IN PERSPECTIVE Bruce Moore, O.D.
The Massachussetts Preschool Vision Screening Program
T
his editorial describes the rationale, development, and the initial stages of implementation of a system of enhanced vision screening for preschool-age children of Massachusetts. It is but one potential solution to the problem of identifying undetected vision disorders in young children. This program is an initial step in ultimately providing universal and appropriate vision care to young children statewide. It is based on an assessment of the needs and resources available in Massachusetts and certainly differs in a variety of ways from that which might be considered elsewhere. Nonetheless, this Massachusetts model may prove useful in establishing systems of vision care for young children in other states. Vision disorders are the fourth most common disability of children and the leading cause of handicapping conditions in childhood.1 In preschool-age children, amblyopia and amblyogenic risk factors such as strabismus and significant refractive error are the most prevalent and important vision disorders. Amblyopia occurs in about 3% of children and is responsible for more significant visual impairment in Americans younger than 45 years than all other causes of visual impairment combined. Amblyopia is considered detectable in almost all children if proper screening techniques are used and considered treatable in many children if detected early and treated aggressively.2,3 It is now also acknowledged that children experiencing vision loss in 1 eye early in life are much more likely to experience significant vision loss in their fellow eye at some point later.4 Although it might be argued that loss of vision in only 1 eye
is not a great burden to bear throughout life, the loss of vision in both eyes is. Therefore, amblyopia is clearly a significant public health issue, perhaps the most important public health issue affecting the vision of children. After years of being virtually ignored by many in the eye care professions, children have suddenly been rediscovered by the fields of optometry and ophthalmology, as well as other health care professionals, governments, and educational policymakers. Previously, there was little interest emanating from government or the health care sector in establishing comprehensive systems of eye care for children. Nationwide, few children were screened before entering school, and even fewer had eye examinations. The important vision disorders affecting young children often went undetected and untreated, leading to functional and structural impediments to children’s education and general well-being. Recently, President Bush’s call to “Leave No Child Behind”5 has led to a reassessment of many beliefs, attitudes, and practices about education and the factors that play a role in a child’s ability to learn. It is reasonable to assume that the role of vision in the learning process will now be better appreciated as a result of this increasing national focus on education. Local and national systems of vision screening in the United States, in many cases developed generations ago, often were not scientifically based, did not follow proper public health guidelines and strategies, and were frequently ineffective. The sensitivity, specificity, and predictive value of these programs were largely unknown and often not even considered. This lack of quality
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Bruce Moore, O.D.
and scientific rigor, arguably, is the source of much of the dissatisfaction with vision screening today. Until recently, wellness eye examinations for young children were rarely recommended or given, especially in the absence of readily identifiable problems in an individual child. The eye care and pediatric primary care professions all played a role in this failure. However, this situation is beginning to change. A scientific and public health foundation for providing early detection and treatment of vision disorders has been developed.6 Individual states and localities, along with professionals and professional associations, are now planning and implementing systems of providing enhanced eye care services to children.7 The renewed interest in children’s vision has coincided with, and in some instances been precipitated by, the genesis and dissemination of updated guidelines and policy statements on vision
372 screening and examination from a number of professional organizations, including the American Optometric Association,8 the American Academy of Pediatrics,9 the American Public Health Association,10 the American Academy of Ophthalmology,11 the American Association of Certified Orthoptists,9 the Canadian Academy of Pediatrics,12 and the National Association of School Nurses.13 The Healthy People 2010 initiatives14 and the U.S. Preventative Services Task Force15 have also identified eye care for children as an important issue to be addressed nationally. Organized optometry has tended to argue for universal comprehensive eye examinations before, or at the time of, entering kindergarten. However, others believe that our imperfect understanding of vision disorders in children and the lack of agreement on the best ways to detect, diagnose, and treat those conditions requires more research and planning before committing to examinations in lieu of universal screening. Furthermore, the critical issues of access to care, distribution of manpower, and the cost involved in providing universal examinations have not been studied or agreed on adequately. The fields of ophthalmology and pediatric medicine tend to believe that screening already works well enough or could be made to work better through improvements in technique or training, making unnecessary the idea of universal examinations. The basis of this disagreement is owing to different philosophies and various economic considerations among other reasons. However, regardless of philosophical, political, or economic perspective and intention, the simple reality is that most children in the United States today receive little or no vision care before entering school. Professionals who care for and serve this population, as well as their professional organizations, find, or should find, that condition to be unacceptable.
Background The resurgence of interest in children’s vision coincided with increased research in vision screening and children’s vision disorders starting about
10 to 15 years ago. Clinicians had become aware of the deficiencies in the existing systems of clinical care and in the understanding of vision disorders in children and how to detect and treat those disorders. The passage of legislation in Kentucky in 2000 mandating universal eye examinations for children entering school triggered an intense discussion on the issue of screening versus examinations on a local and national level; the intent of the legislation was to improve the quality of eye care for all children in that state, a worthy goal in alignment with other organizations, professions, and individuals participating in this discussion. The situation in the United States, however, is in sharp contradistinction to that of some other developed nations. Perhaps the best examples of successful approaches in providing quality vision care for children come from several Scandinavian nations. There, universal screening, detection, and treatment of vision disorders have reduced the incidence of amblyopia from the typical developed world prevalence of about 2.5% to 3% to about 0.3%, a reduction of about 90% from the baseline.16-19 This has occurred over the last 20 years, so that young adults in those nations today have a far lower prevalence of amblyopia compared with age-matched groups in the United States. From a public health perspective, such success in America would be a dramatic, effective, and efficient way to improve the visual status of young Americans. That Scandinavian result was accomplished through no major breakthrough in understanding the disease entity, but mostly by organizing a system far more effectively than currently exists in the United States. Obviously, the United States is not Scandinavia. The health care systems, the demographics, and even the behaviors of the population concerning public health issues are very different. Nonetheless, the Scandinavians have developed a workable model of reducing vision loss owing to amblyopia and amblyogenic risk factors on a national scale and with modest and reasonable investment in new resource allocation.
Why has our system in the United States not worked? The absence of an organized national health care system appears to be a major reason. Fifty states have more than 50 approaches to the problem; neighboring communities frequently do things differently and, all too often, do nothing at all about children’s vision. Professional turf issues play an important role. Pediatricians believe that screening should be in their hands, but most of the evidence available today in the United States indicates that few children are screened in pediatric primary care examinations (by pediatricians or other primary care providers), and, of those screened, many are not screened effectively.20 Guidelines exist but are not followed, personnel are not properly trained, and children are not well served. Schools, for the most part, do a little better. School personnel, however, sometimes use techniques that are not scientifically based. Protocols, if they exist, are too infrequently and inconsistently followed, so that results are mixed.21,22 These various professions and professionals are often more interested in gaining advantage over each other, for political and economic reasons, than in providing for the needs of the children. Kentucky chose universal eye examinations. The presumption is that vision care will be available to all children throughout the state as a result of this legislation. That implies that there is proximity to care, practitioners are able and willing to see the children, and financial means to provide that care are available to all children throughout the state. It is still early in the implementation phase of that legislation.23 Because Kentucky is a large, rural state with an uneven distribution of manpower and resources, it is difficult to see how universality will occur in the near term given the maldistribution of resources in this state as well as in other states.
Planning Programs to provide health care services in the schools have existed for
In Perspective many years because of the obvious reality that schools are the one place that almost all children gather on a daily basis. Historically, the mass vaccination programs against polio in the 1950s are a prime example of reaching vast numbers of children on a national basis in a cost-effective and rapid manner to solve a serious public health problem. Vision screening has occurred in schools for more than 100 years, first in Connecticut, and later in most other states.24 These early efforts were well intentioned but poorly designed and implemented. Most states have established guidelines for screening of school-age children,25 and in a smaller number of states, guidelines have been promulgated for preschoolage children.26 In recent years, there has been increasing activity in a number of states to improve the system of school-based vision screenings.27 Massachusetts was one of the first states to attempt a standardization based on sound clinical practice. Dr. Albert Sloane, in the late 1930s and early 1940s, designed the Massachusetts Vision Test, made up of procedures for distance and near visual acuity, detection of hyperopic refractive error, and binocularity.28 This test was modified in time to be performed in a telebinocular device sold commercially to school systems around the country. This system was used widely for many years, and, even now, many school systems still depend on these devices. However, the system was not updated over the years; it was not scientifically tested for its ability to accurately detect vision disorders in children; and the instruments, even if effective under the best of circumstances, were often not maintained, calibrated, or even cleaned over the years. Furthermore, the devices were, at their best, detecting increasing levels of myopia in children at middle school ages. Many now believe that myopia is correlated with children who are most likely to do well in school.29 The testing device was not as capable of detecting hyperopia and amblyopia, conditions now thought to be correlated with children more likely to do poorly in school.30 Most important, the sys-
373 tems often did not target young children. The system being implemented now in Massachusetts is based on an assessment of the available resources, including the distribution, training, interest, and availability of professional manpower, as well as the needs of the children. There is recognition by the pediatric eye care community in Massachusetts that, to provide a system of vision care for all children statewide, it will take time and significant resources deployed in a sequenced and systematic manner, including the efforts and talents of many professionals and volunteers to serve the needs of the children. Massachusetts has a number of advantages over many other states in the implementation of a system of universal vision care for children. It is densely populated, has 4 eye doctor training programs (the New England College of Optometry, the Harvard Medical School, the Boston University School of Medicine, and the Tufts University School of Medicine) producing more than 125 new eye care professionals per year, a high ratio of eye doctors per population, and generally excellent access to care. The Massachusetts version of the Children’s Health Insurance Plan, the precursor to the national program of providing health care coverage to uninsured and underinsured children, provides eye care coverage to virtually all children within the state not otherwise covered by insurance or managed care. Organized optometry and ophthalmology (including the Massachusetts Society of Optometrists and the Massachusetts Society of Eye Physicians and Surgeons and many of their respective members, along with many clinics, hospitals, and teaching institutions) have pledged to provide eye care for all children, regardless of their ability to pay. Thus, there are relatively fewer barriers to care in Massachusetts compared with many other places around the country. However, a disproportionate share of eye care practitioners in Massachusetts are located in the Boston metropolitan area; many are associated with
academic health care centers; and many practitioners are focused on a narrow area of specialization and have no training, interest, or availability to care for children. Thus, even in a state with greater potential eye care resources than most others, there is not enough manpower available to provide care for all the children at this time, even in Boston, and even less so in the more isolated urban and rural areas of the state. Therefore, a phased-in deployment of scientifically based enhanced vision screenings for children entering school, coupled with stronger and more coordinated efforts at ensuring comprehensive eye examinations for children failing the screening and those deemed at high risk (perhaps 20% to 25% of the total population), would be the most efficient and effective way to begin providing improved vision care to the children of Massachusetts. The ultimate goal of providing high-quality comprehensive vision services to all children in Massachusetts is still in the future, but the decision has been made to try to serve those in greatest need first. A multistaged targeting of children who are at highest risk of vision problems was determined to be the first step. Over the last 15 years, a collaboration of pediatric optometrists and ophthalmologists, along with a variety of individuals and organizations interested in the visual well-being of children (including members from the New England College of Optometry, Boston Children’s Hospital, Boston Medical Center, Massachusetts Eye and Ear Infirmary, New England Medical Center, Harvard School of Public Health, Harvard Medical School, Massachusetts Society of Optometrists, Massachusetts Society of Eye Physicians and Surgeons, Massachusetts Departments of Public Health, Education, Office for Children, and the State Legislature, Prevent Blindness Massachusetts, Lions Club, Boston Public Schools, ABCD Boston Head Start, Massachusetts School Nurses Association, and the Massachusetts Orthoptists Association), have been working to bring about a reconfiguration and modernization of the system of vision
374 screening for preschool and school-age children in Massachusetts. In 1996, the group obtained a grant from the Massachusetts Department of Education to begin the process of revamping vision screening. A pilot study that compared a redesigned protocol (a version of the Mass VAT visual acuity test and the Random Dot E stereo test) with the system used throughout the state at that time (the Titmus Vision Screener), was carried out in 3 school systems: 1 urban, 1 rural, and 1 suburban. School nurse and teacher attitudes were compared using the old and new systems, and the efficacy of the screening protocols was assessed. The outcome showed that the new enhanced system was viewed more favorably in a variety of ways by the personnel carrying out the new protocol, and more children were correctly identified with it than by the old one (unpublished data submitted to the Department of Education). That system was the working model, with modifications and improvements, that was recommended to the Massachusetts Legislature for adoption. A multiyear effort to educate state legislators on the need for improvements in the system based on the best scientific evidence available required participation by organized optometry, ophthalmology, the Massachusetts Departments of Public Health and Education, volunteer organizations, and citizens’ groups. These local efforts have been associated closely with national and international initiatives (including the Vision in Preschoolers Study and the UNESCO VERAS Study) to improve the detection of vision problems in children, specifically that of amblyopia and amblyogenic risk factors. The screening techniques that were selected are based on the current state of understanding about vision screenings and recent guidelines issued by a variety of organizations and advisory groups. After years of effort, legislation was finally passed by the Massachusetts Legislature and signed by the governor in July 2004 to bring about major changes in the system of vision screening based on current research and clinical thinking.
The legislation as passed and signed by the governor reads as follows: “Upon entering kindergarten or within 30 days of the start of the school year, the parent or guardian of each child shall present to school health personnel certification that the child within the previous 12 months has passed a vision screening conducted by personnel approved by the Department of Public Health and trained in vision screening techniques to be developed by the Department of Public Health in consultation with the Department of Education. . . . For children who fail to pass the vision screening and for children diagnosed with neurodevelopmental delay, proof of a comprehensive eye examination performed by a licensed optometrist or ophthalmologist chosen by the child’s parent or guardian indicating any pertinent diagnosis, treatment, prognosis, recommendation and evidence of follow-up treatment, if necessary, shall be provided.” A key element is the requirement of universal vision screening by an approved system and by individuals trained in that system. The “pressure point” is entry to kindergarten. Consideration was given to earlier screening at 3 years of age, advocated by many and for good reason, but it was pointed out by legislators that there is no way to ensure that the regulation would be carried out, except voluntarily, unless there was a “pressure point” to ensure that children underwent screening in an appropriate manner at a specified time. Thus, it was decided to use the mechanism in place to require complete immunizations before entering school and to effectively create a new “immunization” for vision screening and followup comprehensive eye examination for those failing the screening and for those with neurodevelopmental delays.
Implementation Legislation without proper implementation will not produce the desired results. Recognizing the need for gradual phasein, the Massachusetts Department of
Public Health designated Dr. Jean Ramsey of the Boston University School of Medicine and the author with the responsibility for developing new regulations and putting them into effect beginning in the fall of 2005. A statewide public program to educate the individuals and groups who will actually implement the program is being carried out. A series of training meetings, open to school nurses, allied health personnel, primary care providers and their staffs, and members of volunteer organizations like the Lions Clubs, has been held around the state. Training, as part of the curriculum of the School Health Institute, a joint effort sponsored by the Massachusetts Departments of Public Health and Northeastern University in Boston, is occurring on an ongoing basis. Thousands of people have been trained at these meetings. In addition, training materials, in the form of videos, protocols and data sheets, PowerPoint presentations, and other written materials are being distributed on CD-ROMs to all of the schools, school nurses, primary care providers, clinical facilities, and eye care professionals throughout the state and are available for access and download on the Massachusetts Department of Public Health Web site http:// www.mass.gov/dph/fch/schoolhealth/ screening.htm#screening. These efforts have been sponsored by the Massachusetts Society of Optometrists, the Massachusetts Society of Eye Physicians and Surgeons, the Massachusetts Medical Society, the Massachusetts Department of Public Health, and Alcon Laboratories. Assessment of the program is considered essential. Studies are being designed to monitor and measure the accuracy, cost, efficiency, and effect on educational performance. The committee that led the effort to revamp the statewide program will continue to monitor the system for quality control, to make certain that the system is updated as needed to incorporate advances in knowledge and techniques, and to ensure that children referred to an eye care provider for followup actually receive that care and have that information sent to parents, primary
In Perspective care providers, and school systems. An effort is being made to join in a computerized system being developed to track immunizations for all children statewide in accordance with HIPPA regulations. It is recognized that these screenings are only the first step in implementing a universal, high-quality system of providing vision care to all children in Massachusetts. Although the initial screening system is directed primarily at amblyopia and amblyogenic risk factors and does not address issues related to vision and learning, it has already accomplished several of the long-term goals. It has created a coalition of professions, organizations, and individuals committed to providing quality eye care for all children; it has built a strong political working group to push that agenda; and it is moving toward increasing the scope of the program.
Summary A group of individuals and organizations interested in improving the quality of vision care for the children of Massachusetts has succeeded in designing a scientifically based vision screening program for preschool and early school-age children and in passing legislation to codify that system. In some ways, that effort was the easy part. The hard part comes in actually implementing that system on a statewide basis. It will entail training thousands of people from diverse backgrounds to carry out a new, standardized, vision screening system that is rooted in good science, good public health policy, and good economics to benefit Massachusetts’ children and their communities. Although it will take time and considerable energy, the ultimate goal of reducing amblyopia and the effects of amblyogenic risk factors in children is worth the effort. It is recognized that this is only a first step and that the initial goals are limited to the detection of amblyopia and amblyogenic risk factors, and not broader visual disorders. In Massachusetts, there was a desire to ensure high-quality comprehensive
375 eye care for all children. It was decided that the first step needed to be a unification of the diverse segments of the eye care, health care, and educational communities for a common purpose. Past conflict should not continue to affect the children. The success of this approach in Massachusetts may not necessarily be applicable elsewhere. However, it can be argued that an effective way to help the children is to find common ground among the adults responsible for policymaking initiatives, and then to implement that policy. Allying the current factions in this effort will help solve the problem of developing universal and cost-effective systems that will serve the needs of children today and in the future. Finally, one might ask: Why did we not demand a law requiring universal eye examination before entering school in Massachusetts? Why accept a screening for all and examinations for some? I know of no one in Massachusetts, or elsewhere, involved in providing vision care for children, who does not believe that in concept, every child should have a comprehensive eye examination before starting school, or at some time earlier, given sufficient resources. In my opinion, that is not the question, and its inference greatly confuses the issues and realities that we as eye care providers face. It is at this point, simply not possible, even in Massachusetts, to provide universality. There is not enough distribution of skilled, interested, available manpower to accomplish that, regardless of what is said. At best, it will take years to get to that point. As I described, in Massachusetts, with its small size, high density of population, relatively high availability of manpower (at least on paper), good access to care, and limited financial barriers for the under- or uninsured, it is not possible today to provide a comprehensive eye examination to every one of the 83,000 children entering school each year. Therefore, if a comprehensive eye examination cannot be provided for every child at or before school entry, how are children prioritized, at least until the availability of vision care in-
creases to match demand? The obvious way is to identify those in need and provide comprehensive vision care to them first. Those in need are children who fail a “good” screening and by definition are at increased risk of a vision problem requiring attention. Most important, children at the very highest risk of significant vision problems are those with neurodevelopmental delays owing to conditions like cerebral palsy, Down’s syndrome, prematurity, and other (most already identified by their primary care providers, parents, and educators) disorders. We estimate in Massachusetts that is perhaps 20% to 25% of the 83,000 children entering school each year. By any account, if we can serve those high-risk children effectively, we have begun to do a better job. Is that sufficient? No. Does screening always work? No. There is the concept of sensitivity and specificity, which simply means that sometimes children are missed who shouldn’t be, and sometimes children are incorrectly identified who needn’t be. Screening under the very best of circumstances can capture up to perhaps 85% of children with significant problems.31 However, the presumption that a comprehensive eye examination is going to correctly identify all children needing care and will lead to proper care of all who need it, is also wrong; examinations will not catch 100% of children with problems, so the difference is in fact less than is sometimes implied. Screening can and should be done on some recurring basis, as most states currently mandate for school-age children. If a child is missed the first year, the problem may be detected the second year. Screening is not perfect, but it has the advantage of being able to be performed on all (or at least almost all) children, not just some. Ultimately, we want all children to have a comprehensive examination, but we will need to build a system to do so. Let us also not forget that a critical element in expanding access to care for children is to enhance the level of skill and understanding of practitioners who will deliver that care. This means more education on the optometric care of
376 young children. In terms of continuing education, this means both more educational content at meetings and more attendance by practitioners. Most critically, a better didactic and clinical education for our students still in training is absolutely essential. More pediatric residency slots are required to produce enough highly trained practitioners to support the provision of increased pediatric “specialty” care. The example 20 to 25 years ago of optometry’s expansion into eye disease is a model that ought to be emulated today with pediatric optometry. Curricula in our colleges were fundamentally changed to provide a solid basic science and clinical science background in medically based optometry with emphasis on eye disease, and clinical education was tremendously expanded in the care of patients with eye disease in venues like the Veterans Administration system. Our students now are very well prepared to take on these increased professional responsibilities and routinely do so as an integral part of current optometric standards of care. Unfortunately, the same cannot be said today with pediatric optometric education. Didactic education and especially clinical experience in pediatrics are not currently provided to our students at satisfactory levels at most of the colleges of optometry, in the view of many of my colleagues in pediatric optometric education. Note that for years this has been a constant topic of discussion by pediatric and binocular vision educators at the Association of Schools and Colleges of Optometry Pediatric and Binocular Vision Special Interest Group meetings that take place each year at the American Optometric Association and College of Optometry in Vision Development annual meetings. Too many of our students nationwide receive a minimal clinical experience in the care of children, especially young children under 5 years, the target of the legislative efforts by organized optometry to provide comprehensive eye examinations to children on a universal basis in the United States. This needs to change. Educational resources need to be rede-
ployed to match the direction that our political leaders are advocating. The new screening program in Massachusetts is focused primarily on identifying children with amblyopia or amblyogenic risk factors, including significant refractive error and strabismus. What about the more functionally oriented children’s vision issues that optometry has traditionally been concerned with, such as lower levels of refractive error and the broad related issues of vision and learning? The Massachusetts program does not discount that these areas are important; however, we simply accepted the reality that consensus was easily reached on focusing on those conditions deemed by virtually all factions as most serious in nature and deficient in care, namely amblyopia and amblyogenic risk factors. Hopefully, this editorial will further the active discussion going on today within our profession and within other professions and policy centers. Ultimately, what all of us hope to see is a system in place in the United States that is as effective at detecting and treating vision problems in children as that which already exists elsewhere. There is simply no excuse for anything less.
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Corresponding author: Bruce Moore, O.D., New England College of Optometry, 1255 Boylston Street, Boston, Massachusetts 02215
[email protected]