Journal of Pediatric Rehabilitation Medicine - Volume 11, issue 4

Authors: Van Batavia, Jason P. | Weiss, Dana A. | Long, Christopher J. | Madison, Julian | McCarthy, Gus | Plachter, Natalie | Zderic, Stephen A.

Article Type: Research Article

Abstract: PURPOSE: The era of the electronic health record (EHR) generates the ability to systematically collect and record innumerable data for complex procedures such as videourodynamic studies (VUDS). We developed a Structured Data Entry System (SDES) that would serve as a way to better standardize VUDS for both quality improvement and research capabilities. METHODS: A working group convened to design a SDES form for VUDS in a flow sheet format in our hospital’s EHR, allowing for easy integration of the information into the clinical encounter note and for weekly export of data to clinicians in spreadsheet form. …RESULTS: Analysis of weekly VUDS data revealed that entries were missing in 3% of cells in all SDES forms completed. The availability of the data in an Excel spreadsheet allows for easy manipulation, calculation of clinical variables, and streamlined analysis in figures or graphs to identify patients at the highest risk. CONCLUSION: Designing and implementing a SDES based on a flowsheet that can allow data to be placed seamlessly in the clinical record and to be integrated into a searchable database for quality improvement and research purposes allows one to harness the true potential of the EHR. Show more

Keywords: Electronic medical records, standardized data entry system, urodynamics, pediatric urology, health information technology

DOI: 10.3233/PRM-170525

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 303-309, 2018

Authors: Sawin, Kathleen J. | Heffelfinger, Amy | Cashin, Susan E. | Brei, Timothy J.

Article Type: Research Article

Abstract: PURPOSE: Measuring self-management behaviors in adolescents and young adults with chronic health conditions has become a priority in health care, yet there is a paucity of instruments that capture these behaviors. The purpose of this psychometric study was to evaluate the reliability and validity of the 17-item generic Adolescent/Young Adult Self-Management and Independence Scale II (AMIS II). METHOD: Data were collected from 201 adolescents/young adults (AYA) with spina bifida and 129 of their parents. Exploratory factor analysis, confirmatory factor analysis, Cronbach alpha, frequencies, Pearson correlations, and intraclass correlations were used to evaluate the data. …RESULTS: The exploratory factor analysis of parent data supported two related self-management factors (Condition Self-Management and Independent Living Self-Management). Confirmatory factor analysis of AYA data confirmed these two factors and an overall scale with good fit statistics (GFI and CFI = 0.86–0.95; RMSEA = 0.057). Internal reliabilities ranged from α = 0.72–0.89. Intraclass correlation analysis supported the stability of the instrument (ICC parent report = 0.82, AYA report = 0.84). Concurrent validity was supported with low to moderate correlations to six related but distinct variables. CONCLUSION: Psychometric analysis supports this expanded measure of self-management for AYA with spina bifida. Evaluation of this instrument in AYA with other chronic health conditions is underway. Show more

Keywords: Adolescents, self-management, young adults, independent living behaviors, chronic health conditions

DOI: 10.3233/PRM-170479

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 311-322, 2018

Authors: Hopson, Betsy | Rocque, Brandon G. | Joseph, David B. | Powell, Danielle | McLain, Amie B. (Jackson) | Davis, Richard D. | Wilson, Tracey S. | Conklin, Michael J. | Blount, Jeffrey P.

Article Type: Research Article

Abstract: PURPOSE: To describe the development and implementation of the Children’s of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan. METHODS: In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols. RESULTS: Since …2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics. CONCLUSIONS: Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs. Show more

Keywords: Spina bifida, transition, care model, disability, care coordination

DOI: 10.3233/PRM-180548

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 323-334, 2018

Article Type: Other

DOI: 10.3233/PRM-180485

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 335-336, 2018

Article Type: Other

DOI: 10.3233/PRM-180486

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 337-340, 2018

Article Type: Other

DOI: 10.3233/PRM-180487

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 341-, 2018