At its most basic level, a polymer is a molecule consisting of a long, repeating chain of smaller monomers typically four to ten atoms in size. Polymers can be straight chains of regular repeating monomers, chains of varying length, or chains that branch in multiple directions. With these different chains come different forms: hard plastics, like plumbing pipe, for example, or flexible plastics, like a grocery bag. Polymers can be molded into auto bodies, added to paint to change its properties, or foamed, as with polystyrene and urethane. Polymers, in short, are most useful. Now a team of researchers from Carnegie Mellon University has discovered a way to make the process of polymerization even better, with potential environmental benefits.In one form of polymer production known as free radical polymerization (FRP), an “initiator” compound divides and forms a free radical—a molecule with an unpaired electron. In this unstable configuration, the free radical pirates an electron from another molecule. This leaves another unpaired electron, which reacts with another monomer molecule, and so on. “The majority of FRP reactions do not use an added catalyst complex but generate radicals throughout the polymerization by thermally decomposing a radical initiator at an appropriate rate,” says James Spanswick, associate director of the Center for Macromolecular Engineering at Carnegie Mellon University. FRP is used to make polymers such as polystyrene and polyvinyl acetate.Another common technique, atom transfer radical polymerization (ATRP), is a type of controlled, or “living,” radical polymerization in which reactions that would otherwise break the formation of polymer chains do not occur. Thus, the chain can continue to “grow” indefinitely. ATRP produces polymers with predictable structures and characteristics using an initiator and a catalyst to trigger a reaction. This reaction forms radicals that can be deactivated to form dormant species, which are then reactivated as desired. The benefit of this process is that the polymer chain grows slowly but steadily, and can be modified at various stages throughout the process to create a polymer with whatever characteristics the end user desires.These specialty polymers can even be designed to respond to changes in pressure, acidity, light exposure, and other environmental conditions. For example, ATRP can produce a polymer that, once applied in place, forms a gasket seal that offers a combination of oil and heat resistance, adhesiveness, and flexibility.The main difference between FRP and ATRP is that it is difficult to control chain end functionality during the former—for example, it may not be possible to reactivate the polymer. FRP therefore cannot prepare well-defined segmented copolymers (such as thermoplastic elastomers) that are useful in a number of applications. In ATRP, on the other hand, all polymer chains grow at the same time. Chain length, monomer distribution, and chain end functionality are controlled. Other benefits of ATRP over FRP include lower energy requirements and the ability to produce more complex polymers.I-based catalyst (CuI being a highly reactive state of copper), but the CuI is continually converted to CuII during the process by unavoidable termination reactions. As CuII is not suitably reactive—a buildup of CuII will slow and eventually halt the reaction—sufficient levels of CuI must be added to the reaction to drive the polymerization to completion. The result is an accumulation of copper that must be removed at the end of the process. “Removal of copper can be expensive and time-consuming,” says Spanswick, “because you have to pass the polymer solution through an ion exchange resin or over an adsorbent bed, and then you have to recycle or regenerate those media.”A problem with ATRP is that it requires transition metal catalysts, generally copper halides, which can then end up in the final product. ATRP uses a CuI and CuII are necessary in ATRP. Spanswick explains, “CuI has to be present to activate the chain end, and CuII to deactivate it. The addition of a reducing agent sets up an equilibrium between CuI and CuII and maintains the balance throughout the reaction.”Both CuProceedings of the National Academy of Sciences, Krzysztof Matyjaszewski, director of the Center for Macromolecular Engineering, and colleagues reported on a variation of ATRP dubbed ARGET (which stands for “activators regenerated by electron transfer”). In ARGET, the copper catalyst still changes from CuI to CuII but then is reduced back to CuI through the addition of reducing agents such as ascorbic acid or glucose. This approach reduces the amount of copper required to catalyze the process by up to a thousandfold—from 10,000 ppm to 10 ppm or less.In the 17 October 2006 issue of II, including sodium sulfite, sodium hydrogen sulfite, inorganic salts comprising a metal ion, hydrazine hydrate, mercaptoethanol, tetrahydrofuran, dihydroanthracene, 2,3-dimethylbutadiene, silane compounds, borane compounds, aldehydes, and derivatives of such compounds. The Carnegie Mellon team chose ascorbic acid and glucose because they are environmentally benign to the degree that they can be purchased and stored safely, and the excess left in the final polymer will not cause any environmental problems. Relatively small volumes of the reducing agent are called for , so polymer manufacturers could conceivably use the modification without significant changes in their physical plant.Ascorbic acid is an antioxidant, meaning it will interact with a substance in an oxidized state and reduce it. There are many agents that could be used to reduce the CuProceedings of the National Academy of Sciences paper, tolerate a large excess of reducing agent. Furthermore, in an environment that has not been completely deoxygenated, it can remove dissolved oxygen by continuously reducing the CuII formed when oxygen reacts with CuI.Besides reducing the levels of catalyst required, ARGET also shows another benefit to the manufacturing process. In ATRP, the process must be carried out in deoxygenated systems to prevent the radical from reacting with oxygen and thus wasting catalyst. ARGET can, according to the group’s Spanswick says a range of companies are looking at ATRP for preparation of drug delivery systems, coatings for heart stents, protein separation, cosmetics, fabric coatings, paints, adhesives, and pigment dispersants. “Pigment dispersants might not seem like a human or environmental issue,” he says, “but increased efficiency of a material in an application reduces environmental impact. Each application depends on incorporated functionality. The mere fact that a thousandfold less transition metal is employed means that large-scale production is now possible since purification using large volumes of volatile solvents can be avoided. This also has an environmental impact.”Rob Krebs, a spokesperson for the American Chemistry Council’s Plastics Division, describes the Carnegie Mellon work as intriguing and innovative, but points out that its scope could be somewhat limited. “Using environmentally benign reducing agents like ascorbic acid to avoid having to add excesses of copper is an innovative approach,” he says. “However, beyond those scenarios where copper would be a health issue, like in heart stents, it may not have a broad enough impact to be economically viable. . . . It seems this process would find application in niche or medical markets, but may have little impact on high-volume producers.”Could the presence of copper cause issues for eventual recycling of the plastic material produced through ATRP? Not likely, says Krebs: “First off, recycling is commodity volume–affected; that is, if there isn’t a large enough volume of a particular material, no one will offer to take it. And the recycling process uses a series of technologies that can quickly define any materials that could be considered hazardous or undesirable.”Krebs doubts the new technology could make an impact by saving industry dollars on copper, because there are so many competing polymerization technologies that reduce costs in other areas. “That being said,” he adds, “this is still an intriguing idea, and I applaud what they’re doing.”Spanswick agrees to some degree with the limitations pointed out by Krebs, but adds, “We hope the process will eventually be used to prepare large-volume plastic materials where purification costs are important.”He envisions, for example, a paint in which one segment attaches to the substrate and the other presents a different set of properties to the environment, such as being stain-free or antibacterial. Another large-volume application might be powder-based coatings in which control over rheology—the deformation and flow of matter under the influence of an applied stress—would allow direct preparation of a high-gloss automotive coating without the need for volatile organic compounds.In the meantime, the Carnegie Mellon team is working to enhance the ARGET method even further. “We’re looking at improving the activity of the catalyst, and at using different catalyst complexes like iron, which is even more benign than copper,” says Spanswick.


Inorganic arsenic—the more acutely toxic form of this metalloid element—contaminates drinking water supplies around the world. In the United States, the most serious arsenic contamination occurs in the West, Midwest, Southwest, and Northeast; as many as 20 million people—many getting their water from unregulated private wells—may be exposed to excess arsenic in their drinking water. In Bangladesh, it’s estimated that as many as 40 million people may be suffering from arsenic poisoning; contaminated drinking water is also a problem in many other countries, including Argentina, China, Chile, Ghana, Hungary, India, and Mexico. There are several methods for removing inorganic arsenic from water. Many take advantage of the strong bond that forms between arsenic and iron. Now Littleton, Colorado–based ADA Technologies, through funding from the NIEHS Superfund Basic Research Program, the U.S. Air Force, the U.S. Environmental Protection Agency (EPA), and the state of Colorado, has gone a step farther in capitalizing on that characteristic with a new class of amended silicate sorbents that remove even more arsenic from water, and do it more easily and more cheaply. ADA is also working with researchers at Virginia Polytechnic Institute and State University and Old Dominion University to study the interaction between arsenic species and iron oxide–based media, and is collaborating with other partners to develop low-cost approaches for quantifying the concentration of arsenic in drinking water.Most environmental arsenic occurs naturally, appearing in deposits of minerals and ores including arsenopyrite, enargite, and proustite. A smaller but still significant source of arsenic exposure is anthropogenic. Inorganic arsenic as well as various arsenical compounds have been used in agricultural chemicals and wood preservatives, in the glass industry, and in the production of lead shot. Elsewhere, emissions from coal-burning power plants are a significant source of arsenic exposure.However, the majority of toxic exposure comes from drinking water contaminated with naturally occuring arsenic. Chronic arsenic ingestion through drinking water is known to cause skin cancer, and has been linked to an increased risk for cancers of the bladder, lung, kidney, liver, colon, stomach, uterus, and prostate. Arsenic has also been associated with cardiac, pulmonary, and artery diseases, diabetes mellitus, and neurological, developmental, and reproductive problems.In the United States, a revised drinking water standard for arsenic of 10 micrograms per liter (μg/L) is set to take effect in January 2006, but there is substantial concern that this level is still too high for public safety. In many other countries, allowable levels are even higher. With millions of people around the world facing potential adverse health effects from this contaminant, the need for effective, affordable ways to remove arsenic from drinking water is critical.Arsenic is generally found in two inorganic forms in nature—arsenate and arsenite. Arsenate is present as a negatively charged ion at typical drinking water pH (roughly 6.5–8.5), whereas arsenite is neutral in the same pH range. Many treatment methods rely on a negative arsenic charge, so they tend to be more successful at capturing arsenate.One such method is ion exchange, which uses polystyrene-based resins containing positively charged sites to remove negatively charged species. Besides being effective only with arsenate, sulfate ions are removed preferentially to arsenic, so if large amounts of sulfate are present, those ions will tie up the bonding sites, leaving fewer available for arsenic to bond with. Activated alumina is a filter medium that will remove a variety of contaminants, including fluoride, arsenic (both arsenite and arsenate), and selenium, but it requires periodic cleaning with an appropriate regenerant such as alum or caustic in order to remain effective. Activated alumina also is effective only across a very narrow pH range (6 to 7).Granular ferric oxide is an iron-based adsorbent that can capture both arsenate and arsenite, but in general, it functions best at or below a pH of 7, and both phosphates and silicates can interfere with its action. A fourth method, a coagulation/filtration process, uses a ferric chloride liquid and an oxidizing agent such as sodium hypochlorite to create insoluble ferric hydroxide. Arsenic adsorbs readily onto the solids, but workers must store and handle corrosive ferric oxide and oxidant solutions.The ADA formulation takes a slightly different approach. The basic ingredient is an iron oxide known as akageneite. According to Craig Turchi, ADA program manager for the arsenic project, the company focused on an iron oxide because iron tends to form very strong, stable bonds with arsenic. Additionally, Turchi explains, oxides tend to be among the most stable substances in nature, and many of them tend to accumulate the substances with which they come into contact, including many contaminants. “Iron oxide is a molecule with hydroxyl groups,” he says. “And we know that, from a chemical perspective, arsenic behaves like a hydroxyl in some ways.”One of the key advantages to ADA’s approach is that the akageneite is coated onto an inert silicate substrate. In comparison, most other approaches involve pure iron oxide granules. Turchi says, “Our tests have shown we can get the same capacity as our competitors, but with much less iron. And that cuts the cost from around four dollars per pound down to around two dollars per pound.” Additionally, because ADA’s akageneite particles are on the nanoscale, they can be dispersed far more efficiently in water undergoing treatment. The ADA formulation also is notable for its ability to remove both arsenite and arsenate, and its effectiveness at a wider pH range of 6.5–8.5.The ADA formulation has been shown to reduce arsenic contamination as high as 1,000 μg/L to 10 μg/L in as little as 30 minutes. “The capacity of the adsorbent increases with the concentration of arsenic in the water,” Turchi says. “This behavior is typical of most adsorbents.” Capacity varies somewhat with the water content, says Turchi, but generally ADA’s material removes about 2 milligrams of arsenic per gram of sorbent at a concentration of 50 μg/L, and about 40 milligrams of arsenic per gram of sorbent at 1,000 μg/L.There is a catch, though—as the water gets cleaner and more bonding sites are taken up by arsenic, it becomes harder and harder to remove the last bits of arsenic. Turchi says it probably is not possible to remove all the arsenic from water with processes such as this. “It comes down to the efficiency of an equilibrium process,” he says. “Arsenic has an affinity to stay in water, as well as an affinity to attach to materials like iron. You’ll get diminishing returns until these affinities balance at some point.”Turchi says users will eventually be able to choose from either a solubilized form of the sorbent that can be sprinkled into contaminated water, circulated, and then filtered off or allowed to settle out, or a pelletized form for use in a packed-bed approach. A packed bed consists of layers of adsorbent material. Contaminated water is poured in the top, and purified water is collected at the bottom after seeping through the material. “In the ideal case you periodically add new sorbent to the clean water end and remove the arsenic-saturated sorbent from the other end, so that you get the maximum use of your sorbent,” Turchi says.Once the binding sites on the iron oxide have been used up, the material could be reused by acidifying it to break the arsenic–iron bonds, then filtering off the arsenic. But Turchi says economics—and the logistics of dealing with the arsenic-laden, high-pH waste—will probably dictate disposal of the used adsorbent. The spent material has passed EPA tests to determine the likelihood of contaminants leaching out of landfills into the surrounding water supply, so Turchi says the sorbent can simply be disposed of in a regular landfill.Turchi says ADA’s sorbent system has the benefits of being both robust and simple: no moving parts, and little training required. “I think that makes our system more appropriate for smaller-scale uses,” he says. “Typically, in a large municipal facility, you’d run the water through the filtration system, but a small village [in a developing nation] probably doesn’t have a water treatment facility.”ADA and collaborator Kinetico Incorporated, a water treatment system engineering company, are planning a field test involving a packed column of the amended silicate for summer 2005 at a facility in New Mexico, where the ADA formulation will be tested against two commercially available competitors. The formulation also underwent earlier field tests at two Colorado sites.Though not familiar with ADA’s work specifically, Joshua Hamilton, director of the Center for Environmental Health Sciences at Dartmouth College and the Dartmouth Toxic Metals Research Program, says, “I know a lot of people are working with iron oxides, and it appears to be a very fruitful area. Iron oxides and arsenic exhibit tight bonding properties, and oxides are relatively cheap materials. All of these are pluses—high efficiency, low maintenance, low cost, and easily renewable.”Still, says Hamilton, there are a few aspects of the ADA approach that may be cause for concern. For one, he says, “I think that assuming you can safely put it in a conventional landfill might be overstating the strength of the bond.” He explains that a lot of arsenic is found in granitic deposits throughout his home state of New Hampshire. “We’re seeing, under normal environmental circumstances, the mobilization of a good deal of arsenic out of materials that are basically compounds of arsenic and iron,” he says. “And it should also be taken into account that there’s a lot of interesting and somewhat unpredictable chemistry that goes on in landfills.” He points out that the environmental conditions that allow organics to remain contained are quite different from those that allow arsenic to be contained. “So if you focus on arsenic,” he says, “you could end up releasing organics into the environment and vice versa.”Turchi agrees that the issue of long-term sorbent stability in landfills needs to be addressed. He explains that the EPA leach tests examine the stability of landfilled contaminants under acidic conditions, because most metals leach off of sorbents under acidic conditions. “Research indicates that arsenic could conceivably leach off the media under alkaline conditions, so a different test may be required,” he says.Michael Harbut, chief of the Center for Occupational and Environmental Medicine at Wayne State University, points to another concern: “I’d [like] to see enough studies to show me the substance that resulted when the arsenic bonded didn’t have toxic properties of its own—inhalational studies, cardiac trend studies, the whole suite. Then we’d move on to worry about bond strength in the environment.” Harbut has studied low-level arsenic poisoning for many years and has lobbied for stricter water thresholds and broader testing.Hamilton raises a third concern: the fact that even $2 per pound could prove to be an insurmountable barrier in many countries. With comparable technologies costing $4–8 per pound, ADA’s price does seem a bargain. But with the annual per capita income in Bangladesh, for example, hovering around US$360, the outlay of even $2 per pound of sorbent  could well prove prohibitively high.“One factor that could mitigate that cost would be to make the sorbent material in the country where it will be used,” says Turchi. “Using less expensive labor and avoiding the costs of transportation could lower the cost significantly.”In the meantime, even affluent countries such as the United States are still searching for an effective, affordable response to arsenic. “You can put a reverse osmosis filter on your sink at a cost of six to eight hundred dollars,” Harbut says. “That’s not much to some, but for too many in this country, that’s just more than they can afford. We need, as a society, to fund these systems for those who can’t afford them.” Municipal water systems appear to have the technology to address the arsenic issue, but private well owners, as well as developing nations whose populations are scattered far beyond the reach of any centralized system, need a fast, safe, reliable system for removing arsenic from water. Further testing will tell if ADA’s amended silicate technology can provide one answer.Many other researchers are seeking the magic combination of a cheap and effective arsenic remediation process. All too often, if a treatment process is effective, it’s not cheap, and if it’s cheap, it’s not effective. A couple of other new ideas being tested might, like the ADA strategy, meet both goals.Ashok Gadgil, a researcher at Lawrence Berkeley National Laboratory, is working with a by-product of coal burning called bottom ash. Bottom ash  is an ultrafine substance, with particles one-tenth to one-hundredth the width of a human hair. Gadgil and his team coat the ash particles with ferric hydroxide, which in turn bonds powerfully with available arsenic. Initial laboratory tests indicate the substance can reduce arsenic concentrations from 2,400 μg/L to only 10 μg/L within an hour.Gadgil envisions loading this material into a teabag-sized filter to go in a water jug, providing a Bangladeshi family of six with a day’s safe drinking water. Costs, he estimates, might run around 30¢ per person per year. Gadgil is also testing the material for possible use in a water treatment system for small U.S. municipal water treatment facilities.On the opposite coast, an engineering team under the direction of Massachusetts Institute of Technology engineering professor Susan Murcott has hit on the idea of a filtration system utilizing layers of sand, brick chips, gravel, and iron nails. Once again, the strong attraction between arsenic and iron comes into play, as tests indicate arsenic contamination can be reduced to 10 μg/L within an hour. Cost of the initial system is about US$16 per year.Only time—and much more testing—will tell whether these approaches or any of the others being developed around the world will meet all of the criteria of simplicity, reliability, and ease of use. One additional incentive to find such an approach is the new Grainger Challenge Prize for Sustainability. The National Academy of Engineering is offering this $1 million prize to help solve the massive public health problem of arsenic contamination. The prize will be awarded to an individual or group for the design and creation of a workable, sustainable, economical point-of-use water treatment system for arsenic-contaminated groundwater in Bangladesh, India, Nepal, and other developing countries. The first Grainger Challenge prize will be awarded in February 2007.


Eos, the newsletter of the American Geophysical Union. Bruce Ferguson, director of the University of Georgia School of Environmental Design and author of the 2005 book Porous Pavements, says that a quarter of a million U.S. acres are either paved or repaved every year. Impervious surfaces can be concrete or asphalt, they can be roofs or parking lots, but they all have at least one thing in common—water runs off of them, not through them. And with that runoff comes a host of problems.Paved surfaces are quite possibly the most ubiquitous structures created by humans. In the United States alone, pavements and other impervious surfaces cover more than 43,000 square miles—an area nearly the size of Ohio—according to research published in the 15 June 2004 issue of Globally, it is a little more difficult to judge the square mileage of impervious surfaces. “We can extrapolate from the United States to a degree,” says Ferguson, “but there are too many variables to judge accurately.” The United States has a lot of automobiles, and compared to many other countries, Americans tend to build more (and wider) roads, more (and bigger) parking lots, more (and more expansive) shopping centers, and larger houses (with accompanying larger roofs). He says, “The United States might be on a par with Europe, but we’d be very different from India, for example, or any country where large numbers of the populace live in smaller, scattered villages, mostly without paved roads, parking lots, and the like.”According to the nonprofit Center for Watershed Protection, as much as 65% of the total impervious cover over America’s landscape consists of streets, parking lots, and driveways—what center staff refer to as “habitat for cars.” Says Roger Bannerman, a researcher with the State of Wisconsin Department of Natural Resources: “You see some truly insane things in this country. I’ve seen subdivisions with streets that are thirty to forty feet wide. That’s as wide as a two-lane highway. Most developers are going back to a twenty-five- to twenty-eight-foot width, but you can still see these huge streets.”Upon these automotive habitats fall a variety of substances, and thereby hangs the rest of the tale. Impervious surfaces collect particulate matter from the atmosphere, nitrogen oxides from car exhaust, rubber particles from tires, debris from brake systems, phosphates from residential and agricultural fertilizers, and dozens of other pollutants. “On a parking lot, for example, we have demonstrated buildups of hydrocarbons, bacterial contamination, metals from wearing brake linings, and spilled antifreeze,” says Ferguson.On a road of open-graded aggregate (stone), much of that material would seep down into the pavement and soil, and the community of microorganisms living there would begin a rapid breakdown process. But pollutants can’t penetrate an impervious surface, and the rapid flow of rainwater off of impervious surfaces means these pollutants end up in the water. “So then,” says Ferguson, “not only do you have too much water, all moving too fast, you have polluted water that kills fish and makes water unfit for drinking or recreation.”From the Mountains to the Sea. Watershed imperviousness exceeding 15% results in streams that are impossible to rate “good,” states the report, and even 2% imperviousness can affect pollution-sensitive brook trout.Areas across the country are being impacted by the growth in coverage by impervious surfaces. In Maryland, for example, when watershed imperviousness exceeds 25%, only hardier reptiles and amphibians can thrive, while more pollution-sensitive species are eliminated, according to a 1999 Maryland Department of Natural Resources report titled The 1.1-million-acre Chesapeake Bay watershed, one of the most diverse and delicate ecosystems in the world, is now being impacted by the 400,000 acres of impervious surfaces in Maryland. The Great Lakes, the streams and rivers of the Pacific Northwest, the Everglades of Florida—all are being impacted in one or more ways by runoff from streets, parking lots, and rooftops.Bannerman has spent the last 30 years studying stream flow and the effect of urbanization on watersheds, including the depletion of groundwater reserves. “Not allowing the rainfall to infiltrate back into the aquifer is a very serious issue,” he says. “If that happens, you lose the base flow [the portion of water derived from underground sources] for streams, and you lose the wetlands fed by springs. It’s a complete disruption of the hydrologic cycle.”Bannerman cites the example of Lake Wingra, a 1.3-square-kilometer lake in Madison. “A hundred years ago,” he says, “this lake was fed by around thirty-five separate springs. But today, because the lake is now almost entirely surrounded by urban areas, there are only four streams feeding the lake. Local organizations have gotten active in trying to restore the lake’s water quality, but it’s not the same lake it was a hundred years ago.” Lake Wingra now suffers from algal blooms caused by overfertilization, beach closures due to bacterial contamination, turbidity, and drying of surrounding wetlands.Bruce Wilson, a research scientist with the Minnesota Pollution Control Division, is midway through a satellite survey of impervious surface area in that state. What Wilson has seen thus far is enough to cause significant concern about the state’s growth and development, and the impact of impervious surfaces on the water system.“Impervious surfaces are impacting the lakes and streams on a number of fronts,” he says. “Velocity of runoff is a big one. Water runs off of these surfaces so rapidly, it creates mini-tsunamis that can cause serious, even irreparable, harm to the stream ecosystem. . . . And of course, the ability to recharge the groundwater system is being impacted. If you get into a twenty- to thirty-percent drop in infiltration [into the aquifer], which means a loss of base flow, the impact on streams being fed by surface water gets magnified still further.”Another big problem for urban areas is the flash flooding that can occur when heavy rains fall over a city, according to hydrometeorologist Matt Kelsch, an authority on urban flash flooding with The University Corporation for Atmospheric Research in Boulder. Since runoff from an acre of pavement is about 10–20 times greater than the runoff from an acre of grass, Kelsch says impervious surfaces can quickly trigger devastating floods that can produce a host of their own environmental health hazards.“In urban areas, anywhere from thirty to forty percent of the rainfall runs right into whatever stream is in the area, and in heavily urbanized areas it can be more than fifty percent,” he explains . “If the water overflows the stream banks, it’s going to seek the path of least resistance. In most cases, that’s going to be the roadways.”In many desert areas, Kelsch says, engineers take advantage of the natural topography, building houses at higher elevations and installing roads that lead up to residential areas. What this does is make the roads far more dangerous. More than 50% of the fatalities in flash floods occur on roads, according to Kelsch.Floods are often given numerical designations such as “hundred year flood,” meaning such a flood happens once every 100 years (or has a 1% chance of occurring in any given year). The Federal Emergency Management Agency maintains a national list of flood zones and maps of impacted areas. The problem, says Kelsch, is that we’ve changed the playing field. “A couple of factors come into play,” he says. “First, this is still a pretty new country, so most places haven’t been developed long enough to know about the historical risk of a devastating flood. Secondly, when we urbanize an area, we alter the historical frequency of these events. The more we develop an area, the more rainfall we put as runoff directly into streams that have evolved to handle only a fraction of that runoff, and the more that happens, the greater the likelihood of a catastrophic flood.” Several such floods hit New Orleans in the 1980s, and three hit St. Paul–Minneapolis between 1990 and 2001.Wilson is also studying the “heat island” impact on Minnesota’s trout streams, an impact he says evidence and experience suggest is significant. Impervious surfaces, particularly roads and parking lots, are generally dark, and thus heat-absorbing, so they heat the rainwater as it hits. A sudden thunderstorm striking a parking lot that has been sitting in hot sunshine (where surface temperatures of 120°F are not unheard of) can easily yield a 10°F increase in rainfall temperature. And that heated water isn’t coming off just one parking lot or one street, but more likely several, all adding heated water to a stream or river.Many aquatic organisms, at different stages of their lives, are vulnerable to even small increases in water temperature. “I’ve seen trout streams in Wisconsin and elsewhere in the Midwest lose whole populations because of—at least in part—the rise in temperature caused by runoff from impervious surfaces,” Wilson says. “Increased temperature also decreases the water’s ability to hold oxygen, which has a further detrimental effect on the aquatic life.” Warm temperatures can cause a variety of problems for fish, including decreased egg survival, retarded growth of fry and smolt, increased susceptibility to disease, and decreased ability of young fish to compete for food and to avoid predation. Especially affected are species that require cold water throughout most stages of their lives, such as trout and salmon.Eventually, given no additional changes, the temperatures would drop, but in the interim the impact on wildlife could be serious. Oregon is one state that is examining the science of water temperature effects on stream life. Oregon standards for optimal salmon and trout rearing and migration call for water temperatures of 64.4°F. According to a 2004 report by the Oregon Independent Multidisciplinary Science Team, which advises the state government on scientific matters related to the Oregon salmon and watershed management, studies have shown that adult salmon begin to die off at temperatures of 69.8–71.6°F, and some species of trout at slightly higher temperatures. Although young salmon can survive slightly higher temperatures, the impact on their growth and survival rate is well documented.a]pyrene, another carcinogen. Another potential source of pollution is wood used for utility poles, play structures, and other structures that has been treated with chromated copper arsenate , pentachlorophenol, or creosote. According to a paper presented at the 2004 Annual Water Resources Conference by Melinda Lalor, a professor of environmental engineering at the University of Alabama at Birmingham, in 1987 the United States alone produced some 11.9 million cubic meters of CCA-treated wood, 1.4 million cubic meters of pentachlorophenol-treated wood, and 2.8 million cubic meters of creosote-treated wood. And structures, once built from such materials, are intended to last a long time. The health risks of arsenic and chromium are well known, and while copper is not generally a human health risk, low concentrations of certain ionic forms of this metal are toxic to marine flora and fauna.Not yet as well documented is the impact of pollutants released into stormwater runoff by building and paving materials themselves. Asphalt is one concern, as it contains coal tar pitch, a recognized human carcinogen, as well as polycyclic aromatic hydrocarbons (PAHs) including benzo after the parking lot goes in, it’s not unusual to see fish kills downstream.”Water Science and Technology showing that stormwater from roofs and streets contributed 50–80% of the cadmium, copper, lead, and zinc measured in Swiss combined sewer system flows. Polyester roofing materials shed the highest concentrations of metals, followed by tile roofs, then flat gravel roofs. The Swiss researchers also found PAHs and organic halogens in the roof runoff.Lalor cites research published in volume 35, issue 9 (1997) of The chemicals released can have a significant impact on environmental and potentially human health. “Some materials, such as metals, are especially toxic to fauna at various stages of their life cycle,” says Lalor, “while some organics, particularly petroleum-based organics, can function as pseudoestrogens. So while they may not cause death, they can trigger a significant disruption in the physiology of the organisms exposed to these pollutants.”According to Lalor, although there are mandated tests for urban stormwater discharge, there are currently no tests mandated for building materials to determine their potential for toxics release. “If a community wants to develop around their drinking water source, they should know about release potential from building materials so they can carefully select those with which they build,” she says. “We don’t yet have the science to support it, but it would be a positive step to be able to go to a builder and say, ‘Look, here’s a list of twelve building material alternatives that would be most environmentally benign for this site and these conditions.’”Lalor says New Zealand has been the leader in this sort of study, and that nation is preparing to put regulations in place regarding building materials and environmental impact. But such studies haven’t been elevated to a high enough priority in the United States to build the science we need for setting new policies. She adds, “We need to address the entire life cycle of building materials, from what goes into their creation, to the impact of construction on the environment, to the impact of whatever might leach out during their lifetime, to the end-of-life disposal issues.”Despite the overwhelming body of evidence supporting the negative relationship between impervious surfaces and the environment, no one would seriously suggest that we stop paving streets or building parking lots. What, then, are the options?According to Ferguson, there are nine different families of porous pavement materials. Some of these materials are already well known in the United States; they include open-jointed pavers that can be filled with turf or aggregate, “soft” paving materials such as wood mulch and crushed shell, and traditional decking.Other families include porous concretes and asphalts being developed by engineers and landscape architects. Ferguson says these materials use the same components and manufacturing processes as conventional impervious materials, “and as a general rule, carry the same health and environmental issues. . . . Same chemicals, same energy costs to manufacture, but far different benefits in its use.” These new formulations still provide solid, safe surfaces for foot and vehicle traffic, but also allow rainwater to percolate down into subsurface soils.The porosity of porous asphalt is achieved simply by using a lower concentration of fine aggregate than in traditional asphalt; it can be mixed at a conventional asphalt plant. Under the porous asphalt coating is a bed of clean aggregate. Importantly, this aggregate is all of the same size, which maximizes the void spaces between the rocks, allowing water to filter through. A layer of geotextile fabric beneath this bed lets water drain into the soil and keeps soil particles from moving up into the stone.Porous asphalt was actually developed more than 30 years ago, according to Ferguson, but it didn’t pan out at that time. Part of the problem, he believes, was—and continues to be—the low level of federally funded research. “Back in the early eighties, when porous pavement was new, the Environmental Protection Agency [EPA] was really interested, especially in porous asphalt,” he says. “But one of the problems with porous asphalt back then was that on a hot day, the binder softened and migrated down to a cooler layer. That released the surface aggregate and clogged the lower layer.” According to Ferguson, the EPA became discouraged and discontinued studies.Since then, however, porous asphalt technology has been improved by French, Belgian, and Irish researchers, Ferguson says. During the late 1980s and early 1990s, they discovered that adding polymer fibers and liquid polymers to the asphalt prevented the binder from draining down through the aggregate. “Today, even though [porous asphalt] started out here, what we’re using has been imported back from Europe,” he says.Ferguson says porous pavement constitutes only a minute fraction of all the paving done each year in the United States. “However,” he continues, “the rate of growth of porous paving, on a percentage basis, is very high, primarily because of public concern about and legal requirements for urban stormwater management. This growth is happening both in the big asphalt and concrete industries, and in the smaller industries that supply competing materials such as concrete blocks and plastic geocells.”One argument against pervious surfaces in high-traffic areas is that they’re not as durable as their impervious ancestors. That, says Ferguson, is simply not true. “I’ve seen pervious pavement in good shape in places like Minnesota and Alaska, where you have tremendous climatic extremes,” he says. “In Georgia and Oregon, it’s now routine to resurface highways by putting a layer of pervious asphalt over the impervious surface below. That way, water drains laterally below the surface, giving you better traction and visibility.” Although the major advantage to this practice is highway safety, rather than reinfiltration of the water into the groundwater, it still allows for more water to return to the groundwater table than would be the case with an impervious surface, where it merely evaporates back into the atmosphere.Some pervious surfaces have the additional benefit of allowing pollutants to come into contact with microbes beneath the surface. According to Ferguson, these naturally occurring microbial communities thrive on the large surface area of the pervious pavements’ internal pores and break down contaminants (particularly petroleum by-products) before they can leach down into the water supply.Quarterly Journal of Engineering Geology and Hydrogeology.“Coventry University scientists did a study recently, where they applied oil to a lab mockup of a porous road surface,” he says. “They dumped far more used oil on the surface than you’d ever find accumulating on a parking lot, and none of it reached the soil layer below”—instead, microbes digested it all. The Coventry team, led by Christopher J. Pratt, published an overview of their work in the November 2004 issue of the Approaches to dealing with the spread of impervious surfaces go beyond changing the building material itself. Kelsch says a return to more reasonable street width is one measure, and many communities are increasing their number of green areas as a means of allowing rainfall to infiltrate back into the ground.For urban areas with nearby lakes, Bannerman says construction of “rain gardens” is becoming a popular method that homeowners and businesses can use to help control stormwater runoff. Such gardens are designed with dips in the center to capture water, which then can slowly filter into the ground rather than run off into the storm sewer. Ideally these gardens are situated next to a hard surface such as a sidewalk or driveway, and are planted with hardy native species that can thrive without chemical fertilizers or pesticides.Ponding basins like those used in Fresno are another option. This city of just over half a million in Southern California’s San Joaquin Valley gets less than 12 inches of rain annually and draws most of its water from underground aquifers and the nearby Kings and San Joaquin rivers. Beginning in the late 1960s, the city started constructing several ponding basins—large basins where stormwater can settle, then drain down through the soil. Water systems manager Lon Martin says the city had two goals in establishing these ponding basins: “First was to keep stormwater runoff from flooding the city and from going into the rivers, potentially causing water quality problems. Secondly, the city has begun a program of intentional aquifer recharging.”To date, he says, the city has connected nearly 80 of the possible 150 ponding basins to its groundwater recharge system. Recharge from stormwater is one part of the equation, but the city also takes its May–October water allotment from the two rivers, diverts the water to these basins, and then allows gravity to pull the water down through the sandy loam soil into the aquifer.Green roofs, another method of controlling rainwater runoff, are just what the name implies: roofs planted with all types of vegetation. Also known as “eco-roofs,” these surfaces can be either extensive  or intensive . According to the nonprofit Earth Pledge Foundation, green roofs can absorb nearly 75% of the rainfall that lands on them, and they can also reduce the urban heat island effect.Green roofs perform several roles, one of which is water harvesting, or basically catching rainwater for use elsewhere. “This water is cleaner than that off the pavement,” Ferguson says. “[Water harvesting] is now being practiced in areas where water is less available, such as the Southwest or the Pacific Northwest, with their dry summers. . . . [It] can be a valuable tool in areas where water is scarce.”In Germany, approximately 10% of the buildings have green roofs, and the city of Tokyo recently mandated that usable rooftop space of greater than 1,000 square meters atop new buildings must be 20% green. Green roofs are also found in North American cities including Chicago, Toronto, and Portland, Oregon.Recognizing the environmental health threat of impervious surfaces as well as other point sources of pollution, the EPA established a stormwater permitting program under the National Pollutant Discharge Elimination System. Phase I of the stormwater program, promulgated in 1990, required permits for separate stormwater systems serving communities of 100,000 or more people, and for stormwater discharges associated with industrial and construction activity involving at least five acres. Phase II, promulgated in 1999, addressed remaining issues and urban areas of fewer than 100,000 people, as well as smaller construction sites and retail, commercial, and residential activities.But further change will require a shift in how we think about runoff. Bannerman says, “What we’ve begun to do, and must continue to do, is to get away from the idea that rain is wastewater—something to get rid of, to pass along to our neighbors downstream. We need to keep it where it falls, and the way to keep it is to get it back into the ground.”For flash floods, Kelsch says, “there is no solution. Flooding is going to happen, in spite of everything we can do. What we need to do is what we can to lessen the impact of the inevitable. That means building out of flood plains, and increasing the amount of rainwater we send back into the aquifers while decreasing the amount we discharge into streams.” Building design and use of permeable paving materials will help, he says, but we need to realize these aren’t total solutions. Further, he adds, “If we get stuck in the mindset that we have to have a solution, we may not do anything. And that will make the problem still worse.”


Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically .Three themes emerged  which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy. •People with ID experience a lifelong impact of epilepsy on their quality of life.•The effects of seizures can be difficult to manage for people with ID and carers.•There is a perceived lack of accessible written resources about epilepsy.•High levels of satisfaction with specialist epilepsy clinics were reported. Semi-structured interviews were conducted with people with ID and epilepsy and their carers and sought their perspectives on their lived experiences of epilepsy, the impact on their lives, epilepsy management and care, and the availability and utility of epilepsy information and resources.2The WIELD (Wordless Intervention for Epilepsy in Learning Disabilities) study was a randomized controlled feasibility trial exploring key methodological, design, and acceptability issues, in order to subsequently undertake a large-scale RCT to evaluate the effectiveness and cost-effectiveness of an intervention using a picture booklet about epilepsy This study has been reported following the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist 2.1Forty participants with ID and epilepsy participated in the WIELD study and were recruited through epilepsy clinics in Hertfordshire Partnership University NHS Foundation Trust in England . Inclusion criteria included diagnoses of ID and epilepsy, at least one seizure within the last 12 months, meaningful verbal or nonverbal communication enabling the participant to engage with the picture booklet intervention, and a carer with sufficient English proficiency to complete the study questionnaires. Participants had a range of communication styles and severity of ID, and the sample included participants with and without capacity to consent to the study. For those without capacity, a carer acted as a consultee.As part of the overall WIELD study, we invited a subgroup of participants to take part in semi-structured interviews about their experiences of participating in the study  or intervention condition and collected questionnaire follow-up data for 20 weeks. At the 20-week follow-up, a subset of participants and carers were telephoned and invited to take part in a semi-structured interview with a researcher. Purposive sampling was used to ensure that a range of views and backgrounds were represented. As the interview schedule was also designed to collect information about the intervention to inform a future full-scale trial, we aimed to interview more participants from the intervention group than from the control group.Interview schedules were created, including an accessible version with simple questions and images, which were systematically shown to the participant with ID (see supplementary file). The interview schedules were not pilot tested but were developed with the input of researchers, clinicians, people with ID and epilepsy, and their carers.All participants and carers chose to conduct the interview in the participant's home. All had given consent for audio-recording at the beginning of the WIELD study, except for one carer, whose interview was recorded with hand-written notes. Field notes were not made systematically and therefore were not included in the analysis.All interviews were conducted by a female postdoctoral psychology research fellow with experience and training in qualitative research and working with people with ID (SM). Prior to the interviews, SM had primarily communicated by phone and letter with carers and had also spoken to some participants. Before the interview began, the purpose of the interview was explained to the participants and carers, and it was stated that SM was a member of the WIELD research team.2.3The semi-structured interviews were transcribed and analyzed using thematic analysis The sample size was determined prior to analysis. Data saturation was not a factor in determining how many interviews were conducted. Because of time constraints, transcripts were not returned to participants for comments, and the analysis was not discussed with participants.33.1We aimed to interview the participant with ID wherever possible (dependent on the participant's communication abilities) and also requested that a carer involved in the WIELD study was present to seek their views on acceptability and feasibility. The target sample size was fifteen participants, and this was achieved. No participants withdrew from the interview. Two control group participants and two intervention group participants were invited to participate in the interview but declined: two participants declined without providing a reason, one carer was not available, and another carer considered that the interview would increase the participant's anxiety.Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately because of being unable to arrange a time to visit them together (participant 42), two interviews took place with the participant with ID only (participants 97 and 98), and one interview took place with the carer only (participant 138). The median length of interviews was 31 min (8–56 min).The demographics of the participants are shown in 3.2The themes that emerged from the interviews following thematic analysis are shown in 3.2.13.2.1.1“To get me out of the house for the agoraphobia and all that, my mum took me down to the craft shop once a month to do it but the last, well since my depression flared up again I just, I can't get into any more”Participant 97Participants and carers described the participant's health and healthcare in general and related to epilepsy. Five participants and/or their carers reported that the participant had comorbid health conditions, for which they were seeing professionals and/or taking medication. A range of physical and psychological health issues were discussed, with depression being most frequently mentioned.3.2.1.2“She can't express how she feels, and stuff a lot of the time”Family carer of participant 01Participants with ID had mixed levels of communication. Some carers considered their family member or client to have good understanding and expressive skills, whereas other carers and participants noted difficulties in expression and/or understanding.For one participant with limited verbal communication, the paid carer highlighted that people who knew them were able to interpret wishes.3.2.1.3“Monday and Thursday I go to activity centre. We cook for people, we were making jam yesterday. Wednesday I'm at Health Food Gardens down the road and Friday's my shopping day. Tuesday the Social Worker, she's trying to sort something out. Always seem to be on the go.”Participant 118“He goes out every other week on a Wednesday and sometimes he goes to the shops and sometimes he'll see a friend of his, and he seems quite happy most of the time”Paid carer of participant 42 discussing the participant's activities and social lifePaid carers and family carers discussed the high levels of support available for participants; for example, always having a staff member accessible and available in a supported living setting. Most participants reported being satisfied with their living situation, care, and support. The majority of participants were not in education or employment, but many participants and their carers spoke of having a full timetable of activities . Seven participants attended a day center, where they interacted with others and engaged in various activities. Four participants or their carer mentioned the participant's active lifestyle and their enjoyment of social activities.3.2.1.4“she lives with us and she can't be left alone, so she can't ever be left unsupervised and she doesn't sleep so and if she does it's small amounts of time”Family carer of participant 16For those who did not live with their family, many had been living in their current home for a long period of time. As such, some of the paid carers reported knowing the participant for a long time. Participants received different levels of support from paid carers, and care was often provided flexibly. Some family carers reported providing care around the clock; although the need for one-to-one direct support varied, they had to be available at all times.3.2.23.2.2.1“My staff do it here for me, that's what I was saying, but otherwise very very bad, back to the doctors and nurses in the hospital again. But apart from that but it's them I haven't had them very very very bad anymore”Participant 28 discussing epilepsy management at home compared to when they used to have to go to hospital“Do you worry about anything? Mainly start, with the shakes, and the tremors.”Participant 51 and paid carer discussing concerns about epilepsyAlthough some participants and paid carers were unable to state when epilepsy was first diagnosed, most reported that epilepsy had been present since birth or childhood. One participant had been diagnosed within the last year and had had blood tests, a MRI, and a CAT scan as part of the diagnostic process. A minority of other participants or carers mentioned diagnostic tests. For five participants, seizures used to be more regular and/or more severe in nature, and they were now perceived to be better controlled. For some participants, seizures had caused injury or required hospitalization, and this created anxiety and distress.3.2.2.2“'Cos I try to look after them myself by making sure that I rest, when I'm tired, that's when I'm known to have an epileptic fit, so when I get tired in the day, like today I've had to be on my bed because I've got tired earlier”Participant 98There was wide variation in the type, frequency, severity, and aftereffects of seizures experienced by the participants. Some carers and participants reported the absence of seizures over the course of the 20-week WIELD study, whereas others reported having several seizures a week up to several seizures a day. Carers were often able to report triggers for seizures that commonly included tiredness, heat, anxiety, stress, illness, hormonal changes, and excitement. Participants were not always able to identify triggers, but where possible, they tried to adjust their lifestyle accordingly.“She's usually very confused, you know, she gets confused after, when she's coming out of it and she does have like rasping, breathing, that kind of thing.”Carer of participant 149 discussing the effect of seizures on the participantThe effect of seizures varied widely, with some people recovering quickly after a seizure, whereas for others, this could take several hours or even several days. Some participants and carers reported falls and injuries during seizures. Fatigue and confusion were commonly reported after a seizure.“Yeah there's lots of drawbacks, lots of drawbacks, and for [participant] obviously not pleasant while she's having them, especially because she's aware, unless she's had the full tonic clonic, and er, and so obviously when she's having them we just talk her through it….mmm just keep trying, and obviously keep saying it's not her fault”Family carer of participant 01“I know what happens, what happens to me, I go very quiet and I look down at my feet and I won't be able to talk, I can hear you, but I can't respond. And that's when I know it's… when I'm having a fit, and when I've come out of it I'm really tired.”Participant 98One carer of a participant with limited verbal communication felt that the participant probably did not know that she had seizures. A few participants were able to talk about experiencing seizures, and for those who were conscious during seizures, participants and carers reported that it was an unpleasant experience and one that could cause distress. Several participants reported dreading future seizures and their aftermath.3.2.33.2.3.1“It does get to the stage, where sometimes when she has had more than one in a day, that's it the days, you can't go out, you can't do anything, so it has that impact as well.”Carer of participant 01“Sometimes, it…it just stops me from doing anything.”Participant 51“There could be one day where I get really frustrated because of it [epilepsy], and you know, because I can't do the things that I want to do, like I put up this wall about driving but lately I've been saying I want to get, I really do want to get stable so I can drive.”Participant 97Dealing with epilepsy was considered a burden by a sizeable proportion of the participants and carers we interviewed, with a direct impact on everyday life and related quality of life. The condition was perceived to significantly limit participants' actions, work prospects, and activities in and outside their home. For participants who experienced multiple seizures a day, the occurrence and aftermath of the seizures could affect the entire day and prevent the participant from engaging in any activities. Some participants craved more independence, which was significantly limited by seizures that were difficult to control.“It's not difficult 'cos I know what to do for it, I don't like having epilepsy because it makes me have seizures and it makes me feel horrible after, I feel groggy, tired, and I can't focus, I can't focus when, when I've had epilepsy I need quietness, I can't stand noise when I come out. And it's horrible.”Participant 98Even for participants who reported feeling in control of their condition, seizures were described as extremely unpleasant and tiring, with a recovery time that varied between participants and could last for two days.“I think he worries about having seizures, he thinks that nearly anything can set them off, he thinks, he used to say ‘oh, don't want to work on the computer too long, it'll set off a seizure’, and we had to explain it's doubtful, so yeah, I think he worries about having them.”Carer of participant 42Another contributing factor to the perceived epilepsy burden was participants' anxiety and worry about their condition and associated seizures. Six participants or their carers reported recurrent anxiety about upcoming seizures, potential falls and injuries, hospitalizations, or any epilepsy-related event that would disrupt their routine and activities.“I know I can keep more control of them now”Participant 68“Not nice but there's nothing I can do 'cos I'm coping with it.”Participant 112“No, you just, with epilepsy yeah it's hard at first, you get stable, you have your ups and downs and get on with it.”Participant 97Four participants reported dealing with epilepsy and related seizures well and considered being in control of their condition. They seemed to have developed adequate coping mechanisms and felt empowered to manage epilepsy with their carer(s).“Our family knows exactly how to react, what to do, you know, so that helped us get over it like, you know, get to know what happens and how to handle it when she gets seizures.”Family carer of participant 112Several carers reported being confident in dealing with seizures and knew when to alert others and how to react during a seizure.“I get on with it, it's not use sitting down and cry, it's like you, if you look at it could be somebody that's worse off than what I am, so it's like we've learned to live with it, it's not nice”Family carer of participant 112Generally, carers had learned to live with the participant's epilepsy and manage seizures adequately, even though seizures were initially anxiety-provoking and difficult to manage. Some reported receiving support from other family members and from professional care staff. One family carer reported experiencing guilt when they had not noticed warning signs of an upcoming seizure or failed to prevent it or limit its impact.3.2.3.2“The epilepsy nurses gave me lots of information, but not necessarily easy read nothing like that”Family carer of participant 01“Have you ever been kind of given any kind of information about epilepsy, not the book, anything before that? Have you ever had any leaflets about epilepsy? Not really, no. No, so no easy read or anything? No.”Participant 68 and researcher discussing epilepsy related information“Nobody else talked to me about epilepsy, it's you [carer] but I don't know about anybody else.”Participant 23Regarding information needs and support, participants and carers reported mixed experiences but, overall, described the absence of epilepsy-related information and support tailored to their needs. Five carers reported having received information (n = 3) or training (n = 2) about epilepsy, in writing or from healthcare professionals. From the participants' perspectives, 12 participants or their carer indicated that they had not received any information about epilepsy specifically adapted to their needs. One participant indicated having received information about epilepsy but could not remember its content. Only two participants recalled having attended information or support groups about epilepsy, and they reported finding it helpful. Some participants and carers reported receiving accessible information about other topics but not about epilepsy. Four participants reported receiving verbal information from their carer or from clinicians.“They won't let me, the doctor won't tell me nothing, they keep it away, they don't want to tell me yet, so I know they told the staff.”Participant 115One participant who had been recently diagnosed with epilepsy was struck by the lack of information and support provided by the hospital at the time of diagnosis. No information was shared with the participant or his wife; rather, it was shared with care home staff only.“well don't need to now, I'm alright, not now I'm back to normal now”Participant 23 explaining why they do not need any further information or supportAlthough most participants had not received information about epilepsy, in nearly half of all the interviews (n = 7), participants and carers indicated that they did not feel the need for information anymore. They felt that they were in control of their epilepsy and had developed, over the years, a fairly good understanding of the condition.“We actually feed back some of that by, to the Skills and Care course, we do a session for them. Part of their module for new carers to Herts, which we enjoy don't we? And then, yeah, for them, seeing somebody who actually has a bit of epilepsy, and he can relate things that are, that is really meaningful, so it's good really.”Carer of participant 68 talking about the training they deliver togetherSeveral participants and carers also highlighted that one significant aspect of living with epilepsy was to explain and help other people to understand this condition. One participant described negative reactions and stereotypes about epilepsy now and in her childhood. Three participants and carers actively tried to inform people about the condition, raise awareness, and/or train others about epilepsy.3.2.3.3As would be expected from the recruitment method, most participants and carers reported being followed up and in regular contact with the epilepsy clinics in the local area by consultant psychiatrists and epilepsy specialist nurses. Some participants with controlled epilepsy had been recently discharged, and three participants were under the care of a neurologist. When seizures occurred, the majority of carers and participants could deal with it at home, although some participants with more severe epilepsy were occasionally taken to the hospital after cluster seizures.Once we went to the epilepsy clinic, it felt a lot more in control of what we were doing. They're [epilepsy clinic staff] all brilliant, in the fact that you could contact them, and helped us out on so many occasions.”“Carer of participant 01The frequency of epilepsy clinic appointments varied greatly between participants: quarterly, every 6 months, and yearly. Participants and carers were very satisfied with the care and support provided by the staff at the epilepsy clinics. Some participants and carers reported feeling empowered, with perceived increased control of epilepsy.“Because when I go to the doctors and to the epileptic clinic, they're talking to mum more than me because you understand more, don't you mum?”Participant 18One participant reported noticing that doctors at the epilepsy clinic and elsewhere tended to interact more with the carer than with the participant.3.2.3.4“Well, with her medication, I mean, I would say because she's seen the epilepsy nurse and she didn't think she needed it up, to up it, I would say that was very well controlled.”Carer of participant 149Seven participants or their carers reported that epilepsy was fairly stable and well controlled with AEDs. These participants still sometimes experienced seizures, but carers and participants felt that they were as well controlled as they could expect.“what happens is if they increase it just by 1 ml my fits go through the roof, if they decrease it 1 ml my fits go through the roof, but because I'm still having fits my neurologist was saying why don't we put you on something else, and my reply was, “why don't you just leave my medication alone?””Participant 97Several participants or their carers reported having to change medications in order to improve seizure control. Changing medications was considered stressful, occasionally causing worse seizures or side effects. The following side effects were described and considered difficult to manage: tiredness and impairments to mood, cognitive, verbal, and physical skills.4The findings of this study illustrate the significant role that epilepsy plays in the lives of people with ID and the importance of effective epilepsy management. Our group of participants were diverse with differing health profiles, communication preferences, and support needs. However, for most participants, epilepsy was described as a chronic condition that had been present since childhood. Although the frequency and severity of seizures may be reduced through medication, epilepsy can have a long-lasting effect on the everyday lives of people with ID and their carers. Many participants and carers described the epilepsy burden and related impact on their lives, activities, mood, and overall quality of life. Generally, people with ID and their carers expressed satisfaction with the service they received from specialist epilepsy clinics, and many considered their epilepsy to be relatively well controlled by medication despite still experiencing seizures. The majority of participants had never received accessible written information about epilepsy. Some participants expressed that this would no longer be useful to them because of their lived experience of the condition and the support of carers in managing seizures.Previous research has not explored the impact of epilepsy from the perspective of people with ID and their information and support needs. Understanding lived experiences of epilepsy through in-depth qualitative research enables researchers and clinicians to understand barriers and facilitators to epilepsy management and self-management and, in turn, how lives can be improved People with epilepsy in the general population also experience negative effects on their lives, such as anxiety, lack of independence, discrimination, and impacts on employment and social relationships Accessible information, and a greater involvement in decision-making for people with ID and epilepsy, is recommended in clinical practice guidelines 4.1As part of the interviews, we aimed to gather the views of carers who had been involved in the WIELD study, and we also wanted to include people with a range of ID severity and communication styles who may need support from a carer to take part. Therefore, the majority of the interviews took place with people with epilepsy and ID and their carer (11 out of 15), and it was not possible to analyze the views of these two groups separately. As the views of carers have been reported elsewhere The specialist services available for people with epilepsy and ID in the UK vary according to geographical area The majority of the people with epilepsy and ID in this study had epilepsy for most of their lives. Health and care guidelines and available resources have changed substantially since these patients received their epilepsy diagnosis, which is a critical time for information and support. One participant had received an epilepsy diagnosis within the last 12 months and reported a lack of communication and information, but further research involving people with ID who have recently been diagnosed with epilepsy is warranted. A wider examination of current practices around diagnosis of epilepsy for people with ID would also contribute to our understanding about how best to support people with ID and epilepsy.4.2Despite one in five people with ID experiencing epilepsy, research on the management and impact of this condition is limited. This study has shown that the majority of people with ID we interviewed have received minimal information about epilepsy, despite still experiencing seizures and effects on their everyday lives. Management of epilepsy is primarily achieved through medication, although in addition to this, some people with ID and their carers reported adapting their lifestyle accordingly. Accessible and targeted information and support have the potential to empower people with ID to play a more active role in their epilepsy management and reduce the impact on their quality of life. We anticipate that tailored information and support would achieve maximum impact if delivered soon after receiving a diagnosis of epilepsy or at times of clinical decision-making, which was not the case in our sample.M-AD planned and designed the qualitative component of the study. M-AD developed all interview guides, accessible interview guides, and accessible recruitment materials. M-AD applied for the initial NHS ethics application. MEK, DM-P, SM, GP, and AZ recruited participants. SM collected data. SM and M-AD analyzed data. SM and M-AD drafted the article. All authors commented on subsequent drafts and approved the manuscript for publication.This study was approved by Wales National Research Ethics Service (NRES) Committee 5 (Ref: 14/WA/0135).NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number: PB-PG-0213-30042).This manuscript presents independent research funded by the The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.This trial was registered with the National Institute for Health Research (NIHR) Clinical Research Network Portfolio Network (ISRCTN: 80067039).


The increase in multimorbidity or co-occurring chronic illnesses is a leading healthcare concern. Patients with multimorbidity require ongoing care from many different professionals and agencies, and often report a lack of integrated care.To explore the daily help-seeking behaviours of patients with multimorbidity, including which health professionals they seek help from, how professionals work together, and perceptions and characteristics of effective interprofessional, interagency multimorbidity care.Using a case study observational research design, multiple data sources were assembled for four patients with multimorbidity, identified by two general practitioners in New Zealand. In this paper, two case studies are presented, including the recorded instances of contact and communication between patients and professionals, and between professionals. Professional interactions were categorized as consultation, coordination, or collaboration.The two case studies illustrated two female patients with likely similar educational levels, but with different profiles of multimorbidity, social circumstances, and personal capabilities, involving various professionals and agencies. Engagement between professionals showed varying levels of interaction and a lack of clarity about leadership or care coordination. The majority of interactions were one-to-one consultations and rarely involved coordination and collaboration. Patients were rarely included in communications between professionals.Cases constructed from multiple data sources illustrate the complexity of day-to-day, interprofessional, interagency multimorbidity care. While consultation is the most frequent mode of professional interaction, targeted coordinated and collaborative interactions (including the patient) are highly effective activities. Greater attention should be given to developing and facilitating these interactions and determining who should lead them. Patient 1 responded to the interviewer’s question, which referred to a previous conversation about possibly”) to the interviewer’s query about the possible value of this. Patient 2: “I don’t think they do [talk to each other]”. Interviewer: “Would it be good if they did?” Patient 2: “I guess possibly at stages there would have been times when it could have been useful. But I don’t know what the outcome would have been… except that that my GP and my midwife would know what’s happening”.Patient 2 discussed not knowing if her GP (GP2) communicated with the midwife  and then responded with a somewhat uncertain response  and electronic methods (11 times via email or secure electronic messaging). There was one internal face-to-face meeting. “[It’s] by letter [to the specialist], mostly it’s asynchronous, by written correspondence. That’s the most common, with the patient in the middle, sometimes conveying information, it’s quite uncommon for a GP to be actually speaking to a specialist”. Interviewer: “Not a face-to-face?”. GP1: “In fact, some of these specialists, I’ve dealt with them for years, and I wouldn’t have met them”.In the interviews with the two GPs, the interviewer explored the GPs’ interaction with other professionals or agencies. GP1: “So do you have a particular view on collaboration, then? [Patient 1] thought it was unusual that you included her in the [GP’s] letters, and she appreciated that”. Physician: “… increasingly I think that’s a good way of communicating… it’s pretty straightforward to actually include the patient in the communication, but it hasn’t been the tradition in medicine”.In contrast, the nominated professional (physician) working with Patient 1 described attempting to actively communicate with both the patient and the GP, explaining his belief why this was important. Interviewer: “Has being part of this tiny study… made you think any differently about collaboration?” GP2: “Yes it has actually. Because… I don’t think we document this stuff well, I don’t think it would be clear from the outside that this collaboration was happening. So [it] definitely made me think, if this is your model, then you need to …document when going to work closely with [others]. And we’re going to try and make sure we’ve got those bits of information, being clear that we are collaborating. I’d like to retain some sense of being that coordinating role”. Interviewer: “Mm”. GP2: “[currently] you are just firing out a referral, and getting that expertise to come back… hoping that it will come back to you, so that you can reformulate and move on. … So perhaps being more clear about that, even in the written letter, ‘I want to be kept closely informed about the progress’”.GP2 expressed a general concern about the type and level of interaction that occurred with Patient 2 and the ways in which to improve interactions. Interviewer: “I think I remember talking with [Patient 2] ‘Do you know who you’re going to go to [which midwife]?’. I haven’t had any contact with the midwife… at all, actually”. Interviewer: “And they haven’t sought you out?”. GP2: “No, they haven’t sought me out or fed back to say, ‘It’s all going well’. When I left it to [Patient 2] to contact the midwife, how much information did [Patient 2] tell them about where she’s at with her mental health? So I possibly could have closed that loop by checking in with the midwife”.Although GP2 desired a more collaborative model of interaction, from the nominated professional’s perspective (midwife), in reality there were barriers to this happening. GP2 acknowledged that she had not made contact with the midwife. GP2:“have filled in the form for [insurance]”. This form of interaction meets the definition proposed by Cohen et al. for consultation  and other professionals/agencies. Analysis of the interaction showed that, although still mainly unidirectional , it was either responding to and/or inviting further contact. However, in contrast to the consultation form of communication, the written communication used phrases inviting other professionals to align with care, such as,consultation  agency, and was recorded as a file-note in the EHR as, “Phone call to maternal mental health to inform [a clinical event]”. Seven days later, a letter from the MMH was sent to the patient and copied to the GP, acknowledging the phone call and noting the agency had confirmed an appointment time with the patient. These interactions (recorded summaries in the EHR and copies of letters) detail joint decisions and actions to be undertaken by the various parties, and meet the definition of collaboration, as proposed by Cohen et al.  communication between two of the professionals see . The fir“If you need to get hold of me at any stage you can either call the clinic on [phone number of agency] or my cell [phone number of mental health nurse]”. This interaction meets the definition of coordination, as proposed by Cohen et al.  and another agency (MMH), including the involvement of two MMH clinicians . Analysis of the written documentation (email) showed a reciprocal exchange of information about the care of Patient 2, with one clinician inviting a follow-up contact, consultation alone. There were a few instances in which the interactions with Patient 2 showed separate, but aligned care delivery, indicating coordination, or shared sense-making, decision-making, indicating collaboration . The first instance involving GP2 and Patient 2 was in response to a mental health crisis when the GP2 phoned  a delay in her being seen. … Yes. I chased them up. I did sort of, put a little bit more pressure [on]”. This example of collaboration proved very helpful from the perspective of Patient 2, and when interviewed, she described how she was about to meet with the midwife and the mental health nurse from the MMH agency to form a joint care plan. Patient 2: “There’s a huge overlap with my carers… Like tomorrow I’m meeting with my midwife and my mental health nurse. That immediate plan, post-natally, and to get all that in place, and to have some strategies ready”.The second instance of The final stage of analysis combined all data sources  to create expanded case syntheses involving Patient 1 and Patient 2 and the professionals.Patient 1 recorded day-to-day involvement with a very large team of traditional and non-traditional professionals, most working in separate agencies. She reported that she takes a key role in coordinating those involved in her care, and her GP agreed this was so. Patient 1 actively works on a one-to-one basis with each professional and selectively facilitates interaction between a few, stating she does not necessarily want each to be aware of the others – particularly the health professionals being aware of the CAM professionals. Although there is a large team involved, possibly at stages”. Patient 2 recorded day-to-day involvement with a small number of professionals who worked in separate agencies. She reported a limited role with the professionals in her care, although the GP reported that Patient 2 had independently contacted her midwife. Patient 2 said she did not actively facilitate interaction between her professionals and was uncertain about whether or not this would have been useful using the qualifying phrase “et al. point out that each of the 3Cs is necessary to provide care and that each has its place; however, arguably, when patients with multimorbidity require care from several professionals and from different agencies, collaboration is the ideal [The two cases studied in depth illustrate two female patients with likely similar educational levels, but who had different profiles of multimorbidity, socioeconomic circumstances, and personal capabilities. When the data from all sources were analysed, common issues emerged relating to communication between professionals in different agencies, the coordination of care, including leadership, and the level of involvement of the patient. When the various data sources were considered together, like other studies , 42–44, he ideal . It is set al. [“Care coordination a high priority” for patients with complex needs [The CSOR methods enabled the identification of day-to-day help-seeking behaviours by the patients and the interactions between them and the general practice (particularly GPs), as well as with other professionals or agencies. Similar to other research, this study shows patients with multimorbidity can have large or small teams of professionals  and include various agencies . Howeveret al. , have suex needs . et al. believe the syndemics theory should be given attention to, in relation to multimorbidity, as it explains the unpredictability and complexity of disease interactions and why “social, environmental or economic factors promote such interactions and worsen disease” [The two patients presented in our study appeared to adopt very different roles with their healthcare teams; with one characterized as a ‘strong’ role and the other a seemingly ‘restricted’ role. Although not the only roles that patients adopt , this stdisease” .et al. [et al. [Mangin et al.  argue fo [et al.  believe et al. [The two patients highlighted in our study used various methods to try to communicate with professionals and agencies. The most common methods were face-to-face and one-by-one interactions, which are typical approaches in New Zealand. These forms of communication are relatively expensive and time-consuming, and looking to the future, as multimorbidity increases, will likely be impractical and unsustainable, especially if large numbers of professionals are involved . While set al.  that havet al. , 54.As with other studies , 43, 44,There are strengths and limitations in this study. The case study design does not purport to produce generalizable results, rather it illustrates problems for the particular cases in their specific health system and community context . The numTwo case studies of those with multimorbidity are provided. While there is no typical profile for such a person, and social circumstance as well as personal attributes and capabilities influence how well people manage , ideallyet al.’s 3Cs model. The 12–13-week data collection period may not have been long enough to show or make clear any pre-existing collaborative relationships between professionals.The challenging observational health encounter diary method is likely to be even more difficult for patients with multimorbidity. It is not surprising that there was some unreliable recording of the daily diary, despite prompts and encouragement from the research team, and this is a limitation. Although GPs may have selected patients they thought would demonstrate ‘ideal interactions’, in-depth analysis showed that these interactions were variable, and the range enabled interactions to be classified according to Cohen The two patients who are described in this study contribute to our understanding of the complexity of interprofessional, interagency multimorbidity care. Each navigates a complex environment of healthcare systems, interacting with an array of healthcare professionals and others. When the patient is included in communications concerning their care, it is appreciated. Questions remain about who should lead or take responsibility for coordination of care and how this might play out in collaborative practice when health status fluctuates and varies.Further opportunities are needed in multimorbidity research to examine patients, general practice, and other professional’s contemporaneous involvement in care, including consultation with each other, coordination of professionals and services, and cross-agency professional collaboration. There is a need to develop models of interagency care that increase the likelihood of providing coordinated or collaborative care.


Clinical practice guidelines have been developed for many common conditions based on data from randomized controlled trials. When medicine is informed solely by clinical practice guidelines, however, the patient is not treated as an individual, but rather as member of a group. Precision medicine, as defined herein, characterizes unique biological characteristics of the individual or of specimens obtained from an individual to tailor diagnostics and therapeutics to a specific patient. These unique biological characteristics are defined by the tools of precision medicine: genomics, proteomics, metabolomics, epigenomics, pharmacogenomics, and other “-omics.” Personalized medicine, as defined herein, uses additional information about the individual derived from knowing the patient as a person. These unique personal characteristics are defined by the tools of personalized medicine—personomics—which take into account an individual’s personality, preferences, values, goals, health beliefs, social support network, financial resources, and unique life circumstances that affect how and when a given health condition will manifest in that person and how that condition will respond to treatment. In this paradigm, precision medicine may be considered a necessary step in the evolution of medical care to personalized medicine, with personomics as the missing link. There is much discussion today about “precision medicine” and “personalized medicine.” Although these terms were not in common use a century ago, physicians in 1917 might well have described their practice using these terms. Physicians generally knew their patients well as people. Physicians and patients often shared the same local community, schools, stores, house of worship, current events, and gossip. Although medicine may not have been well-grounded in science, medical care was personally tailored to the individual.Although physicians a century ago may have practiced a type of personalized medicine, it would be difficult to say that personalized medicine is the norm today, however defined. The last several decades in medicine have been marked by the generation of masses of data from randomized controlled trials (RCTs) that have led to the development of a new field of evidence-based medicine (EBM). EBM has, in turn, led to the generation of clinical practice guidelines for many, if not most, common conditions, not only based on RCTs, but on meta-analyses of those trials. In fact, in many countries, incentives are provided to physicians whose practice is consistent with these guidelines, with penalties to those whose practice is not. When medicine is informed strictly by clinical practice guidelines, the patient is not treated as an individual, but rather a member of a group. Individual variation is certainly not the driver of medical practice; instead, care is based on groups of individuals with similar characteristics who have a similar health condition at a similar stage of progression. In this paradigm, treatment recommendations are often guided by predictions about prognosis and by assessments of risks and benefits that are based on groups of patients felt to be similar to the patient being treated. Indeed, the process of prognostication is—like the creation of an actuarial life table—by definition, treating each individual as if he or she is not unique. It is based on the notion that predictions about an individual can be made based on the prior experience of a group of people felt to have similar characteristics in what is felt to be a similar situation.As we consider the practice of medicine today and the ideal practice of medicine in the future, we should begin by defining the terms precision medicine and personalized medicine. This commentary proposes an operational definition of these terms and the use of a recently coined term—personomics —to help Personalized medicine adds to that information derived from knowing the patient’s unique psychosocial situation, taking into consideration the individual’s personal preferences and health beliefs, as well as the individual’s values and goals. As much as genomics, proteomics, metabolomics, epigenomics, pharmacogenomics, and other “-omics” are the tools of precision medicine, personomics  can be uTo understand this evolution—over the last 25 years—of medical care informed by clinical practice guidelines to a precision medicine approach, and then to think about how personalized medicine might be practiced, it may be useful to consider the treatment of a 72-year-old woman with node-positive, estrogen receptor (ER)-positive breast cancer diagnosed on a routine mammogram. In 1992, this patient’s care would have been informed by an important publication from the Early Breast Cancer Trialists’ Collaborative Group on the systemic treatment of early breast cancer by hormonal, cytotoxic, or immune therapy [The situation for this woman would be different today, since precision medicine allows us to base her treatment recommendations on the classification of her tumor into specific molecular subtypes identified from the analysis of genomic alterations in tumor tissue . Predictp = 0.008) and increased median survival from 20.3 to 25.1. months (p = 0.01) [Precision medicine would also recognize if this woman’s tumor was among the 15–20% of breast cancers that overexpress HER2, a finding that is associated with aggressive tumor behavior and reduced survival ,13. If t = 0.01) . Today’s = 0.01) . A recen = 0.01) .Despite these advances, there are limitations to precision medicine, even in the field of oncology. Tannock and Hickman recently reviewed trials of cancer therapy guided by genetic sequencing and noted that “The outcomes of these investigations are discouraging” . While iHow would this woman be treated using a personalized medicine approach? Using the tools of personomics, the physician would get to know this patient as an individual. The physician would certainly consider the patient’s age and general health status, and the physician would most definitely inform treatment decisions based on the molecular subtype of this woman’s tumor. In addition, though, the physician would ask and learn about this woman’s values and goals. The physician would ask and learn about the support this woman would likely receive (or not) from family and friends. This support would be needed regardless of the type of treatment used, and it may be more likely to be needed in the short term if cytotoxic chemotherapy is recommended or if molecular targeted treatments are used that may result in dose-limiting side effects. The physician would ask and learn about this woman’s health beliefs, and in particular whether she favors doing whatever possible to prolong life or whether quality of life is more important to her. The physician would ask and learn who is most important in the patient’s life and the extent to which she depends on these individuals to make critical health care and life decisions. The physician would ask about this woman’s financial circumstances and health insurance coverage and consider her ability to afford the type of medications that might be needed to treat this tumor type, since some of these medications—in particular many of the newer targeted therapies—may be very expensive and might not be covered by some forms of health insurance. The physician who practices personalized medicine would base a recommendation about systemic chemotherapy and other targeted therapies on this woman’s age, general health, recurrence score testing, and all the information gleaned from putting personomics into practice. In summary, the evolution from medical care based on clinical practice guidelines to precision medicine to personalized medicine is, in many ways, an evolution from lumpers to splitters. Clinical practice guidelines lump patients together based on certain shared characteristics. As Sacristan and Dilla note, “… guidelines are based on the results of large RCTs and meta-analyses containing information that, in theory, is applicable to ‘average patients’. However, doctors do not treat average patients; thus, this ‘generalizable knowledge’ that may be useful to standardize medical practice is not the most appropriate to treat individual patients” . Precisi