\u00a0Primary Responsibility Area<\/span><\/h4>\n<\/td>\n\n\u00a0Hospitals, Health Systems, and Practices<\/span><\/h4>\n<\/td>\n\n\u00a0Professional Societies *<\/span><\/h4>\n<\/td>\n\n\u00a0Hydrocephalus Association<\/span><\/h4>\n<\/td>\n<\/tr>\n<\/thead>\n\n\n\nProcesses and infrastructure for transition and longitudinal care<\/strong><\/span><\/h4>\n<\/td>\n1. Incorporate the Six Core Elements of Health Care Transition (HCT)<\/a>\u00a0 into the existing patient care processes.<\/span><\/p>\n2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.<\/span><\/p>\n <\/td>\n<\/tr>\n \n\nTraining<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
\u00a0Hospitals, Health Systems, and Practices<\/span><\/h4>\n<\/td>\n\n\u00a0Professional Societies *<\/span><\/h4>\n<\/td>\n\n\u00a0Hydrocephalus Association<\/span><\/h4>\n<\/td>\n<\/tr>\n<\/thead>\n\n\n\nProcesses and infrastructure for transition and longitudinal care<\/strong><\/span><\/h4>\n<\/td>\n1. Incorporate the Six Core Elements of Health Care Transition (HCT)<\/a>\u00a0 into the existing patient care processes.<\/span><\/p>\n2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.<\/span><\/p>\n <\/td>\n<\/tr>\n \n\nTraining<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
\u00a0Professional Societies *<\/span><\/h4>\n<\/td>\n\n\u00a0Hydrocephalus Association<\/span><\/h4>\n<\/td>\n<\/tr>\n<\/thead>\n\n\n\nProcesses and infrastructure for transition and longitudinal care<\/strong><\/span><\/h4>\n<\/td>\n1. Incorporate the Six Core Elements of Health Care Transition (HCT)<\/a>\u00a0 into the existing patient care processes.<\/span><\/p>\n2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.<\/span><\/p>\n <\/td>\n<\/tr>\n \n\nTraining<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
\u00a0Hydrocephalus Association<\/span><\/h4>\n<\/td>\n<\/tr>\n<\/thead>\n\n\n\nProcesses and infrastructure for transition and longitudinal care<\/strong><\/span><\/h4>\n<\/td>\n1. Incorporate the Six Core Elements of Health Care Transition (HCT)<\/a>\u00a0 into the existing patient care processes.<\/span><\/p>\n2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.<\/span><\/p>\n <\/td>\n<\/tr>\n \n\nTraining<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
Processes and infrastructure for transition and longitudinal care<\/strong><\/span><\/h4>\n<\/td>\n1. Incorporate the Six Core Elements of Health Care Transition (HCT)<\/a>\u00a0 into the existing patient care processes.<\/span><\/p>\n2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.<\/span><\/p>\n <\/td>\n<\/tr>\n \n\nTraining<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
2. Provide appropriate resources to assist youth and their families through the HCT process.<\/span><\/p>\n 3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.<\/span><\/p>\n 4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.<\/span><\/td>\n
Training<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n Adult and Pediatric Neurosurgery and Neurology<\/strong><\/span><\/p>\n1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\nNursing and Social Work<\/strong><\/span><\/p>\n1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n
<\/td>\n<\/tr>\n \n\nPayment<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n\n\nInsurance<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n\n\nResearch<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n\n\nSupport and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n\n\nAdvocacy<\/strong><\/span><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n\n\nFollow Up<\/span><\/strong><\/h4>\n<\/td>\n<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n* 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n
1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC<\/a> to incorporate these objectives into the medical school curriculum nationally.<\/span><\/p>\n 2. Develop curricular requirements for residency training via the ACGME<\/a> for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.<\/span><\/p>\n 3. Include the topic of health care transition in board certification examinations.<\/span><\/p>\n 4. Address the \u201chidden curriculum\u201d that can create a culture within training and practice that adversely affects patients with hydrocephalus.<\/span><\/p>\n 5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.<\/span><\/p>\n 6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.<\/span><\/p>\n Nursing and Social Work<\/strong><\/span><\/p>\n 1. The AANN<\/a> should create a standard curriculum for hydrocephalus, and work with the American Association of Colleges<\/a> of Nursing to incorporate the curriculum into undergraduate nursing education.<\/span><\/p>\n 2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.<\/span><\/td>\n<\/tr>\n 2. Develop and make available resources for health care transition specific for hydrocephalus.<\/span><\/p>\n 3. Develop and disseminate information about health care transition for teenagers and young adults.<\/span><\/p>\n 4. Promote the pursuit of an adult-focused primary care medical home.<\/span><\/td>\n<\/tr>\n * 1\/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, \u201cImproving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit\u201d,\u00a0Journal of Neurosurgery\u00a0(forthcoming).<\/span><\/p>\n<\/td>\n<\/tr>\n \n \n Payment<\/strong><\/span><\/h4>\n<\/td>\n
<\/td>\n <\/td>\n 1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high-value care.<\/span><\/p>\n \n \n Insurance<\/span><\/strong><\/h4>\n<\/td>\n
<\/td>\n <\/td>\n 1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents\u2019 insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits<\/span><\/td>\n<\/tr>\n \n \n Research<\/span><\/strong><\/h4>\n<\/td>\n
<\/td>\n 1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.<\/span><\/td>\n 1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network<\/a> (HCRN) and the Adult Hydrocephalus Clinical Research Network<\/a> (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.<\/span><\/td>\n<\/tr>\n \n \n Support and education of patients and families<\/span><\/strong><\/h4>\n<\/td>\n
<\/td>\n <\/td>\n 1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.<\/span><\/p>\n \n \n Advocacy<\/strong><\/span><\/h4>\n<\/td>\n
<\/td>\n <\/td>\n 1. Work with medical specialty societies, nurses\u2019 organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state, and regional levels.<\/span><\/td>\n<\/tr>\n \n \n Follow Up<\/span><\/strong><\/h4>\n<\/td>\n
<\/td>\n <\/td>\n 1. Convene a follow-up Transition Summit in about 2023.<\/span><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n
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