Parent caregiver-related predictors of health care service utilization by children with cerebral palsy enrolled in Medicaid.

INTRODUCTION: This study examined the associations between characteristics of the parent caregiver and health care service utilization by children with cerebral palsy enrolled in Medicaid. METHODS: A questionnaire was administered to the parents of children with cerebral palsy being treated in a North Carolina hospital, and the responses were linked with health services claims data from Medicaid. Data were available for 93 patients who maintained 1 year of continuous enrollment. The impact of selected demographic variables (race, years the child had the condition, employment, transportation) and behavioral variables (belief the child was receiving appropriate care, willingness to use home nursing and respite services, self-assessment of the severity of the child's condition, and use of orthopedic aids) on the frequency and costs of health care services was explored with use of multiple regression analysis. RESULTS: Parents who were willing to use home nursing and respite services were more likely to utilize these services, as well as inpatient facilities and orthopedic care, for their children (P <.05). However, parents who perceived that their child was receiving adequate care were less likely to utilize orthopedic care and home nursing for their children (P <.05). DISCUSSION: The belief of the parents in the adequacy of care received by their child, as well as their willingness to utilize supplemental health care services, were major predictors of health care service utilization by children with cerebral palsy enrolled in Medicaid. Parents who believed that their children receive enough care may need to be targeted for care management and disease management programs to ensure the continuum of treatment and care for these children.     

Providing a primary care medical home for children and youth with cerebral palsy

Children and youth with cerebral palsy present pediatricians with complex diagnostic and therapeutic challenges. In most instances, care also requires communication and comanagement with pediatric subspecialists and pediatric surgical specialists, therapists, and community developmental and educational teams. The importance of family resilience to the patient's well-being broadens the ecologic scope of care, which highlights the value of a primary care medical home from which care is initiated, coordinated, and monitored and with which families can form a reliable alliance for information, support, and advocacy from the time of diagnosis through the transition to adulthood. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health maintenance, preventive care, and anticipatory guidance needed by all children.     

Relational Aspects of Parent and Home Health Care Provider Care Practices for Children With Complex Care Needs Receiving Health Care Services in the Home: A Narrative Review

Children with medical complexity have ongoing health needs that may require dependence on medical technologies. While hospital admissions are an important focus of care delivery for these children, a majority of the time they are cared for in their own homes. Parents’ report feeling overwhelmed and stressed by the scope of their responsibilities, but they become sophisticated care providers and assume greater authority when providing their children's care at home. Communication, decision-making, and dealing with conflict with members of health care teams have been central concerns in parents’ reports of their home health care experiences. The objective is to review literature on relational aspects of parent and home health care provider care practices for children with medical complexity receiving home health care services. A narrative review was conducted. A search of MEDLINE, EMBASE, EBM Reviews, PsychINFO, ERIC, and CINAHL databases for English language studies published since database inception was carried out. Eligible studies focused on relational aspects of parent and home health care provider care practices for children with medical complexity receiving home health care services. Nine empirical studies were selected for this review. Literature describes parents’ and providers’ experiences managing a child with medical complexity in the home and the effects for the family and the parent-health care provider relationship. Parents want to be actively involved in all aspects of care that affects their child and ultimately their family. Further investigation is needed to better understand relational aspects of parent-home health care provider care practices to support child/family health and well-being in the home setting.     

'I am what I am because of who we all are': international perspectives on rehabilitation: South Africa

This article provides an overview of some of the important factors that impinge on people with cerebral palsy and their families, on medical and rehabilitation personnel, and on systems of healthcare and education in South Africa. Information is provided with regard to the national contextual variables that influence intervention in the country. The incidence of cerebral palsy is related to some of the more prominent aetiological variables including poverty, malaria, HIV/Aids and premature birth. Health care systems available for children with cerebral palsy are discussed, including the role of traditional healers. Access to education, training and care of children with cerebral palsy is described, including a brief history of specialized education in South Africa. An overview of the personnel, approaches and work contexts involved in rehabilitation highlights the unique nature of intervention in South Africa. The article concludes with recommendations for interventionists with reference to lessons that can be learned in terms of adapting skills and knowledge to local needs, in order to work successfully with children with cerebral palsy and to develop the resilience of their families. In addition, it is suggested that the definition of cerebral palsy needs to reflect the context in which the person lives.     

Aetiology and epidemiology of cerebral palsy

Cerebral palsy is a common and significant disorder of motor development, with an incidence of 2–2.5 per 1000 live births. Despite improvements in antenatal and perinatal care, there has been little change in the overall numbers of children developing cerebral palsy in the last 40 years. More extremely premature infants are surviving and have more severe forms of cerebral palsy. The common risk factors are prematurity, small-for-gestational age, multiple pregnancy, and maternal genitourinary infections. Many children have more than one risk factor for developing cerebral palsy and it is useful to consider causal pathways to cerebral palsy rather than singe causal events. Only by understanding the aetiology and epidemiology of cerebral palsy can programmes be developed to prevent cerebral palsy and plan health services to meet the needs of the affected children.     

早产儿脑性瘫痪婴儿期症状临床流行病学研究

目的：了解小儿脑性瘫痪婴儿期症状,为儿科医生、儿保医生提供脑瘫的早期筛查、早期诊断线索。方法：对江苏省7县市1～6岁4167例早产儿脑瘫患病率、脑瘫婴儿期症状进行调查,由受过统一培训的儿科医生、儿保医生完成。结果：早产儿脑瘫患病率为 32.9‰,胎龄小于32周的早产儿脑 瘫患病率为34～37周早产儿的3.6倍。脑瘫症状婴儿期的检出率在30%～62%之间,特异度在99.4%以上,准确度在97.2%以上。阳性预测值在80%以上,阴性预测值在97.5%以上。结论：脑瘫婴儿期症状为早产儿脑瘫的早期诊断提供了依据,适用于脑瘫的早期筛查和早期诊断。     

Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health

OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home.     

Computers in medicine. Augmenting medical care in pediatric patients with chronic illnesses

The use of computers to aid care for chronically ill pediatric patients is a relatively new concept. We are currently using Filemaker II software and a Macintosh Plus computer to augment overall patient care in children with chronic diseases, such as spina bifida, cerebral palsy, neuromuscular diseases, head injury, and spinal cord injury. This is a computerized medical record with a clinical database for dissemination of information to multidisciplinary team members, generating letters to private health care providers, displaying telephone messages, and assisting inpatient care. Advances in computer technology will provide future applications to aid health care providers in caring for patients with chronic illnesses.     

Cerebral palsy: what do medical students know and believe?

OBJECTIVES: Negative attitudes toward people with disabilities, including cerebral palsy, may be related to misunderstandings or lack of knowledge about the disability. If held by medical practitioners, they can have detrimental implications for the care of people with disabilities. The purposes of this study were to examine the knowledge and attitudes of medical students regarding cerebral palsy and to examine the effects of the videotape 'Understanding Cerebral Palsy' on these two areas. METHODS: The attitudes and knowledge regarding cerebral palsy of 54 medical students in their penultimate year were measured before and after watching a video produced to educate health professionals about cerebral palsy. They were assessed using a self-administered questionnaire constructed specifically for the study, adapted from previously validated questionnaires. RESULTS: These medical students generally had limited knowledge about cerebral palsy and displayed negative attitudes toward people with cerebral palsy. It was also found that males had less positive attitudes than females (P = 0.014) and that students educated mainly in Asia had less positive attitudes than students educated mainly in Australia (P = 0.012). The videotape was shown to be effective in improving the students' knowledge about cerebral palsy. A small but significant improvement in attitudes was also shown (P = 0.014), with the attitudes of some students improving dramatically. However, negative attitudes remained in many. CONCLUSIONS: Based on the findings, structured teaching about cerebral palsy is necessary within the medical curriculum at the University of Melbourne. Greater promotion of positive attitudes toward people with cerebral palsy and other disabilities is required.     

Home care for life-supported persons: an approach to program development

Eighteen ventilator-dependent children were returned to their homes from Illinois. Each candidate was selected according to physician-designated guidelines for medical stability as well as predetermined social-environmental and reimbursement criteria. Each individualized occurrence was organized according to a comprehensive home care plan. Unanticipated improvement in medical condition and psychosocial development has resulted at home. The children and families have returned to a safe environment that best promotes the health of all involved. In addition, initial cost savings were at least 70%. These demonstrations have evolved into an organized regional approach to the ventilator-dependent child which utilizes available resources. The required continuum of health care and personal services includes intermediate intensive care, respiratory rehabilitation, transitional care, home care, and community-oriented alternatives to home. Problems of the ventilator-dependent child are those encountered by all children with handicaps and their families. The appropriate solutions will provide models for other complex health care and societal issues.     

《国际专家建议：需立即转诊进行脑性瘫痪诊断评估的临床特征》解读

近年来在国家政策的引导和支持下,社区医疗体系得到空前发展,其中,初级儿童保健在社区医院常规开展,大大缓解了儿童专科医院及二三级综合医院儿科的压力。但由于社区医疗机构儿童初级保健人员未接受专业培训,对脑性瘫痪（简称脑瘫）儿童早期出现的症状不能识别,常导致脑瘫患儿不能得到及早诊断和有效干预,从而影响预后。2020年在Development Medicine and Child Neurology发表的一篇专门针对社区医疗机构的早期脑瘫识别和转诊的国际专家建议,明确提出了应立即转诊的6个临床特征和应加强监测的2个“警告信号”,以及在转介给医学专家进行脑瘫诊断的同时,应考虑转介给其他专业人员的5个转诊建议。该建议有助于社区医疗机构儿童初级保健人员及早发现脑瘫高危儿,及时转诊并减少干预的延迟。该文结合国内的实际情况对该建议进行解读,以期提高我国社区医疗机构儿童初级保健人员识别脑瘫高危信号及合理转诊的能力,达到早发现、早诊断、早干预,改善脑瘫儿童预后。     

Children and youth with special healthcare needs: there is no place like (a medical) home

PURPOSE OF REVIEW: This review highlights the importance, components, and outcomes of the medical home for children and youth with special healthcare needs. Relevant work supporting the medical home concept for this vulnerable group is highlighted for healthcare providers. RECENT FINDINGS: Developing a medical home model is garnering support from many national organizations and agencies. Having a medical home for children and youth with special healthcare needs is associated with favorable impacts on healthcare utilization and family-centered care. Achieving family-centered care is associated with increases in satisfaction and linkages to specialists, decreases in school absences and unmet medical needs. Consistent insurance coverage is important for children and youth with special healthcare needs to thrive. Further, lack of access to informational resources minimizes families' knowledge of available public programs. SUMMARY: Children and youth with special healthcare needs constitute a vulnerable population in need of comprehensive and accessible care. Provision of care via a medical home can be efficient and effective in this population of children and their families. Due to the relatively high cost of providing fragmented care to these children and youth, advances in coordinating access to services will have a cost-effective outcome.     

Longitudinal Evaluation of Transition Services ("LETS Study"): Protocol for outcome evaluation

ABSTRACT: BACKGROUND: Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centered, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation center and an adult rehabilitation center. METHOD: This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc's Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease. DISCUSSION: The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented. Trial registration www.clinicaltrials.gov, ID NCT00975338.     

Parental and primary care physicians'views on the management of chronic diseases: a study in Italy

A survey on the burden and quality of care and the parental and primary care physicians'views on management of eight chronic illnesses and disabilities was conducted from 1990 to 1993. Data were collected on 993 children and adolescents from family interviews and physicians'postal questionnaires. Approximately 70% of patients used two or more services for care management and 149 children were treated outside their region. Only 36% of the physicians were case managers and half of these agreed that better communication with other care providers could facilitate their role. A wide difference in parental satisfaction was found between medical and disabling conditions. Approximately 90% of the parents expressed satisfaction with care for children with coeliac disease (112/120), asthma (80/89) and diabetes (98/111), whereas approximately one-third of parents of children with cerebral palsy and Down's syndrome were dissatisfied (88/242 and 72/189, respectively). Primary care physicians expressed similar satisfaction with case management. Distance from hospital, the need for more information on disease management and financial aid were the sources of greatest dissatisfaction. Children with disabling diseases had more problems integrating at school than children with other chronic disorders. Closer interaction between health services, providers and families is necessary to manage the needs of disabled (Italian) children better. Chronic illness, disability, family, primary care, quality of care, special needs     

Redefining primary pediatric care for children with special health care needs: the primary care medical home

PURPOSE OF REVIEW: As considerations of the quality of health care have matured, the role of pediatric primary care providers and models for the delivery of primary care have received growing attention. Particularly for children with chronic conditions, the need for proactive, planned, and coordinated care delivered in partnership with consumers has become more apparent. The primary care medical home has emerged as a model favored by national organizations representing pediatricians and family physicians as well as national public health policy makers, yet implementation of this model remains limited and the evidence base for its value is not yet highly developed. RECENT FINDINGS: Most studies of primary care outcomes involve individual elements of the medical home such as care coordination and continuity of care. Limited data that are emerging from studies of the medical home model as a whole in practice settings suggest improvements in patient satisfaction and in some areas of utilization. No data are available that examine specific functional or physical health outcomes associated with primary care models like the medical home. SUMMARY: The pediatric primary care medical home provides a care model for both well children and those with special health care needs that expands primary care services beyond those provided in the examination room by individual providers to include systemic services such as patient registries, explicit care planning and care coordination, planned co-management with specialists, patient advocacy, and patient education. There is an immediate need for large-scale, practice-based studies of the outcomes for children and youth, providers, and the health care system when such improvements in primary care are implemented.     

Outcome of Meningitis among Children Less than 2-y-old in Haryana

Incidence of neurological complications and disability following meningitis among children less than 2?y in a community setting in Haryana was assessed. Cases were enrolled from hospitals of in Yamunanagar district. They were first assessed for disability or neurological complications at their home by health workers 1?y after hospital discharge using standard WHO ten questionnaire screening tool, and then by medical officers; finally they were examined by a pediatrician. Eighty one children could be contacted from a total of 91 meningitis cases. Among these 16 children had died (case fatality ratio 19.7?%). Among 65 survivors, disability was observed in 11 (17?%), and neurological complications were found in 24 (37?%) children. Microcephaly (8.6?%), seizures (6.7?%), cerebral palsy, hemiparesis and development deficit (some with hearing impairment, and language delay) were the major disabilities/neurological complications.     

儿科生活质量调查表PedsQLTM在脑性瘫痪中的应用

近年来儿科生活质量调查表PedsQLTM在儿童生活质量的相关研究中应用甚广.国外关于PedsQLTM用于测定脑性瘫痪儿童生活质量的研究相继开展,但国内尚无相关文献报道.该文总结了PedsQLTM的基本结构和评分方法,综合评价其在评定脑性瘫痪儿童生活质量时的信度、效度和敏感度,并对其在疗效评估及医疗决策制定过程中的作用进行了综述,该量表在评定脑瘫患儿生活质量方面有一定优势.     

Health care of young children in foster care

Greater numbers of infants and young children with increasingly complicated and serious physical, mental health, and developmental problems are being placed in foster care. All children in foster care need to receive initial health screenings and comprehensive assessments of their medical, mental, dental health, and developmental status. Results of these assessments must be included in the court-approved social services plan and should be linked to the provision of individualized comprehensive care that is continuous and part of a medical home. Pediatricians have an important role in all aspects of the foster care system.