What information do breast cancer screening programmes provide to Italian women?
Livia Giordano1, Maria Rowinski1, Giuseppe Gaudenzi2 and Nereo Segnan1
1 Unit of Epidemiology, CPO Piemonte, ASO San Giovanni Battista di Torino, Via S. Francesco da Paola 31, 10124 Turin, Italy
2 Zadig - Scientific Journalism Agency, via Calzecchi 10, 20133 Milan, Italy. Died on 5.10.2001
Correspondence: Dr L. Giordano, Unit of Epidemiology, CPO Piemonte, ASO San Giovanni Battista di Torino, Via S. Francesco da Paola 31, 10124 Torino, Italy, tel: +39 011 6333852, fax: +39 011 6333861, Email: livia.giordano{at}cpo.it
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Abstract |
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Backgrounds: The necessity for building transparent communications on screening, both on risks and benefits, is shared by different sides. There is a general agreement that women cannot express informed participation in a screening programme unless they are given sufficient and adequate information. In the screening context, invitation letters and leaflets often represent the principal source of information. Methods: The invitation letters and leaflets used by 60 Italian breast cancer screening programmes were collected and evaluated through a score sheet developed to verify what kind of information is provided to women. Results: Fifty-three programmes (88.3%) answered and 47 (78.3%) were included in the analysis because of completeness of the material. Nearly all the programmes provide satisfactory practical information and explanations about the test and the screening aims. Few programmes mention the possibility of some discomfort during the exam (34.0%), quality assessment and operator training (10.6%), double reading (6.4%), radiation risk (6.4%) and data confidentiality (6.4%). 68.1% provide information about recall but none describes what a further assessment involves. Epidemiological and numerical information are present only occasionally. Conclusion: Although satisfactorily disclosing some practical information, Italian invitation letters and leaflets remain inadequate in managing side effects and risks. If accurate information has the potential to enable women to make an informed choice, the information inviting them to perform screening test must be improved. Further researcher is needed to evaluate different decision aids to meet women's desires for balanced information.
Key points
- Women cannot express informed participation in a breast screening programme unless they are given balanced information both on benefits and adverse effects.
- Current information screening tools often omit relevent data, fail to give information about pros and cons and ignore uncertainties.
- Despite these considerations, how much information should be given and how this should be framed remains still to be defined.
- Further evalutions of different ways of presenting information and women's information needs are urgently required.
Keywords: Breast cancer, communication, informative leaflets, screening
The past approach to screening information has mainly stressed the benefits of screening for the population, with the purpose of encouraging every eligible woman to participate, often glossing over detrimental side effects such as anxiety, false reassurance, false alarms, unnecessary biopsies, overdiagnosis and overtreatment.1–5
There is now a general agreement that women cannot express informed participation in a population-based cancer screening programme unless they are given sufficient and adequate information, including explanations about advantages and disadvantages.6–9
This is part of a wider and more general transformation regarding the decision-making process where a new doctor–patient relationship is based on responsibility sharing and collaboration among equals.10–12 If patients are to be active participants in decisions about their care, the information they are given must be in accordance with available evidence and be presented in a form that is acceptable and useful.13
But while within the clinical environment the doctor–patient relationship is based on a specific call for help between an ill person and someone who has the capacity to cure him, in the screening scenario matters run in a different way.
The ethical issue of screening as opposed to clinical practice is stressed by the fact that asymptomatic and healthy people are involved. Moreover, a population-based screening programme, due to its organizational characteristics, often leaves the woman with a reduced possibility of getting in touch with the health workers before undertaking the test.
For these reasons, the most widespread and low-priced informative tools used in screening programmes, such as invitation letters and leaflets, can play an important role in supplying and reinforcing information in the direction of an informed choice.14,15
The goal of this work is to describe what kind of information is provided to women by Italian mammography screening programmes through these two communication instruments.
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Methods |
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In Italy there is no national breast cancer screening programme but some regional or local activities mainly located in the northern and central part of the country. Most of them are involved in a national group named GISMa (Italian Breast Cancer Screening Group) whose focal aim is to compare protocols and results among programmes.
In spring 2001, the 60 programmes within the GISMa group (covering about 800,000 50–69 aged women) were contacted in order to collect all invitation letters and information leaflets.
All material has been evaluated through a score sheet designed for this purpose with the consensus of national communication experts. This has been structured in four sections of investigation: logistic and organisational information, screening objectives, mammography and screening information, epidemiological and quantitative data (table 1).
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Results |
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Of 60 programmes contacted, 53 (88.3%) answered. Among these, 47 sent the requested material and were included in the analysis (table 1).
Logistic and organisational information
Practical information is primarily communicated by the invitation letter: the modalities to take/change an appointment (91.5%), the documents women should bring (85.1%), the test fee (100%).
More than half of the programmes explain, mostly in the leaflet, the modalities through which patients get to know their mammography result and 17% of programmes also state when. Three programmes out of 47 inform women on data confidentiality and privacy while another five point out that instrument and procedure controls are regularly performed.
Screening objectives
44.6% of programmes explain what a screening programme is. All of them state clearly which the screening target population is and underline mammography benefits even if they are usually expressed in a generic way ‘...the mammography, performed every two years is the most effective way for early detection of breast cancer ...it is the safest way to fight this cancer, to decrease damages and to increase recoveries...’
About half of the programmes, especially in the leaflet, state the importance of performing the test also when there are no symptoms. In detail, about 43% of programmes inform about the possibility of having ‘less invasive...limited surgical interventions’, in the case of cancer.
Mammography and screening test information
More than 90% give explanations through the leaflet on ‘what mammography is’ and on the intervals between tests. About 30% explain how the test is performed and 34% mention possible ‘inconveniences’ caused by the test.
Nearly 90% also mention the duration of the test, even if there is no time specification: ‘a short test’, ‘quick’, ‘that requires a short time’.
Three programmes also mention the risk due to radiography: ‘the quantity of X rays used is 12 times less than the one used 10 years ago’, ‘ ...risk is negligible, definitely in relation to offered advantages...’, but no programme gives risk estimates.
Approximately 30% inform that mammograms are read by especially trained radiologists and 6.4% mention the double reading (even if this happens in nearly all programmes).
About 68% of programmes report the possible need for a further investigation after a suspicious mammography but no programme describes what this consists of.
Epidemiological / numerical information
Among the epidemiological information the most common one is breast cancer mortality reduction. It is used to describe screening mammography benefits: 11 programmes (23.4%) speak about it giving a risk relative reduction estimate of 30%.
Seven programmes (14.9%) provide regional and/or Italian estimates for breast cancer incidence.
Four programmes (8.5%) speak about women's risk of contracting cancer during their lifetime with estimates that ranges from ‘1 woman out of 10’ to ‘1 woman out of 15’.
One leaflet only (2.1%) gives information on breast cancer survival and only one programme (2.1%) speaks about test accuracy.
None of the programmes speak about other considered epidemiological and quantitative data.
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Discussion |
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Currently there is no consensus on what should be said to women invited to undergo a screening test even if the majority of experts agree that individuals must be given information about the pros and the cons of screening to enable informed choice.6–9
How this information should be conveyed remains to be defined as well.
Also the impact of different amounts of information (more or less complete) on compliance has never been documented.
Medical experts sometimes are worried that a clear risk statement could discourage people from attending.7 On the contrary, others have suggested that lower participation rates could be accepted if women became more aware of the advantages and limitations of screening and consequently able to choose according to their personal values.16,17
Although invitation letters and leaflets are the two most disseminated communication instruments used in the screening context, they certainly cannot be considered as exhaustive in describing the communication pathway and content of each programme. They have some obvious limitations: they need to be concise, they are addressed to a general readership and they are not effective for individuals who do not read.
Notwithstanding this, in the context of a population-based screening, they often represent the only source of information. For these reasons their analysis allows one to get a general picture about the kind of information available to women involved in organised cancer screening.
Our survey shows that Italian breast screening programmes handle very heterogeneous material and that leaflets and letters communicate different items with different developments.
The first invitation letter is mainly used to give practical information. This seems obvious due to the necessity of giving unambiguous and essential messages to avoid confusion and to provide women with clear practical information.
In contrast, leaflets usually provide more detailed information on some technical characteristics of the test even if some items are reiterated, as an enhancement, in both instruments.
As far as the information contents are concerned, while information about screening techniques and aims appear adequate, they are rather weak on side effects and risks. Negative effects are frequently glossed over or inconsistently reported. Benefits are often vaguely mentioned or in a way that emphasizes promises of benefit without clarifying the existing balance between limits and advantages, increasing the risk of misunderstandings.18–20 In the same way, numerical and epidemiological data are rarely provided.
Although the general agreement in encouraging women to make their choice on the basis of accurate unbiased information, official Italian screening leaflets and invitation letters remain inadequate and are still someway far from providing complete and transparent information.
The question of how much information can or should be given to support (and not to confuse or hinder) decisions is very complex. Uncertainties and scientific controversies as well as potential conflicts between population and individual interests represent important barriers to an effective communication process. Furthermore, it is certainly not easy to spread this kind of information, particularly within a culturally non-homogeneous population, like the one involved in screening.
If women must be enabled to make true informed choices about screening, the information inviting women to perform the test must be improved.
Further evaluations of the way of presenting information, different cost-effective formats, the impact due to different amounts of information are urgently needed and all these should be analysed both on their effect on participation and women's awareness.
Researchers should be undertaken on what constituted relevant information for women involved in screening, what they believe about the disease and its causes and what they understand about the early diagnosis purposes.
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Acknowledgments |
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We are grateful to all the Italian screening programmes involved in the GISMa group for their active collaboration and willingness in forwarding the information material.
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Footnotes |
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Funding: The Italian Ministry of Health supported the study.
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References |
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