (crisis) interfere with your life?

[ ] I’ve never had a pain attack (crisis)

[ ] Not at all, I did everything I usually do

[ ] I had to cut down on some things I usually do

[ ] I could not do most things I usually do

[ ] I could not take care of myself and needed some help from family or friends

[ ] I could not take care of myself and needed constant care from family, friends, doctors, or nurses

5. About how long did your most recent pain attack (crisis) last?

[ ] I’ve never had a pain attack (crisis)

[ ] Less than 1 hour

[ ] 1-12 hours

[ ] 13-23 hours

[ ] 1-3 days

[ ] 4-6 days

[ ] 1-2 weeks

[ ] More than 2 weeks

Scoring information is available from Keller S. D., Evensen, C., Yang, M., & Owens, T. (2011). Adult Sickle Cell Quality of Life Measurement Information System user’s manual and interpretation guide. Bethesda, MD: U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung and Blood Institute.

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualYes
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Adult

Specific Instructions:

None

Research Domain Information

Release Date:

July 30, 2015

Definition

A questionnaire to assess the physical, emotional, and social impact of chronic conditions, such as sickle cell disease (SCD).

Purpose

This measure can be used to track health status and treatment outcomes and understand the health care requirements of patients with chronic conditions, such as sickle cell disease (SCD).

Selection Rationale

The short form of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) is a reliable, validated set of self-administered questions for assessing the life impact of sickle cell disease (SCD) on adult functioning and well-being.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Sickle Cell Disease Adult Quality of Life Questionnaire Assessment Score4922441CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

Keller, S. D., Yang, M., Treadwell, M. J., Werner, E. M., & Hassell, K. L. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health and Quality of Life Outcomes, 12, 125.

General References

Treadwell, M. J., Hassell, K., Levine, R., & Keller, S. (2014). Adult sickle cell quality-of-life measurement information system (ASCQ-Me): Conceptual model based on review of the literature and formative research. The Clinical Journal of Pain 30(10), 902-14.

Panepinto, J. A. (2012). Health-related quality of life in patients with hemoglobinopathies. Hematology American Society Hematology Education Program 2012, 284-289. doi:10.1182/asheducation-2012.1.284

Protocol ID:

820201

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX820201_QualityOfLife_SCDAdult_Completely_Hopeless_Past7daysPX820201010000In the past 7 days, how often did you feel completely hopeless because of your health?4N/A
PX820201_QualityOfLife_SCDAdult_Lonely_Past7daysPX820201020000In the past 7 days, how lonely did you feel because of your health problems?4N/A
PX820201_QualityOfLife_SCDAdult_Depressed_Past7daysPX820201030000In the past 7 days, how depressed were you about your health problems?4N/A
PX820201_QualityOfLife_SCDAdult_Worry_Past7daysPX820201040000In the past 7 days, how much did you worry about getting sick?4N/A
PX820201_QualityOfLife_SCDAdult_Often_Worried_Past7daysPX820201050000In the past 7 days, how often were you very worried about needing to go to the hospital?4N/A
PX820201_QualityOfLife_SCDAdult_RelyOn_Others_Past30daysPX820201060000In the past 30 days, how much did you rely on others to take care of you because of your health?4N/A
PX820201_QualityOfLife_SCDAdult_Often_SlowDown_Past30daysPX820201070000In the past 30 days, how often did your health slow you down?4N/A
PX820201_QualityOfLife_SCDAdult_OftenHard_DoThings_Past30daysPX820201080000In the past 30 days, how often did your health make it hard for you to do things?4N/A
PX820201_QualityOfLife_SCDAdult_OftenPrevent_Going_Past30daysPX820201090000In the past 30 days, how often did your health keep you from going out?4N/A
PX820201_QualityOfLife_SCDAdult_HowMuch_DoThings_Past30daysPX820201100000In the past 30 days, how much did your health make it hard for you to do things with your friends?4N/A
PX820201_QualityOfLife_SCDAdult_OftenUnable_Sleep_Past7daysPX820201110000In the past 7 days, how often did you stay up most of the night because you could not fall asleep?4N/A
PX820201_QualityOfLife_SCDAdult_OftenEasy_Sleep_Past7daysPX820201120000In the past 7 days, how often was it very easy for you to fall asleep?4N/A
PX820201_QualityOfLife_SCDAdult_Trouble_Sleep_Past7daysPX820201130000In the past 7 days, how often did you have a lot of trouble falling asleep?4N/A
PX820201_QualityOfLife_SCDAdult_Up_AllNight_Past7daysPX820201140000In the past 7 days, how often did you stay up all night because you could not fall asleep?4N/A
PX820201_QualityOfLife_SCDAdult_Up_HalfNight_Past7daysPX820201150000In the past 7 days, how often did you stay up half of the night because you could not fall asleep?4N/A
PX820201_QualityOfLife_SCDAdult_WokeUp_Stiff_Past7daysPX820201160000In the past 7 days, how often were your joints very stiff when you woke up?4N/A
PX820201_QualityOfLife_SCDAdult_Stiff_DuringDay_Past7daysPX820201170000In the past 7 days, how often were your joints very stiff during the day?4N/A
PX820201_QualityOfLife_SCDAdult_UnableMove_DuringDay_Past7daysPX820201180000In the past 7 days, how often were your joints so stiff during the day that you could not move?4N/A
PX820201_QualityOfLife_SCDAdult_WakeUp_UnableMove_Past7daysPX820201190000In the past 7 days, how often did you wake up so stiff that you could not move?4N/A
PX820201_QualityOfLife_SCDAdult_Time_GetOutBed_Past7daysPX820201200000In the past 7 days, how often did it take you a very long time to get out of bed because of stiffness?4N/A
PX820201_QualityOfLife_SCDAdult_Pain_NoActivity_Past7daysPX820201210000In the past 7 days, how often did you have pain so bad that you could not do anything for a whole day?4N/A
PX820201_QualityOfLife_SCDAdult_Unable_OutOfBed_Past7daysPX820201220000In the past 7 days, how often did you have pain so bad that you could not get out of bed?4N/A
PX820201_QualityOfLife_SCDAdult_Often_SeverePain_Past7daysPX820201230000In the past 7 days, how often did you have very severe pain?4N/A
PX820201_QualityOfLife_SCDAdult_Stop_Activity_Past7daysPX820201240000In the past 7 days, how often did you have pain so bad that you had to stop what you were doing?4N/A
PX820201_QualityOfLife_SCDAdult_Finish_Activity_Past7daysPX820201250000In the past 7 days, how often did you have pain so bad that it was hard to finish what you were doing?4N/A
PX820201_QualityOfLife_SCDAdult_PainAttack_Crises_Past12monthsPX820201260000In the past 12 months, how many sickle cell pain attacks (crises) did you have?4N/A
PX820201_QualityOfLife_SCDAdult_Last_PainAttack_CrisisPX820201270000When was your last pain attack (crisis)?4N/A
PX820201_QualityOfLife_SCDAdult_PainServerity_DuringAttack_CrisisPX820201280000Using any number from 0 to 10, where 0 is no pain and 10 is the worst pain imaginable, how severe was your pain during your last pain attack (crisis)?4N/A
PX820201_QualityOfLife_SCDAdult_LastPainAttack_Crisis_InterferePX820201290000How much did your last pain attack (crisis) interfere with your life?4N/A
PX820201_QualityOfLife_SCDAdult_Length_RecentPainAttack_CrisisPX820201300000About how long did your most recent pain attack (crisis) last?4N/A