Strengthening Pediatric pulmonary care through regional collaboration

1. Strengthening Pediatric pulmonary care through regional collaboration Lillian Ruiz Romero, MSW Trainee University of Arizona Pediatric Pulmonary Center May 2, 2017

2. Presentation Outline • Maternal & Child Health (MCH) Leadership Competency #11 • Needs Assessment Purpose/Importance • Role of the Pediatric Pulmonary Center (PPC) • Project Timeline • Needs Assessment Survey • Data Results • Key Findings • Future Directions • Anticipated Outcomes

3. Maternal & Child HEalth Leadership Competency 11 • Working with Communities and Systems • Maternal and child health outcomes are shaped by variety of factors • Enhancing the health status of this population requires a coordinated, multi-agency response • Health leaders should think systemically (to understand the whole and the interaction of its parts) when addressing health challenges

4. Maternal & Child Health leadership competency 11 • Working with Communities and Systems • Collaboration among Title V organizations plays important role in maternal and child health promotion and disease prevention • Collaboration: a mutually beneficial and well-defined relationship of one or more organizations to achieve goals and act as one to solve an agreed upon issue • Partnerships between Title V agencies/related MCH organizations are especially worthwhile due to shared vision of child, family, and community health

5. Pediatric Pulmonary Needs Assessment for HRSA Region IX Title V Organizations

6. Importance of Needs Assessment • The number of children with chronic respiratory conditions is steadily increasing • Asthma, cystic fibrosis and sleep disordered breathing are the most common chronic respiratory conditions • The primary reason for hospitalization for children 15 and younger from 2005-2010 was respiratory illness

7. Importance of Needs Assessment • Growing prevalence of chronic respiratory conditions in children has expanded the need for health professionals trained in pediatric pulmonary care • Disease complexity and increasing racial and ethnic diversity require a health system approach that is interdisciplinary, culturally effective and family-centered

8. Pediatric Pulmonary Center (PPC) Mission Develop interdisciplinary leaders who serve to improve the health status of infants, children, and youth with chronic respiratory and sleep-related conditions

9. Pediatric Pulmonary center Goals • 1) Provide interprofessional leadership training for graduate and postgraduate level health professionals • 2) Provide services to children by facilitating family-centered, community-based, culturally appropriate comprehensive care • 3) Pursue basic science and clinical research questions relevant to pediatric lung disease • 4) Provide consultation and technical assistance in the planning and implementation of services at the local, state, regional, and national levels • 5) Provide relevant continuing education for health professionals at all levels

10. Resource Centers for pediatric pulmonary care

11. Title V • PPC is part of the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) • It is funded by Title V legislation through the Maternal and Child Health Block Grant to States • Title V purpose: improve the health of mothers, infants, children, and their families • Title V provides federal support to state health agencies and is the longest standing federal/state partnership in the nation

12. Title v • More than 50 million pregnant women, infants and children were served through Title V programs in 2014 alone • Of the individuals who have completed training programs funded by Title V: • 79% work in interdisciplinary maternal and child health settings • 76% work with underserved and vulnerable populations • 85% are in positions of leadership in maternal and child health • The University of Arizona PPC has trained over 350 professionals and served 7,500 pediatric patients since 2000

13. Region IX

14. Project Timeline • November 2016: Presented an initial version of the project at an on-line meeting of state MCH directors from Region IX • Winter Months 2016-2017: Developed Pediatric Pulmonary Needs Assessment for HRSA Region IX Title V Organizations using Survey Monkey • March 2017: Sent finalized assessment to Sheri Downing-Futrell, Region IX Project Officer, MCH Division of State and Community Health • April 2017: Assessment distributed to all 16 Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) directors in the region

15. Needs Assessment Survey 1) City, State 2) Agency name 3) Please describe your agency 4) Are children with chronic respiratory disease served by your organization? 5) Please mark all disciplines working with these populations. [RN, MD, RT, Pharm, SW, PT, Psych, RD, Other] 6) Do you feel your agency provides adequate training and education to employed providers on pediatric pulmonary care? 7) If no, please select from the following topics of interest you would like further training on for providing clinical care: [asthma, cystic fibrosis, tracheostomy, apnea, sleep disorders, food allergies, psychosocial issues, cultural sensitivity, medicine/treatment adherence, infant/adolescent nutrition] 8) Are there additional issues in pediatric pulmonary care that you would like your providers to learn more about?

16. Needs Assessment Survey 9) Do you feel you have adequate patient education materials for the following pediatric pulmonary areas? [asthma, cf, trach, apnea, sleep disorders, food allergies, psychosocial issues, med/tx adherence, cultural sensitivity, infant/adolescent nutrition] 10) If you selected “no” for any of the above, would you like assistance in developing these resources for your agency? 11) Are there additional pediatric pulmonary care resources you feel would be helpful for your agency/organization? 12) For any resources requested, would you need this information in languages other than English? 13) Would your agency be interested in participating in distance learning education on pediatric pulmonary care? 14) If your agency/organization would like to participate in a long distance training, do you have access to interactive audio/video technology? 15) May we contact you with information regarding upcoming training events? 16) Please provide any additional comments/feedback below.

17. Data Results Phoenix Children’s Hospital General pulmonology practice Arizona Department of Health Services: Office for Children with Special Health Care Needs Responsible for systems of care for families with children with special health care needs Commonwealth Healthcare Corporation Critical access hospital serving island community of 50,000

18. Data Results 100% of the responding organizations serve children with chronic respiratory disease 7 out of 8 do not feel their agency provides adequate training and education to employed providers on pediatric pulmonary care

19. Data Results If yes, please specify: Best practices for intubation for patients with Asthma, Prematurity, and Acute Respiratory Distress Syndrome (ARDS) Guidance for new asthma inhaler law in Arizona schools

20. Data Results If yes, please specify: Online resources (that can be printed without a fee) or copies of handouts used by specialists One page info graphics that are easy to read and understand

21. Data Results Are there additional pediatric pulmonary care resources you feel would be helpful for your agency/organization? • “Specialists to consult with over the phone” • “Since I have not seen any resources on the conditions listed above, any resources would be helpful” • “Links to presentations where specialists in their respective fields teach about the topics above would be useful” For any resources requested, would you need this information in resources other than English?

22. Data Results 100% of responding survey participants have access to interactive audio/visual technology 6of the 7responding participants agreed to be contacted about future training events

23. Key Findings • Considerable need exists for provider training and patient education resources related to pediatric pulmonary care within Region IX • Interdisciplinary training may be beneficial since a variety of disciplines from participating organizations care for children with chronic respiratory disease • The need for patient education materials in a number of languages other than English confirms that Region IX is diverse • While the majority of respondents were interested in distance learning, live training events may not be feasible due to substantial time differences within RegionIX

24. Future Directions • Update questionnaire to clarify wording of training topics of interest and patient education material areas • Reach out to individual MCH and CSCHN directors to identify all organizations receiving Title V funding in their state or territory • Send out second round of surveys to larger audience • Develop training resources according to the needs indicated by Title V grantees region-wide • Develop partnerships with individual organizations; provide consultation and continuing education according to their particular needs

25. Anticipated Outcomes • Strengthened partnerships between Region IX Title V organizations that provide services to children with chronic respiratory conditions • Ultimately improved pediatric pulmonary care at the systems level

26. References • Arizona Health Sciences Center. (2010). UA pediatric pulmonary center awarded $1.7M grant. Retrieved from https://uanews.arizona.edu/story/ua-pediatric-pulmonary-center-awarded-1-7m-grant. • Health Resources and Services Administration. (ND). Understanding title v of the social security act. Retrieved from http://www.amchp.org/AboutTitleV/Documents/UnderstandingTitleV.pdf • Keens, T. G. (2015). Choosing pediatric pulmonology. Retrieved from https://www.thoracic.org/professionals/career-development/residents-medical-students/choosing-pediatric-pulmonology.php • Maternal and Child Health Bureau (2016). Division of maternal and child health (mch) workforce development: Pediatric pulmonary centers (ppcs). Retrieved from https://mchb.hrsa.gov/training/documents/fs/factsheet-PPC.pdf • MCH Interdisciplinary Education in Pediatric Pulmonary Centers. (2015). University of arizona training grant: Goals and objectives. Retrieved from https://mchb.hrsa.gov/training/project_info.asp?id=373. • MCH Leadership Competencies Workgroup. (2009). Maternal and child health leadership competencies. Retrieved from http://devleadership.mchtraining.net/mchlc_docs/mch_leadership_comp_3-0.pdf. • U.S. Census Bureau. (2013) Language use in the united states: 2011. Retrieved from https://www.census.gov/prod/2013pubs/acs-22.pdf. • US Department of Health and Human Services (ND). Title v maternal and child health services block grant to states program. Retrieved from https://mchb.hrsa.gov/sites/default files/mchb/MaternalChildHealthInitiatives/TitleVblockgrantguidanceappendix.pdf

27. Questions or Comments? Developed by Lillian Ruiz Romero, BA, MSW intern, UA PPC Social Work Trainee under the supervision of Mary McGuire, MSW, Pediatric Pulmonary Center Social Work Faculty. Support (in part) by the Maternal and Child Health Bureau, HRSA, Grant #T72MC00012

28. Thank You! • Thank you to Lisa Rascon, Mary McGuire, Melanie Esher, and Patty Settle who provided input on this project • Thank you also to the Maternal and Child Health Bureau and to Dr. Cori Daines and the rest of the University of Arizona PPC team for their investment in their trainees!