Protocol - Sickle Cell Disease Transition Readiness Assessment

Description

A validated sickle cell disease-specific readiness for transition assessment tool from pediatric to adult care. It is considered to be comprehensive because it includes four skill set scales: Medical, Educational/Vocational, Social Support, and Independent Living.

Specific Instructions

Each of the items 1-22 allows a 6-choice response format (0 = Strongly Agree, 1 = Somewhat Agree, 2 = Neither Agree nor Disagree, 3 = Somewhat Disagree, 4 = Strongly Disagree, 5 = Not Applicable). Thus, each item may have an assigned score of 0-4 (no score for “Not Applicable”). Scores on the Transition Intervention Program - Readiness for Transition (TIP-RFT) summary scale will have possible ranges of 0-88 total, including scores on subscales of 0-24 for the Healthcare Knowledge and Skills Scale, 0-16 for the Education and Vocation Planning Scale, 0-16 for the Social Support Skill Set, and 0-32 for the Independent Living Skills Scale. Item #23 should not be scored.

The TIP-RFT construct validity was reflected in findings that higher scores were positively correlated with older age and living independently. To date, sufficient data has not been collected to determine the TIP-RFT’s sensitivity to change over time or what determines a “passing” score on the TIP-RFT, one that is correlated with successful long-term transition outcomes. However, there are published norms for the TIP-RFT in three populations.

The TIP-RFT may be administered alone or in combination with other validated or recommended sickle cell disease (SCD) assessment instruments, depending on the needs of the user. The authors strongly recommend collecting along with the TIP-RFT socio-demographic information, including age, race/ethnicity, health insurance, educational level and employment status, and living arrangements (added as item #23), as well as reported SCD diagnosis, to provide context in interpreting results. They recommend computing descriptive statistics, including means, standard deviations and frequencies to summarize results of the TIP-RFT. They recommend analysis of sociodemographic (age, gender, race/ethnicity, insurance status [public or private], education, employment and living situation) and clinical (SCD diagnosis) characteristics of all samples.

Although there are no sensitivity-to-change-over-time studies, they recommend administration of the TIP-RFT annually, as part of routine care, during clinic visits. As a matter of practice, they recommend no formal retesting using the TIP-RFT until 1 year of individualized skill and educational assistance. They recommend re-testing 1 year from the previous test date.

The first administration of the TIP-RFT should occur when the patient is both at least age 15 and entering at least their sophomore year of high school. If a patient is 15 years old but is not entering their sophomore year, they should not receive the assessment until their sophomore year of high school.

Review each section of the TIP-RFT assessment with the patient and make sure they understand that all the questions in each category need to be completed. Stay in the room with the patient to answer any questions regarding the TIP-RFT assessment. If parents wish to stay in the room, they must be instructed not to provide any answers to the patient or prompt or discuss answers with the patient.

Availability

Available

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Protocol

Sickle Cell Transition Intervention Program - Readiness for Transition (TIP-RFT)

Health Care Knowledge and Skills - Medical Skill Set

How much do you know about sickle cell? Do you know how to manage your own health care? How to talk to doctors? Take a few minutes to identify your areas of strength and highlight where there is room to grow!

I understand behaviors that can cause a pain episode.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I can answer my doctors questions during my clinic visits.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I keep track of my medical appointments.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know how to take my medicines (time, dosage, and frequency) without help.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I am aware of what hydroxyurea is and how it affects sickle cell disease. (If you are not taking this medicine please check: Not Applicable)
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I understand how drugs, alcohol, and tobacco usage affect sickle cell disease.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:

Education and Vocation Planning - Educational/Vocational Skill Set

Are you ready for your future? Do you have a 504 plan or IEP? Take a few minutes to identify your areas of strength and highlight where there is room to grow!

I have a vision for my future.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I plan to attend college or obtain post high school training.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know the types of work situations that could cause problems related to sickle cell disease.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I have talked to my parents about my hopes for the future.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:

This checklist is used with permission by Shirley A. Johnson, BA, LSW, Jean Radcliff-Shipman, BS, and Mitzi K. Glass, LCSW. Use of Attribution Only.

Social Support Skill Set

Do you have the social supports you need? Take a few minutes to identify your areas of strength and highlight where there is room to grow!

I participate in activities at school and/or outside the home.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I have friends that I can talk to about sickle cell disease.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I have a good social “support” system.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I understand what “healthy relationships” are.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:

This checklist is used with permission by Shirley A. Johnson, BA, LSW, Jean Radcliff-Shipman, BS, and Mitzi K. Glass, LCSW. Use of Attribution Only.

Independent Living Skill Set

Are you ready to do it on your own? Take a few minutes to identify your areas of strength and highlight where there is room to grow!

I know how to manage money and pay a bill.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know how to get my prescriptions filled.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know how to make my own doctors’ appointments.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I can arrange transportation to my medical appointments on my own.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know how to write a check.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I know how to use an ATM card.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I have held a full or part-time job.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
I go to my doctor’s appointments on my own.
[ ] Strongly Agree

[ ] Somewhat Agree

[ ] Neither Agree nor Disagree

[ ] Somewhat Disagree

[ ] Strongly Disagree

[ ] Not Applicable

Comments:
What best describes my current living arrangement?
[ ] I live independently in my own apartment, dorm, or private residence

[ ] I share an apartment or residence with someone outside of my family

[ ] I live with my parents

[ ] I live with other family members

[ ] I have other living arrangements (Please describe _________________

___________________________________________________________)

This checklist is adapted from materials developed by Children’s Hospital, Boston as part of the Massachusetts Initiative.

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, Adult

Participants

Adolescents, teens, and young adults (age 15-25) with sickle cell disease under the care of a pediatric provider.

Selection Rationale

This is a 22-item, self-administered, sickle cell–specific, validated tool. It is comprehensive with questions around education, vocation, and social support, giving it strong research relevance.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

Not applicable

Process and Review

Not Applicable

Protocol Name from Source

Sickle Cell Transition Intervention Program - Readiness for Transition (TIP-RFT)

Source

Treadwell, M., Johnson, S., Sisler, I., Bitsko, M., Gildengorin, G., Medina, R., Barreda, F., Major, K., Telfair, J., & Smith, W. (2015). Development of a sickle cell disease readiness for transition assessment. International Journal of Adolescent Medicine and Health, 27(2), 1-8. doi:10.1515/ijamh-2015-0010

General References

Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14(7), 570-576. doi:10.1016/1054-139x(93)90143-d.

Debaun, M. R., & Telfair, J. (2012). Transition and sickle cell disease. Pediatrics, 130(5), 926-935. doi:10.1542/peds.2011-3049

Jordan, L., Swerdlow, P., & Coates, T. D. (2013). Systematic review of transition from adolescent to adult care in patients with sickle cell disease. Journal of Pediatric Hematology/Oncology, 35(3), 165-169.

Smith, W. R., Johnson, S., & Treadwell, M. (N.d.). User Manual for the Transition Intervention Program - Readiness for Transition Instrument, the Tier Questionnaires, and Related Survey Batteries.

Protocol ID

870901

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX870901_Transition_Readiness_Answer_Doctors_Questions_During_Clinical_Visits
	PX870901020000	"I can answer my doctor's questions during more my clinic visits." show less	N/A
PX870901_Transition_Readiness_Answer_Doctors_Questions_During_Clinical_Visits_Comments
	PX870901020100	"I can answer my doctor's questions during more my clinic visits. Comments:" show less	N/A
PX870901_Transition_Readiness_Arrange_Transportation_Medical_Appointments
	PX870901180000	"I can arrange transportation to my medical more appointments on my own." show less	N/A
PX870901_Transition_Readiness_Arrange_Transportation_Medical_Appointments_Comments
	PX870901180100	"I can arrange transportation to my medical more appointments on my own. Comments:" show less	N/A
PX870901_Transition_Readiness_Aware_Hydroxyurea_How_Affects_Sickle_Cell_Disease
	PX870901050000	"I am aware of what hydroxyurea is and how more it affects sickle cell disease. (If you are not taking this medicine please check: Not Applicable)" show less	N/A
PX870901_Transition_Readiness_Aware_Hydroxyurea_How_Affects_Sickle_Cell_Disease_Comments
	PX870901050100	"I am aware of what hydroxyurea is and how more it affects sickle cell disease. (If you are not taking this medicine please check: Not Applicable) Comments:" show less	N/A
PX870901_Transition_Readiness_Best_Describes_Current_Living_Arrangment
	PX870901230000	"What best describes my current living more arrangement?" show less	N/A
PX870901_Transition_Readiness_Best_Describes_Current_Living_Arrangment_Other_Write
	PX870901230100	"What best describes my current living more arrangement? I have other living arrangements (Please describe _________________)" show less	N/A
PX870901_Transition_Readiness_Friends_Talk_About_Sickle_Cell_Disease
	PX870901120000	"I have friends that I can talk to about more sickle cell disease." show less	N/A
PX870901_Transition_Readiness_Friends_Talk_About_Sickle_Cell_Disease_Comments
	PX870901120100	"I have friends that I can talk to about more sickle cell disease. Comments:" show less	N/A
PX870901_Transition_Readiness_Good_Social_Support_System
	PX870901130000	"I have a good social "support" system."	N/A
PX870901_Transition_Readiness_Good_Social_Support_System_Comments
	PX870901130100	"I have a good social "support" system. Comments:"	N/A
PX870901_Transition_Readiness_Go_Doctors_Appointments
	PX870901220000	"I go to my doctor's appointments on my own."	N/A
PX870901_Transition_Readiness_Go_Doctors_Appointments_Comments
	PX870901220100	"I go to my doctor's appointments on my own. more Comments:" show less	N/A
PX870901_Transition_Readiness_Held_Full_Part_Time_Job
	PX870901210000	"I have held a full or part-time job."	N/A
PX870901_Transition_Readiness_Held_Full_Part_Time_Job_Comments
	PX870901210100	"I have held a full or part-time job. Comments:"	N/A
PX870901_Transition_Readiness_Keep_Track_Medical_Appointments
	PX870901030000	"I keep track of my medical appointments."	N/A
PX870901_Transition_Readiness_Keep_Track_Medical_Appointments_Comments
	PX870901030100	"I keep track of my medical appointments. more Comments:" show less	N/A
PX870901_Transition_Readiness_Know_How_Get_Prescriptions_Filled
	PX870901160000	"I know how to get my prescriptions filled."	N/A
PX870901_Transition_Readiness_Know_How_Get_Prescriptions_Filled_Comments
	PX870901160100	"I know how to get my prescriptions filled. more Comments:" show less	N/A
PX870901_Transition_Readiness_Know_How_Make_Doctors_Appointments
	PX870901170000	"I know how to make my own doctors' appointments."	N/A
PX870901_Transition_Readiness_Know_How_Make_Doctors_Appointments_Comments
	PX870901170100	"I know how to make my own doctors' more appointments. Comments:" show less	N/A
PX870901_Transition_Readiness_Know_How_Manage_Money_Pay_Bill
	PX870901150000	"I know how to manage money and pay a bill."	N/A
PX870901_Transition_Readiness_Know_How_Manage_Money_Pay_Bill_Comments
	PX870901150100	"I know how to manage money and pay a bill. more Comments:" show less	N/A
PX870901_Transition_Readiness_Know_How_Take_Medicines_Without_Help
	PX870901040000	"I know how to take my medicines (time, more dosage, and frequency) without help." show less	N/A
PX870901_Transition_Readiness_Know_How_Take_Medicines_Without_Help_Comments
	PX870901040100	"I know how to take my medicines (time, more dosage, and frequency) without help. Comments:" show less	N/A
PX870901_Transition_Readiness_Know_How_Use_ATM_Card
	PX870901200000	"I know how to use an ATM card."	N/A
PX870901_Transition_Readiness_Know_How_Use_ATM_Card_Comments
	PX870901201000	"I know how to use an ATM card. Comments:"	N/A
PX870901_Transition_Readiness_Know_How_Write_Check
	PX870901190000	"I know how to write a check."	N/A
PX870901_Transition_Readiness_Know_How_Write_Check_Comments
	PX870901190100	"I know how to write a check. Comments:"	N/A
PX870901_Transition_Readiness_Know_Types_Work_Situations_Cause_Problems_Related_Sickle_Cell_Disease
	PX870901090000	"I know the types of work situations that more could cause problems related to sickle cell disease." show less	N/A
PX870901_Transition_Readiness_Know_Types_Work_Situations_Cause_Problems_Related_Sickle_Cell_Disease_Comments
	PX870901090100	"I know the types of work situations that more could cause problems related to sickle cell disease. Comments:" show less	N/A
PX870901_Transition_Readiness_Participate_Activities_School_Outside_Home
	PX870901110000	"I participate in activities at school more and/or outside the home." show less	N/A
PX870901_Transition_Readiness_Participate_Activities_School_Outside_Home_Comments
	PX870901110100	"I participate in activities at school more and/or outside the home. Comments:" show less	N/A
PX870901_Transition_Readiness_Plan_Attend_Collage_Obtaon_Post_Highschool_Training
	PX870901080000	"I plan to attend college or obtain post more high school training." show less	N/A
PX870901_Transition_Readiness_Plan_Attend_Collage_Obtaon_Post_Highschool_Training_Comments
	PX870901080100	"I plan to attend college or obtain post more high school training. Comments:" show less	N/A
PX870901_Transition_Readiness_Talked_Parents_Hopes_Future
	PX870901100000	"I have talked to my parents about my hopes more for the future." show less	N/A
PX870901_Transition_Readiness_Talked_Parents_Hopes_Future_Comments
	PX870901101000	"I have talked to my parents about my hopes more for the future. Comments:" show less	N/A
PX870901_Transition_Readiness_Understand_Behaviors_Cause_Pain_Episode
	PX870901010000	"I understand behaviors that can cause a more pain episode." show less	N/A
PX870901_Transition_Readiness_Understand_Behaviors_Cause_Pain_Episode_Comments
	PX870901010100	"I understand behaviors that can cause a more pain episode. Comments:" show less	N/A
PX870901_Transition_Readiness_Understand_What_Healthy_Relationships_Are
	PX870901140000	"I understand what "healthy relationships" are."	N/A
PX870901_Transition_Readiness_Understand_What_Healthy_Relationships_Are_Comments
	PX870901140100	"I understand what "healthy relationships" more are. Comments:" show less	N/A
PX870901_Transition_Readiness_Understan_Drugs_Alcohol_Tobacco_Usage_Affect_Sickle_Cell_Disease
	PX870901060000	"I understand how drugs, alcohol, and more tobacco usage affect sickle cell disease." show less	N/A
PX870901_Transition_Readiness_Understan_Drugs_Alcohol_Tobacco_Usage_Affect_Sickle_Cell_Disease_Comments
	PX870901060100	"I understand how drugs, alcohol, and more tobacco usage affect sickle cell disease. Comments:" show less	N/A
PX870901_Transition_Readiness_Vision_My_Future
	PX870901070000	"I have a vision for my future."	N/A
PX870901_Transition_Readiness_Vision_My_Future_Comments
	PX870901070100	"I have a vision for my future. Comments:"	N/A

SCD Psychosocial and Social Determinants of Health

Measure Name

Sickle Cell Disease Transition Readiness

Release Date

February 6, 2023

Definition

The process of healthcare transition is defined as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered care to an adult-oriented care system.

Purpose

To evaluate whether a youth has mastered the necessary knowledge and skills along the path of successful transition to adult care and to facilitate conversations between patients, parents, and physicians.

Keywords

Transition, sickle cell disease, SCD, chronic conditions, Adolescents, teenagers, adult care, adolescent medicine

Measure Protocols

Protocol ID	Protocol Name
870901	Sickle Cell Disease Transition Readiness Assessment

Publications

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