Development of a Transition Skills Teaching Module for Adolescents

with Sickle Cell Disease

Jerlym S. Porter, PhD, MPH Assistant Member

Department of Psychology St. Jude Children’s Research Hospital

October 5, 2016

Survival in SCD

Hassell K, 2010.

Transition from Pediatric to Adult Care

• Unfortunately, many “get lost” in the system when moving from pediatric-centered to adult-centered care – Lack of insurance

– Insufficient providers

– Unpreparedness of young adults

• Transition programs – Increase their knowledge about SCD

– Improve their self-management skills

– Improve communication skills with medical team

– Provide them tools to identify both health-related and psychosocial resources to live independently

Preliminary Data

Porter, J et al., 2014.

Disease Self-Management

• Definition: Health behaviors and associated actions that patients and their families engage in to care for a chronic condition

• Most measures assess perception of disease knowledge and skills – do not test whether patient has actual knowledge and skills

• Purpose of the study was to develop a way to measure knowledge and skills

Modi, A et al., 2012.

Skills Lab Concepts

How to use insurance

How to fill a

prescription How to schedule an

appointment

PDSA Cycle • Plan – developing a plan to test the

change

• Do – carrying out the test

• Study – observing and learning from the consequences

• Act – determining what modifications should be made to the test

Skills Lab Cycle 1

• P=Idea

• D=Labs/questions

• S=Validate

• A=Redesigned

Cycle 1 Jan-Mar

2015

Very Unsure Unsure

Pretty Sure

Very Sure

Do you think you can find your insurance policy ID on your insurance card?

1 2 3 4

Do you think you can find your insurance co-pay amounts on your insurance card?

1 2 3 4

Do you think you can schedule an appointment with your doctor? 1 2 3 4

Do you think you can find the name and dose of your medicine by looking at the label?

1 2 3 4

Do you think you can tell if you have refills remaining on your prescription?

1 2 3 4

Do you think you can tell which medications should not be taken with your prescription by looking at the label?

1 2 3 4

Do you feel confident that you know what information your doctor’s office will need to schedule your first appointment?

1 2 3 4

Do you feel confident that you know what information your pharmacy will need to fill a new prescription?

1 2 3 4

Confidence Rating

Knowledge Pre/Post Test 1. What is the type of insurance listed on the card?

a. Aetna b. Cigna c. Tenn Care d. BlueCross

2. What is the policy ID number?

a. 2725500 b. 003858 c. YBC999999999 d. 8163953558

3. True or false. Call 1-888-989-8842 to check your benefits?

a. True b. False

4. The co-pay for an ER visit is ___; the co-pay for an office visit is___. a. $20; $20 b. $75; $20 c. $75; $40 d. $75; $75

5. This insurance pays for

a. all prescription costs. b. some prescription costs. c. no prescription costs. d. Can’t be determined without a separate prescription card.

1. What is the name of the medicine and how often do you take it? a. Ciprofloxacin 250mg, 2 pills one time a day b. Ciprofloxacin 500mg, 2 pill one time a day c. Captopril 10mg, 1 pill two times a day d. Ciprofloxacin 500mg, 1 pill two times a day e. Coumadin 5 mg, 1 pill two times a day

2. What drug(s) should you not take with this medicine?

a. Potassium containing medicine b. Hydroxyurea c. Lisinopril d. Antacids e. Acetaminophen

3. True or false. Call 1-800-820-2442 to reach this pharmacy?

a. True b. False

4. What should the pill look like?

a. A round tablet with CF 600 and G b. A white capsule shape tablet with CF 500 and G c. A pink capsule with CF 550 and G d. A round white tablet with C135 e. A purple capsule with 3 gold stripes

5. Does this prescription have refills remaining?

a. 1 refill remaining until 2/6/2016 b. 0 refills remaining until 2/6/2016 c. 9 refills remaining until 6/6/2015 d. 3 refill remaining until 12/7/2016 e. Unlimited refills remaining

Skills Lab Cycle 2

• P=Idea

• D=Labs/questions

• S=Validate

• A=Redesigned

Cycle 1 Jan-Mar

2015

• P=Lab

• D=Pilot

• S= Each lab

• A=Electronic

Cycle 2 Apr-Jul 2015

Skills Lab Cycle 3

• P=Idea

• D=Labs/questions

• S=Validate

• A=Redesigned

Cycle 1 Jan-Mar

2015

• P=Lab

• D=Pilot

• S= Each lab

• A=Digital

Cycle 2 Apr-Jul 2015

• P= Order

• D= CI

• S= Review

• A= Implement Order/Document

Cycle 3

Sep-Dec 2015

EMR Orders

EMR Documentation

16

17

EMR Documentation

EMR Documentation

18

Demonstration

Skills Lab

Implemented

Welcome to ABC Pharmacy. Please fill out the information below if you are new to our Pharmacy. First Name:________________________Middle Initial:______ Last Name:_______________________ Date of Birth___________________________ Type of Sickle Cell__________ Address:_______________________________________________________________________________________ City:________________________________State:__________________________Zip Code:________________ Preferred Phone number:___________________________________________________________________ Allergies:_____________________________________________________________________________________ Medications Currently taking:______________________________________________________________

Medical Conditions__________________________________________________________________________ ________________________________________________________________________________________________ If you have insurance, please give the card to a member of the pharmacy.

TEEN TRANSITION SKILLS LAB

THIS CERTIFIES THAT _______________________ has successfully accomplished the skills of scheduling a doctor’s

appointment, ordering medication refills, and identifying

important sections on a health insurance card.

Date: ______________

Skills Lab Representative:____________

Certificate of Completion

Preliminary Results

• 22 adolescents (range=15-18 years)

• 63.6% male

• Confidence scores (1:very unsure, 4:very sure)

– Pre-lab: M=2.91, SD=0.49

– Post-lab: M=3.59, SD=0.75

• Knowledge scores (13 items)

– Pre-test: M=8, SD=2.10

– Post-test: M=10, SD=1.51

What was the most important skill you learned today?

• “About insurance”

• “How to read my insurance card”

• “Meds”

• “Pharmacy making sure I have the right medicine”

• “How to use your insurance care to/and set up your appointments”

• “Make a doctor appointment”

• “Insurance”

• “How to read insurance cards”

How can Skills Lab be improved?

• “Easier”

• “It could be a little more hands-on”

• “It could be improved by helping more kids”

• “Get people from adult clinics and pharmacists to come and teach the patients too”

• “You get different thing”

• “I don’t really know. It was pretty lengthy but it was interesting”

Future Directions

• Continue implementation and assessment of process

• Assess long-term outcomes and predictors

• Add new modules

• Develop a web-based application to teach skills

Acknowledgements Hematology

• Sheila Anderson

• Patricia Barker

• Ashley Brown

• Yvonne Carroll

• Audrey Cole

• Jane Hankins

• Shyranda Jones

Psychology

• Jamilla Griffith

• Rebecca Rupff

• Kathryn Russell

• Justin Williams

Clinical Informatics

• Marjorie Champion

• Pamela Charles

Patients and Families

Thank you!