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Protocol - Self-efficacy in Sickle Cell Disease

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Protocol Name from Source:

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

Availability:

Publicly available

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.

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
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 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).

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 Scale4922451CDE Browser

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_Sure_Something_Reduce_PainPX820401010000How sure are you that you can do something to cut down on most of the pain?4N/A
PX820401_SelfEfficacySCD_Sure_Doing_DayToDayPX820401020000How sure are you that you can keep doing most of the things you do day-to-day?4N/A
PX820401_SelfEfficacySCD_Sure_PreventPain_Interfering_SleepPX820401030000How sure are you that you can keep sickle cell disease pain from interfering with your sleep?4N/A
PX820401_SelfEfficacySCD_Sure_ReducePain_NonMedicationPX820401040000How sure are you that you can reduce your sickle cell disease pain by using methods other than taking medications?4N/A
PX820401_SelfEfficacySCD_Sure_Control_Frequency_GetTiredPX820401050000How sure are you that you can control how often or when you get tired?4N/A
PX820401_SelfEfficacySCD_Sure_DoSomething_FeelBetterPX820401060000How sure are you that you can do something to help yourself feel better if you are feeling sad or blue?4N/A
PX820401_SelfEfficacySCD_Life_Management_DayToDayyPX820401070000As compared with other people with sickle cell disease, how sure are you that you can manage your life from day-to-day?4N/A
PX820401_SelfEfficacySCD_Sure_ManageDiseaseSymptomsPX820401080000How sure are you that you can manage your sickle cell disease symptoms so that you can do the things you enjoy doing?4N/A
PX820401_SelfEfficacySCD_Sure_DealFrustration_HavingDiseasePX820401090000How sure are you that you can deal with the frustration of having sickle cell disease?4N/A