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

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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.

Protocol Name from Source:

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

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual Yes
Mode of Administration

Self-administered questionnaire

Life Stage:

Adult

Participants:

Adults ages 18 and older

Specific Instructions:

None

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 Score 4922441 CDE Browser
Derived Variables

None

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_Past7days PX820201010000 In the past 7 days, how often did you feel completely hopeless because of your health? 4 N/A
PX820201_QualityOfLife_SCDAdult_Depressed_Past7days PX820201030000 In the past 7 days, how depressed were you about your health problems? 4 N/A
PX820201_QualityOfLife_SCDAdult_Finish_Activity_Past7days PX820201250000 In the past 7 days, how often did you have pain so bad that it was hard to finish what you were doing? 4 N/A
PX820201_QualityOfLife_SCDAdult_HowMuch_DoThings_Past30days PX820201100000 In the past 30 days, how much did your health make it hard for you to do things with your friends? 4 N/A
PX820201_QualityOfLife_SCDAdult_LastPainAttack_Crisis_Interfere PX820201290000 How much did your last pain attack (crisis) interfere with your life? 4 N/A
PX820201_QualityOfLife_SCDAdult_Last_PainAttack_Crisis PX820201270000 When was your last pain attack (crisis)? 4 N/A
PX820201_QualityOfLife_SCDAdult_Length_RecentPainAttack_Crisis PX820201300000 About how long did your most recent pain attack (crisis) last? 4 N/A
PX820201_QualityOfLife_SCDAdult_Lonely_Past7days PX820201020000 In the past 7 days, how lonely did you feel because of your health problems? 4 N/A
PX820201_QualityOfLife_SCDAdult_OftenEasy_Sleep_Past7days PX820201120000 In the past 7 days, how often was it very easy for you to fall asleep? 4 N/A
PX820201_QualityOfLife_SCDAdult_OftenHard_DoThings_Past30days PX820201080000 In the past 30 days, how often did your health make it hard for you to do things? 4 N/A
PX820201_QualityOfLife_SCDAdult_OftenPrevent_Going_Past30days PX820201090000 In the past 30 days, how often did your health keep you from going out? 4 N/A
PX820201_QualityOfLife_SCDAdult_OftenUnable_Sleep_Past7days PX820201110000 In the past 7 days, how often did you stay up most of the night because you could not fall asleep? 4 N/A
PX820201_QualityOfLife_SCDAdult_Often_SeverePain_Past7days PX820201230000 In the past 7 days, how often did you have very severe pain? 4 N/A
PX820201_QualityOfLife_SCDAdult_Often_SlowDown_Past30days PX820201070000 In the past 30 days, how often did your health slow you down? 4 N/A
PX820201_QualityOfLife_SCDAdult_Often_Worried_Past7days PX820201050000 In the past 7 days, how often were you very worried about needing to go to the hospital? 4 N/A
PX820201_QualityOfLife_SCDAdult_PainAttack_Crises_Past12months PX820201260000 In the past 12 months, how many sickle cell pain attacks (crises) did you have? 4 N/A
PX820201_QualityOfLife_SCDAdult_PainServerity_DuringAttack_Crisis PX820201280000 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)? 4 N/A
PX820201_QualityOfLife_SCDAdult_Pain_NoActivity_Past7days PX820201210000 In the past 7 days, how often did you have pain so bad that you could not do anything for a whole day? 4 N/A
PX820201_QualityOfLife_SCDAdult_RelyOn_Others_Past30days PX820201060000 In the past 30 days, how much did you rely on others to take care of you because of your health? 4 N/A
PX820201_QualityOfLife_SCDAdult_Stiff_DuringDay_Past7days PX820201170000 In the past 7 days, how often were your joints very stiff during the day? 4 N/A
PX820201_QualityOfLife_SCDAdult_Stop_Activity_Past7days PX820201240000 In the past 7 days, how often did you have pain so bad that you had to stop what you were doing? 4 N/A
PX820201_QualityOfLife_SCDAdult_Time_GetOutBed_Past7days PX820201200000 In the past 7 days, how often did it take you a very long time to get out of bed because of stiffness? 4 N/A
PX820201_QualityOfLife_SCDAdult_Trouble_Sleep_Past7days PX820201130000 In the past 7 days, how often did you have a lot of trouble falling asleep? 4 N/A
PX820201_QualityOfLife_SCDAdult_UnableMove_DuringDay_Past7days PX820201180000 In the past 7 days, how often were your joints so stiff during the day that you could not move? 4 N/A
PX820201_QualityOfLife_SCDAdult_Unable_OutOfBed_Past7days PX820201220000 In the past 7 days, how often did you have pain so bad that you could not get out of bed? 4 N/A
PX820201_QualityOfLife_SCDAdult_Up_AllNight_Past7days PX820201140000 In the past 7 days, how often did you stay up all night because you could not fall asleep? 4 N/A
PX820201_QualityOfLife_SCDAdult_Up_HalfNight_Past7days PX820201150000 In the past 7 days, how often did you stay up half of the night because you could not fall asleep? 4 N/A
PX820201_QualityOfLife_SCDAdult_WakeUp_UnableMove_Past7days PX820201190000 In the past 7 days, how often did you wake up so stiff that you could not move? 4 N/A
PX820201_QualityOfLife_SCDAdult_WokeUp_Stiff_Past7days PX820201160000 In the past 7 days, how often were your joints very stiff when you woke up? 4 N/A
PX820201_QualityOfLife_SCDAdult_Worry_Past7days PX820201040000 In the past 7 days, how much did you worry about getting sick? 4 N/A
Research Domain Information
Measure Name:

Quality of Life in Sickle Cell Disease

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).

Keywords

Sickle cell disease, SCD, quality of life, Adult Sickle Cell Quality of Life Measurement Information System, ASCQ-Me, PedsQL, pain, sleep, distress, stiffness, emotion, social, proprietary