10 How do we increase awareness of osteoporosis?

10 How do we increase awareness of osteoporosis?

L i n d a E d w a r d s BA(Hons), Dip CAMMIPR

Director The Nabonal Osteoporosis Soctety, PO Box 10, Radstock, Bath, BA3 3YB, UK

Mary Fraser BSc(Hons)Pharm, Graduate Diploma in Marketing

Director European Foundation for Osteoporosls, Pavilion F, HSpltal E. Hemot, F-69437 Lyon Cedex 03, France

In the UK and throughout Europe 10 years ago, osteoporosis was not a word that existed in the vocabulary of the general public. The majority of doctors had dismissed osteoporosis as a normal process of ageing, affecting only the very elderly and about which nothing could be done. Why should it matter that awareness of osteoporosis was so low among the general public and the medical professions?

For the newly launched National Osteoporosis Society in the UK, several ques- tions needed to be answered: if osteoporos~s was not an inevitable part of grow- ing old, was it really a disease and how could action be implemented to treat it and prevent it? If fracture numbers and their costs were so much h~gher than had been thought, who should be reformed of this? And if there were ways of treating and preventing osteoporosis, who should be made more aware, what should they be told, and how could such awareness-raising be done and paid for? Before real action could be undertaken, a considerable awareness programme would be needed to radically alter traditional behefs about bone health.

Key words: osteoporosls, awareness.

The problem: low awareness

When the UK Nauonal Osteoporos]s Society (NOS) was launched in June 1986, the first osteoporosls patient society m Europe, It was generally accepted that it was normal to lose height w~th age, that the back would start to curve, that women would become more fragile after 60, and that elderly women would regularly break their hips. The road warning sign outside every elderly people's home in the country has for many years shown a man and a woman with osteoporosls as If this were just a normal process of ageing (Figure 1).

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631

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632 L. Edwards and M Fraser

Figure 1. The road warning sign outside every elderly people's home in the UK shows a man and a woman crossing the road, they both have osteoporosls This shows that the Department of Transport was well aware of the disease long before the Department of Health saw It as a serious probleml

Any woman complaining of persistent backache, severe loss of height, kyphosis, or fractures after a minor fall would be told it was 'just her age': it was hardly surprising that early NOS surveys found that the public's knowledge of osteoporosls was virtually nil.

A survey by a pharmaceutical company among general practitioners at that time found that 20% of family doctors in the UK claimed they had 'never seen a case of osteoporosis among their patients'. By contrast, the few serious specialists m osteoporosis were citing statistics that told a very different story; their research showed that osteoporosis was a major problem, affecting huge numbers of men and women m the UK and seriously damaging their quality of life. Doctors working in osteoporosis were concerned at the lack of awareness among their colleagues that severe spinal deformity, the attendant excruciating pain from vertebral fractures, and the simultaneous loss of mobility and independence were caused by osteoporosls. Doctors and patients were becoming increasingly frustrated that osteoporosls was being dismissed as a 'httle old ladies' disease with severe suffering and death thought to be a rarity (Figure 2).

Mission of the NOS

The NOS dedicates itself to the m~ssion of ensuring that all those who already have osteoporosis receive the most appropriate treatment and advice in order to prevent further pain and fractures, and all those at risk of osteoporosls receive appropriate advice and, if necessary, treatment in order to avoid the disease. However, it was abundantly clear early on that nothing would be done to help osteoporosis sufferers, and to increase

How do we increase awareness of osteoporosis? 633

Figure 2. Gwen Fitzpatrick, who dted of osteoporosts m December 1995 She had lost 16 inches in height and suffered innumerable fractures over 40 years after an early hysterectomy She was never offered any treatment for her osteoporosls.

diagnosis and prevention, if there was not a greater appreciation among doctors, the general pubhc, and Government of the seriousness of the disease.

Identifying issues and known facts

The first task facing the NOS was to establish what was known about the disease, what messages the Society needed to disseminate, what audiences it needed to reach, and the mare aims the organization was setting out to achieve. Any public awareness campaign needs to have very clear objectives, particularly when medical ~ssues are at stake.

Medical guidance

One of the strengths of the NOS is that it was founded by a group of doctors who formed the initial Council of Management and Trustees. These doctors first registered the Society with the Charity Commission, and were some of the leading specialists in osteoporosis both in the UK and internationally. They represented the variety of disciphnes affected by osteoporosis.

One of the problems of osteoporosis has been that it is the concern of many different dlsciphnes m medicine, from general practitioners to orthopaedic surgeons, rheumatologists to gynaecologists, paediatr~cmns to geriatricians, but it is nobody's parucular respons~bdlty. Osteoporosis had

634 L Edwards and M. Fraser

never therefore achieved the importance it deserves among the medical profession. The NOS faced a huge task to re-educate all the disciplines involved as to the seriousness of osteoporosis and its rapid increase in recent years.

Consensus conference to identify key messages

An early priority was to gather into the Society as many as possible of the leading professionals in osteoporosis working in the UK. To avoid any friction, it was vital that all disciplines should be represented, and invltanons were issued to leaders from all fields of medicine and those researching in osteoporosis, to join a board of advisors. Fortunately, many doctors are willing to devote some of their spare time to worthy causes and a Consensus Conference on osteoporosis was rapidly put together in order to establish the current agreed knowledge on the disease and the most up to date 'best advice' available.

Successive conferences and meetings have enabled regular updating in the field of osteoporosis, in the light of new advances over the past 10 years.

The view that has been taken is an hohstic approach concerned with identifying and highlighting high-risk individuals and osteoporosis sufferers early and offering advice and treatment to prevent further fractures wherever possible. Advice is offered on diet and exercise, stressing the importance of hfestyle changes which patients can make themselves. Lifestyle changes include stopping smoking and avoiding excessive alcohol consumption, while highlighting available medical support, from prescribed treatments to physiotherapy and pain relief.

Awareness of hormone replacement therapy (HRT) has always been encouraged as the treatment of choice to prevent osteoporosis and to prevent further fractures m those already suffering from the disease. Advising oft calcium supplements where appropriate (though not omitting dietary advice) and, m more recent years, highlighting other treatments available including the bisphosphonates, calcium, vitamin D, and others are an ongoing part of the Society's information services.

Once the Society was clear on its agreed 'current best advice', the next most important task was to decide who were the most vital groups to be targeted and what specific message would achieve the best results with each of these groups.

Groups to target

With a disease which affects such huge numbers of the population, across so many age groups, it ~s tempting to presume that 'everyone' needs mformanon. However, on analysis there were five key areas m which the Chanty clearly had to work, and these dictated the target audiences for

How do we mcrease awareness of osteoporosis? 635

whom improved communication would be essential. The Charity's role c o v e r s :

• Sufferer support.

• Raising public awareness.

• Informing and educating health professionals.

• Lobbying of opinion formers; especially Government, the Depart- ment of Health, and health authorities.

• Fundraising.

To achieve success in the public awareness campaign for osteoporosis it has been, and continues to be, vitally important that all these five key areas are seen as interdependent. Without a relatively equal amount of attention to each, the whole campaign will ultimately fail and cannot thrive. Sufferer support alone is no use without the ability of patients to obtain good prescribed treatments from their doctor. Good doctors cannot flourish without the pohucal will of the Department of Health and the Government to improve the status of osteoporosis. And without healthy independent funding, nothing can be achieved.

Sufferer support

Raising awareness among patients, both established sufferers and those at risk of osteoporosis, has always been a core element of the Charity's work. Initially, simple leaflets were produced but the advice needed constant expanding so that a range of detailed booklets has been developed covering the main areas in which queries are received (Figure 3).

Most of the leaflets are produced as a result of popular demand and

Osteoporosis---General information How to Cope--sufferer advice Corticosteroids and Bone HRT and the Menopause Diet and Bone Health Straighten Up with Fashion---clothes to mmimtze curved spines Hysterectomy and HRT Exercise and Physiotherapy Treatments---other than HRT Osteoporosis in Men Osteoporosis of Pregnancy Breast Cancer and HRT Managing Pain Healthy Bones Pack---children's educabon

Figure 3. National Osteoporosts Soctety pattent literature

636 L Edwards and M Fraser

all are frequently updated after thorough review by the Society's medical advisers, as it is vital they are accurate and include appropriate references. The NOS has also produced a 20-minute video on osteoporosls treatment and prevenuon, and members receive a newsletter four times a year.

Sufferers of osteoporosis are encouraged to join the NOS and benefit from the regular support this offers. Those living alone find membership particularly helpful and suppomve. The NOS now has over 20 000 members and it is sigmficant that over 90% are receiving, and comply well with, treatments for osteoporosis; over 90% of the general public with osteoporosis receive no prescribed treatment, other than painkillers.

In regular surveys, NOS members express satisfacuon with the high level of enthusiastic and caring support they receive which encourages them not to take no for an answer and to insist on doctors offering them investigations and treatment.

Part of this support is a helpline run by four osteoporosis nurses, a medical mformauon service by letter, access to doctors at meetings, and a lively and active group network w~th over 85 local support groups.

Public awareness

Sufferer support services also provide the backbone for the main public awareness campaign, which is carefully managed to give clear messages about osteoporosis, and to establish and maintain a high profile for the disease.

The message that osteoporosls is serious but that it is both treatable and preventable has been delivered throughout the UK, consistently, for the past 10 years through a variety of media. Television, radio and newspapers, both national and local, and specialist and women's magazines are targeted constantly. The coverage obtained is exceptional and unrivalled by any other national health issue. This successful campaign is achieved through skdled inhouse public relations professionals, achieving on a mimmal budget results obtained by organizations employing agencies costing hundreds of thousands of pounds per annum.

In addition, the inhouse team produces exhibition materials, posters, leaflets for surgeries, and campaigning literature. Work with women's groups throughout the UK is supported by a speaker network provided with slide sets and speakers' notes. A successful campaign was organized with the Women's Institute (WI), reaching 9500 of their local groups. The WI took up osteoporosls as their 'cause for the year' after an AGM address from the NOS Director. Work with schools takes the 'healthy bones' message to children and teenagers encouraging them to adopt healthy eating and exercise habits (Figure 4).

By 1993, patient awareness had risen from nil in 1986 to around 86% of a sample survey. Although there had been a dramatic increase in awareness of osteoporosis, there had not been e~ther a corresponding increase in acuon on the part of patients in demanding help, or by the GP or hospital

How do we increase awareness o f osteoporos is 9 637

Figure 4. Claire and Jemima, who helped to launch the National Osteoporosls Society (NOS) 'Healthy Bones in Chddren' mtttattve, obviously taking to heart the message to exercise your bones dady out in the sunshine Ten thousand UK schools are now working wtth this pack The NOS youth education officer also generates local press interest m her visits

consultant m offering advice and treatments either to prevent the condiuon or to manage it successfully.

The NOS has initiated several research studies and has obtained data f rom others (references 1-7) which demonstrate particular areas of concern. Patients consider that their doctors do not offer sufficient reformation about osteoporosis, the menopause, and HRT, and cite their main sources of reformation as newspapers, magazines and the NOS. Patients would prefer to obtain advice from their GP but are reluctant to bother them, especially if doctors are dismlssive about their symptoms; some have described themselves as being 'afraid' to ask for further information or to demand investigations.

In response to the information from these surveys, the NOS decided to concentrate public awareness efforts towards specific local awareness campaigns in one area at a time. So far, successful regional campaigns have been mounted in three regions. The most recent campaigns, in the Oxford and East Anglia Health Regions, have resulted not only in a significant increase m numbers of patients contacting the Society but also in an increase in visits to GPs and increased prescribing levels. The campaigns focus on public meetings, each supported by 200-400 women (and men), and massive local media coverage.

Professional education

Hospital doctor, GP and practice nurse awareness campaigns are not only focused on information via the medical press. Regular training courses are held at the NOS' headquarters near Bath, and these are now being extended

638 L. Edwards and M. Fraser

nationwide through a network of specialist osteoporosis nurses. The NOS has produced nurse guidelines in conjunction with the Royal College of Nursing (RCN) with which it regularly holds joint initiatives. Medical meetings organized by NOS include the major biennial Bath Osteoporosls Conference. These meetings are covered in the lay media, as well as the medical press, further highlighting public awareness of current osteoporosis news and research results.

Working with industry

While it is vital that the NOS xs seen by all to be independent of commercial interests, it is also important for the Charity to have excellent two-way communication with the pharmaceutical industry. This has been well established over the past 10 years, and good information concerning the Charity's plans and those of the companies has been shared to the benefit of patients to ensure, for example, that the NOS helphne knows of new drugs m advance of press publication. Commercial investment m the NOS has, traditionally, been low, with the Charity fiercely independent m its stance to the pharmaceutical industry, while inodentally helping to grow the companies' market for them. Many doctors working closely with the NOS feel the pharmaceutical industry should now be aiming to support the work of the Society in a more tangible way, particularly as the Charity is now raising significant sums for osteoporosis research and is being so effective in poliucal lobbying--a difficult area for some companies.

Political lobbying

A significant area in which it is essential to raise awareness of osteoporosls, but where results take longer and are more time-consuming, is in politics and Government. The NOS has, since 1986, worked closely with successive health ministers and their civil service advisers.

The main achievement was in encouraging Baroness Cumberlege, Junior Mimster of Health, to estabhsh the Advisory Group on Osteoporosis (AGO) which produced the AGO Report, published in January 1995 (officially dated November 1994). This document (Figure 5) provided, at last, the 'official backing' for all the statistics and calls for action the NOS and its medical advisers had been publicizing. However, this amounted only to an advisory document for health authorities which have been granted increasing autonomy in recent years.

The NOS needed to harness not only the Department of Health and medical support, but also some public pressure if real changes were to be achieved. The NOS therefore contacted every health authority in the UK with the clear aim of persuading them to set up an osteoporosis strategy, to provide a chnical hospital-based osteoporosis service, to identify one local lead clinician (or more) for osteoporosls, to provide basic funding so


Figure 5. The Advisory Group on Osteoporosls Report The commRtee was chaired by Professor David Badow and brought together most of the UK's leading thinkers, researchers, and chnlcians in osteoporosis, thanks to the Minister's enthusiasm for action on osteoporos~s The National Osteoporosis Society's lobbying convinced the Minister that the disease is an area full of hope in which action really can make a difference

osteoporosis could be included in local contracts, and to enable pauents to have access to appropriate invesugators and expert advice.

All health authorities were asked to complete a basic osteoporosis survey; 80% of the 120 health authonues m England and Wales responded. What was clear from the results was that more than 50% of health authorities were falling abysmally in even basic provision of services for osteoporosls. However, some of the health authorities were horrified and took immediate action.

The publicity which resulted from NOS activity with MPs, with local media, and with NOS members and sufferers, prompted more health authorities to accept that osteoporosis could no longer be ignored and should be provided for. As the regional campaigns have progressed, all the health authorities in those areas have been targeted and more than 50% have developed new strategies for osteoporosls or set up interest groups to review their osteoporosis provision. The results of political lobbying are often the most vital steps forward in an awareness campaign but are frequently the least obvious. They often recur very considerable time and commitment.

One of the main problems in persuading health authorities to take action on osteoporosis, is that current budgeting strategies encourage short-term planning only. The facts are that every health district has at least 500 hip fractures costing more than L2.5 million each year; setting up a basic osteoporosls service costing only £50 000, (the equivalent of only 2 weeks' hip fractures), would be likely to save considerably more fractures than that. But health authormes, thinking only of this year's budget, are relatively unconcerned about savings m 10 or 15 years' time. Press and


public interest and pubhc pressure are therefore a vital part of the process of encouraging health authorities even to consider osteoporosis.

Fundraising

Raising funds is an important part of the Society's work, in order to provide support for research as well as to enable other activities to take place. It ~s vital that funds should be raised independently with less than 25% being derived from pharmaceutical compames.

Raising awareness of osteoporosis is an important part of fundraising too" the level of publicity certainly has an influence on the number of donations from a variety of sources.

The NOS has set up its own 'NOS Trading Company' to raise funds and awareness by selling merchandise which generates cash for projects and research and raises awareness by use of the NOS message and logo. For example, last year NOS Christmas cards took the osteoporosis message into thousands of homes and raised good profits for research funds.

Raising awareness of osteoporosis in Europe

The European challenge

A survey conducted among women in 17 European countries confirms that, although recognition of osteoporosis is high, awareness among those potentially at risk of the &sease is only super Jicial. The lifetime risk of a hip fracture in women is larger than the sum of'Ylilifeume risks of having breast, endometrial, and ovarian cancer, yet 31% of over 6000 women interviewed in the survey thought breast cancer was more common. This survey high- lights the need to raise the profile of osteoporosis m order to educate those at potenual risk and to inform sufferers throughout Europe.

The aim of the European Foundation for Osteoporosis (EFFO) is not simply to increase awareness but to motivate people to take action to prevent, diagnose early, and treat osteoporosis appropriately.

The pubhc

EFFO works with European national patient orientated societies to help coordinate, harmomze (when appropriate and with respect for cultural and national &fferences), and implement public awareness actwitles across Europe. Iniuatives include special events to increase the public profile of osteoporosls on World Osteoporosis Day. Coordinated public awareness activities across Europe can be facilitated by EFFO. This creates greater impact and networking at the European level and is vital for increasing the accesslbd~ty of informauon to the osteoporouc patient.

EFFO can also encourage joint initiatives with other groups who have


access to osteoporotic patients, such as Eurolink Age (a European network concerned with older people and issues of ageing), to ensure wider availability of mdependent, up-to-date, reliable information which has been approved by the pre-eminent European scientists in the area.

Healthcare professionals

EFFO participates in many educational acuvities for healthcare professionals to promote the responsible management of osteoporosis.

Osteoporosis Internatzonal, the first international, scientific journal devoted to osteoporosis, and developed by EFFO in partnership with the National Osteoporosis Foundation of America, provides a multi-disciplinary forum for the exchange of current ideas concerning osteoporosis.

EFFO also recognizes the need for European Guidehnes, for example, 'Guidelines for Diagnosis and Management of Osteoporosis'. Despite the availabthty of diagnostic tests and effective interventions, many osteoporotic patients are not being treated (Figure 6). These guidelines have been produced to advise healthcare professionals, based on evidence to date, of the most cost-effective management of osteoporosis.

Recommendation of a dla(

UK Denmark Netherlands Norway Romania Taiwan

nostlc test for osteoporosls

Germany Canada Austria Puerto Rico Portugal Turkey

Italy Slovenia Spain Sweden Croatia

Exercise Diet/ Kinds of medtcatton

nutritton available to patient

Advtce given

Advice not given

57% 50%

Figure 6. The diagnosis and treatment of osteoporosls can be tmproved A survey of osteoporosis pattents showed that a diagnostic bone scan was often not recommended and that healthcare professtonals provide hmlted advice about measures whtch can be taken to help retard the progress of osteoporosis, such as exerctse, diet, and medtcatton


Training courses and educational workshops and conferences also stimulate professional awareness. From 11-15 September 1998, a European Congress on Osteoporosis will be held in Berlin under the auspices of EFFO and the International Federation of Societies on Skeletal Diseases in collaboration with the National Osteoporosis Foundation of America.

EFFO also awards educational and research grants to encourage Europeans to become actively revolved in the fight to combat osteoporosis.

Pohticians and healthcare administrators

EFFO conducts lobbying activities at the European Union (EU) to raise the profile of osteoporosis and to ensure that the d~sease is included in relevant EU initiatives.

EFFO News, a quarterly newsletter reporting the latest news concerning osteoporosis in Europe (Figure 7), provides a lobbying tool for use with decision makers. Current lobbying actwlty is focused on three key issues: first, the production of a European Commission report on osteoporosis. This vital report will act as the basis for future European action m this field, including the provision of services for osteoporosis. Once published, EFFO will work hard to ensure that the report is taken seriously and Is disseminated widely, particularly to national and regional healthcare administrators and insurance companies. This report is expected to be completed in early 1998. Second, information on osteoporotic fractures should be included in the health monitoring of the European citizen programme because current European data are very hmited. This information is needed if we are to assess osteoporosls in Europe, both now and in the future, together w~th any sawngs to be gained from the size and financial cost of lifestyle and environmental changes that could reduce the incidence of osteoporotlc fractures. Finally, the third key issue is to ensure that health problems arising from the ageing European population are included m the next European Commission research frame- work programme. It appears that research into healthy ageing is currently not included in the proposed research programme despite the demographic shift to an ageing society which requires changes in the orgamzation and financing of health care and services within the EU. In order to address this omission, EFFO proposes the formation of a task force on healthy ageing and will be actively promoting this ideal when the proposal is due to be finalized.

EFFO has only recently adopted a coordinated approach to raising awareness of osteoporosis among European opinion formers. Through many endeavours, EFFO hopes to influence the policies and resourcing of osteoporos~s services in member countries.

Summary

In order to achieve significant changes m action on osteoporosis by governments, pohticians, civil servants, health professionals and the public,

How do we increase awareness of osteoporosls? 643

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"EFFO NEWS', a quaderly pubScatmn, aims .~ to faoldate the exchange of news and ~teas ,., , ,-,

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We ale del.ghled to announce that Professor . ~, . , Halmut Mmne has accepted the role of ndztor, ,, part¢¢ularly as the newsletter was orlg.nally his ingather with Ih~ pObllCatlon el this newsletter Idea ProfessorMlnpe. f~ureheadoftheEuta- ~ . . . . " . . . . ' torture Knochengesundl.ett. a large patient society in Germany. =S acutely aware of all the opporlundles and issues facing osteopomsis pata~'lt soaehes and ~ are grateful for his Best wrshes for 19971 valuable collaberatmn ~,~ would also like to

A It members of EFFO wit automabcally re£e~e a broiled supply of newsletters but for th;~.e who

~ t*on of EFFO and the Amercan Nahonat • , - - I ~ Osleoporosls Fc~Jndator= c/)

T h e Proceedings of the 1996 Woikl Congress / o n O~leoporous have been pui~lsbed by

~ i ~ ' . . . . . ,.~ . . . . . . . . . Elsev=er ~ e n ~ ~n the Netherlands The volume ' " ~ " " " ' " ' . . . . . . is dwKled ,m~ seven ~tmns covenng all

aspects of the disease plu~ state Of-lhe-alt re'~ws and ~el~ted papers "Osteopacm~ '96" co~ts Dfl 330 and ran be oldered d~re£t

Q from Elsevier Soence tel +31 20 485 37g7, fax +31 204853432

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F igure 7. E F F O N e w s , a quarterly publication, reports on what is happening concerning osteoporosis in Europe It Is used as a lobbying tool with decision makers For subscr ipt ion details contact EFFO Secretanat


a dramatic increase in awareness of the seriousness of the disease is required. Both the UK and European experience highlight the need for a coordinated commumcations policy which aims to reach various key audiences. Getting across the message about osteoporosis reqmres con- sistent hard work as there is so much 'competition' in health issues today, both nationally and internationally; especially from diseases that cause suffering of children, those that have a high fear factor, such as cancer, or those that are 'popular' with stars and the media, such as AIDS. Osteoporosis is not a 'glamorous' disease area" so it requires greater commitment on the part of all those working in ~t ff changes are really to be effected.

Anyone working in the field of osteoporosis who has not given whole- hearted support to EFFO and their national patient society, needs to do so if a successful lobbying campaign and raised awareness of osteoporosis is to be achieved and sustained.

Highly effective work has already been done: this needs to be bruit on and developed if real results in terms of action are now to be achieved.

References

Gallup Research May 1993: Social populanon survey of GB women age 50 plus, for NOS. Survey and Marketing Services August 1993: m depth group discussions of cross-section of

women at risk age 45 plus, for NOS. Geriatric Medicine Questionnaire December 1993, for NOS. Nauonal Opimon Polls survey of 1000 women age 45 to 58, for Clba-Ge~gy 1992. Me&a Week Survey of 4500 women, February 1992. Taylor Nelson Medical Research in-depth survey of 719 women, average age 49-50,

November-December 1992, for Wyeth. NOS surveys of 18 000 members and osteoporosis sufferers, and of enqmrers (500 000 per

annum). Advisory Group on Osteoporosis Report, Department of Health. 3.6.2. November 1994. Gordon Simmons Research Group. Fax +44 171 833 9230. 'Europe'an Osteoporosls Study.'

Sponsored by Merck & Co, New Jersey, USA, m conluncuon with the First Worldwide Conference of Osteoporosls Pauent Societies, Bath, UK, June, 1995.

Consensus Development Statement (1997) Who are Candidates for Prevennon and Treatment for Osteoporosls? Osteoporos~s InternattonaI 1: 1-6.

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10 How do we increase awareness of osteoporosis?