Question #5. What do you see as the top issues for babies and families in the coming era? 1. developmental follow up and outcome. care of infants with congenital anomalies 2. Disparities in health care access and overall funding. Continued variable use of non-evidence based therapies in the absence of strong central guidelines 3. universal coverage and decent reimbursement 4. measurement of quality of care with tranparency for families 5. ? 6. continuing occurrence of cerebral palsy in LBW neonates without abatement 7. Inadequate health insurance Poverty and its limitations on housing and food supply 8. Access to care at reasonable cost 9. Access to care 10. Inability of hospitals to maintain and support advances in the intensive (expensive) care of newborns due to declining revenues. 11. Preventing premaurity 12. Outcomes of extreme preterm newborns family oriented NICU care Standardization oof NICU care 13. Limits of viability 14. Insurance coverage 15. the fact that only 0.1% of resources go to followup 16. Preventing errors and involving families in our processes 17. Recognizing special needs of the late preterm infant, since their numbers are growing, addressing the special needs of the medically fragile infant being discharged from the NICU, finding a way to fund non-research-related long-term neurodevelopmental follow-up of NICU graduates. 18. Universal health insurance and access to quality health care. 19. Continued erosion of family unit. Lack of personal and family responsibility. 20. breastfeeding, perinatal care for undocumented immigrants, regionalized neonatal specialty care, safe NICU staffing 21. Establishing health routines that can prevent later disease 22. Access to pediatricians & neonatologists as primary physician caregivers (as opposed to advance practice nurses, physician assistants and generalist/family physicians). 23. appropriate access to health care with rising health care costs 24. Prevention of prematurity; Increased prenatal care; Re-establishment of regionalized perinatal care; Accurate and open outcomes data; patient safety; patient access to healthcare; social improvements to health e.g. nutrition 25. Increasing expectations for survival at lower and lower gestational ages Spreading of the practice of neonatology to smaller units with poorer outcomes 26. paying for health care. access to care expense and access to care for infants with disabilities 27. Parenting Guidance 28. interaction with families and their sick infants in the NICU 29. reduction of preterm births 30. Equality of care based on region and proximity to hospital's maternal and child expertise Mangement of preterm labor 1 Question #5. What do you see as the top issues for babies and families in the coming era? 31. Support resources both financial and psychological. Reliable childcare for single parents. 32. prevention of prematurity growth and nutrition 33. improving neurologic morbidities to match improved survival 34. Prenatal education for parents, breastfeeding education, health insurance coverage for complex infants/children 35. would be helpful to have consensus guidelines for discontinuation of life-sustaining support, i.e., ventilators for newborns failing despite our efforts. Parents may be helped by consensus statements/recommendations. 36. survival in a disjointed world which supports education and thinking last. maybe improve after bush. 37. I see access to care and funding of medical care as the top issue. Additionally, I see improving outcomes for our increasing survivors as an important issue. 38. Appropriate insurance coverage, access to specialized care, Well-designed research studies. 39. Genetic dx, Screening - eg CMV Long term outcomes of premature infants. 40. economic hardtimes 41. Health promotion and factors that improve healthy outcome of pregnancy. 42. Decreasing re-imbursement for physician and allied health services due to increasing managed care. Decreased funding for developmental stimulation and caretaker respite services post NICU discharge. Ethical medical decision-making in care of ELBW infants and desperately ill infants of any gestational age with poor prognosis for survival without major handicap; ie, allocation of expensive resources. Family involvement in medical decisions, particularly for severely ill or ELBW infants with unfavorable prognosis. Continued regionalization of Neonatal intensive care. 43. Preventing chronic lung disease of prematurity. 44. Universal access to care 45. nation health insurance 46. continuing access to needed health services 47. issues associated with limits of viability: financial, legal, ethical; setting proper expectations of the most extreme preemie to allow society make educated decisions on how to progress 48. Fetal origins of adult disease Racial/Ethnic Disparities Persistent preterm delivery 49. Changes in the family unit as more extremely premature infants survive. 50. Helping with decisionmaking re: borderline viability and end of life issues 51. 1. Iatrogenic late preterm birth for questionable indications; 2. Deregionalization of perinatal and neonatal care; 3. Loss of competence by pediatricians in caring for newborns with minor and emergent problems 52. Dealing with handicaps 53. COSOLIDATION OF FOLLOW UP SUPPORT FOR OF THE TINIEST BABIES WITH RESIDUAL LUNG AND CNS PROBLEMS 54. surviving with less resources 55. Ethics of care in extremely preterm infants. Outcomes reporting...need for accurate comparisons for perinatal, referral, and perinatal-referral centers. Research--both collaborative clinical and basic research 56. Financial related stresses. 57. long term health and development; family centered care 2 Question #5. What do you see as the top issues for babies and families in the coming era? 58. Protecting the hospitalized patient from hospital acquired illness and then maximizing their developmental potential. 59. Dealing with the morbidities in survivors 60. Long term health issues as co-payments and coverage becomes increasingly limited. Therapies which might actually have a significant outcome benefit. 61. family centered care 62. Universal health care. Access to prenatal services for mothers. For babies access to primary care physicians, access to high risk infant followup for NICU graduates, and access to pediatric subspecialists. 63. Access to high quality care. Competing successfully with other areas of medicine for adequate funding of perinatal programs. 64. 1. Assistance with long-term care, adequate follow-up, and well-organized and effective early intervention strategies and therapies for high-risk infants and LBW and ELBW infants. 2. Improved understanding of long-term prognosis in ELBW infants. 65. access to prenatal, neonatal, postnatal care. Problems with money, transportation and support- especially for first time parents and parent of children with problems- eg prematurity related or birth defects- inc CHD. 66. 1) Unclear ethical guidelines for the tiniest infants; 2) access to neonatal care universally; 3) disinterest of big pharma and device makers in the modestly sized neonatal population; 4) the ethical issues that will arise with increased genetic and proteomic testing 67. adequate funding for mother and infant care 68. Continued fragmentation of neonatal-perinatal care resulting in inadequate access to appropriate care and lack of maternal transport to neonatal centers of excellence 69. prevention of prematurity more holistic family centered care long term care and followup prevention of NEC and related morbidities prevention and treatment of brain related injury 70. Adequate funding to provide appropriate care for all. 71. Access to care, and secondarily coverage for costs of servies 72. Accessibility to quality affordable health care 73. Getting to appropriate care for mother and infants 74. prevention of prematurity 75. Health insurance and cost of medical care 76. Cost of health care 77. affordability and access 78. The limit of Viability 79. Taking care of infants with compromised neurodevelopmental outcome 80. Cost and availability of healthcare 81. access to medical care 82. Infection control 83. Access to health care and the cost of health care 84. care for chronic conditions nutrition 85. Extreme prematurity and resuscitation at peri-viability 86. Medicaid expansion; universality 3 Question #5. What do you see as the top issues for babies and families in the coming era? 87. Lack of a means to pay for the high cost of health care for this population who have limited personal financial resources. 88. Prevention of prematurity. Improving outcomes of EWBWs. 89. Childbirth out of wedlock 90. Access to care 91. Universal health coverage 92. overwhelming cost of healthcare 93. Available, affordable, and effective healthcare for babies and families. Environmental health and resource challenges. 94. Access to care Maintenance of Medicaid/SCHIP programs implementation of new technologies in NICUs implementation of quality assessment programs 95. educational needs for graduates 96. Understanding and managing long term outcomes 97. Funding for care of those without insurance 98. breastfeeding 99. Long term follow up to assess outcomes 100. Preventive care 101. improve long term neurodevelopmental outcome 102. Cost of health care 103. Availability of health care. 104. Accessibility to proper health care independent from ability to pay 105. lack of access to medical care 106. limits of viability and ability for society to pay for the immediate and long term care 107. Regionalization of care 108. healthcare costs limits of viability 109. Improved neonatal care that reduces morbidities of prematurity. Better standardization of neonatal care 110. Congenital malformations - earlier diagnosis, prevention, and management 111. Reimbursement 112. Improved patient safety for this fragile population. 113. Medical insurance reimbursement to assure standard medical care for all. 114. ethics of care cost of care supporting disabled survivors of neonatal care 115. Clinical guidelines 116. prevention of prematurity 117. Infection in the cause of premature delivery and morbidity in surviving VLBW infants 118. Prevention of preterm deliveries and easy access to services 119. Availability of services at a reasonable price 120. Funding of neonatal care and research 4 Question #5. What do you see as the top issues for babies and families in the coming era? 121. Increasing prematurity rate, increasing dissolution of the family structure, increasing poverty and socioeconomic and health problems. 122. Preventing prematurity 123. Managing lay press efforts to inform of new technology and developments and the sometimes complex expectations that families develop 124. Breakup of the family unit 125. Maximizing outcome in the extreme premature infant; improving nutrition in prematurity; increasing acceptance of banked/processed breast milk 126. 1)Lack of Standardized care 2) Pediatricians that are no longer willing or comfortable at providing initial resusciatation or even Routine Newborn care 127. Funding for their health care (pregnancy & neonatal) 128. Maintaining breastfeeding as primary nutritional need of newborns. 129. universal health care for all mothers and babies 130. early intervention/ access to healthcare for underserved and special needs/ regionalization of perinatal care/ quality improvement and evidence based practice in neonatal medicine/ p4p 131. Adequate access to healthcare. 132. Availability of adequate care for all infants and children 133. Cost of care and access to all services which might optimize outcomes 134. The declining birth rate to the educated female population with the increase in the birth rate to the uneducated. This is going to lead to a greater disparity between have and have nots. 135. -Ethics and limits of care -Improved Rx for infectious disease -Gut maturation, pro/prebiotic, NEC 136. 1) supporting breastfeeding, and 2) the worrisome trend of elective C-sections and inductions "near term" 137. rising medical cost 138. preventing premature birth, nutrition 139. access to care and limitation of services. Limitation both by health plans and government as too expensive 140. healthcare coverage 141. Pushing down lower GA limit for care vs. poor long-term outcomes. 142. Immunizations, the cost of NICU, developmental intervention 143. Health Insurance for the care of preterm infants and sick newborns 144. See my response in the survey submitted yesterday before #4 was corrected. 145. universal access to health care 146. The ongoing problem of prematurity 147. appropriate medical insurance 148. Health insurance 149. viability gestation 150. funding health care 151. Access to care 5 Question #5. What do you see as the top issues for babies and families in the coming era? 152. Health care coverage 153. Decreasing funding in the face of increasing costs 154. Oxygen toxicity 155. Access to care with universal coverage (no one in the US should have the potential to go bankrupt because of a child's illness or of their own). 156. Cost of health care, access to healthcare, and paying for the uninsured. 157. Access to care, financial reimbursement for physicians/NICUs for high levels of care, perinatal/IVF issues, maternal health 158. Funding and funding cuts; lack of access 159. Adequacy and availability of resources for education and coverage of maternal and child health. 160. Availability of quality health care and education. 161. The trend towards decreased regionalization of NICU care 162. Vaccinations, specifically overcoming all the psuedoscientific anti-vaccination hysterai 163. financial payment of physicians immunizations 164. Tiny babies and disabilities Funding for management and care of developmentally disabled children Funding of after care post NICU 165. Lack of access to care due to inadequate reimbursement to care givers. 166. n 167. neuroprotection in the NICU social and educational support after discharge 168. Economics - food vs medicine vs doctor visits Lack of insurance 169. The care and management of the late preterm infant Promoting breast feeding 170. insurance coverage, family-centered care 171. insurance coverage, family-centered care 172. Access to care, avoidance of preterm birth, education of the public regard perinatal care 173. health care benefits 174. no comment 175. informed decisions about limiting care, withdrawing care 176. reducing the cost of nicu care 177. Universal, single payor, health care is the key issue for all of us including babies 178. neurodevelopmental outcome in the face of improved survival 179. relationship of perinatal health and adult health. Ways to improve babies to improve generAl health. 180. Strategies of developmental prophylaxis in NICU's What should be the limit of viability? 181. 1. availability of care 182. centralized versus decentralized neonatal intensive care, decreasing nosocomial infections, information overload for families 183. Obtaining adequate health care 184. Prematurity Prevention 6 Question #5. What do you see as the top issues for babies and families in the coming era? 185. access to care - malpractice/litigation, payment for services, insufficient numbers of young neonatologists to meet clinical care needs (deregionalization and aging neonatologists) 186. appropriate nutrition;prevention of childhood obesity 187. Access to healthcare/cost of healthcare 188. Improving quality in the delivery of perinatal health 189. the expense of heath care the loss of jobs and difficult economy 190. Complexity of care delivery. Electronic systems putting more demands on providers time so less time is spent at the bedside with pt and family 191. cost-effective care 192. access to care 193. ivf teen preg 194. Obesity, access to health care. 195. Coping with developmental disabilities and medical problems that plague our sickest newborns after discharge. Presenting realistic outcomes such as those on the NICHD web site. Working with reproductive endocrinology groups in ordert to give an accurate projection of risks and potential costs of infertility treatments. 196. Access to care, insurance issues 197. Access to care/insurance, environment, resources, family life/stress, nutrition 198. access to care 199. 1 - Access to supportive services and therapies after discharge as we have more and more survivors with longterm health/behavioral concerns 200. reimbursement for medicaid services 201. prevencion of prematurity 202. / 203. Access/appropriate distribution of resources. Disruption of previous regionalization by economic pressures. 204. ethical dilemna 205. Avoidance of what I call the "Six million dollar man" mentality in medicine--that we can rebuild anything and that any gestational age is worth resuscitating. While we have made great strides during the past decades, it is not us who takes care of the failures but the families and society. At what price we should always ask? And for whose benefit--certainly the child needs to be at the forefront of our decisions. 206. invitro/multiples...the section must address both the ethical and economic/manpower issues. 207. Universal health care. Period. 208. Complications of prematurity. 209. Advocacy, professional payment 210. Written in previous version of survey 211. Adequate provision of health care for babies and families. 212. cost containment and appropriate health care 213. Need for comprehensive prenatal education and care. 214. taking care of the NICU survivor esp the ELBW 7 Question #5. What do you see as the top issues for babies and families in the coming era? 215. costs and access to care 216. education issues for children 217. Health care coverage Access to care Adequately trained pediatricians/ family physicians Adequate availability of pediatric subspecialty MDs Obesity prevention 218. limits of viability, where do we draw the line 219. Access to care 220. Research into the safety and efficacy of new medications for therapies of neonatal issues. 221. Insuring the avalibility of high quality health care for all mothers and babies 222. Affording medical care Improved neuroprotective/neuroregenerative strategies 223. Advocacy Realistic expectations--prevention rather than acceptance of preterm birth. Manpower for the future. Investigate and validate the Neonatology of the future. 224. Attempts to reenforce the value of nuclear families for the health and well-being of children. 225. Poverty Uninsured Advocacy to resolve the above 226. Access to care 227. insurance coverage for uninsured babies 228. Long term assistance/care for children and adults that have disabilities/chronic medical issues. We spend a lot of money in the newborn period but then there are not resources to continue to support these families and it is even worse for children that survive to adulthood. 229. Prenatal education and care health care financing birth control accessibility especially for low income reduction of prematurity rate 230. Adequate insurance coverage for follow-up and long term care. 231. Lack of universal coverage for women at reproductive age (prior to, during and after pregnancy) and for children 232. lack of pediatrician involvement in hospital and actue care 233. A rational approach to what is useful care and what is excessive care 234. health insurance, education reform 235. Preventing premature birth. 236. Funding for neurodevelopment follow-up Education effort aimed at decreasing current surge in late preterm infant births 237. Impact of late preterm births on healthcare Access to care in difficult economic times 238. Breakdown of neonatal regionalization of care Closure of obstetrics services 239. need for special services in community and schools 240. safe and quality healthcare 241. Access to care, prevention of prematurity, support (coordinated healthcare, education, social and economic) for children with chronic illness and their families. 242. So many of today's parents had poor parent modeling themselves. The 2-parent home (regardless of gender) is not even considered the norm anymore. I worry about these children and am feeling hopeless about it. 243. . 244. Top issues concern the lack of preparation of current and future residents to attend deliveries and take care of newborn infants. The restriction in work hours coupled with the increase in mid-level practitioners and the presence of hospitalists has greatly impacted the education 8 Question #5. What do you see as the top issues for babies and families in the coming era? and training of residents. The recently graduate pediatricians and family practitioners are becoming less and less comfortable with all aspects of newborn care, including well baby care in a hospital setting. 245. Healthcare access and funding. 246. Long term neurodevleopmental outcomes 247. access to rescources for premature infants especially as children are surving at younger gestational ages and we are discovering more mild deficiencies that appear during school age. 248. lack of adequate health care in follow-up 249. Developing more EVIDENCE BASED clinical guidelines for therapies and interventions. 250. Affording education, given the state of the economy. Health insurance for all children. 251. Access to healthcare after discharge from the NICU 252. Medical insurance coverage 253. cost and payment systems for care defining edge of life and medical futility improving family centered care funding of research and followup care for NICU survivors 254. health insurance and timely care of babies 255. Evidence based practice of neonatology 256. appropriate evidence based high quality care 257. Less insurance coverage; deepened economic crisis 258. Infection control, medication safety and continued improvement in respiratory care 259. Universal Health Insurance 260. Access to health care 261. Access to care for all Global health 262. High need for extra services throughout childhood for NICU graduates. 263. funding,fragmentation of care in numerous small units 264. Access to care 265. Near term complications 266. medical insurance for ex-premies with chronic conditions 267. Communication/Coordination of perinatal & neonatal care in patient(BABY)-centered framework. Inefficiency of perinatal care and high overhead costs passed on to patients. Integration of long-term outcomes into perinatal decision-making. 268. elimination of prematurity new technology for the <24 week baby 269. Maintaining access to appropriate health care. 270. Regionalization of care and how to handle the increasing demand for neonatologists in smaller hospitals 271. universal health insurance 272. improving the quality of life, developmental and other therapies after the NICU 273. no answer 274. Long term care for disabilities 275. health insurance; prenatal and postnatal care for underserved populations 9 Question #5. What do you see as the top issues for babies and families in the coming era? 276. Qn 4 above did not allow me to choose more than 1...5 valuable for me are: Publications Educational programs Clinical guidelines Advocacy for appropriate coding Advocacy for babies and families 277. Access to neonatal and pediatric care 278. Decreased reimbursements for uninsured families 279. affordable health care 280. no insurance or limited insurance--accessability to care 281. Cost of health care 282. Patient safety and improved outcomes 283. Neonatal Morbidity - in USA 284. Coming to grips with realistic expectations for the high mortality and morbidity associated with the birth of an extremely preterm infant 285. Late preterm complications 286. economy 287. ROP Coding and Reibursement outpatient follow up services 288. Q4 only allows one choice. 289. Child health care availability 290. Decreasing funding in an era of increasing costs. 291. Lack of money for research and research traiing to keep the field current 292. Lack of health care coverage 293. The very premature infant and outcomes, input on inclusion of families as part of the care providers, open pathway for input into the section. 294. Training more research oriented neonatologists 295. Burden of chronic care in babies with minor and major deficits 296. Decreasing fiscal resources. 297. The greatest concerning trends noted are the increasing rates of premature infants and the increasing number of infants born into single parent families. Reducing both or either of these groups of infants is crucial to the overall health and financial well-being of our society. 298. dissolution of families 299. Access to health care lack of health providers 300. access to care 301. access and funding for perinatal care, early identification of disabilities and resource allocation for same 302. Significant number of NICU babies come from uninsured families.So hospitals typically do not care about this speciality. significant advocacy is needed to properly reimburse hospitals and physicians in the prevention, education and care 303. EXPLOSIVE COSTS OF CARE 304. Picking doctors based on performance and outcomes; right nutrition from the start to decrease obesity 305. Insurance coverage. 306. Improving outcomes of ELBWs. 10 Question #5. What do you see as the top issues for babies and families in the coming era? 307. Access to care close to home. 308. Improved access to prenatal care and effective family planning 309. Note : Question #4 would only let me select 1 answer. Answre #5; How University Neonatal programs will learn to co-exist with private practice neonatal programs in a way were patients care and access will not suffer 310. Funding for research 311. Increase in teen pregnancy IVF 312. n 313. Societal awareness of risks of practicing FETAL medicine 314. 4. I could only select 1 answer. Other 4 that are most valuable: Coding education, NeoPREP, NRP, Educational Programs Appropriate insurance coverage to pay for increased cost of having a baby in the NICU. 315. late preterm hospitalizations 316. FYI: QUESTION 4 DID NOT WORK: IT ONLY ALLOWED ONE CHOICE, NOT 5. Need for more support for top quality research that will benefit babies and families. Without this we will stagnate and not advance and improve on what we are doing presently. 317. quality of life for infants/shool children after NICU stays 318. Continue funding for care and resarch for newborns 319. access to care 320. reimbursement 321. Providing support to new families in the form of education, not "free medical care" through chasing members of congress or state legislatures. 322. I have concerns about the growing NICU Graduate population and how they will be affected by chronic health care needs. 323. Decrease in pre term births. Decrease numbers of social c sections for babies under 38 weeks. Cut off should be greater than 38 weeks unless there is true labor that can't be stopped. Too many borderline kids having resp distress, some very sick, because of "social" want to have a section . 324. Increased advocacy for preconceptual and prenatal care 325. Topics surrounding limits of viability, parental rights surrounding resuscitation 326. Improving morbidity & outcomes. we have advanced our mortality rates however it is unethical to leave a family with an infant that will be disabled for the rest of his life & unable to benefit from disbility & SSDI unlike the infants in the past. Neonatology has to catch up with the new business atmosphere of medicine and have more realistic approaches to whta we are doing. 327. Improving Neurodevelopmental outcomes for infants born prematurely 328. Out-of-Wedlock Births > Single Parenting 329. Clinical guidelines and regionalized care 330. Social determinants of care and outcome 331. affordable health care; access to care 332. Health disparities and access to care 333. Preventing prematurity 334. family centered care breast feeding advocacy margin of viability 11 Question #5. What do you see as the top issues for babies and families in the coming era? 335. increasing rate of prematurity/skyrocketing costs of care 336. prevention of premturity 337. Lack of health care insurance to cover unanticipated prematurity and neonatal problems 338. Funding 339. quality of care costs of providing care/reimbursement 340. improvement in outcome of extreme preterm infants and follow-up of preterm and sick infants 341. Family Planning Education 342. Supporting research 343. insurance 344. access to care/funding 345. Health care coverage Preventive medicine 346. Access to medical care : Universal 347. Universal Healthcare 348. Combating the deregionalization of perinatal/neonatal care, and moving back to a much more regionalized system. Dealing with a surplus of neonatologits. It is very likely that in the relatively near future we will be able to prevent many, if not most preterm labor. This will dramatically reduce the demand for NICU care, and with it, the demand for neonatologists. There already have been a couple of trials that reduce preterm labor. It is a reasonable expectation, given the biologic underpinnings of these successes, that more results like this are on the way. Any big reduction in preterm labor will dramatically reduce the demand for neonatologists. 349. multiple births with fertility drugs affordable medical insurance lack of compassion in medical care poor home follow-up 350. access to health care for ALL babies and families 351. education for prevention of prematurity 352. Health insurance 353. changing long term outcomes; lack of research secondary to deregionalization 354. Keeping the family structure intact 355. (please note that this program only accept 1 answer for question #4 while you ask for ranking 5 items). Question #5: Ethical issues. 356. NEC, pre/probiotics, and Perinatal Endocrinology 357. Access to care 358. Health care availability and affordable coverage. 359. Accessibility to health care - 360. affordable health care and safety and tort reform 361. Physician Salary, Workforce and Advocacy. 362. Dealing with the barriers to care created by the problem of uninsured and underinsured babies and families 363. #4 would only let me select 1 answer...so the other 4 for number 4 are: coding education, clinical guidelines and statements, publications, & NRP 364. How to improve patient care and maintain costs, determine the long-term effects of care on outcome and their impact on Public health, determine what role preterm birth has on the 12 Question #5. What do you see as the top issues for babies and families in the coming era? occurrence of adult diseases 365. None 366. multiple births limit of viability 367. research dollars 368. medical coverage 369. * 370. Issues at the edge of viability. 371. Uninsured and/or underinsured families and children 372. Access to health care 373. continued funding for research, appropriate reimbursement for services 374. Disparities in health care, access to health routine and medical health insurance 375. Issue of de-regionalization in many states is compromising care - we must insist on regionalized care in order to provide the highest quality care 376. continued and expanded access to NICU care; we have not yet been the target of payor revolt, but we will be 377. regulated reimbursement with new incoming administration tort reform reduction in medical benefits from gov't or insurance co.s 378. # 4 above does not allow us to pick 5. Priority for 3rd party coverage, quality of care, communication /J:_Newborn.PRI/VanMarterAssistant/AAP/MemberQuestionairre/Perisurvey#5 13