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Protocol - Self-efficacy in Sickle Cell Disease

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Description:

The Sickle Cell Disease Self-Efficacy Scale is a nine-item self-administered questionnaire that measures disease-specific perceptions of the ability to manage day-to-day issues resulting from sickle cell disease (SCD). Items are scores according to a five-point scale ranging from "1 - Not sure at all" to "5 - Very sure." Responses from individual items are summed to give an overall score with higher scores indicating greater self-efficacy.

Protocol:

Sickle Cell Disease Self-Efficacy Scale

The following questions ask about how sure you are in dealing day-to-day with sickle cell disease. There are no right or wrong answers; we just want to know what you think. So for each question, tell us how sure you are by circling the response that best tells how you feel. Please answer every question.

1. How sure are you that you can do something to cut down on most of the pain?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

2. How sure are you that you can keep doing most of the things you do day-to-day?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

3. How sure are you that you can keep sickle cell disease pain from interfering with your sleep?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

4. How sure are you that you can reduce your sickle cell disease pain by using methods other than taking medications?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

5. How sure are you that you can control how often or when you get tired?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

6. How sure are you that you can do something to help yourself feel better if you are feeling sad or blue?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

7. As compared with other people with sickle cell disease, how sure are you that you can manage your life from day-to-day?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

8. How sure are you that you can manage your sickle cell disease symptoms so that you can do the things you enjoy doing?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

9. How sure are you that you can deal with the frustration of having sickle cell disease?

[ ] 1 Not Sure at All

[ ] 2 Not Sure

[ ] 3 Neither

[ ] 4 Sure

[ ] 5 Very Sure

Scoring:

Responses from individual items are summed to give an overall score, with higher scores indicating greater self-efficacy.

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 No
Mode of Administration

Self-administered questionnaire

Life Stage:

Adult

Participants:

Adults, ages 18 and older

Specific Instructions:

None

Selection Rationale

The Sickle Cell Disease Self-Efficacy Scale is a brief, reliable, and valid self-administered questionnaire that captures the participant’s ability to engage successfully in day-to-day activities despite having sickle cell disease (SCD).

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Sickle Cell Disease Self-Efficacy Questionnaire Assessment Scale 4922451 CDE Browser
Derived Variables

None

Process and Review

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

Source

Edwards, R., Telfair, J., Cecil, H., & Lenoci, J. (2000). Reliability and validity of a self-efficacy instrument specific to sickle cell disease. Behaviour Research and Therapy 38, 951-963.

General References

Adegbola, M. (2011). Spirituality, self-efficacy, and quality of life among adults with sickle cell disease. Southern Online Journal of Nursing Research 11(1), 5.

Barakat, L. P., Schwartz, L. A., Salamon, K. S., & Radcliffe, J. (2010). A family-based randomized controlled trial of pain intervention for adolescents with sickle cell disease. Journal of Pediatric Hematology/Oncology 32(7), 540-547.

Edwards, R., Telfair, J., Cecil, H., & Lenoci, J. (2001). Self-efficacy as a predictor of adult adjustment to sickle cell disease: One-year outcomes. Psychosomatic Medicine 63(5), 850-858.

Protocol ID:

820401

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX820401_SelfEfficacySCD_Life_Management_DayToDayy PX820401070000 As compared with other people with sickle cell disease, how sure are you that you can manage your life from day-to-day? 4 N/A
PX820401_SelfEfficacySCD_Sure_Control_Frequency_GetTired PX820401050000 How sure are you that you can control how often or when you get tired? 4 N/A
PX820401_SelfEfficacySCD_Sure_DealFrustration_HavingDisease PX820401090000 How sure are you that you can deal with the frustration of having sickle cell disease? 4 N/A
PX820401_SelfEfficacySCD_Sure_Doing_DayToDay PX820401020000 How sure are you that you can keep doing most of the things you do day-to-day? 4 N/A
PX820401_SelfEfficacySCD_Sure_DoSomething_FeelBetter PX820401060000 How sure are you that you can do something to help yourself feel better if you are feeling sad or blue? 4 N/A
PX820401_SelfEfficacySCD_Sure_ManageDiseaseSymptoms PX820401080000 How sure are you that you can manage your sickle cell disease symptoms so that you can do the things you enjoy doing? 4 N/A
PX820401_SelfEfficacySCD_Sure_PreventPain_Interfering_Sleep PX820401030000 How sure are you that you can keep sickle cell disease pain from interfering with your sleep? 4 N/A
PX820401_SelfEfficacySCD_Sure_ReducePain_NonMedication PX820401040000 How sure are you that you can reduce your sickle cell disease pain by using methods other than taking medications? 4 N/A
PX820401_SelfEfficacySCD_Sure_Something_Reduce_Pain PX820401010000 How sure are you that you can do something to cut down on most of the pain? 4 N/A
Research Domain Information
Measure Name:

Self-efficacy in Sickle Cell Disease

Release Date:

July 30, 2015

Definition

A questionnaire to measure a participant’s ability to manage sickle cell disease symptoms on a day-to-day basis.

Purpose

Self-efficacy, or one’s perceptions that they can exercise control over their behaviors and environment, may play an important role in determining the ability to adjust to chronic conditions such as sickle cell disease (SCD).

Keywords

Sickle cell disease, SCD, Sickle Cell Disease Self-Efficacy Scale, self-efficacy, coping