This pedeol_readme2.txt file was generated on 2022-01-27 by Radion Svynarenko ------------------- GENERAL INFORMATION ------------------- 1. Title of Dataset Effectiveness of concurrent car to improve pediatric and family outcomes at the end of life 2. Author Information Principal Investigator: Lisa C. Lindley , PhD, RN, FPCN, FAAN, Associate Professor, Nightingale Endowed Faculty Fellow College of Nursing, University of Tennessee, Knoxville Knoxville, TN, llindley@utk.edu Project Manager: Theresa L. Profant, College of Nursing, University of Tennessee, Knoxville, Knoxville, TN, tprofant@utk.edu Co-Investigators: Jennifer W. Mack, MD, MPH, Associate Professor of Pediatrics, Department of Pediatric Oncology and Division of Population Sciences, Dana-Farber Cancer Institute, Boston Children’s Hospital, Boston, MA 02214, Jennifer_mack@dfci.harvard.edu , ORCID #0000-0001-5791-4178 Jessica Keim-Malpass, PhD RN, Associate Professor, School of Nursing, University of Virginia Charlottesville, Virginia 22908, Jlk2t@virginia.edu, ORCID # 0000-0002-7035-8556 Pamela S. Hinds, PhD, RN, FAAN, The William and Joanne Conway Chair in Nursing Research, Executive Director, Department of Nursing Science, Professional Practice, and Quality Outcomes, Research Integrity Officer, Children’s National Hospital, Washington, D.C. 20010, Professor, Department of Pediatrics, The George Washington University, pshinds@childrensnational.org, ORCID #0000-0001-6491-6649 Melanie J. Cozad, PhD, Assistant Professor, Department of Health Services Policy and Management Center for Effectiveness Research in Orthopedics University of South Carolina Columbia, SC 29201, mcozad@mailbox.sc.edu, ORCID # 0000-0001-6023-6910 Annette Mendola, , PhD, HEC-C, Director of Clinical Ethics, Associate Professor, Department of Medicine, The University of Tennessee Medical Center, Knoxville, TN 37920, amendola@utmck.edu Kim Mooney-Doyle, PhD, RN, CPNP-AC, Assistant Professor, School of Nursing, Department of Family and Community Health, University of Maryland, Baltimore, MD 21201, Kmooney-doyle@umaryland.edu, ORCID # 0000-0001-8770-1165 Trainees: Radion Svynarenko, Ph.D.,post-doctoral fellow, College of Nursing, University of Tennessee, Knoxville, TN, rsvynare@utk.edu , ORCID # 0000-0002-7568-529X Mary Lou Clark Fornehed, Ph.D., RN, ACNP-BC Assistant Professor of Nursing, Whitson-Hester School of Nursing, Tennessee Technological University Cookeville, TN 38505 mcfornehed@tntech.edu , ORCHID # 0000-0003-0875-1215 Whitney L. Stone, BSN, RN, CPN, graduate research assistant, College of Nursing, University of Tennessee, Knoxville, TN, bjr135@vols.utk.edu Kerri A. Qualls, graduate research assistant, College of Nursing, University of Tennessee, Knoxville, kdeck@vols.utk.edu Jessica M. Laird, student assistant, College of Nursing, University of Tennessee, Knoxville jlaird4@vols.utk.edu Diba Seddighi, research assistant, College of Nursing, University of Tennessee, Knoxville, dseddigh@utk.edu Isaac Brennan Gillis, research assistant, College of Nursing, University of Tennessee, Knoxville, igillis@vols.utk.edu Kristen A. Carlosh, M.A., LPC-MHSP, McNair Scholar, School & Clinical Mental Health Counselor, Wellness Counselor: College of Law, Asst. Coordinator: Counseling Training Clinic, Doctoral Student, Couns. Ed. Program, Dept. Ed Psych & Coun, CEHHS, University of Tennessee-Knoxville, 423-915-9532, kcarlosh@gmail.com Consultants: Wendy C. Naumann, Ph.D., Consultant, Columbus, OH 43221, wendynaumannphd@gmail.com. Guoping Huang, Ph.D., Spatial Analysis Laboratory Director, University of Richmond, VA , (804) 287-6307, ghuang@richmond.edu Invited expert guests: Christopher Eaker, Associate Professor, Data Curation Librarian, University of Tennessee Libraries, John C. Hodges Library, Room 236, 865-974-4404, ceaker@utk.edu Christine A. Fortney, Martha S. Pitzer Center for Women, Children Youth, College of Nursing, The Ohio State University, Columbus, OH, US, fortney.19@osu.edu Lora Humphrey Beebe, PhD, RN, PMHNP-BC, FAAN Professor, College of Nursing University of Tennessee, Knoxville, Knoxville, Tennessee 37996 lbeebe1@utk.edu ORCID # 0000-0002-1774-5231 Robin Harris, Robin Harris PhD, ANP-BC, ACNS-BC, Clinical Associate Professor, College of Nursing, University of Tennessee, Knoxville, Knoxville, Tennessee 37996, rharri24@utk.edu 3. Date of data collection: From January 1, 2011, to December 31, 2013 4. Geographic location of data collection: USA 5. Information about funding sources that supported the collection of the data: The National Institute of Nursing Research and Office of the Director, grant number R01NR017848 (PI: Lindley). 6. Abstract/description of the dataset: Implementation of the section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) enabled children enrolled in Medicaid/Children's Health Insurance Program with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although concurrent hospice care became available more than a decade ago, little is known about the socio-demographic and health characteristics of children who received concurrent care; health care services they received while enrolled in concurrent care, their continuity, management, intensity, fragmentation; and the costs of care. The purpose of this study was to answer these questions using national data from the Centers of Medicare and Medicaid Services (CMS), which covered the first three years of ACA – from January 1, 2011, to December 31, 2013.The database included records of 18,152 children younger than the age of 20, who were enrolled in Medicaid hospice care in the sampling time frame. Children in the database also had a total number of 42,764 hospice episodes. Observations were excluded if the date of birth or death was missing or participants were older than 21 years. To create this database CMS data were merged with three other complementary databases: the National Death Index (NDI) that provided information on death certificates of children; the U.S. Census Bureau American Community Survey that provided information on characteristics of communities where children resided; CMS Hospice Provider of Services files and CMS Hospice Utilization and Payment files were used for data on hospice providers, and with a database of rural areas created by the Health Resources and Services Administration (HRSA). In total, 130 variables were created, measuring demographics and health characteristics of children, characteristics of health providers, community characteristics, clinical characteristics, costs of care, and other variables. 7: Keywords for the dataset (provide 3 - 5): concurrent hospice care, end‐of‐life care, hospice care, Medicaid, pediatric -------------------------- SHARING/ACCESS INFORMATION -------------------------- 1. Licenses/restrictions placed on the data: Data use agreement with the Centers of Medicare and Medicaid Services. No parts of the data can be shared. 2. Links to publications that cite or use the data: 1.Cozad, M., Lindley, L. C., Eaker, C., Carlosh, K. A., & Profant, T. L. (2019). Debunking myths about health insurance claims data for public health research and practice. American Journal of Public Health, 109(11), 1584–1585. https://doi.org/10.2105/AJPH.2019.305317 2. Keim-Malpass, J., Cozad, M. J., Svynarenko, R., Mack, J. W., & Lindley, L. C. (2021). Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013. Journal for Specialists in Pediatric Nursing, e12333. https://doi.org/10.1111/jspn.12333 3. Laird, J., Cozad, M. J., Keim-Malpass, J., Mack, J. W., & Lindley, L. C. (2020). Variation in state Medicaid implementation of the ACA: The case of concurrent care for children. Health Affairs, 39(10), 1770–1775. https://doi.org/10.1377/hlthaff.2020.01192 4. Lindley, L. C., Cozad, M. J., & Fortney, C. A. (2020). Pediatric complex chronic conditions: Evaluating two versions of the classification system. Western Journal of Nursing Research, 42(6), 454–461. https://doi.org/10.1177/0193945919867266 5. Lindley, L. C., Cozad, M. J., Mack, J. W., Keim-Malpass, J., Svynarenko, R., & Hinds, P. S. (2021). Effectiveness of pediatric concurrent hospice care to improve continuity of care. The American Journal of Hospice & Palliative Care, 10499091211056040. https://doi.org/10.1177/10499091211056039 6. Lindley, L. C., Cozad, M. J., Svynarenko, R., Keim-Malpass, J., & Mack, J. W. (2021). A national profile of children receiving pediatric concurrent hospice care, 2011 to 2013. Journal of Hospice and Palliative Nursing, 23(3). 7. Lindley, L. C., & Fortney, C. A. (2019). Pediatric complex chronic conditions: Does the classification system work for infants? American Journal of Hospice and Palliative Medicine®, 104990911983898. https://doi.org/10.1177/1049909119838985 8. Lindley, L. C., Fortney, C. A., & Cozad, M. J. (2021). Predictive ability of an illness severity measure: Implications for nursing research. Journal of Nursing Measurement. https://doi.org/10.1891/JNM-D-19-00106 9. Lindley, L. C., Keim-Malpass, J., Cozad, M. J., Mack, J. W., Svynarenko, R., Fornehed, M. L. C., Stone, W., Qualls, K., & Hinds, P. S. (2022). A national study to compare effective management of constipation in children receiving concurrent versus standard hospice care. Journal of Hospice and Palliative Nursing: JHPN: The Official Journal of the Hospice and Palliative Nurses Association, 24(1), 70–77. https://doi.org/10.1097/NJH.0000000000000810 10. Lindley, L. C., Keim-Malpass, J., Svynarenko, R., Cozad, M. J., Mack, J. W., & Hinds, P. S. (2020). Pediatric concurrent hospice care: A scoping review and directions for future nursing research. Journal of Hospice & Palliative Nursing, 22(3), 238–245. https://doi.org/10.1097/NJH.0000000000000648 11. Lindley, L. C., Svynarenko, R., & Beebe, L. H. (2021). Mental health and developmental disabilities in US children admitted in hospice care. International Journal of Palliative Nursing, 27(3), 124–130. https://doi.org/10.12968/ijpn.2021.27.3.124 12. Lindley, L. C., Svynarenko, R., Mooney-Doyle, K., Mendola, A., Naumann, W. C., & Fortney, C. A. (2021a). End-of-life healthcare service needs among children with neurological conditions: A latent class analysis. The Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses. https://doi.org/10.1097/JNN.0000000000000615 13. Lindley, L. C., Svynarenko, R., Mooney-Doyle, K., Mendola, A., Naumann, W., & Keim-Malpass, J. (2021b). Patterns of health care services during pediatric concurrent hospice care: A national study. American Journal of Hospice & Palliative Medicine, 1–7. https://doi.org/10.1177/10499091211018661 14. Lindley, L. C., Svynarenko, R., & Profant, T. L. (2020). Data infrastructure for sensitive data: Nursing’s role in the development of a secure research enclave. Computers, Informatics, Nursing: CIN, 38(9), 427–430. https://doi.org/10.1097/CIN.0000000000000677 15. Mendola, A., Naumann, W. C., Mooney-Doyle, K., & Lindley, L. C. (2021). Social determinants of comfort: A new term for end-of-life care. Journal of Palliative Medicine, 24(8), 1130–1131. https://doi.org/10.1089/jpm.2021.0209 16. Mooney-Doyle, K., Keim-Malpass, J., Svynarenko, R., & Lindley, L. C. (2021). A comparison of young adults with and without cancer in concurrent hospice care: Implications for transitioning to adult health care. Journal of Adolescent and Young Adult Oncology. https://doi.org/10.1089/jayao.2021.0004 17. Stone, W., Keim-Malpass, J., Cozad, M. J., Fornehed, M. L. C., & Lindley, L. C. (2021). Pediatric end-of-life care in rural America: A systematic review. The American Journal of Hospice & Palliative Care, 10499091211064202. https://doi.org/10.1177/10499091211064202 18. Svynarenko, R., Beebe, L. H., & Lindley, L. C. (2021). Identifying patterns of pediatric mental and behavioral health at end of life: A national study. Journal of Hospice & Palliative Nursing, Publish Ahead of Print. https://doi.org/10.1097/NJH.0000000000000800 19. Svynarenko, R., & Lindley, L. (2021). Defining rurality in end-of-life research: Evaluation of common measures. The Journal of Health Care for the Poor and Underserved, 32(4), 2167–2180. https://doi.org/10.1353/hpu.2021.0189 20. Svynarenko, R., Mack, J. W., & Lindley, L. C. (2021). Differences in characteristics of children with cancer who receive standard versus concurrent hospice care. Pediatric Blood & Cancer. https://doi.org/10.1002/pbc.29106 3. Links to other publicly accessible locations of the data: Not applicable 4. Links/relationships to ancillary data sets: Not applicable 5. Was data derived from another source? If yes, list source(s): yes, from the Centers of Medicare and Medicaid Services (CMS) 6. Recommended citation for the data: Effectiveness of concurrent car to improve pediatric and family outcomes at the end of life --------------------- DATA & FILE OVERVIEW --------------------- 1. File List A. Filename: pedeol_codebook.pdf Short description: Data codebook inlcudes definitions of variables in the dataset, annotated list of bibliography, and algorithms on creating hospice episodes using software package STATA 15.0 2. Relationship between files: pedeol_codebook.pdf is the main file 3. Additional related data collected that was not included in the current data package: Not applicable 4. Are there multiple versions of the dataset? NO If yes, list versions: Name of file that was updated: i. Why was the file updated? ii. When was the file updated? Name of file that was updated: i. Why was the file updated? ii. When was the file updated? -------------------------- METHODOLOGICAL INFORMATION -------------------------- 1. Description of methods used for collection/generation of data: Data were provided by the CMS 2. Methods for processing the data: Described in detail in the pedeol_codebook.pdf 3. Instrument- or software-specific information needed to interpret the data: Stata 15.0, statistical software package 4. Standards and calibration information, if appropriate: Not applicable 5. Environmental/experimental conditions: Not applicable 6. Describe any quality-assurance procedures performed on the data: Quality-assurance procedures were performed by the CMS 7. People involved with sample collection, processing, analysis and/or submission: Not applicable ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: [FILENAME] ----------------------------------------- 1. Number of variables: 130 2. Number of cases/rows: Data set includes 18,152 children and 42,764 hospice episodes 3. Variable List: provided in the pedeol_codebook.pdf 4. Missing data codes: . missing data 5. Specialized formats of other abbreviations used Not applicable