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Protocol - Quality of Care - Adults

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Description:

The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) Quality of Care Module is a set of 27 questions administered to adults with sickle cell disease (SCD) to determine the quality of care that they have received from health care providers.

Specific Instructions:

None.

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.

♦ You are sometimes told to skip over some questions in this survey. When this happens you will see an arrow with a note that tells you what question to answer next, like this:

[ ] Yes → If Yes, Go to Question 1

[ ] No

1. In the past 12 months, did you try to make an appointment to see a doctor or nurse?

[ ] Yes

[ ] No →If No, Go to Question 4

2. In the past 12 months, when you tried to make an appointment to see a doctor or nurse, how often were you able to get one as soon as you wanted?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

3. In the past 12 months, how often were you satisfied with the care you received during these scheduled appointments?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

4. Do you have a doctor or nurse who you usually see if you need a check-up, want advice about a health problem, or get sick or hurt?

[ ] Yes

[ ] No →If No, Go to Question 13

5. In the past 12 months, how many visits have you had with this doctor or nurse?

[ ] 0 visits →If 0 visits, Go to Question 13

[ ] 1 visit

[ ] 2 visits

[ ] 3 visits

[ ] 4 or more visits

6. In the past 12 months, how often did this doctor or nurse explain things in a way that is easy to understand?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

7. In the past 12 months, how often did this doctor or nurse listen carefully to you?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

8. In the past 12 months, how often did this doctor or nurse treat you with courtesy and respect?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

9. In the past 12 months, how often did this doctor or nurse spend enough time with you?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

10. In the past 12 months, how often were you satisfied with the care you received from this doctor or nurse?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

11. How much does this doctor or nurse know how sickle cell affects you personally?

[ ] Nothing

[ ] A little bit

[ ] Some

[ ] Quite a bit

[ ] Very much

12. Does this doctor or nurse treat a lot of patients with sickle cell disease?

[ ] Yes

[ ] No

13. In the past 12 months, did you go to an emergency room for any sickle cell care you needed right away?

[ ] Yes

[ ] No →If No, Go to Question 19

14. In the past 12 months, when you went to the emergency room for this care, how often did you get it as soon as you wanted?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

15. In the past 12 months, when you went to the emergency room for this care, how often did the doctors treating you seem to really care about you?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

16. In the past 12 months, when you went to the emergency room for this care, how often did the nurses treating you seem to really care about you?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

17. In the past 12 months, when you went to the emergency room for this care, how often did the clerks and receptionists treat you with courtesy and respect?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

18. In the past 12 months, when you went to the emergency room for this care, how often were you satisfied with the care you received?

[ ] Never

[ ] Sometimes

[ ] Usually

[ ] Always

19. In the past 12 months, how many times did you manage a pain attack (crisis) at home without going to a doctor, clinic, or hospital?

[ ] I did not have a pain attack (crisis) in the past 12 months →If you did not have a pain attack in the last 12 months, Go to Question 27

[ ] 0 times

[ ] 1 time

[ ] 2 times

[ ] 3 times

[ ] 4 or more times

20. In the past 12 months, did you ever delay or avoid going to an emergency room when you thought you needed care?

[ ] Yes, I did not always go for care when I needed it

[ ] No, I always went for care when I thought I needed it →If No, Go to Question 23

21. How important were bad experiences in the emergency room in your decision to avoid going for care?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

22. How important were health insurance issues in your decision to avoid going for care?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

23. In the past 12 months, how many times did you go to the emergency room because of a pain attack (crisis)?

[ ] 0 times →If 0 times, Go to Question 27

[ ] 1 time

[ ] 2 times

[ ] 3 times

[ ] 4 or more times

24. In the past 12 months, how much were the emergency room doctors and nurses able to help your pain?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

25. In the past 12 months, how much did the emergency room doctors and nurses believe that you had very bad sickle cell pain?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

26. In the past 12 months, what is the longest you had to wait in the emergency room before your sickle cell pain was treated?

[ ] Less than 5 minutes

[ ] 5 to 15 minutes

[ ] 16 minutes to 1 hour

[ ] More than 1 hour but less than 2 hours

[ ] 2 hours or more

27. Using any number from 0 to 10 where 0 is the worst care possible and 10 is the best care possible, what number would you use to rate all of the care you received for your health in the last 12 months?

0[ ]Worst care possible

1[ ]


2[ ]


3[ ]


4[ ]


5[ ]


6[ ]


7[ ]


8[ ]


9[ ]


10[ ]Best care possible

Thank you!

Protocol Name from Source:

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

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 No
Mode of Administration

Self-administered questionnaire

Life Stage:

Infant, Toddler, Child, Adolescent

Participants:

Adults ages 18 and older

Selection Rationale

The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) instrument is a standardized, reliable, and valid instrument used to collect patient-reported outcomes from adults with sickle cell disease (SCD). The ASCQ-Me includes item formats similar to the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Sickle Cell Disease Adult Quality of Care Questionnaire Assessment Text 4922434 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Source

Keller, S. D., Yang, M., Treadwell, M. J., Werner, E. M., & Hassell, K. L. (2014). 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(1), 125. doi:10.1186/s12955-014-0125-0

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), 902-914. doi:10.1097/ajp.0000000000000054

Protocol ID:

820101

Variables:
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX820101_QualityOfCareAdults_Bad_Experiences_EmergencyRoom
PX820101210000 How important were bad experiences in the more
emergency room in your decision to avoid going for care? show less
N/A
PX820101_QualityOfCareAdults_CourtesyRespect_DoctorNurse_UsuallySee_Past12months
PX820101080000 In the past 12 months, how often did this more
doctor or nurse treat you with courtesy and respect? show less
N/A
PX820101_QualityOfCareAdults_DoctorNurse_UsuallySee
PX820101040000 Do you have a doctor or nurse who you more
usually see if you need a check-up, want advice about a health problem, or get sick or hurt? show less
N/A
PX820101_QualityOfCareAdults_DoctorNurse_UsuallySee_KnowAffects_Personally
PX820101110000 How much does this doctor or nurse know how more
sickle cell affects you personally? show less
N/A
PX820101_QualityOfCareAdults_DoctorNurse_UsuallySee_TreatLot_Patients
PX820101120000 Does this doctor or nurse treat a lot of more
patients with sickle cell disease? show less
N/A
PX820101_QualityOfCareAdults_Doctor_Appointment_Past12months
PX820101010000 In the past 12 months, did you try to make more
an appointment to see a doctor or nurse? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_ClerksReceptionists_CourtesyRespect_Past12months
PX820101170000 In the past 12 months, when you went to the more
emergency room for this care, how often did the clerks and receptionists treat you with courtesy and respect? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_DelayAvoidCare_Past12months
PX820101200000 In the past 12 months, did you ever delay or more
avoid going to an emergency room when you thought you needed care? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_DoctorsNurses_BelievePain_Past12months
PX820101250000 In the past 12 months, how much did the more
emergency room doctors and nurses believe that you had very bad sickle cell pain? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_DoctorsNurses_HelpPain_Past12months
PX820101240000 In the past 12 months, how much were the more
emergency room doctors and nurses able to help your pain? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_OftenCare_SoonWanted_Past12months
PX820101140000 In the past 12 months, when you went to the more
emergency room for this care, how often did you get it as soon as you wanted? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_OftenDoctors_Care_Past12months
PX820101150000 In the past 12 months, when you went to the more
emergency room for this care, how often did the doctors treating you seem to really care about you? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_OftenNurses_Care_Past12months
PX820101160000 In the past 12 months, when you went to the more
emergency room for this care, how often did the nurses treating you seem to really care about you? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_OftenSatisfied_Care_Past12months
PX820101180000 In the past 12 months, when you went to the more
emergency room for this care, how often were you satisfied with the care you received? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_PainAttackCrisis_Past12months
PX820101230000 In the past 12 months, how many times did more
you go to the emergency room because of a pain attack (crisis)? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_RightAway_Past12months
PX820101130000 In the past 12 months, did you go to an more
emergency room for any sickle cell care you needed right away? show less
N/A
PX820101_QualityOfCareAdults_EmergencyRoom_Wait_PainTreated_Past12months
PX820101260000 In the past 12 months, what is the longest more
you had to wait in the emergency room before your sickle cell pain was treated? show less
N/A
PX820101_QualityOfCareAdults_EnoughTime_DoctorNurse_UsuallySee_Past12months
PX820101090000 In the past 12 months, how often did this more
doctor or nurse spend enough time with you? show less
N/A
PX820101_QualityOfCareAdults_ExplainThings_DoctorNurse_UsuallySee_Past12months
PX820101060000 In the past 12 months, how often did this more
doctor or nurse explain things in a way that is easy to understand? show less
N/A
PX820101_QualityOfCareAdults_Frequency_Get_Appointment_Past12months
PX820101020000 In the past 12 months, when you tried to more
make an appointment to see a doctor or nurse, how often were you able to get one as soon as you wanted? show less
N/A
PX820101_QualityOfCareAdults_Health_Insurance_Avoid_Care
PX820101220000 How important were health insurance issues more
in your decision to avoid going for care? show less
N/A
PX820101_QualityOfCareAdults_ListenCarefully_DoctorNurse_UsuallySee_Past12months
PX820101070000 In the past 12 months, how often did this more
doctor or nurse listen carefully to you? show less
N/A
PX820101_QualityOfCareAdults_PainAttackCrisis_Manage_Home_Past12months
PX820101190000 In the past 12 months, how many times did more
you manage a pain attack (crisis) at home without going to a doctor, clinic, or hospital? show less
N/A
PX820101_QualityOfCareAdults_RatingCare_Received_Past12months
PX820101270000 Using any number from 0 to 10 where 0 is the more
worst care possible and 10 is the best care possible, what number would you use to rate all of the care you received for your health in the last 12 months? show less
N/A
PX820101_QualityOfCareAdults_SatisfiedCareReceived_Appointment_Past12months
PX820101030000 In the past 12 months, how often were you more
satisfied with the care you received during these scheduled appointments? show less
N/A
PX820101_QualityOfCareAdults_SatisfiedCare_DoctorNurse_UsuallySee_Past12months
PX820101100000 In the past 12 months, how often were you more
satisfied with the care you received from this doctor or nurse? show less
N/A
PX820101_QualityOfCareAdults_Visits_DoctorNurse_UsuallySee_Past12months
PX820101050000 In the past 12 months, how many visits have more
you had with this doctor or nurse? show less
N/A
Sickle Cell Disease
Measure Name:

Quality of Care

Release Date:

July 30, 2015

Definition

A measure used to assess patient-reported utilization and perceptions about quality of care for individuals treated for sickle cell disease (SCD).

Purpose

These questions are used to assess the patient-reported health care needs and quality of service from health care providers for individuals with chronic conditions such as sickle cell disease (SCD).

Keywords

Adult Sickle Cell Quality-of-Life Measurement Information System, ASCQ-Me, Consumer Assessment of Healthcare Providers and Systems, CAHPS Health Plan Survey, Child Medicaid Survey, Sickle cell disease, SCD, Quality of care, Quality of life, QOL, Pain, Emergency room visits, ER visits, CAHPS, Health care utilization, Patient perspective