Protocol - Sickle Cell Disease Self-Management - Caregiver Skills Checklist
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
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 Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Activity_Stay_Healthy | ||||
| PX870802010900 | Does your child take part in activities to more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Ask_Doctor_Questions | ||||
| PX870802010400 | Does your child ask the doctor or medical more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Clinic_Appointment | ||||
| PX870802020600 | Does your child know how often to come to more | 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 | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Find_Information_Educational_Options | ||||
| PX870802010300 | Can you child find information about more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Find_Information_Sickle_Cell | ||||
| PX870802010200 | Can your child find information about sickle more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Hospital_Manage_Symptom | ||||
| PX870802020500 | Does your child know when to go to the more | 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 | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Medicine_Correct_Schedule | ||||
| PX870802010600 | Does your child take medicines on the more | 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 | 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 | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Strategy_Manage_Pain | ||||
| PX870802010500 | Does your child use strategies other than more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Talk_Education_Future | ||||
| PX870802011100 | Does your child talk to the school or more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Tobacco_Street_Drug_Alcohol | ||||
| PX870802021000 | Does your child know how the effects of more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Type_Sickle_Cell_Disease | ||||
| PX870802020100 | Does your child know the type of sickle cell more | N/A | ||
| PX870802_Self_Management_Skills_Checklist_Caregiver_Child_Unplanned_Pregnancy_Sexually_Transmitted_Disease | ||||
| PX870802020900 | Does your child know how to protect against more | 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 | N/A | ||
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.