Adolescents are the most vulnerable population to initiate tobacco use. It is now well established that most of the adult users of tobacco start tobacco use in childhood or adolescence. There has been a perceptible fall in smoking in the developed countries after realization of harmful effects of tobacco. The tobacco companies are now aggressively targeting their advertising strategies in the developing countries like India. Adolescents often get attracted to tobacco products because of such propaganda. There has been a rapid increase in trade and use of smokeless tobacco products in recent years in the country, which is a matter of serious concern to the health planners. It is important to understand various factors that influence and encourage young teenagers to start smoking or to use other tobacco products. The age at first use of tobacco has been reduced considerably. However, law enforcing agencies have also taken some punitive measures in recent years to curtail the use of tobacco products. This paper focuses on various tobacco products available in India, the extent of their use in adolescents, factors leading to initiation of their use, and the preventive strategies, which could be used to deal with this menace. Tobacco use in children and adolescents is reaching pandemic levels. The World Bank has reported that nearly 82,000–99,000 children and adolescents all over the world begin smoking every day . About hIndia is the second most populous country in the world. It is a secular country but the Hindus form the majority. Hinduism traditionally advocates abstinence from all intoxicants. Even then, India is the third largest producer and consumer of tobacco in the world. The country has a long history of tobacco use. Tobacco is used in a variety of ways in India; its use has unfortunately been well recognized among the adolescents -15. TobaConsidering the enormous health complications associated with tobacco use, it is of utmost importance to understand the factors leading to its use and to plan strategies to reduce its intake. This is especially relevant for the developing countries like India, where tobacco use continues to be common notwithstanding the recognition of harmful consequences of its usage. This paper reviews the patterns of tobacco use in India, its prevalence in Indian adolescents, role of psychosocial factors in initiation and prevention, and the steps taken by the State to control its use.Human beings have been using tobacco since 600 A.D. . It was Harmful effects of tobacco have been recognized over the last 1000 years. Historically, three contemporary rulers, King James I of England, Shah Abbas of Persia and the Mughal emperor Jahangir of India  in 16th century had noticed the harmful effects of tobacco and tried to ban it. King James had commented on smoking as being "a custom loathsome to the eye, hateful to the nose, harmful to the brain, and dangerous to the lungs". Jahangir had even passed orders prohibiting smoking tobacco. Khalil Pasha was more stringent and had passed a prohibitory decree against tobacco smoking that "anybody caught smoking tobacco would have his lips cut and eyes taken out". In 1014 Hijri, Russia had also passed certain regulations against smoking ,22,23.India has a distinct tradition of enforcements against tobacco use being initiated by the past kings (like Jahangir) and the religious leaders at different times in the history. The great Indian Sikh Guru Gobind Singh prohibited smoking for the members of the Sikh community. He said, "Wine is bad, Indian hemp (bhang) destroys one generation, but tobacco destroys all generations" ,23. TobaIn the modern medicine, its harmful effects have been recognized over the last 4 decades ,24. AlthTobacco is used in a wide variety of ways in India including smoking and smokeless use.beedis and cigarettes or by using devices like hooka, hookli, chhutta, dhumti, or chillum [Tobacco is smoked in the forms of  chillum ,25,26. SCigarette smoking is common in urban areas. Both locally manufactured and imported brands of cigarettes are available. However, because of relatively higher cost of cigarettes as compared to other forms of tobacco, cigarette smoking is more common among the upper and middle socioeconomic classes than among the poor population.Beedi is a cheap smoking stick, handmade by rolling a dried, rectangular piece of temburni leaf (Diospyros melanaxylon) with 0.15–0.25 g of sun-dried, flaked tobacco filled into a conical shape and the roll is secured with a thread. The length of a beedi varies from 4.0–7.5 cm. Beedis are commercially available in small packets.Hooka (a hubble bubble Indian pipe) is an indigenous device, made out of wooden and metallic pipes, used for smoking tobacco. The tobacco smoke passes through water kept in a spherical receptacle, in which some aromatic substances may also be added. Hooka smoking is a common method of socializing among the village folk, especially in the Northern and Eastern parts of India, and is a part of the rural cultural life. Its use is more common among the adults and older generation. However, it is not popular among adolescents, because the adults generally discourage younger population from using hooka.Hookli is a short clay pipe-like device, being about 7 cm long, and is used for smoking tobacco in some parts of the country.Chhutta is a coarsely prepared roll of tobacco (cheroot), smoked with the burning end inside the mouth (reverse chhutta smoking). Its use is prevalent in coastal areas of the province of Andhra Pradesh in southeastern India.Dhumti is a cigar-like product made by rolling tobacco leaves inside the leaf of jackfruit tree. Occasionally, dried leaf of a banana plant is used. Males smoke dhumti in conventional manner, whereas females smoke it in a reverse manner, i.e., keeping the burning end inside the mouth. Dhumti smoking is quite popular in the Goa province of the Western India.Chillum is a conical clay-pipe of about 10 cm long. The narrow end is put inside the mouth, often wrapped in a wet cloth that acts as a filter. This is used to smoke tobacco alone or tobacco mixed with ganja (marijuana) in northern parts of the country.betel quid chewing, mishri, khaini, gutka, snuff, and as an ingredient of pan masala.Tobacco is used in a number of smokeless forms in India, which include Betel quid is a combination of betel leaf, areca nut, slaked lime, tobacco, catechu and condiments according to individual preferences. Tobacco is an optional component. Its use is prevalent all over India. However, there are differences in the components used in different regions of India.Khaini consists of roasted tobacco flakes mixed with slaked lime. This mixture is prepared by the user keeping the ingredients on the left palm and rubbing it with the right thumb. The prepared pinch is kept in the lower labial or buccal sulcus. Its use is common in eastern India.Mawa is a mixture of areca nut, tobacco and slaked lime and is chewed. Its use is common in rural areas of Gujarat province. It is quite popular among the young population of ages 15–19.Snuff is a black-brown powder obtained from tobacco through roasting and pulverization. Snuff is used via nasal insufflation and is popular in eastern parts of the country. It is also applied on the gum by finger  in the Western India, where it is known as bajar and mishri.Gutka is a manufactured smokeless tobacco product (MSTP), a mixture of areca nut, tobacco and some condiments, marketed in different flavors in colorful pouches.Pan masala is a betel quid mixture, which contains areca nut and some condiments, but may or may not contain tobacco. The mixture is chewed and sucked. Unlike cigarettes, tax levied on pan masala is low. Low cost and not being associated with smoke have led to an enormous increase in the use of all types of areca nut and smokeless tobacco among the Indian population including adolescents. It has also been promoted as a "post meal mouth freshener", making it quite popular. Initially, it was more popular in the Northern India, but with a massive advertising, it is now being used all over the country. Pan masala is as harmful as smoking, although the nature of harmful effects are different. Its use has been associated with high risk of oral cancer and submucus fibrosis in mouth, which also has a high potential for cancer development. It is made by the use of waste tobacco, mid-ribs of tobacco leaves and floor sweepings from cigarette factories. It is available in the forms of small packets and cans, sold at affordable prices with attractive, shiny colored wrappings [rappings ,25,27,28Beedis, khaini, and mishri are commonly used in rural areas and cigarettes are mainly used in urban areas. Pan masala was initially popular in the urban segment only, but over the last few years, it has been consumed in rural areas as well.pan masala and chewing of tobacco in different forms. Tobacco is also smoked using indigenous devices like hooka, chhutta or dhumti in different parts of the country [According to the most recent Government of India's National Sample Survey data, there are 184 million tobacco consumers in India. About 40% of them use smokeless tobacco, 20% consume cigarettes, and another 40% smoke beedis. Smokeless tobacco use includes Adolescents and children are the prime targets of the tobacco industry when recruiting new smokers. About 20 million children of ages 10–14 are estimated to be tobacco-addicted according to a survey done by the National Sample Survey Organization of the Indian Government. To this astounding figure, about 5500 new users are added every day, making two million new users every year . AdolescDuring the last three decades, a number of epidemiological surveys has been conducted in different parts of India to study the prevalence of tobacco use by adolescents. The study populations have included school and college students, medical students and street children :Table The prevalence figures vary according to the criteria used to define tobacco use habits. For example, in one study ever-smokers constituted 14.2% of the study population and current smokers (defined as having smoked in the last week) formed 7.1% of the study sample . More thThe girls had a very low (1.1%) prevalence of tobacco use. Most boys who were using tobacco were smokers (86%). Significantly higher proportion of boys smoked if their father or best friend smoked. Generally, boys were more sensitive to the best friend's or elder brother's disapproval rather than the parental. They were well informed about the general harmfulness of smoking but there was no knowledge on any specific health hazard.Although smoking is rare among female students, the use of snuff is not uncommon. Gavarsana et al. found tobacco-snuff-use in 38% of males and 12% of females in a sample population of 599 college students [et al. found 26.4% to be smokers [Most students enter medical schools in India in their late adolescence. A number of researchers in India have investigated the use of drugs and smoking among medical students ,8,31-33.Venkatraman et al. studied time trends in smoking behavior among the alumni enrolled in MBBS course of a medical school in South India during the period 1955–1988 [gutka. Initiation of tobacco use peaked at class ten (32%) or classes 11 and 12 (32%), equal to the ages of 15–17. The factors found significant in leading to a higher tobacco consumption included lack of family supervision among hostels, peer influence, lack of awareness about the harmful effects of different tobacco products, no exposure to clinical cases of tobacco related disorders, and easy availability of these products.In another recent study on tobacco use among 400 male medical students from the state of Bihar in north India , 43% of It appears that from 1970 to 1998, there has been changes in patterns of tobacco use with a fall in cigarette smoking and an increase in MSTP consumption. This may be due to changes in social structure and behavior, increasing awareness about the hazardous effects of smoking and marketing effects of MSTP. Family influences remain an important factor among tobacco users.India has probably the largest population of street children in the world. The metropolitan cities like Delhi, Mumbai (Bombay), Kolkata  and Bangalore have each around 100,000 of street children. The majority of them maintain tenuous ties with their families, but many have no families at all, having an extremely stressful life.gutka and khaini) mixed with other drugs as adulterants, followed by beedis and cigarettes. Older children of ages 15–16 use nicotine along with other hard drugs. There is scanty data on age at the first use of drugs, but anecdotal reports indicate that the age is very low and is getting further younger. The youngest age at the first use of a socially sanctioned drug has been reported to be five [Drugs of abuse give these kids excitement and relief from the all pervasive gloom of street life and serve to suppress hunger and helplessness. Tobacco-based products stimulating the CNS to improve alertness are used by these children to get relief from insomnia due to long working hours. The usual pattern of drug abuse by male and female kids of ages 5 to 10 is through chewing tobacco , current cigarette smoking was found to vary from 10% to 33% and ever-smoking from 15% to 70% across different countries. In Russian Federation, Sri Lanka and Ukraine, smoking was found to be more common among boys than in girls, whereas it was more common among girls in China, Fiji, Jordan, and Venezuela [Tobacco use and especially smoking is a male-dominated phenomenon among children and adolescents in India. This is unlike the West, where its distribution is equal among both genders. In some countries like China, Fiji, Jordan and Venezuela, smoking is rather more common among females. In India, the use of smokeless tobacco has become popular during the last few decades. A decline in tobacco use, as evident in the USA and some European countries, does not seem to be observed in near future in India. In contrast, the use of chewing tobacco seems to follow a rising trend, particularly among the street children and college students, which is a matter of serious concern.A number of factors influence the use of tobacco by children and teenagers. Some of these are the family history of tobacco use by elders, peer influence, experimentation, easy access to such products, personality factors, underlying emotional and psychological problems, accompanied risk-taking behaviors, and most importantly, the aggressive marketing strategies of the tobacco industry.beedis or cigarettes from a nearby shop or kiosk. By this way, children are often introduced to such products at their very early life stages. A child growing in such a family watching his elder brother, father, uncles or grandfather using tobacco may perceive it as a family tradition that is to be followed. On the other hand, it is interesting to know that as an Indian tradition, younger individuals are not expected to smoke in the presence of elderly, because smoking by a younger person is taken as in contempt of the older people. Therefore, it is a paradox that the same elderly people, who passively show the way to smoke, are prohibitive of the same behavior by the younger generation in their own presence. However, this value system does not apply to the use of smokeless tobacco products.Family plays a very important role in initiation of tobacco use by a young child or adolescent. Tobacco use by parents or an elder sibling increases the likelihood that a child begins smoking ,11. As aAlthough children may start smoking for psychosocial reasons like peer influences, curiosity, desire for experimentation or as a remedy for stress, the pharmacological motives take on place very early in their smoking career . Consequbeedi by a friend initiates the conforming process with a tobacco-using peer-group network [Peer pressure is an important determining factor for initiation of tobacco use among children and adolescents. There are several processes by which being associated with drug-using peers contributes to drug-abusing behavior. Here, modeling and social approval play an important role. When one is distressed due to any reason, an offered cigarette or  network ,28.Beedis are a bit cheaper than the cigarettes and hence are preferred by the poor who cannot afford cigarettes. The newly introduced MSTP are also cheaper than cigarettes and do not carry the trouble of lighting, and therefore, are more convenient to use, which makes it popular among the users [Tobacco products are socially sanctioned but are freely available in every nook and corner throughout the country. he users .Poor school performance, truancy, low aspiration for future success, and school dropouts have been found to be associated with smoking at an early age . ChildreAdvertisements of various tobacco products are very common in all forms of media including the print media, television, and the roadside hoardings and banners. Tobacco advertising and promotion effectively target the young people with images of smokers as trendy, sporty and successful ,43. CharSome multinational tobacco companies are also involved in sponsoring of mega sport events like international cricket matches and some even have instituted bravery awards. These attract the vulnerable child or adolescent towards smoking with an idea that it may be a heroic or desirable activity to adopt because of the apparent positive associations. Advertisements and promotion of cigarettes have been reaching its peak in developing countries like India due to a sharp decline in sales in Western countries .khaini, mishri or smoking beedis are common. In rural areas, smoking by hooka and tobacco chewing are common. Over the last 2–3 decades, particular chewable tobacco products are being highly promoted for sale and their use is being linked with the society's upper-class business-community in order to popularize them among the masses. Therefore, the socio-cultural influences are quite complex in these regards and in establishing changes in tobacco use among the public.To summarize, multiple factors determine initiation of tobacco use. These factors are both promoting and prohibitive and have been constantly changing over the time depending on several economical and marketing forces. Traditionally, cigarette smoking had an association with the upper class of the society, reminiscent of the British colonial era. Though in the recent past it has percolated to all strata of the society, it is still more common among the upper and middle classes. Among the lower income groups, smokless tobacco like Considering the enormous adverse health consequences accompanying tobacco addiction, it is very important to develop preventive strategies to reduce tobacco consumption. Preventive strategies especially focused towards children and adolescents need to be initiated on emergent basis. This is more important for the developing countries like India, which have become the main targets of advertisement and promotional propaganda of various multinational tobacco companies ,4.Preventive approaches include spreading awareness about the actual hazards of tobacco in the community especially among the vulnerable children and adolescents, curbs on advertisement and promotional campaigns, early identification of the users and providing treatment ,29,44,45hooka and beedis, and by the smokeless forms like gutka. In fact, a majority of Indian people are not aware of the health consequences caused by smokeless tobacco products. Added to this, a wrong belief is being spread throughout the country that beedis are less harmful than cigarettes. Some indirect promotional efforts even spread an untruth about some beneficial effects of beedis such as being abdominal gas and constipation reliever! Thus, in a country like India, widespread community awareness program on the hazards of local and cheaper tobacco products like beedis and gutka are more essential than few school based programs.The benefits of early educational programs have been well reported for school children . Such prA couple of programs are already in progress for the street children in India. A training module has been prepared for the non-governmental organizations (NGOs), for offering need-based intervention to the street children. The work was conducted under the auspices of WHO, UNICEF, and the Ministry of Health & Family Welfare of the Indian Government. Drug abuse and high-risk behavior have also been studied among the street children. UNICEF is conducting training courses for NGOs and street educators who are expected to find and help the street children abusing drugs ,33.A very important step in primary prevention is the revamp of the existing tobacco policies of the government. The Government of India has recently taken some important legal measures, but there are still many problems in the enforcement of tobacco related law. Restrictions have been imposed on sales and on tobacco use in public places like railway stations, airports, hospitals and governmental offices. However, the more important aspect would be the strict observation and control of such restrictions. The sales of all tobacco products including the MSTP and their easy access strongly need to be banned for children and adolescents. An initiative in this regard has been taken by stopping tobacco sale in vicinity of schools. Countries like UK have imposed age restrictions in purchase of tobacco products. Stopping sales of tobacco to children is an important step towards reducing the number of tobacco users among the new generation .The limitations of the long-term success of the school-based interventions  have ledTobacco industry has been facing strong opposition from the legal and public forums similar to those in the Western countries like USA. As the dangers of smoking began getting more and more identified, legal enforcements for prohibition of tobacco advertisements and declaration of nonsmoking zones have become a worldwide phenomenon, especially in the last 2–3 decades. India has recently passed the Tobacco Products Bill 2001 ,46, whicThe effectiveness of many of these steps is now well documented. Long term studies have shown that a ban on advertising tobacco products is effective in reducing their consumption . It is aEnforcements of laws have often been a problem in India. For example, although nonsmoking zones exist at important public places, especially in the large cities, there is an utter disregard for them. Nobody minds smoking by others, particularly in villages or small cities. There is a need to initiate massive public awareness campaigns educating people about serious health consequences of smoking, passive smoking, and smokeless tobacco use. Steps towards this direction have been taken, but it may take some time to obtain the results.Humans have used tobacco in many forms for several centuries. Its use often starts early in life. In recent years, there has been a rising trend in tobacco use, more in smokeless forms in India. There are no nationwide data available in India on the exact extent of the tobacco use among adolescents, although a number of surveys have been reported from different parts of the country. These show a general tendency towards an increase in tobacco use by the youth for the past few decades, with an emphasis on the use of smokeless tobacco. This is a matter of great public health concern. Psychosocial factors have an important role to play in initiation of this habit. It has been observed that a large number of adolescents pick up this habit from their family members or the peers. Advertisements of tobacco products and promotional campaigns by the manufacturers also play an important role in initiation of the habit by adolescents. This has attracted the attention of health professionals, media and law enforcement agencies. The local governments are also taking steps in putting curbs over the sales of tobacco products to children, and in regulating tobacco advertisements.There is a need to collect nationwide data on the use of different forms of tobacco by children and adolescents, and the factors leading to initiation of such harmful habits. There is an urgent need to take effective steps, especially on launching community awareness programs for the school children and public to educate them about the consequences of tobacco use, and on assessing their effectiveness in curbing the problem. It is also necessary to keep abreast of the policies and conventions of the international agencies like WHO, UNDCP and other similar agencies on tobacco use, in order to utilize their expertise for curbing this problem.* English medium schools are the ones where English is the primary language of instruction for all subjects except for the modern Indian languages, whereas in Indian language schools, one of the Indian languages is the language of instruction for different subjects. Municipal schools are the ones run by the State, whereas the private schools are run by private organizations and not financed by the State.The authors declare that they have no competing interests.


Although smoking is known to be powerful risk factor for other vascular diseases, such as cardiac and peripheral vascular disease, only relatively recently has evidence for the role of smoking in the development of stroke been established. The reasons for this advance lie in the acknowledgement that stroke is a heterogeneous disease, in which its subtypes are associated with different risk factors. Furthermore, improvements in the stringency of epidemiological studies and the greater use of CT scanning have enabled the role of smoking in the development of stroke to be elucidated.This is a qualitative examination of high quality epidemiological studies in which the role of smoking and passive smoking, as a risk factor for cerebral infarction, intracerebral haemorrhage and subarachnoid haemorrhage, is examined. In addition, the pathological mechanisms by which smoking or passive smoking may contribute to the development of stroke are reviewed.Smoking is a crucial independent determinant of cerebral infarction and subarachnoid haemorrhage, however its role in intracerebral haemorrhage is unclear. Although studies are limited, there is evidence that exposure to passive smoking may also increase the risk of stroke. Smoking appears to be involved in the pathogenesis of stroke via direct injury to the vasculature and also by altering haemodynamic factors within the circulation. Importantly, smoking is modifiable risk factor for stroke. Therefore, the encouragement of smoking cessation may result in a substantial reduction in the incidence of this devastating disease. Although smoking is an established and potent risk factor for other vascular diseases, such as cardiac and peripheral vascular disease ,2, the eCerebral infarction is the most common subtype of stroke, accounting for more than 70% of all strokes . Over thThe relationship between smoking and cerebral infarction has been confirmed in more recent case-control studies from the U.S., Australia, U.K., Scandinavia, and Russia Table  10-13,1,23,25,35Similar results have been obtained in cohort studies in the United States and Taiwan ,19,21,36The use of pack-years by investigators to determine the dose of lifetime exposure to cigarettes was used in some studies ,23. ThisThe difference in the definition used for exposure is an important issue. Measuring pack-years provides information on both the quantity of cigarettes smoked and the duration of this level of smoking. Thus it could be that either or both of these factors contribute to the increased stroke risk. It would be useful to determine whether one pack per day for 20 years produced a stroke risk similar to that of two packs per day for 10 years (with both equating to 20 pack-years). However, this type of information relies heavily on participant recall. Such accurate recall may be challenging, especially for individuals with cognitive deficits following stroke. Partly because of the difficulties outlined, it remains to be established whether it is the quantity or the duration of smoking that results in the increased risk of cerebral infarction.The effect of cessation of smoking on the subsequent development of cerebral infarction is important in determining a causal relationship between this disease and smoking. In men, Kurth and colleages found that past smokers had a risk of cerebral infarction comparable to that of never smokers  . KawachiSimilar results have been reported from case-control studies. In studies conducted in the U.S. ,25, ex-sSubarachnoid haemorrhage (SAH) accounts for only about 2–9% of strokes , but is In a cohort study Kawachi and colleagues found an adjusted relative risk of SAH of 4.85  among current women smokers . ImportaThe RR of SAH among former smokers is consistently less than that among current smokers ,18,19,26These studies demonstrate that smoking is a major independent risk factor for SAH. Importantly, this association is strengthened by the presence of a dose-response relationship. Of note is that ex-smokers are found to be at a higher risk of SAH than never smokers for many years after smoking cessation, but it appears that within 10 years their risk will return to that of a never smoker .In a meta-analysis of published studies of smoking and intracerebral haemorrhage (ICH), the pooled relative risk of ICH associated with smoking was 0.74  . HoweverThe most recent published data on smoking and intracerebral haemorrhage comes from the Physicians' Health Study, which included 108 cases of ICH . The invAnother study that somewhat supports the findings of Kurth and colleagues involved a prospective study of haemorrhagic stroke patients in the US . AlthougIn contrast to the previously mentioned findings, numerous investigators have found no association between smoking and ICH. In a large sample of patients with ICH (331) and using case-control methodology, Thrift and colleagues found no increased risk of intracerebral haemorrhage associated with smoking  . ImportaThe results of 13 studies, in which the contribution of smoking in the risk of ICH was investigated, were included in a recent meta-analysis . The autBeyond the damage that active smoking may cause an individual are the adverse effects that inhaling environmental tobacco smoke (ETS) from the sidestream smoke of a burning cigarette may cause others. This smoke contains high concentrations of CO, nicotine and carcinogens . In someThe first examination of the link between exposure to ETS and the development of stroke was conducted by Lee and colleagues using a hospital based case-control study . The stuThe most recent study on passive smoking and stroke was a population based case-control study conducted in New Zealand . The stuIn support of these findings, potential mechanisms whereby ETS may contribute to the pathogenesis of stroke have been identified. The Atherosclerosis Risk in Communities (ARIC) study investigators presented findings linking ETS to the development of carotid atherosclerosis . After cOverall, data from the few studies conducted on exposure to ETS and the development of stroke, together with data concerning ETS and atherosclerosis, provide some support for the notion that ETS can lead to the development of stroke. To clarify the role of ETS in the development of stroke, studies must be designed to determine whether altering the amount or duration of ETS changes the rate of stroke within a population. More evidence is needed on the role of ETS in the development of stroke. An examination of the effect of ETS by stroke subtype may better evaluate the relationship between this potentially modifiable risk factor and stroke.Smoking appears to be involved in the pathogenesis of stroke via two mechanisms. First, smoking can cause direct damage to the vasculature, altering both its architecture and function -54. SecoCerebral infarction occurs due to a disruption of the blood supply to the cerebral arteries. This can be a consequence of either occlusion of the cerebral vessels themselves or due to occlusion of the carotid arteries. There are a number of ways in which this occlusion can occur including artery occlusion by atherosclerosis and its associated plaques and thrombi or via emboli from a ruptured atherosclerotic plaque.Smoking is a major factor in the development of atherosclerosis. In the ARIC study current smokers were found to have the greatest progression of atherosclerosis over time, at a rate 50% greater than in non-smokers . FurtherSmoking is believed to induce the development of atherosclerosis by initiating endothelial injury, presumably due to either the production of oxygen radicals or via direct toxic effects of cigarette smoke constituents. Even brief exposure to cigarette smoke has been found to activate leukocytes, stimulating the release of the pro-coagulant, von Willebrand Factor (vWF) and causing endothelial damage . This inThe mechanisms by which endothelial dysfunction and a reduction in dilatory ability occur were further investigated by Fang and colleagues in the cerebral arteries of rats . They reStudies on arteries of human smokers have found similar results to Fang and colleagues. Poredôs and colleagues reported data on the intima-media thickness (IMT) of smokers compared with non-smokers, with IMT being used as a measure of atherosclerotic change . The invThe ramifications of the reduction in dilatory ability following smoking may place smoking individuals at a higher risk of cerebral ischaemic events in two ways. First, due to both a reduced ability to respond to alteration in perfusion pressure, and second, due to lack of distensibility of the arterial wall as a result of endothelial dysfunction. The notion that this lack of distensibility of the arterial wall may increase the risk of atherosclerotic plaque rupture, leading to emboli and subsequent infarction, was presented by Kool and colleagues . They foStudies conducted on the reactivity of the cerebral vessels of smokers are particularly pertinent to the role of smoking in the development of stroke. Terborg and colleagues investigated the reactivity of the cerebral circulation in smokers to hypercapnia using near-infrared spectroscopy and transcranial Doppler sonography . It was In addition to the atherosclerotic changes that cigarette smoking induces in the vessel wall, smoking also has detrimental effects on the coagulant/anticoagulant balance throughout the vascular system of smokers. This imbalance predisposes these individuals to thrombosis and therefore an increased risk of cerebral infarction. Hioki and colleagues investigated the effects of smoking on thrombin generation, which is important in the conversion of fibrinogen to fibrin in the coagulant cascade . It was Human studies show similar findings, with long-term smokers shown to have significantly increased levels of PAI-1 when compared to non-smokers . In addiThese investigations demonstrate that cigarette smoking induces both short-term and long-term alterations in haemodynamic variables, and can also alter arterial wall architecture resulting in atherosclerosis. In turn these alterations can result in occlusion of vessels due to stenosis within the carotid region and emboli from a ruptured atherosclerotic plaque, increasing the risk of a cerebral infarction. The reduction in the risk of cerebral infarction following smoking cessation may be due to the resolution of acute pathological changes caused by smoking such as alterations in haemodynamics, rather than a reversal of more chronic changes such as atherosclerosis. However, this is speculative as the effects of smoking cessation on these variables has not been investigated.The role of smoking in the pathogenesis of haemorrhagic stroke has been less investigated. This is surprising given the strong association found between smoking and SAH in particular ,19,26,281 antitrypsin. Smoking is known to inactivate α1 antitrypsin via peroxynitrates and •OH compounds found within cigarette smoke [1 antitrypsin activity may cause an imbalance between proteolytic enzymes and systemic inhibitory capacity; in turn there would be an increase in collagen turnover resulting in a weakening of the arterial wall [1 antitrypsin [SAH is known to be due to the rupture of an artery and in many cases the rupture of a saccular aneurysm . Importate smoke . Furtherte smoke . Tartaraial wall . This miitrypsin .The potential implications of these structural alterations in the arterial wall of smokers may also lead to an increased risk of haemorrhage due to the alteration in blood pressure caused by smoking. A sharp rise in blood pressure has been observed immediately after smoking and can last for up to three hours ,52. JuveThe data relating to acute changes due to smoking, such as blood pressure surges, teamed with data on chronic smoking related changes, such as arterial wall degradation, provide a hypothesis for the role of smoking in the development of haemorrhagic stroke. Furthermore, it is evident that the cessation of smoking may lower haemorrhagic stroke risk due to the elimination of acute effects such as blood pressure surges. However, the chronic effects of smoking such as arterial wall degradation may remain. This may explain why although the risk of haemorrhagic stroke declines with smoking cessation, it does not revert to that of an individual who has never smoked ,18,19,26Smoking is an established risk factor for both cerebral ischaemia and subarachnoid haemorrhage. However, its role in ICH is less clear. There is supporting evidence for a causal relationship between smoking and CI or SAH. This is supported by reports of a dose-response relationship between smoking levels and these two types of stroke, as well as a return to never smoking risk levels with increased time since quitting smoking. Furthermore, the biological plausibility of these findings provides further evidence for the role of smoking in these diseases.Establishing smoking as a significant risk factor for CI and SAH is important, as this is a modifiable risk factor. The evidence that among smokers who cease smoking the risk of both of these forms of stroke returns to never smoking levels over time indicates that people who cease smoking can benefit in an important way. Prevention still remains the most effective way of reducing the impact of stroke.The authors declare that they have no competing interests.


Childhood obesity is high on the policy agenda of wealthier nations, and many interventions have been developed to address it. This work describes an overview of schemes for obese and overweight children and young people in England, and the 'mapping' approach we used.Our search strategy, inclusion criteria and coding frame had to be suitable for describing a potentially large number of schemes within a short timeframe. Data were collected from key informants, scheme publicity and reports, and via a web-survey. To be included, schemes had to be based in England, follow a structured programme lasting at least two weeks, promote healthy weight, and be delivered exclusively to overweight and/or obese children and young people (age range 4-18). Data were entered into a coding frame recording similar information for each scheme, including any underpinning research evidence, evaluation or monitoring reports. Priority questions were identified in consultation with colleagues from the Department of Health and the Cross Government Obesity Unit.Fifty-one schemes were identified. Some operated in multiple areas, and by using estimates of the number of schemes provided by multi-site scheme leads, we found that between 314 and 375 local programmes were running at any time. Uncertainty is largely due to the largest scheme provider undergoing rapid expansion at the time of the mapping exercise and therefore able to provide only an estimate of the number of programmes running.Many schemes were similar in their approach, had been recently established and were following NICE guidelines on interventions to promote healthy weight. Rigorous evaluation was rare.Our methods enabled us to produce a rapid overview of service activity across a wide geographic area and a range of organisations and sectors. In order to develop the evidence base for childhood obesity interventions, rigorous evaluation of these schemes is required. This overview can serve as a starting point for evaluations of interventions to address obesity. More generally, a rapid and systematic approach of this type is transferable to other types of service activity in health and social care, and may be a tool to inform public health planning. In the UK, there is considerable policy and research interest in childhood obesity. Identified as a policy priority in 2004, NICE guObesity and overweight contribute to, and result from, health inequalities. The recent House of Commons Health Committee's report on Health Inequalities, while cAt a regional or national level, knowledge of existing service provision and its evidence base is essential for effective public health planning. Guidance commissioned by the Department of Health, on needAs is the case in other areas, including teenage pregnancy and HIV/AIDS, once childhood obesity was identified as a public health problem and targeted for intervention, a great deal of service activity was quickly initiated. Policy and funding drivers led to the growth of a large number of schemes addressing childhood obesity. Despite this rapid growth in interventions, comprehensive information on service activity across England had not been compiled nationally before our project was commissioned by the Department of Health. Given this, our mapping exercise, conducted in 2008, aimed to produce a broad overview of English schemes for overweight and obese children and young people.We appreciate that 'mapping' has a range of meanings. Here, we define a mapping exercise as a means of compiling and structuring information about services or interventions. The result serves the dual purpose of presenting an overview of information in a condensed format, and providing a basis for evaluation and comparison. The methods we describe allow information about interventions or services to be gathered rapidly, and presented in a way which is potentially useful to those planning services at a regional or national level.Our mapping approach draws on the scoping process often used to inform systematic reviews, and buiA search strategy, inclusion/exclusion criteria, and a coding frame were developed.We included schemes that were:a) based in England;b) lasting at least two weeks;c) structured (following a defined programme);d) delivered to overweight and/or obese children/young people;e) delivered to children/young people within the 4-18 age group;f) aimed at the attainment of a healthier weight.We excluded interventions designed to prevent overweight/obesity among children of a healthy weight. This reflects the trade-off within mapping and scoping exercises between In designing our search strategy, we sought to use methods which would facilitate the rapid identification of schemes for possible inclusion, and minimise bias.The coding frame was developed to list and structure information about each project. In order to manage details of an unknown number schemes, transparent measures were needed to enable the work, which had a tight timescale, to be 'contained,' if necessary, through prioritization. In consultation with policy colleagues, we gave priority to questions about the scheme's location, lead organisation, target group and evidence base.Our inclusion criteria and coding frame have parallels with other frameworks for describing intervention characteristics, such as ASTOR , originally developed to describe and map HIV health promotion activity, and PICTo ensure timely completion of the project, we set a date ten weeks after the start of data collection, beyond which no further schemes, or details about schemes, were entered into the database.Stages of data collection follow the pattern shown in Figure Identifying interventions for possible inclusion.1. Screening interventions on the basis of the inclusion criteria.2. Coding details about included interventions and displaying these in a structured format.3. We contacted the Obesity Leads for all ten English Regions, and used an online questionnaire to collect names and contact details for schemes, and project-related reports. We contacted relevant JISCmail lists including practitioners and researchers, the Association for the Study of Obesity email list, and requested information via the Evidence Network newsletter. A web-search using mainstream and academic search engines was undertaken intending to identify schemes via their publicity, grey literature, and evaluation and research literature, and we also included schemes referred to in the Foresight report ( p69-70).A simple internet search using the terms 'overweight' and 'obesity' was not practical, due to the huge volume of websites offering diet and weight loss advice to adults. Adding 'children' as a search term did not help given the targeting of women who have had children by the advertisers of weight loss schemes. As the volume of hits was unmanageable, we abandoned the web-search, though we acknowledge its potential usefulness in other areas of service provision.a priori, but where information was provided that addressed other questions, this too was included. We treated multi-site schemes with a common programme as a single entry in the database. The database constructed[To store details of studies, we used EPPI-Reviewer, a web application that enables researchers to manage the lifecycle of a systematic review, includinstructed enables We carried out a largely descriptive analysis, focusing on priority questions jointly identified with policy and research commissioners from the Department of Health.Ethical approval for the study was obtained from the Institute of Education, University of London, where the authors were employed at the time of the study.We identified 141 schemes for potential inclusion. Table Of these 141 schemes, 51 met our inclusion criteria, 71 were excluded, we were unable to obtain sufficient and timely information to make an informed decision on whether to include or exclude a further 15, and no contact details were found for 4 schemes. We excluded these 19 schemes (the latter two groups) from the database. Details of the included schemes are provided in additional file Some of the 51 included schemes operated at multiple sites. Through contacting providers of multi-site schemes we were able to estimate that 314 to 375 local programmes were ongoing in England. The majority of this variation is attributable to the fact that no exact figures were available from the largest scheme provider, as it was in the process of expanding in 2008, with many new local programmes being established.Due to the predominance of this scheme provider, and the uncertainty noted, the remainder of the results use the number of scheme or intervention 'models' as a denominator (51). A typical scheme lasts the duration of a school-term, and includes components in line with guidance specifyiWe obtained evaluation or monitoring reports for half of the schemes. This low response is attributable in part to providers considering data to be commercially sensitive; to data protection issues, particularly where there had been small numbers of participants; and to an understandable desire of those who had carried out evaluations to publish their findings themselves before making them widely available. Where a scheme's objectives were stated in reports or publicity, we recorded these, but more than half  did not make their objectives clear . Half of the schemes provided us with information on the outcomes measured, and this was most commonly a change in BMI percentile. It was often difficult to ascertain what evidence or information had been used in programme design, and very few had been comprehensively evaluated, which may reflect, in part, the newness of many of the schemes.Providing a census of ongoing activity in a rapidly changing field is a challenge. Results are unlikely to be exhaustive or completely up-to-date due to trade-offs between coverage, the amount of detail that can be obtained, and for information to become dated as schemes begin, end and change. However, a mapping exercise of this kind provides a 'snapshot' of the range of service activity, as well as the types of services and the populations they are aimed at, and these findings can be used as a resource for public health planners, service providers and the public. Our database of schemes can be uWe were encouraged by the enthusiastic response of many of the people with whom we had contact. However, any search strategy may introduce bias. Despite an increase in inter-sectoral working, the use of key informants predominantly from the health sector may mean that schemes implemented by teachers, youth workers or leisure centre staff were less likely to be brought to our attention. Yet schemes which do not require referral from a health professional may be more likely to be widely publicised. A bias towards well-known schemes may have been off-set by the willingness of our respondents to post our email survey link onto various 'closed' lists of practitioners. We also acknowledge a potential bias towards evaluated schemes, which tend to be better known in the field and/or have a presence in the academic literature.Despite this possible bias, we identified evaluation as an area of concern for the majority of intervention models. What is described as 'evaluation' in many scheme reports might better be described as monitoring and the presentation of process data. Evaluations of effectiveness were often weak or, more usually, absent. Changes to interventions included activities, duration, and target group (age range and/or degree of overweight). These changes were made in response to local needs, funding pressures, and concerns about drop-out - concerns which are understandable, but which can make evaluation problematic. As we have noted, inadequate evaluation of health and social interventions can hamper attempts to address health issues and health inequalities. Problems with drop-out were mentioned to us several times, and it would have been extremely challenging to collate a measure of the overall numbers and demographics of scheme participants, as this would be reliant on the level of attendance considered 'adequate' among schemes which varied in duration and intensity. Further, related limitations include that we were unable to measure overall capacity of these schemes, and participation among ethnic and socioeconomic groups experiencing higher rates of childhood obesity, and by gender. These are important demographic categories which process and outcome evaluations should address.Notwithstanding these limitations, our database serves to provide a starting point from which to track the extent to which the evidence base is being used in the design and implementation of interventions. Development of the evidence base is more likely to be achieved if funding is linked to a common evaluation framework such as the recently published Standard Evaluation Framework for weight management interventions.The mapping approach we used is a relatively efficient and effective way of collating information about service activity across a wide range of providers and sectors. Such an approach may be useful in other areas of health or social care, particularly where diverse providers exists and where reliable information needs to be collected rapidly.There appeared to be great duplication of effort in the design and establishment of similar intervention models, and in many cases a need for more rigorous evaluation.BMI: Body Mass Index; HIV: Human Immunodeficiency Virus; NICE: National Institute for Health and Clinical Excellence; PCT: Primary Care Trust.The authors declare that they have no competing interests.CA carried out the majority of the fieldwork and led the first draft of this paper; LA designed the study, drawing on work she had done on sexual health at the Child Health Research and Policy Unit, City University, London. HR took responsibility for the final report. All authors contributed to the writing of this paper. All authors read and approved the final manuscript.At the time the research was carried out, all authors were at the Institute of Education's Social Science Research Unit/EPPI-Centre. At the time of submission CA is at University College London (UCL), LA at Teesside University and HR at UCL Institute of Child Health.The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1471-2458/10/310/prepubTable S1 - Coding Framework: data extraction guidelines for the mapping exercise. This file contains the framework used to create a standardised description each scheme which met the inclusion criteria for the mapping exercise.Click here for fileTable S2 - Mapping exercise - selected scheme details. This file displays a selection of the data collected on each of the 51 schemes included in the mapping exercise.Click here for file


General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website .The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166).Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences .Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach. Several recent reports tabled by government as well as non-governmental health agencies foreground a significant disparity between the information needs of health professionals, patients and caregivers givers and the availability of such information. In response, the reports urge governments to invest in the information, education, and training resources available to health-care professionals, patients and caregivers, as well as the wider community, in order to foster awareness and capacity regarding palliative care -10.Whereas the increasing demand for consumer health information on the Internet has been also the topic of much recent medical, social science and information science literature -22, therThe aim of the government-funded study was to improve the existing website of Palliative Care Victoria (PCV), a state-level palliative care organisation. In light of the large volume of inquiries from community doctors, nurses and members of the general public, the Director of PCV was of the view that the organisation's response to such enquiries could be improved by enhancing the information for the general public, along with evidence-based pain, symptom and psycho-social information for health professionals, in particular general practitioners and community nurses available through its website. The study also took into account more global policy issues. For instance, it took into account the key recommendations outlined by the Improving Supportive and Palliative Care for Adults with Cancer report tabled by the United Kingdom-based National Institute for Clinical Excellence in 2004. Among other the report underscored the value of high quality information for patients and caregivers, the importance of ensuring that the views of patients and caregivers are taken into account in developing and evaluating cancer and palliative care services, and that patients and caregivers have easy access to a range of easy to read, high quality information materials about cancer and palliative care services that are provided free of charge . Yet, thAs the project was designed to be responsive to feedback from potential user groups an action research approach was undertaken. The actual research design and reporting structure was negotiated with the funding agency at the outset. The action research process enabled the project staff to design an iterative process of continuous improvement through trial, analysis, and feedback from key stakeholders in order to adapt and modify the project to meet emergent needs -30. In tTheoretical contributions to the field of educational multi-media design indicate that issues regarding content, language, and 'look and feel' could potentially be resolved through an ongoing consultation with expert user groups -33. In fUser feedback was collected in the form of focus group discussions, summary grids, written comments, and 'think aloud protocols', a method where users navigate the prototype site delivering verbal comments throughout the process . An audiThe project was constructed in four main stages that were implemented between March 2003 and May 2005. The pre-development stage involved identification of the needs of the target audiences through the literature review, a pre-development online survey, and a gap analysis undertaken by the User Working Groups (UWGs) made up of consumers and health professionals under the oversight of the Project Reference Group (PRG) of key stakeholders. After a lengthy consultation and development process, a test website (beta site) was developed by the Melbourne-based Centre for Online Media and Educational Technology (COMET) for eventual transfer to the Palliative Care Victoria website. The beta (test) site development was undertaken with input from external experts and the User Working Groups. The beta site was then assessed by key stakeholders as well as consumers. Finally, as last modifications were made to the site the sustainability plan was implemented in conjunction with PVC. The following Figure  as well as web-based searches  for additional material, such as reports commissioned by government as well as non-governmental agencies. Due to the limited scope of the literature on palliative care, sources dealing with online cancer information were included in this literature review. Permutations of search terms  were used to collect a total of 388 bibliographical entries in an EndNote file. A researcher scanned the abstracts of these articles for relevance, thus eliminating 314 articles. The remaining 74 articles were sourced for inclusion into the literature review. In addition a separate literature review was conducted focusing on the available clinical evidence in subcategories of palliative care such as pain, medication, and psychosocial needs. For the clinical subject areas systematic reviews submitted to the Cochrane database, clinical guidelines, as well as expert consensus panels were included. The research underpinning the clinical information included on the website was evaluated and ranked by clinical palliative care experts. Due to the dearth of research-based evidence in sub-categories such as psycho-social needs, the PRG decided to include also what is considered 'best practice' in those fields.A short online survey was designed to provide a cursory overview of users and their palliative care information needs. The 10 question survey was posted on the existing PCV website. Participants were asked:• why they accessed the website• whether they were health professionals or patients/caregivers/members of the public,• what kind of information they were looking for,• whether they found the desired information,• to indicate areas that should be considered for inclusion in the website,• whether it was easy to locate the information on the existing site, and• to comment information gaps in the current site.Internet users who accessed the site were asked to complete the form online. The survey was posted on the internet for a total of five and a half months beginning from 8 October 2003. Response to the survey was anonymous. The webmaster collected the responses and coded and pre-compiled the data. Subsequently, the responses were screened, duplicates or void forms were eliminated, and the pre-compiled data was analysed.Furthermore, an extensive search of existing health websites was undertaken to identify the key features of reputable or 'Health on the Net' (HON) accredited websites. The Economic and Social Council of the United Nations accredited HON Foundation is the leading organization promoting and guiding the deployment of useful and reliable online medical and health information, and its appropriate and efficient use.Taking into account the preliminary findings from the literature review, the web search, and the results of the pre-development survey, both UWGs drafted a detailed gap analysis framework addressing the information needs of the stakeholders they represented. Moreover, the Project Reference Group as well as key stakeholders and the experts from the Centre for Online Multimedia and Educational Technologies (COMET) at La Trobe University, evaluated the original website of Palliative Care Victoria for content, relevance, accessibility, links, search potential, design features and language level. The original website catered predominantly for palliative care 'insiders'  and posted a series of pamphlets and press releases that could be handed on to patients. The literature reviews in conjunction with the website search as well as guidelines provided an overall framework for content and design, whereas the online survey gave an initial indication of the kind of subject areas health professionals, patients, and caregivers might expect the future site to cover. In this sense, the 'gap analysis' provided very rough guidelines for the construction of a beta site. However, it is important to remember that, because of the formative, iterative process that underpinned the design of the website, needs and gap analyses were ongoing as stakeholder representatives co-designed and debated the content of the site through the numerous iteration cycles.Project Reference Group (PRG) brought together nine professionals active in a range of palliative care-related fields and who held senior positions in councils, associations, and academia. Moreover, the PRG included a Project Officer who had extensive knowledge of the palliative care field. The Project Officer moderated most group discussions. The sizeable networks of these individuals were instrumental during the implementation phase of the project as many of the User Working Group members were recruited through these networks. Moreover, these participants brought to the project expertise in clinical palliative care, project management, team leadership, online educational technology, and research/evaluation techniques that could be drawn upon over the course of the project. Several members of the PRG joined an editorial panel that took responsibility for drafting editorial guidelines and monitoring content. The PRG functioned as the central mediation vehicle and most editorial decisions were discussed within this forum.An effective Project Reference Group was formed. The User Working Groups (UWG) were formed to participate in the sourcing and evaluation of content. One UWG drew on the expertise of focus group participants brought together by the Cancer Information & Support Services (CISS) run by The Cancer Council Victoria, as part of their activities directed at identifying unmet needs for people affected by cancer. The working group included 11 cancer patients, caregivers and volunteers. The other UWG was made up of 12 health professionals and included four general practitioners, two palliative care physicians, and six palliative care nurses representing nine organisations. Again the networks associated with these members were very extensive and greatly facilitated the user-based evaluation of the process. It was envisaged that these groups would meet on a monthly basis. UWG participants as well as members of their professional networks were asked to provide feedback in the form of summary grids  of the website. Because representatives of all major stakeholders were involved in the reference and working groups, it is reasonable to suggest that these stake holder groups had a direct input into the design of the web site. Moreover, bearing in mind that 197 and 166 participants respectively responded to the pre-development and evaluation online surveys, it is likely that over 300 individuals contributed to the design and evaluation of the PCV website.An evaluation survey was attached to the new website. Not withstanding minor changes, the evaluation survey mirrored the content of the pre-development survey. Based on the experience with the pre-development survey, it was decided to separate the information for the public and health professionals. The pre-development survey did not make this separation. Moreover, the evaluation survey was more structured providing a list of possible responses that participants could tick in addition to an 'other' category followed by an open-ended prompt to specify this response.The literature review revealed a growing recognition of the existence of unmet information needs regarding palliative care practice ,9,35-44.In particular, researchers ,64,66-72• Lack of editorial control,• misleading or incomplete content,• inappropriate design,• inappropriate cultural bias,• inappropriate commercial content,• lack of readability ,• inappropriate navigation tools,• overall disorganisation of the site,• accessibility of audio and visual resources, and• problems regarding volume management and maintenance.In response to these quality concerns, authors propose the use of tools to evaluate the quality of health information web sites ,74, and/Other commentators have recommended the design of designated portal sites or gateway servers that organise and edit web content . To someIn summary, the literature suggests a need for a more comprehensive information and education strategy focusing on palliative care. It makes it clear that an understanding of the audiences to be targeted as well as their online information needs is crucial for the development of reliable and effective health information websites . MoreoveThe survey attached to the existing website generated a total of 197 responses  and professional practice (13%), to find available resources (66.21%), and to find information that would assist them in their care-giving role (15%). Of the respondents 128 (64.97%) indicated that they had found the information they were looking for and 68 (34.52%) stated that they did not. Respondents to the existing website thought that in-depth information about topics such as pain, grief, volunteering and ethical issues should be included. Also noted was the absence of links for volunteers, a site map, a list of recommended publications, a listing of employment opportunities and short courses, comprehensive information for professionals, course information on professional practice, and contact details.When asked if it was easy to find the information that they were seeking, 130 (65.99%) of the respondents to the existing site gave an affirmative response, whereas 57 (28.93%) responded negatively. Sixty two (31.47%) participants specified their answer. Of these, 26 (13.20%) gave positive feedback, whereas 20 (10.15%) provided constructive criticism. The issues raised by these respondents were:• the need for better navigation tools,• the site's limited content,• the ineffectiveness of the site's search engine, and• the fact that the site had not been updated.The expert panel discovered limitations in the organisation, content, language, accessibility, design, navigability, and readability of the existing PCV website. To some degree this finding was expected, given the limited resources available for the ongoing support and development of a site mainly administered by volunteers. Among the most important shortcomings noted by the panel was the very limited scope of the website, the lack of effective search capacity, the complexity of the language used and accessibility issues for people with reading difficulties. It was felt that the website was largely providing information to 'insiders' in the palliative care community but not to general health professionals nor to a substantial segment of caregivers, patients, and the general public.The two working parties considered material from the gap analysis, the website search, as well as a preliminary analysis of emerging survey responses. Also the working party members' opinions of unmet needs as identified from their own experience or from interaction with their peer networks. Discussion ensued about how much information should be available for a quick scan approach, how much should be printable information sheets or pamphlets, and what links should be included to provide greater depth of knowledge. Each working party developed a framework for the health professional or the consumer web portal respectively. An overview of these frameworks is provided in Tables Moreover, working parties in conjunction with the PRG defined the overall scope of the new website delimiting the topics that would be covered by the site. Excluded from the site were topic such as careers and financial entitlements.Because this phase has been published in detail elsewhere only a short summary of its key elements of this phase is given. The formative user evaluation underpinning the project worked exceptionally well. Perhaps the most surprising element of this phase was the level of support that participants were willing to invest in the project. Whereas the UWGs provided crucial information during the initial stages of the project, the editorial panel in conjunction with key user groups associated with the representatives participating in the UWGs provided valuable input during the evaluation of the beta test site. As anticipated, feedback occurred continuously throughout the project and was circulated through the PRG and UWGs. As a result, the PRG and UWGs were able to respond quickly to user feedback and shape the content and overall design of the website accordingly. Expert evaluators became important mediators of conflicts. Referring to 'good practice' guidelines and by providing their 'expert opinion', they, supported by the PRG, managed to resolve diverging views as well as conflicts of interests that surfaced within UWGs.The online survey posted on the new website resulted in a total of 166 responses , about palliative care services in Victoria (40%), as well as information in order to help others with an illness (33%), help the person they cared for (31%), and help them cope (27%). Health professionals responding to the new website (B) sought information about education (50%), symptom management (37%), advance care planning (31%), loss and grief (25%), talking with clients and families (23%), Palliative Care Victoria (22%), death (21%), services available to their clients (21%), and a resource website for clients (17%).Of the respondents, 137 (82%) indicated that they had found all or some of the desired information and 18 (11%) stated that they did not. Respondents of the evaluation survey thought that topics such as further education, conferences, scholarships, as well as lists of places to go to as a family, signs of dying/clinical information, volunteering and financial entitlements should be considered.A total of 122 (74%) respondents claimed that it was easy to access the desired information, whereas 38 (23%) claimed that it was not.Comments focusing on the new website were positive regarding content and design.Involving users in the identification of content and links for a palliative care website as well as the evaluation of the site's 'look and feel' is time-consuming and requires initial resources, strong networking skills, and ongoing commitment. However, the benefits of engaging key stakeholders in defining and refining the scope and content of such a website outweigh the disadvantages. Over the course of this study, user involvement led to the widening of the scope of the website and alerted the project group to shortcomings regarding content, language, presentation, and usability.The original intention of the expert re-developed website was to provide information to the consumers and for health professionals in the community who did not have continual access to palliative care expertise. User involvement significantly augmented these aims. In addition to the original intention, the stakeholder-conducted gap analysis in conjunction with the user online survey identified the need for a site that• provided reputable expert or evidence-based information,• addressed information requirements in areas such as professional practice, ethical dilemmas or practice standards, as well as topics related to managing palliative pain, grief, advanced care planning, or home care,• provided clinical content in accessible lay language for the general public,• guided consumers through the health care system• provided tools to enhance medical and consumer decision making,• supplied printable pamphlets for patients and caregivers,• regularly monitored and updated links and material,• provided key points that can be easily visually scanned, and• does not contain distracting graphics that increase download time.These points would have been missed if the project had proceeded with a common, expert-based web-design.To some extent, the success effect of the iterative, participatory design of the website is visible in the evaluation survey posted to the new website. For instance, a comparison of the pre-development survey with the evaluation survey shows a decrease of visitors that did not find the information they were looking for from 35% to 11%. Concurrently, the percentage of participants who thought it easy to find the desired information increased from 66 to 74.Interestingly, since going live, the new website has become an education resource for nursing staff, students, as well as allied health workers. In fact, 46% of the evaluation survey respondents were nurses. Moreover, the evaluation survey suggests that an, albeit small, but nevertheless important number of care givers and patients is accessing the site. Seventeen percent of evaluation survey respondents were care givers or patients. The overall feedback by health professionals as well as patients and caregivers to the new website was, in contrast to the pre-development survey, exclusively positive. What is more, all of the additional topics that health professional thought might be considered for inclusion were outside the scope of the website as defined by UWGs and the PRG.Yet, the evaluation survey also demonstrates that the portal for patients, families, and their caregivers might require some finetuning. The evaluation survey suggests that whereas the information needs of health professionals are covered by the new site, this is not entirely the case for patients as well as their families and care givers. Given that the information needs of patients and care givers are likely to be more diverse than those of health professionals, this was expected, however. What is more, only two (1%) of respondents to the evaluation survey were General Practitioners (GPs). The reason for this low share in the overall population of respondents has not been analysed. It has to be born in mind that the evaluation survey reflects only on the first eleven months in the life span of the new website. Future surveys will show whether the site will become a central reference for care givers, patients, and GPs.What is more, the re-development of the website accompanied by the positive feedback the organisation received has led to significant changes in the way PCA manages information. Whereas the old website functioned mainly as a provider of pamphlets and leaflets on palliative care, the new website has assumed a much more central role in the overall operation of the organisation providing education and information. Moreover, PCA plans to web-cast public relations items on the site. Moreover, encouraged by the re-development of the site, the PCV has applied for additional funding in order to integrate web-based information more fully into its communication strategy. Having become aware of the potential of its online strategy, web-support has assumed a more important role in the organisation. This in conjunction with the additional funding PCV was able to attract has impacted positively on the sustainability of the website.Several limitations were recorded. Perhaps the most important, and obvious, limitation is the usefulness of the pre-development survey in scoping possible web content for a future potential audience that is not yet accessing the site. Whereas the pre-development survey indicated that more non-health professionals accessed the site than was expected, the pre-development survey gave only limited indication as to the information needs of patients and their care givers. In fact, the development process relied to large extent on the input of the UWG as well as the iterative evaluations to define the portal for non health professionals.Another limitation that emerged more clearly in connection with subsequent projects is the use of volunteer participants. It is important to bear in mind that not all projects are suited to a development phase based largely on volunteer participation of busy health professionals. Although the overall cost of the project  was comparatively low, the study was fairly resource intense. In particular, the study relied on a large number of participants who, over the course of three years, generously donated their time and energy. Clearly, for participants to make such a sustained contribution, they need to be extremely committed. Hence, it is important that web developers bear in mind that the salience of the project outcome is likely to influence the commitment levels and, by extension, the support of participants. Furthermore, because of the need to mobilise all major stakeholders and to involve consumer representatives, this kind of approach requires strong networking skills and only individuals with good links to key user groups will be likely to gain the support of key user representatives.Also, because of the large number of individuals involved in the project and because of the iterative evaluation cycles, an enormous amount of information will be generated. The administration and processing of this information requires well-honed project management skills. In part this had to do with the ineffectiveness of one of the research tools: the summary grid. The summary grid asked for an assessment of the content of each of the web pages associated with these questions using the following criteria: clarity of information, accuracy of information, usefulness of links, target audience for the page, and layout and further suggestions. This feedback method was time-consuming and only members of the consumer panel and a few members of the health professional panel provided feedback in this manner. However the written feedback was most thorough and provided excellent guidance to adjust language and content, to provide further information, and/or to include further links. However, the majority of participants provided feed-back in an ad-hoc, unstructured manner that did not correspond with the data-collection time points we had set. This generated an extraordinary amount of information that, at times, threatened to overwhelm our project officer. This prompted us to strengthen the methodology of subsequent web design projects involving user participation.For reasons beyond our control, we were unable to generate a denominator for the responses to the initial and subsequent surveys, as well as for the subsequent utilisation of the website. As a result we are unable to complete the rhetorical loop demonstrating an improved usage of the website. This clearly limits the explanatory power of the study.A growing body of literature and government reports highlight the existence of a significant information gap with regard to palliative care. As more and more people use the internet to meet their health information needs, the question of what kind of palliative care information internet users are actually looking for becomes central to any online information strategy. However, research that focuses on the palliative care information needs of internet users is scarce. This study illustrates how a user-based methodology involving key stakeholders and potential users can contribute successfully to the development of content, language, and design of the website as well as to its evaluation. Web developers are encouraged to involve potential users in their website development and pay close attention to the content, language, and accessibility needs of their respective audiences.The author(s) declare that they have no competing interests.AS and KS conceptualised and designed the project. AS, KS, MA, RW, TG, and AO were involved in the data collection effort and provided critical input through the project. AS and GO conducted the final data analyses and data interpretation and drafted the manuscript. MA, RW, TG, and AO revised the manuscript and contributed to its intellectual content. All authors read and approved the final manuscript.The pre-publication history for this paper can be accessed here:Summary GridClick here for file