A COLLABORATIVE PROJECT WITH EMORY’S LIBRARY & INFORMATION TECHNOLOGY SERVICES, HEMOPHILIA OF

GEORGIA, AND THE COMPREHENSIVE BLEEDING DISORDERS CENTER AT CHOA AND EMORY UNIVERSITY

TRANSIT 2.0 An online transition support tool for multidisciplinary care teams to engage, empower and impart knowledge of bleeding disorders to youth and their families

OUTLINE

• Background

• Project Goal and Objectives

• Theoretical foundation

• Website content

• End users and Features

• Evaluation

• Progress update

• Next steps

• Future directions

• Website demonstration

BACKGROUND: TRANSITION

• Healthcare focus: Process of transferring care from pediatric to adult providers

• Life stages focus: Transition from childhood to adulthood

with the capacity for self management of bleeding disorder

BACKGROUND: SUCCESSFUL TRANSITION

• Crucial to future health and psychosocial outcomes1

• Self-management of medical condition improves treatment adherence, overall health and quality of life2

• Transition readiness is associated with perceived self-efficacy in medical visits3

1. Van Staa AL, et al. Child: care, health and development. 2011;37(6):831-832.2. Berg K. Child Care Health Dev. 2011;37(6):800-805.3. Van Staa AL, et al. Journal of Adolescent Health. 2011;(48);295-302.

BACKGROUND: INTERNET AND EHEALTH

• Youth use Internet as primary health education resource1

• Effective in delivering healthcare messages to adolescents1

• Interactive health educational tools are preferred by youth and improve knowledge, practical skills and confidence with healthcare providers1,2

• Internet users are more self-efficacious in the healthcare arena than non-users2,3

1. Gray NJ, et al. Soc Sci Med. 2005;60:1467-78.2. Huang, et al. Pediatrics. 2014;e1639-46.3. Mulders G, et al. Haemophilia. 2012;18:693-8.

BACKGROUND: HEMOPHILIA-SPECIFIC RESEARCH

• Youth with hemophilia identify need for online education and support with life transitions, yet little exists1

• Adolescents are comfortable with accessing medical information, social networking, and playing games online1

• Needs identified: website with experiential videos, pictures, educational games and quizzes2

• Youth recommend parent-specific education and support via website3

1. Breakey VR, et al. Haemophilia. 2014;1-10.2. Sterling L, et al. Haemophilia. 2012;216-221.3. Breakey VR, et al. Haemophilia. 2013;1-14.

CONSIDERATIONS

Knowledge and skills

• What is it that they need to know and be able to do in order to successfully self-manage?

Operationalize a process

• How to develop an effective transition support tool?

• How is information shared?

• How to implement a curriculum across multiple settings

Assessment

• How do we know that a child is on track?

PROJECT GOAL & OBJECTIVES

Goal: • To create a website to be used by patients, family members, and

healthcare providers to facilitate the acquisition- by patients with hemophilia- of the skills, knowledge and attitudes believed to be necessary for their transitioning to young adulthood along with a greater awareness of the importance of transition of care.

Objectives:• Increase patient and family knowledge, skills and attitudes

necessary for independent self-care and successful transition to adulthood.

• Increase patient and family member awareness of transition education.

TRANSITTM

TRANSITTM TEAMComprehensive Bleeding Disorders Center at CHOA and Emory University

• Christine Kempton, MD, MSc Principal Investigator

• Jamilah Hill, LMSW, Social worker: Pediatrics

• Pam Bryant, Associate Director Emory HTC

• Shanna Mattis, MPH, Social Worker: Adults/Public Health Associate

Library & Information Technology Services

• Saundra Barrett, Lead web designer

• Aaron Fioca, Software engineer

• Trisha Wilson, Project Manager

Hemophilia of Georgia, Inc.

• Deniece Chevannes, MPH, MCHES, Dir. of Health Promotion and Evaluation

Comprehensive Bleeding Disorders

Center at CHOA and Emory: Pediatric

and Adult teams

Library & Information Technology

Services: Emory University

Hemophilia of Georgia

EMERGING FRAMEWORK FOR SUCCESSFUL TRANSITION

The Health Care Transition Research Consortium health care transition model; CL Betz et al, 2014.

Environment: Community resources and schools

Health Care System:Clinic, provider & accessibility factors

Family/Social Support:Family functioning, social support, social environment

Individual:Demographics, disease complexity & course, personality, self-management, self-advocacy

THEORETICAL FOUNDATION

Health Belief Model

• An individual’s health-related behaviors depend on their beliefs about the benefits and

barriers of that behavior as well as their self-efficacy in performing the activity

• Used in developing interventions to increase

healthcare compliance and in secondary prevention efforts

Diffusion of Innovations

• Used to introduce an idea,

behavior or product to target

populations

• New or innovative idea or behavior is key to adoption

• Categorizes individuals as different types of adopters and provides strategies to introduce

innovation to each type

CONTENT DEVELOPMENT

• Current focus on ages 9-12 and their parents/caregivers

• 36 Learning modules mirror NHF Guidelines for Growing initiatives across

6 content areas:

◊ Social support ◊ Health and lifestyle

◊ Educational planning ◊ Self-advocacy and self-esteem

◊ Sexual health ◊ Independent health care behavior

• Mapped across topic, goal, age group, target audience, activity type

• Interactive content for patients and families

• Incorporate range of learning styles

• Links to existing community resources

HEALTH AND LIFESTYLE

SAFE SPORT• Goal: Understand which sports are safe for participation

and which are not

• Target audience: Both parents and children (9 years)

• Knowledge/Skill/Attitude: • Knowledge: Risk of each sport

• Attitude: Bleeding disorder does not preclude participation in sports

• Tasks: • View CDC/NHF Playing it Safe Video and publication

• Knowledge assessment

• Match activity with risk:

• High risk red light

• Low risk green light

• Prior to annual visit, HTC team can assign the task and then see what has been done

• At the HTC visit, staff member will reinforce information through active discussion

INNOVATION

• Interactive

• Collaborative approach to transition education: youth, caregiver(s), healthcare providers and community supports

• Assessing acquisition of knowledge and skills needed to manage a complex medical condition

• Shared responsibilities and accountability for monitoring and support

• Can be used across the life stages

• Mixed methods needs assessment: stakeholder interviews, focus group, site interviews

END USERS AND FEATURES

Patient

Games: Motivation and concept reinforcement

Rewards: Motivation and Engagement

Learning Modules: Impart knowledge in age-appropriate format

Tracks progress with assigned task

Parent/Caregiver

Views child’s progress

Joint completion of tasks

Sign off on activities

Learning Modules: Impart knowledge specifically for parents and caregivers

END USERS AND FEATURES

Providers

Track patient progress

Assign rewards to motivate and encourage

Assign and grade learning modules

Multidisciplinary communication

Administrators

Manage users

Assign learning modules

Add new content

EVALUATION: USABILITY AND PILOT TESTING

Usability Testing with 3 parent/child pairs completed early 2016 • Intuitive design

• Ease of learning

• Efficiency of use

• Memorability

• Error frequency and severity

• Subjective satisfaction

Pilot Testing 2.0 to start March/April 2017

• 3 month duration

• 10 to 13 parent/child pairs

• Usability of reimaged site

• Acquisition of knowledge: mapped to module content

• Changes in self-efficacy and transition readiness

• Hemophilia Self-Efficacy Scale (HSES)

• Transition Readiness Assessment Questionnaire (TRAQ)

DEVELOPMENT HURDLES

• Personal Health Information (Security)

• Turnover and synergy

• Website and API design: Hosting the site and for

whom?

• Gamification versus game

NEXT STEPS

Current project: 9-12 age group

• Further refine learning modules

• Audio recording for each module page

• Pilot testing

FUTURE DIRECTIONS

• Roll out the site to CHOA/Emory HTC patients 9-12 and their families

• Expand the scope of the project for 13-15 and 16-18

• Refine and further build out user experience for patients, parents and providers

• Evaluate long term changes in knowledge and skill acquisition

• Expand access to website to other sites within the region and later HTCs in other regions

Q&ALET’S LOOK AT THE SITE!

REFERENCES• Beeton K, Neal D, Watson T et al. Parents of children with haemophilia- a transforming experience. Haemophlia. 2007;13:570-9.

• Young G. From boy to man: recommendations for the transition process in haemophilia. Haemophilia. 2012;18 Suppl 5:27-32.

• Sterling LE, Nyhof-Young J, Blanchette VS, Breakey VR. Growing up with hemophilia: assessing teens’ experiences and needs during transition to adult health care. Univ Toronto Med J. 2012;90:146-51.

• Lindvall K, Colstrup L, Wollter I, Klemenze G, Loogna K, Gronhaug S, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47-51.

• Adegbola M. Spirituality, self-efficacy, and quality of life among adults with sickle cell disease. Southern Online Journal of Nursing Research. 2011;11:1.

• Van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child: care, health and development. 2011;37(6):831-832.

• Young G. Transitioning issues in adolescent to young adult hemophilia patients with inhibitors: an approach for a growing population. Blood Coagul Fibrinolysis. 2010;21 (Suppl 1):S7-S10.

• Geerts E, Vand de Wiel H, Tamminga R. A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health-related Quality of Life. Haemophilia. 2008;14:1007-13.

• Breakey VR, Blanchette VS, Bolton-Maggs PH. Towards comprehensive care in transition for young people with haemophilia. Haemophilia. 2010; 16(6):848-857.

• Berg K. Sustainable transition process for young people with chronic conditions: a narrative summary on achieved cooperation between paediatric and adult medical teams. Child Care Health Dev. 2011;37(6):800-805.

• Van Staa AL, Van derStege HA, Jedeloo SMoll HA, and Hilberink SR. Readiness to Transfer to Adult Care of Adolescents with Chronic Conditions: Exploration of Associated Factors. Journal of Adolescent Health. 2011;(48);295-302.

• Gray NJ, Klein JD, Noyce PR, Sesslberg TS, Cantrill JA. Health information-seeking behavior in adolesce: the place of the internet. Soc Sci Med. 2005;60:1467-78.

• Breakey VR, Ignas DM, Warias AV, White M, Blanchette VS and Stinson JN. A pilot randomized control trial to evaluate feasibility of an Internet-based self-management and transitional care program for youth with haemophilia. Haemophilia. 2014;1-10.

• Mulders G, DeWee EM, Nikbakht-Van De Sande MCVM, Kruip MJHA, Elfrink EJ, Leebeek FWG. E-learning improves knowledges and practical skills in haemophilia patients on home treatment: a randomized control trial. Haemophilia. 2012;18:693-8.

• Fleisher L, Bass S, Ruzek SB et al. Relationships among internet health information use, patient behavior and self-efficacy in newly diagnosed cancer patients who contact the National Canter Institute’s(NCI) Atlanta Region Cancer Information Service(CIS). AMIA Annu Symp Proc. 2002:260-4.

• Huang JS, Terrones L, Tompane T, Dillon L, Pian M, Gottschalk M, Norman GJ and Bartholomew LK. Preparing Adolescents With Chronic Disease for Transition to Adult Care: A Technology Program. Pediatrics. 2014;133;e1639.

• Breakey et al. The value of usability testing for Internet-based adolescent self-management interventions: “Managing Hemophilia Online.” BMC Medical Informatics and Decision Making. 2013;13(113):1-14.

• Sterling L, Nyhof-Young J, Blanchette VS, Breakey VR. Exploring internet needs and use among adolescents with haemophilia: a website development project. Haemophilia. 2012;18(2):216-221.

• Simmons GM, Frick N, Wang A, Miller ME, Fragueiro D. Identifying information needs among children and teens living with haemophilia. Haemophilia. 2014;20:1-8.

• Boston University School of Public Health. Behavioral Change Models. The Health Belief Model. 22 January 2013. Available at http://sphweb.bumc.bu.edu/otlt/MPH-Modules/SB/SB721-Models/SB721-Models2.html, Accessed October 31 2014.

• Boston University School of Public Health. Behavioral Change Models. Diffusion of Innovation Theory. 22 January 2013. Available at http://sphweb.bumc.bu.edu/otlt/MPH-Modules/SB/SB721-Models/SB721-Models4.html, Accessed October 31 2014.