Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up

Transcription

1 Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program Cecily L. Betz, PhD, RN, FAAN Professor of Clinical Pediatrics Keck School of Medicine Department of Pediatrics Director of Research/Director of Nursing Training USC University Center of Excellence at CHLA Health Care Transition Specialist, Movin On Up Health Care Transition Program, CHLA Spina Bifida Program Editor-in-Chief, Journal of Pediatric Nursing

2 Date March 18, 2017 Lecture title: Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program Speakers Name: Cecily L. Betz, PhD, RN, FAAN Professor of Clinical Pediatrics Keck School of Medicine Department of Pediatrics Does not intend to discuss commercial products or services. Does not intend to discuss non-fda approved uses

3 Movin On Up Research Team Cecily L. Betz, PhD, RN, FAAN Kathryn Smith, MN, DrPH, RN, Alex Van Speybroeck, MD, MPH Robert A. Jacobs, MD, MPH Natalie Rivera, MA Jeannie Lee, BS Saba Saghafi, BS Benjamin Nguyen, BS Hao To, BS

4 Movin On Up HCT Team Ronda Cellura, RN, BSN Laura Fernandez, RN, BSN Robert A. Jacobs, MD, MPH Maria Velasquez, MSW Justin Kennerly, PT Cheré Brown Dryden, MA, PT Yomaira Diaz Gisella Salguero

5 Background Health care transition (HCT) is gaining more attention during the past two decades. Widespread international efforts are underway to implement and test the effectiveness of HCT service models. The science and practice of HCT are in the seminal stages of development. Limited empirical support for provision of evidence-based services. Many gaps exist in the body of HCT science that are essential to the development of evidencebased HCT practice (Bloom et al., 2012; Betz, et al., 2013; Betz, et al., 2015; Chu et al., 2015; Coyne et al., 2017; Findley et al., 2015; Prior et al., 2014)

6 Purpose of Study Conduct a retrospective analysis of health care services provided to adolescents and emerging adults (AEA) in the Movin' On Up Health Care Transition Program. Explore associations between number of HCT conferences and HCT direct services and the following variables: Age groups Level of lesion Method of mobility Gender

7 Movin On Up Model Interventions Case Management Environment Domain Secondary and Postsecondary Educational System Community Services/Supports Health Care Systems Domain Clinic Characteristics Provider technical capability Access to primary care providers Teaching, Guidance Counseling Surveillance Treatment & Procedures Family/Social Support Domain Family/support/functioning Social Support Social Environment (poverty, neighborhood) Individual Domain Demographic characteristics Impairment: disease complexity and course Development & Function Personality Participation Self Management Self Advocacy Pediatrics Provider and System Access to Child Health Insurance AEA-Provider Relationship Integration into Adult Health Care Services Adult Provider and System Access to Adult Health Insurance AEA-Provider Relationship Dependence Adult Competencies (i.e. health care decision making) Independence Betz et al., 2014

8 Additional information on Movin On Up and HCTRC HCT Model Betz, C.L., Smith, K.A., & Van Speybroeck, A. Hernandez, F.V., & Jacobs, R.A. Movin' on Up: An Innovative Nurse-Led Interdisciplinary Health Care Transition Program. Journal of Pediatric Health Care, doi: 10.16/j.pedhc Betz, C.L., Ferris, M.E., Woodward, J.F., Okumura, M.J., Jan, S., & Wood, D.L, authoring group for the Health Care Transition Research Consortium. The Health Care Transition Research Consortium Health Care Transition Model: A Framework for Research and Practice. Journal of Pediatric Rehabilitation Medicine, 7, 3-15, doi: /PRM

9 Methods HCT Model A retrospective analysis of data ( to ) extracted from the charts of 146 adolescents and emerging adults (AEA), ages 9 to 20 who were provided services in the Movin' On Up Health Care Transition program in the CHLA Spina Bifida Program. Data extracted using the 41-item Spina Bifida Extraction Tool composed of these items: 29 demographic and clinical profile; number and type of services provided; number of disciplines involved in conferences. 9

10 Methods HCT Model Coding of HCT Services was based upon the HCT Research Consortium HCT and Omaha System frameworks. Reliability checks were conducted with independent comparison of all data extracted. Analysis consisted of frequencies, percentages and Chi-square tests 10

11 Sample Demographics Age Age Category* N (%) 146 (100%) Elementary School 27 (18.5%) Middle School 37 (25.3%) High School 68 (46.6%) Post-High School 14 (9.6%) Sex N (%) 146 (100%) Male 83 (56.8%) Female 63 (43.2%) Ethnicity N (%) ** 142 (100%) Hispanic Latino 94 (66.2%) Non-Hispanic Latino 1 (0.7%) Not Available 47 (33.1%) Missing 4 *Ages are as follow: Elementary School (9-10), Middle School (11-13), High School (14-18), Post High School (19-20) 11

12 Diagnoses Primary Diagnosis N (%)* 146 (100%) Myelomeningocele 118 (80.8%) Closed Neural Tube Defect 11 (7.5%) Lipodomyelomeningocele 5 (3.4%) Caudal Regression Syndrome 6 (4.1%) Other 5 (3.5%) Meningocele 1 (0.7%) Secondary Diagnoses N (%) 146 (100%) Neurogenic Bladder 135 (92.5%) Neurogenic Bowel 125 (85.6%) Paraplegia 121 (82.9%) Hydrocephalus 104 (71.2%) Intellectual Disabilities 37 (25.3%) * Total number included in study 12

13 Diagnostic Characteristics Shunt N (%) ** 138 (100%) Yes 104 (75.4%) No 34 (24.6%) Missing 8 Shunt Revision*** N (%) 96 (100%) Yes 52 (54.2%) No 44 (45.8%) Missing 8 Pressure Sore N (%) ** 137 (100%) Yes 40 (29.2%) No 97 (70.8%) Missing 9 ** Percentage is valid, does not includes missing variables *** Of patients that responded Yes to Shunt, how many have had Shunt Revision 13

14 Ambulatory Status Method of Mobility N (%) ** 140 (100%) Community Ambulatory 68 (49.6%) Non-Ambulatory 44 (32.1%) Household Ambulatory 13 (9.5%) Non-functional Ambulatory 12 (8.8%) Missing 9 ** Percentage does not includes missing variables 14

15 Interdisciplinary Care Conferences (N=315) Number of Conferences Gender Male (177) Female (138) Age Group Elementary School (44) Middle School (80) High School (163) Post High School (28)

16 Interdisciplinary Conferences 315 Disciplines Involved N Nursing 305 Social Work 292 Pediatrics 268 Occupational Therapy 212 Physical Therapy 207 Registered Dietician 79 16

17 Interdisciplinary Conferences 315 Problems/ Needs Identified/ Inferred N Individual Domain 315 Healthcare System Domain 296 Environmental Domain 285 Family/Social Support Domain 253 Type of Interventions N Teaching, Guidance, & Counseling 315 Surveillance 315 Case Management 314 Treatments & Procedures 16 17

18 Direct HCT Services (N=134) Number of Conferences Gender Male (88) Female (46) Age Group Elementary School (4) Middle School (25) High School (80) Post High School (25)

19 Services Provided by HCT Coordinator 134 Problems/ Needs Identified/ Inferred N Individual Domain 131 Family/Social Support Domain 121 Environmental Domain 114 Healthcare System Domain 97 Type of Interventions Teaching, Guidance, & Counseling 131 Surveillance 126 Case Management 119 Treatments & Procedures 4 19

20 Chi Square Analysis Chi square test was used to explore associations between number of HCT conferences and HCT direct services: Age groups Level of lesion Method of mobility Gender No significant differences were found with the following variables: level of lesion, method of mobility and gender Significant difference was found with the number of HCT conferences by age (p=0.007)

21 Conclusions HCT needs of AEA with SB are representative of a broad range of needs. HCT is a life-span and comprehensive process involving individual, family/social support/environmental and healthcare system domains. HCT is a model of care that primarily incorporates: teaching/guidance & counseling, surveillance, case management. HCT is based upon family centered/adolescent-centered framework involving an interdisciplinary plan of care. Transfer of care is a small component of HCT services. 21