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

Description

This 22-question self-administered checklist was designed specifically 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 adolescents to rate on a scale from 1 to 10 their level of confidence in managing their illness on their own.

Specific Instructions

The checklists are designed to be completed at routine clinic visits. The adolescent 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:_________

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

1	2	3	4	5
No, I do not do this.	No, but I am learning how to do this.	Yes, I have started doing this when I am reminded.	Yes, I always do this when I am reminded.	Yes, I always do this when I need to.

1.	Can you name all your medicines?	1	2	3	4	5
2.	Can you find information about sickle cell disease if you need it (like at the doctors office, on the internet, or in the community)?	1	2	3	4	5
3.	Can you find information about your educational options if you need it?	1	2	3	4	5
4.	Do you ask your doctor or medical team questions during clinical appointments?	1	2	3	4	5
5.	Do you use strategies other than pain medicines to manage your pain (like deep breathing, distraction, imagery)?	1	2	3	4	5
6.	Do you take your medicines when you are supposed to?	1	2	3	4	5
7.	Do you refill your pain medicines on your own?	1	2	3	4	5
8.	Do you complete a medical history form on your own?	1	2	3	4	5
9.	Do you take part in activities to stay healthy like exercising and eating healthy foods?	1	2	3	4	5
10.	Do you find someone to talk to if you feel sad, down, anxious, or angry?	1	2	3	4	5
11.	Do you talk to your school or medical team about your education and the future?	1	2	3	4	5

1	2	3
No, I dont know.	No, but I am learning.	Yes, I know.

1	Do you know what type of sickle cell disease you have?	1	2	3
2	Do you know about complications related to sickle cell disease (like stroke retinopathy, and bone infection)?	1	2	3
3	Do you know how to manage mild to moderate pain episodes at home?	1	2	3
4	Do you know how to prevent a pain crisis?	1	2	3
5	Do you know when to go to the hospital if you cant manage your symptoms at home?	1	2	3
6	Do you know how often you need to come to your clinic appointments?	1	2	3
7	Do you know which insurance plan you have?	1	2	3
8	Do you know how to find a doctor (not at St. Jude) who is covered by your insurance plan?	1	2	3
9	Do you know how to protect yourself from unplanned pregnancy and sexually transmitted diseases (STDs)?	1	2	3
10	Do you know the effects of tobacco, street drugs, and alcohol on your body?	1	2	3

On a scale of 0 to 10, please circle one number that best describes how confident you feel about managing your illness on your own.

0	1	2	3	4	5	6	7	8	9	10
Not Confident										Very Confident

Biomedical Communications 9/14 (AK7600)

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

Adolescent

Participants

Ages 13-18

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 Teens

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

870801

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX870801_Self_Management_Skills_Checklist_Adolescent_Ask_Doctor_Medical_Questions
	PX870801010400	Do you ask your doctor or medical team more questions during clinical appointments? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Clinical_Appointment_Frequency
	PX870801020600	Do you know how often you need to come to more your clinic appointments? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Complete_Medical_History_Form
	PX870801010800	Do you complete a medical history form on more your own? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Find_Covered_Doctor
	PX870801020800	Do you know how to find a doctor (not at St. more Jude) who is covered by your insurance plan? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Find_Educational_Option
	PX870801010300	Can you find information about your more educational options if you need it? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Find_Sickle_Cell_Information
	PX870801010200	Can you find information about sickle cell more disease if you need it (like at the doctor's office, on the internet, or in the community)? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Healthy_Lifestyle
	PX870801010900	Do you take part in activities to stay more healthy like exercising and eating healthy foods? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Hospital_Timing
	PX870801020500	Do you know when to go to the hospital if more you can't manage your symptoms at home? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Insurance_Plan
	PX870801020700	Do you know which insurance plan you have?	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Manage_Mild_Pain_Home
	PX870801020300	Do you know how to manage mild to moderate more pain episodes at home? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Name_Medicine
	PX870801010100	Can you name all your medicines?	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Other_Pain_Management_Strategies
	PX870801010500	Do you use strategies other than pain more medicines to manage your pain (like deep breathing, distraction, imagery)? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Prevent_Pain_Crisis
	PX870801020400	Do you know how to prevent a pain crisis?	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Protect_Pregnancy_STDs
	PX870801020900	Do you know how to protect yourself from more unplanned pregnancy and sexually transmitted diseases (STDs)? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Refill_Pain_Medicine
	PX870801010700	Do you refill your pain medicines on your more own? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Self_Management_Confidence
	PX870801030000	On a scale of 0 to 10, please circle one more number that best describes how confideant you feel about managing your illness on your own. show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Sickle_Cell_Disease_Complications
	PX870801020200	Do you know about complications related to more sickle cell disease (like stroke retinopathy, and bone infection)? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Sickle_Cell_Disease_Type
	PX870801020100	Do you know what type of sickle cell disease more you have? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Take_Medicine
	PX870801010600	Do you take your medicines when you are more supposed to? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Talk_School_Future_Education
	PX870801011100	Do you talk to your school or medical team more about your education and the future? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Talk_When_Sad
	PX870801011000	Do you find someone to talk to if you feel more sad, down, anxious, or angry? show less	N/A
PX870801_Self_Management_Skills_Checklist_Adolescent_Tobacco_Drugs_Alcohol_Effects
	PX870801021000	Do you know the effects of tobacco, street more drugs, and alcohol on your body? 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.

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

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Description

Specific Instructions

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Protocol

Personnel and Training Required

Equipment Needs

Requirements

Mode of Administration

Lifestage

Participants

Selection Rationale

Language

Standards

Derived Variables

Process and Review

Protocol Name from Source

Source

General References

Protocol ID

Variables

Measure Name

Release Date

Definition

Purpose

Keywords

Measure Protocols

Publications