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28 results on '"Dosa, Nienke P."'

3. Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Author

Dosa, Nienke P., primary, Ahmed, Yakob S., additional, Alriksson-Schmidt, Ann, additional, Castillo, Heidi, additional, Contepomi, Silvana, additional, Locastro, Mary M., additional, Koning, Jan, additional, Koutsouras, George, additional, Kutwa, Elly, additional, Mahorta, Anjali, additional, MacFarland, Shade, additional, Öhrvall, Ann-Marie, additional, O’Neill, Patricia, additional, Overvelde, Anneloes, additional, Peny-Dahlstrand, Marie, additional, Shaw, Andrea, additional, Stockman, Jessica, additional, Tovar-Spinoza, Zulma, additional, and Castillo, Jonathan, additional

Published
2023
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4. Spina Bifida Global Learning Collaborative : Educating the next generation of clinicians, researchers, and advocates

Author

Dosa, Nienke P, Ahmed, Yakob S, Alriksson-Schmidt, Ann, Castillo, Heidi, Contepomi, Silvana, Locastro, Mary M, Koning, Jan, Koutsouras, George, Kutwa, Elly, Mahorta, Anjali, MacFarland, Shade, Öhrvall, Ann-Marie, O'Neill, Patricia, Overvelde, Anneloes, Peny-Dahlstrand, Marie, Shaw, Andrea, Stockman, Jessica, Tovar-Spinoza, Zulma, Castillo, Jonathan, Dosa, Nienke P, Ahmed, Yakob S, Alriksson-Schmidt, Ann, Castillo, Heidi, Contepomi, Silvana, Locastro, Mary M, Koning, Jan, Koutsouras, George, Kutwa, Elly, Mahorta, Anjali, MacFarland, Shade, Öhrvall, Ann-Marie, O'Neill, Patricia, Overvelde, Anneloes, Peny-Dahlstrand, Marie, Shaw, Andrea, Stockman, Jessica, Tovar-Spinoza, Zulma, and Castillo, Jonathan

Abstract

Purpose: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees. Methods: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content. Results: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings. Conclusion: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.

Published
2023
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9. Population Pharmacokinetics of Oral Baclofen in Pediatric Patients with Cerebral Palsy

Author

He, Yang, Brunstrom-Hernandez, Janice E., Thio, Liu Lin, Lackey, Shellie, Gaebler-Spira, Deborah, Kuroda, Maxine M., Stashinko, Elaine, Hoon, Alexander H., Jr., Vargus-Adams, Jilda, Stevenson, Richard D., Lowenhaupt, Stephanie, McLaughlin, John F., Christensen, Ana, Dosa, Nienke P., Butler, Maureen, Schwabe, Aloysia, Lopez, Christina, Roge, Desiree, Kennedy, Diane, Tilton, Ann, Krach, Linda E., Lewandowski, Andrew, Dai, Hongying, Gaedigk, Andrea, Leeder, Steven J., and Jusko, William J.

Published
2014
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15. Genetic epidemiology of neural tube defects

Author

Lupo, Philip J., primary, Agopian, A.J., additional, Castillo, Heidi, additional, Castillo, Jonathan, additional, Clayton, Gerald H., additional, Dosa, Nienke P., additional, Hopson, Betsy, additional, Joseph, David B., additional, Rocque, Brandon G., additional, Walker, William O., additional, Wiener, John S., additional, and Mitchell, Laura E., additional

Published
2017
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16. Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

Author

Hsieh, Michael H., primary, Wood, Hadley M., additional, Dicianno, Brad E., additional, Dosa, Nienke P., additional, Gomez-Lobo, Veronica, additional, Mattoo, Tej K., additional, Misseri, Rosalia, additional, Norton, Jenna M., additional, Sawin, Kathleen J., additional, Scal, Peter, additional, Wright, James E., additional, Star, Robert A., additional, and Bavendam, Tamara, additional

Published
2017
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19. Life course health and healthcare utilization among adults with spina bifida.

Author

Liptak, Gregory S, Robinson, Laura M, Davidson, Philip W, Dziorny, Adam, Lavalley, Rebecca, Flaherty, Mary Grace, and Dosa, Nienke P

Subjects
SPINA bifida, WELL-being, PRIMARY care, PRESSURE ulcers, HYDROCEPHALUS, HEALTH of adults, CEREBROSPINAL fluid shunts, COGNITION disorders, HEALTH status indicators, HOSPITAL care, MEDICAL care, SEX distribution, SURVEYS, DISEASE prevalence, THERAPEUTICS
Abstract

Aim: To evaluate the prevalence of organ system disorders and describe healthcare utilization among adults with spina bifida at a regional clinic.Method: This study was a structured chart review using the Rochester Health Status Survey-IV. 65 males, 57 females aged 16 to 59 years were seen at the Spina Bifida Center of Central New York between January 2007 and December 2008 (annual hospitalization rate was 15 out of 100).Results: Hospitalizations and acute outpatient visits were associated with having shunted hydrocephalus, whereas visits to the emergency department were associated with having a decubitus ulcer. Logistic regression models revealed that older adults made proportionately fewer visits to primary care providers than younger adults (odds ratio 0.919; p=0.02). Yet for every 1-year increase in age, the odds of being hospitalized increased by 5% (odds ratio 1.051; p=0.03).Interpretation: Adults with spina bifida have multiple organ-system disorders. They have greater difficulty accessing services, and utilize emergency and inpatient healthcare at higher rates than the general population. In the future, adults with spina bifida will require access to more medical care and preventive services if they are to have optimal health, well-being, and functioning. [ABSTRACT FROM AUTHOR]

Published
2016
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27. Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association

Author

Dicianno, Brad E., Beierwaltes, Patricia, Dosa, Nienke, Raman, Lisa, Chelliah, Jerome, Struwe, Sara, Panlener, Juanita, and Brei, Timothy J.

Abstract

We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span.

Published
2020
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28. Mother knows best: medical record management for patients with spina bifida during the transition from pediatric to adult care.

Author

Østerlund CS, Dosa NP, and Arnott Smith C

Subjects
Adolescent, Adult, Female, Focus Groups, Humans, Interviews as Topic, Male, Medicine, Parents, Patient Access to Records, Pediatrics, Pilot Projects, Qualitative Research, Self Care, Specialization, Continuity of Patient Care, Medical Records, Spinal Dysraphism
Abstract

The personal health record has potential to improve health care transition for an emerging population of pediatric patients with complex chronic conditions who survive to adulthood. In this study qualitative techniques were used to assess how young adults with spina bifida and their parents interact with their medical records. Condensation and categorization strategies for inductive research based on Grounded Theory were used to analyze 1) Who is involved in record keeping 2) How the information is stored 3) What information is kept and shared among the different constituencies and 4) When patients and parents need the information. Theme analysis revealed that mothers play a central role in the medical record management of adolescents with spina bifida. The parent-maintained home based records served as a linking pin in a heterogeneous healthcare information environment. These records tended to be organized as time-lines. Parent and patients were concerned about how best to transition their health information management from parent to adult children. Patients and parents uniformly supported the idea of having access to the medical record on-line.

Published
2005

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