1. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Michelle Fritsch, LMSW-ACP Mital Brahmbhatt, MHA, LMSW SHOW & SHARE EDUCATIONAL MATERIALS

2. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Extensive research exists regarding the importance of educational resources available to families facing any medical crisis. Disparities in Pediatric Oncology Patient Education and Linguistic Resources: Results of a National Survey of Pediatric Oncologists Article reports that although there is extensive education that is required of a new diagnosis of pediatric cancer yet little data exists on “the availability and linguistic competency of new diagnosis education” IS THERE RESEARCH?

3. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Working on a project that is focused on patient information, getting the family the right information, at the right time, and in the right way. Overall project goal: To develop a systematic, cost-effective educational and resource deployment system to ensure a truly personalized, family- center approach to the support of pediatric cancer patients and families. WHAT ARE WE DOING ?

4. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY WHAT IS THE PSYCHOSOCIAL DIVISION? Purpose of division: Improve patient and family psychological & social outcomes Improve the Psychological and Social competencies of Professionals, Teams & Volunteers Team Members: Dr. Ernest Fruge’, Ph.D (Director) Mital Brahmbhatt, MHA, LMSW (Manager) Michelle Fritsch, LMSW-ACP (Project Coordinator)

5. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY To assess current patient literature dissemination at TXCH across all populations. Want to know who is giving what patient literature, resources and when “According to pediatric oncologists, a disparity in educational and linguistic resources for new pediatric cancer diagnosis education exists depending on institution type and size.” Sloan, Jeremy S., Elizabeth Self, Debra Friedman, and Harry Heiman. “Disparities In Pediatric Oncology Patient Education and Linguistic Resources.” Pediatric Blood Cancer 61.2 (2013): 333-36. GOAL #1: INTERNAL INVESTIGATION

6. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Interviewed various team staff members to inquire about the literature they provide and the details surrounding that delivery GOAL #1: HOW DID WE DO THIS?

7. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Education is provided to patients and families but how and what is delivered varies widely across and within teams For example, team members do not know what education other providers are delivering to families Providers Know that education of patients and families is crucial Know what the patients and families they serve need …but, they are not aware of all the resources available to providers and families. No protocol is in place to specify what information each patient/family needs and who should provide that information No evaluation is in place to gauge the utility of information that is provided GOAL #1: WHAT DID WE FIND?

8. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY To identify all the available educational literature for pediatric hematology - oncology “Differences in availability and method of educational resources by institution size and type highlight the need to create dialogue and share resources to ensure that all newly diagnosed pediatric cancer patients receive high quality, patient and family-centered, culturally and linguistically appropriate education” Sloan, Jeremy S., Elizabeth Self, Debra Friedman, and Harry Heiman. “Disparities In Pediatric Oncology Patient Education and Linguistic Resources.” Pediatric Blood Cancer 61.2 (2013): 333-36. GOAL #2: WHAT IS AVAILABLE?

9. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY Explored all resources available (online and print) specifically in pediatric hem-onc Executed an exhaustive excel spreadsheet with all publications, web address for accessing, delivery system. Examined how to access literature via family request online, health care provider requesting, or available for purchase. GOAL #2: HOW DID WE DO THIS?

10. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY GOAL #2: WHAT DID WE FIND? Over 50% of the listed online resources had defunct links, information was not current, and/or listed organizations are no longer relevant Developed a current, exhaustive database of available literature for hem-onc. Designated personnel will be needed to keep this up-to-date

11. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY EXAMPLES OF ONLINE RESOURCES ResourceWeb AddressProvidesTopic Heading% of current links or resource referral Ped-Onc Resource Centerhttp://www.ped- onc.org/resources/supportorg.html listing of resources applicable to all onc; what is neutropenia, ANC calculator etc hair loss 55% Supprt for kids 50% Miscellaneoud 65% Teens 75% Bereavement 75% Transportation 70% Support 69%

12. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY EXAMPLES OF ONLINE RESOURCES ResourceWeb AddressTopic Heading% of current links or resource referral Children's Neuroblastoma Foundationhttp://www.cncfhope.orgAdvocacy 50% BMT Info 50% Caregivers- Advocacy & Support 70% Children as Patients 40% Clinical Trial 100% Financial 55% Financial - Govt 100% Health Insurance 62% Hearing Device Asst 33% Support for Parents & Patients 36% Survivorsship 43% Transportation 38%

13. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY WHAT ARE OTHERS DOING? GOAL #3: WHAT ARE OTHERS DOING? To contact nine top pediatric hem-onc institutions using a benchmark tool to gauge what’s happening around the nation regarding availability, access, and effectiveness of patient resources/literature

14. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY HospitalUS World & News Ranking COG member &use of handbook 2014 Newly Diagnosed per Year (reported by US World Report) Newly Diagnosed per Year (reported by SW) Materials Provided Boston Children's (inpt) Dana Farber (outpt) 1COG453300 in & outpatientown binder; own fact sheets: chemo, medication sheets, info. about line care, NGT. binder in spanish and arabic Cincinnati Children's2COG323? 1000COG book, plus handouts, Children's Hospital of Philadelphia 3COG & other 550 aroundExtensive. RN educator and SW meet with family, parent handbook given. Texas Children's Cancer Center 4COG499625parent handbook (COG), supplemental printable info from online groups Seattle children's5COG238250

15. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY GOAL #3: WHAT DID WE FIND? Benchmarking showed that all major pediatric heme/onc programs have difficulties effectively disseminating patient information. Each program uses different methods Each program uses different types of staff to provide information “Competing organizational priorities” is the most commonly identified barrier to effective patient education Supplemental finding: There is wide variation among program in the number and type of staff available to provide psychosocial services. Research indicates that: “Centralization of shared resources, including linguistic and culturally competent material, may be one mechanism to standardize and improve care across institutions caring for children with cancer.” Sloan, Jeremy S., Elizabeth Self, Debra Friedman, and Harry Heiman. “Disparities In Pediatric Oncology Patient Education and Linguistic Resources.” Pediatric Blood Cancer 61.2 (2013): 333-36.

16. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY ASSESSMENT OF EDUCATIONAL RESOURCES AVAILABLE ON THE INTERNET A vast array of PHO educational literature is available on the web from a variety of sources. Each organization utilizes the publications differently. For example, some institutions use publications as teaching tool and others refer to them and expect families to look up information as needed. Narrowing down which educational materials are applicable for the patient population is an enormous task. There are many sites for Brain Tumor information alone. Need to have medical personnel sanction which materials they want available to families. The materials also need to be assessed for comprehension level for families

17. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY SAMPLE LITERATURE DATABASE ResourceWeb AddressProvidesDistributorPrint or Download Bone Marrow Transplant Aplastic Anemia & MDS International Foundation http://www.aamds.orginfo and publications on bone marrow failure, etc. RN coordinatordownload and referrals Bone Marrow Foundationwww.bonemarrow.orgpublications, financial assistance and support services to BMT SWdownload and referrals Bone Marrow Transplant Information Network http://www.bmtinfonet.org/resources#Co rd everything BMT resources; cord blood, monthly newsletter, online support etc RN coordinatordownload and referrals BMT Linkhttp://www.nbmtlink.orgpublications, graft v host disease, survivorship, good resource RN coordinatordownload and referrals Center for International Blood & Marrow Transplant Research http://www.cibmtr.org/pages/index. aspx publications for patients and families ranging from data about transplant outcomes to best practice in follow up care RN coordinatordownload and referrals Explore BMT http://explorebmt.org/Home.aspx publications, resources available in 9 languages. RN coordinatordownload and referrals Gift Of Lifehttp://www.giftoflife.org/Pages/Facts- and-Figures.aspx BMT registry, facts and stats on registry etc. RN coordinatordownload and referrals National Bone Marrow Donor Programhttps://bethematch.orgeducational info on BMT, core blood, donor registry, etc RN coordinatordownload and referrals

18. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY GOAL #4: RESULTS Research supports service resource deployment systems. “Aligning available educational resources with parental and patient needs is of paramount importance to the provision of quality education.” From the interviews of staff inside and outside TCH it was discovered that the resources such as transportation, wish organizations, lodging, financial assistance, were important factors in the risk assessment. Families were at risk for psychosocial adjustment issues if they had less family and social support and were not educated on the medical issues they faced. Sloan, Jeremy S., Elizabeth Self, Debra Friedman, and Harry Heiman. “Disparities In Pediatric Oncology Patient Education and Linguistic Resources.” Pediatric Blood Cancer 61.2 (2013): 333-36.

19. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY SAMPLE SOCIAL SERVICES RESOURCE LIST OrganizationEligibilityContact InformationService American Council of the Blind blind/visual impairmentPhone: 800-424-8666 Phone: 202-467-5081 Internet: www.acb.orgwww.acb.org Membership organization, information and referral, advocacy, specific college scholarships, job listings on the web site, monthly magazine. American Foundation for the Blindblind/visual impairmentPhone: 800-232-5463 Phone: 212-502-7661 Internet: http://www.afb.org/http://www.afb.org/ Information requests, publications, talking books and other materials, disability specific scholarships. American Printing House for the Blind blind/ visual impairmentPhone: 502-895-2405 Internet: www.aph.orgwww.aph.orgCreates educational, workplace and lifestyle products and services for blind catalogs at no cost in print and on cassette Association for Education and Rehab of the Blind and Visually Impaired blind or visually impairedPhone: 703-823-9690 Internet: www.aerbvi.orgwww.aerbvi.org Email: aer@aerbvi.orgaer@aerbvi.org Disability specific scholarships, information and referral Association on Higher Education and Disability (AHEAD) blind/ visual impairmentPhone: 614-488-4972 Internet: www.ahead.orgwww.ahead.org Newsletter, bibliography of resources, employment exchange, journal Vision Council of America blind/visual impairmentPhone: 800-424-8422 (Mary Ellen McCann) Internet: www.visionsite.orgwww.visionsite.org Info on general eye care and specific eye diseases and conditions Blind Children’s Centerblind/ visual impairmentPhone: 800-222-3566 Internet: www.blindchildrenscenter.org www.blindchildrenscenter.org Infant-preschool level services in Los Angeles, CA, publications for teachers/parents Blinded Veterans Association blind child of a blinded veteranPhone: 800-669-7079 Phone: 202-371-8880 (Bridgett Jones) Email: bva@bva.orgbva@bva.org Internet: www.bva.orgwww.bva.org Disability specific scholarships

20. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY LONG TERM GOAL: PRECISION PSYCHOSOCIAL CARE Precision medical care exists Where is the Precision Psychosocial Care? Need a protocol type system to deliver the optimal psychosocial care at the precise time of the cancer journey

21. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY PLAN OF ACTION We have initiated a formal Program Planning Process to: Determine what information should to be given to each patient and family, at what time and by whom Determine the timeline and budget for the construction of a comprehensive and sustainable patient/family education system The resources and support services available in the community have been cataloged and are now available for printing by all teams – saving time for families and staff.

22. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY 73,700 Outpatient clinic visits per year 73,700 Outpatient clinic visits per year 3,060 Total New patients diagnosed each year 3,060 Total New patients diagnosed each year 625 New Oncology Patients per year 625 New Oncology Patients per year 2,435 New Hematology Patients per year 2,435 New Hematology Patients per year 4 Texas Locations 4 Texas Locations Houston Houston Katy Katy Woodlands (Fully open by April 2017) Woodlands (Fully open by April 2017) McAllen McAllen TXCH SERVICES BY THE NUMBERS:

23. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY CONCLUSION Need: a consortium or shared device to allow sharing of educational and resource information to pediatric hem-onc population.

24. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY REQUIRED DISCLOSURES Requirements for successful completion: You must attend the entire presentation You must sign the attendance roster You must complete and return the evaluation at the end of the presentation There are no conflicts of interest for this activity. There are no financial relationships or commercial interest in products or services related to this activity This activity is not co-provided There are no off-label products discussed

25. PSYCHOSOCIAL DIVISION, CANCER AND HEMATOLOGY COMMENTS/QUESTIONS?