Participation in screening programmes

Bibliographic Data

ID19506723
AuthorsVikki Entwistle (0000-0002-0856-4025, University of Aberdeen, corresponding author)
Year2001
Volume4
Issue2
Pages79-80
Publication date2001-06-25
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1046/j.1369-6513.2001.00146.x
PMID11359536
OpenAlexW2024192769
LanguageEN
References cited9

Most of the papers in this special issue of Health Expectations were first prepared for a workshop on Informed Choice in Screening and Preventive Health-care held in June 2000 to help the UK’s National Screening Committee develop policies relating to how people should be informed about and invited to have particular screening tests. The collection of papers presented here reflects some key debates about who should decide, and on what basis, who will or will not have particular tests. It also presents some new methodological work relating to the assessment of informed choice. Several related themes recur throughout the issue. Firstly, there is a strong sense that although traditional public health approaches can encourage the development of screening programmes that are efficient, accessible and quality assured, the disadvantages of trying to promote mass uptake of screening tests with simple persuasive communication strategies are increasingly apparent. Angela Raffle’s article highlights some of the problems and explains why more informative communication strategies are increasingly favoured.1 The second recurring theme is that although there is some agreement that much of the information that is currently provided about screening is inadequate, there is less agreement about what kinds of information should be made available to the potential participants of screening programmes. Previous studies of information materials about screening have revealed several inherent biases.2, 3 In this issue, Karen Dobias and co-workers’ analysis of articles about mammography in American women’s magazines suggests that the print media – particularly those read by women who are less well educated and less well off – also tend to emphasize the benefits and downplay the disadvantages and controversies of screening.4 Vikki Entwistle’s article considers the different types of information and decision support that might be provided about screening and explores the potential implications of introducing decision aids into established screening programmes.5 The article highlights the close relationship between opinions about the aims of screening programmes and opinions about what information should be given to potential participants in those programmes. Disputes about the appropriateness of different approaches to information provision and decision support often reflect disputes about the primary aims and values of screening programmes. Several articles explore the issues that underlie these disputes, and particularly the tensions between population and individual interests, and between the promotion of health gain and autonomy. Michael Parker, for example, in his consideration of the ethics of evidence based patient choice, argues that individual choices need not be individualistic choices, and that genuinely autonomous decisions take account of publicly held moral values and of the effects our actions have on others.6 The implication of his argument is that individuals can and should be encouraged to reflect on other interests as well as their own when deciding whether or not to accept screening tests. The possible consequences of different approaches to informing people about screening tests and helping them to make up their own minds about accepting them are also mentioned in several articles. Opinions differ about what these consequences might be and how they should be valued and dealt with. For example, some people worry that people who are told about the disadvantages as well as the advantages of particular screening tests might choose not to have them, which could result in lost health gain opportunities for the individuals themselves and for the population as a whole. There are also concerns that there might be a disproportionate reduction in uptake among disadvantaged groups, which would tend to increase health inequalities. The question of how many people would choose not to accept particular screening tests if they were informed about the options and given a choice is an empirical one. Ruth Jepson and co-workers reviewed studies that evaluated the effects of providing different types and amounts of information about screening on uptake and knowledge.7 Only four studies met their inclusion criteria, and differences between them meant that the review findings were rather inconclusive – although there was no indication of a striking drop in screening uptake among the groups given more information to support their decision-making! The possibility that the interventions had a differential impact on particular population subgroups was not assessed and remains an important issue for future research. One explanation for the apparently limited impact of more detailed information about screening on uptake rates is that the introduction of improved information materials alone may not change the dominant influences on decisions about screening uptake. The attitudes, skills and working patterns of health professionals may play a key role, and several papers mention the implications for these of encouraging individual deliberation about screening tests. Jon Emery focuses particularly on the challenges of introducing a shared decision-making approach in the context of clinical genetics.8 His article should remind us that professional training will need to reflect the demands of supporting more informed patient participation in decision-making about screening. Appointment systems and systems of payment for clinicians may also need to be changed before informed choice about screening can become the norm. The effects of introducing interventions to promote ‘informed choice’ in screening programmes should be monitored and evaluated. Work is needed to establish just what the criteria for success should be (which will depend in part on the aims and priorities of the screening programmes and of the interventions themselves) and then to operationalize those criteria into valid, reliable and useful measures. Theresa Marteau and co-workers report on the development and piloting of a measure of the extent to which choices about prenatal testing for Down’s syndrome are based on relevant knowledge, consistent with parents’ values and behaviourally implemented.9 We think that their paper will stimulate debate about evaluation criteria, but it makes an important methodological contribution to the assessment of participation in screening decisions and will have relevance for other areas of health-care. The Health Services Research Unit is core funded by the Chief Scientist Office of the Scottish Executive. The views expressed are those of the author and not necessarily those of the Department

Health care · Medical education · Political science · Public relations · BRCA gene mutations in cancer · Computer Science · Ethics in Clinical Research · Global Cancer Incidence and Screening · Law · Medicine · Psychology

Tools

Open DOISci-HubOpen Access