Loading…

Protocol - Sickle Cell Disease Self-Management - Caregiver Skills Checklist

Add to My Toolkit
Description

A 22-question caregiver-administered checklist to determine how well adolescents manage their sickle cell disease. Items are grouped to measure two domains: Transition Skills (answer choices from 1 to 5), and Disease Knowledge (answer choices from 1 to 3). The final item asks caregivers to rate on a scale from 1 to 10 their level of confidence in their adolescent’s ability to manage their illness on their own. The total score is determined by a sum of responses (range 21-85) with higher values indicating greater readiness.

Specific Instructions

The Psychosocial and SDoH Working Group recognizes that these instruments were not developed using inclusive language. The WG recognizes that investigators may want to implement the protocols with appropriate language, but caution that changes should not otherwise alter the items.

The checklists are designed to be completed at the adolescent’s routine clinic visits. The caregiver checklist consists of a Total score, two Domain scores, and a Confidence score. The Total score is determined by a sum of responses (range 21-85). Domain scores are determined by taking the mean of the domain items. The Confidence score is on a scale of 1-10. For all scores, higher values indicate greater self-management.

©2023 St. Jude Children’s Research Hospital. All rights reserved. Users are authorized to use without charge for study or research purposes. The Sickle Cell Self-Management Skills Checklist (“Checklist”) may be used for lawful research and evaluation purposes only. User must acknowledge the use of the Checklist in all presentations and publications by stating “This study/presentation made use of The Sickle Cell Self-Management Skills Checklist of St. Jude Children’s Research Hospital.” User will not create or sell any commercial or open-source product that includes the Checklist except as allowed herein. The Checklist is provided “as is,” without any warranty or promise of any kind. St. Jude Children’s Research Hospital and Jerlym Porter, Ph.D, shall have no liability to User or any third parties with whom the Checklist is used. To the extent, if any, allowed by applicable law, User will indemnify St. Jude Children’s Research Hospital and Jerlym Porter, Ph.D from any and all claims or liabilities arising from or related to User’s use of the Checklist. For permitted uses, you may make minor adaptations of the phrasing to fit particular circumstances or modes of survey administration. Otherwise, you may not translate or substantially modify the tool without additional permission. If a derivative work is created based on the scale, the work will be owned by St. Jude Children’s Research Hospital.

Availability

Available

Protocol

Name:____________________    MRN:______________    Date:_________

Self-Management Skills Checklist for Caregivers

Directions: Below is a list of skills that teens use to manage their sickle cell disease. Please circle the number that best describes your child for each question.

1

2

3

4

5

No, my child does not do this.

No, but my child is learning how to do this.

Yes, my child has started doing this when reminded.

Yes, my child always does this when reminded.

Yes, my child always does this when needed.

1.

Can your child name all of his medicines?

1

2

3

4

5

2.

Can your child find information about sickle cell disease if needed (like at the doctor’s office, on the internet, or in the community)?

1

2

3

4

5

3.

Can your child find information about educational options if needed?

1

2

3

4

5

4.

Does your child ask the doctor or medical team questions during clinical appointments?

1

2

3

4

5

5.

Does your child use strategies other than pain medicines to manage pain (like deep breathing, distraction, imagery)?

1

2

3

4

5

6.

Does your child take medicines on the correct schedule?

1

2

3

4

5

7.

Does your child refill pain medicines on his own?

1

2

3

4

5

8.

Can your child complete a medical history form?

1

2

3

4

5

9.

Does your child take part in activities to stay healthy like exercising and eating healthy foods?

1

2

3

4

5

10.

Does your child find someone to talk to when feeling sad, down, anxious, or angry?

1

2

3

4

5

11.

Does your child talk to the school or medical team about education and the future?

1

2

3

4

5

1

2

3

No, my child does not know.

No, but my child is learning.

Yes, my child knows.

1

Does your child know the type of sickle cell disease he has?

1

2

3

2

Does your child know about complications related to sickle cell disease (like stroke retinopathy, and bone infection)?

1

2

3

3

Does your child know how to manage mild to moderate pain episodes at home?

1

2

3

4

Does your child know how to prevent a pain crisis?

1

2

3

5

Does your child know when to go to the hospital if symptoms become too much to manage at home?

1

2

3

6

Does your child know how often to come to clinic appointments?

1

2

3

7

Does your child know which insurance plan he has?

1

2

3

8

Does your child know how to find a doctor (not at St. Jude) who is covered by that insurance plan?

1

2

3

9

Does your child know how to protect against unplanned pregnancy and sexually transmitted diseases (STDs)?

1

2

3

10

Does your child know the effects of tobacco, street drugs, and alcohol on the body of a person with sickle cell disease?

1

2

3

On a scale of 0 to 10, please circle one number that best describes how confident you feel about your child’s ability to manage his own illness.

0

1

2

3

4

5

6

7

8

9

10

Not Confident

Very Confident

Biomedical Communications 9/14 (AK7600)

© St. Jude Children’s Research Hospital 2021

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

Lifestage

Adult

Participants

18- to 59-year-olds

Selection Rationale

The Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist is a standardized, reliable, and valid instrument used to collect patient-reported self-management skills for adolescents with sickle cell disease (SCD).

Language

English

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist - Self-Management Skills Checklist for Caregivers

Source

Loew, M., Williams, J. L., Russell, K., Rupff, R., Hankins, J. S., & Porter, J. (2020). The Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist: Preliminary reliability and validity. Journal of Pediatric Hematology/Oncology, 42(1), 12-19.

General References

Multiple Chronic Conditions Resource Center. (2022). Self-Management in Chronic Conditions. https://www.multiplechronicconditions.org/self-management-guidelines.

Protocol ID

870802

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Activity_Stay_Healthy
PX870802010900 Does your child take part in activities to more
stay healthy like exercising and eating healthy foods? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Ask_Doctor_Questions
PX870802010400 Does your child ask the doctor or medical more
team questions during clinical appointments? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Clinic_Appointment
PX870802020600 Does your child know how often to come to more
clinic appointments? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Complete_Medical_History_Form
PX870802010800 Does your child complete a medical history form? N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Doctor_Insurance
PX870802020800 Does your child know how to find a doctor more
(not at St. Jude) who is covered by that insurance plan? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Find_Information_Educational_Options
PX870802010300 Can you child find information about more
educational options if needed? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Find_Information_Sickle_Cell
PX870802010200 Can your child find information about sickle more
cell disease if needed (like at the doctor's office, on the internet, or in a community)? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Hospital_Manage_Symptom
PX870802020500 Does your child know when to go to the more
hospital if symptoms become too much to manage at home? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Insurance_Plan
PX870802020700 Does your child know which insurance plan he has? N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Manage_Pain
PX870802020300 Does your child know how to manage mild to more
moderate pain episodes at home? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Medicine_Correct_Schedule
PX870802010600 Does your child take medicines on the more
correct schedule? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Name_Medicine
PX870802010100 Can your child name all of his medicines? N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Prevent_Pain_Crisis
PX870802020400 Does your child know how to prevent a pain crisis? N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Refill_Pain_Medicine
PX870802010700 Does your child refill pain medicines on his own? N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Related_Complication
PX870802020200 Does your child know about complications more
related to sickle cell disease (like stroke, retinopathy, and bone infection)? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Someone_Talk_Sad_Down_Anxious_Angry
PX870802011000 Does your child find someone to talk to when more
feeling sad, down, anxious, or angry? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Strategy_Manage_Pain
PX870802010500 Does your child use strategies other than more
pain medicines to manage pain (like deep breathing, distraction, imagery)? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Talk_Education_Future
PX870802011100 Does your child talk to the school or more
medical team about education and the future? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Tobacco_Street_Drug_Alcohol
PX870802021000 Does your child know how the effects of more
tobacco, street drugs, and alcohol on the body of a person with sickle cell disease? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Type_Sickle_Cell_Disease
PX870802020100 Does your child know the type of sickle cell more
disease he has? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Unplanned_Pregnancy_Sexually_Transmitted_Disease
PX870802020900 Does your child know how to protect against more
unplanned pregnancy and sexually transmitted diseases (STDs)? show less
N/A
PX870802_Self_Management_Skills_Checklist_Caregiver_Scale_Confident_Child_Manage_Illness
PX870802030000 On a scale of 0 to 10, please circle one more
number that best describes how confident you feel about your child's ability to manage his own illness. show less
N/A
SCD Psychosocial and Social Determinants of Health
Measure Name

Sickle Cell Disease Self-Management Skills Checklist

Release Date

May 26, 2023

Definition

A measure to determine how well adolescents with sickle cell disease manage their disease burden and treatment.

Purpose

This measure is used to evaluate the skills and overall knowledge of disease burden placed on sickle cell disease adolescents. Proper management of chronic disease burden has been shown to reduce need for hospitalizations, emergency room or emergency department visits, and overall healthcare costs.

Keywords

Self-management, sickle cell disease, SCD, Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist, SMSC, SMSC-C, Psychosocial, chronic

Measure Protocols
Protocol ID Protocol Name
870801 Sickle Cell Disease Self-Management - Adolescent Skills Checklist
870802 Sickle Cell Disease Self-Management - Caregiver Skills Checklist
Publications

There are no publications listed for this protocol.