Print information to inform decisions about mammography screening participation in 16 countries with population-based programs

doi:10.1016/j.pec.2005.09.012

Patient Education and Counseling

Volume 63, Issues 1–2, October 2006, Pages 126-137

https://doi.org/10.1016/j.pec.2005.09.012 Get rights and content

Abstract

Objective

To profile and compare the content and presentation of written communications related to informed decision-making about mammography.

Methods

Materials from 16 screening programs organized at the national or regional level were analyzed according to five major information domains suggested by the international literature.

Results

A majority of countries provided information on the program (interval, cost and quality). There was considerable variability in comprehensiveness of elements in the domains, e.g., test characteristics (false positive/negative) and pros and cons of screening. The majority noted the likelihood of recall for further tests, few commented on the risks of additional tests or finding unimportant tumors. The audit also found variation in presentation (words and pictures).

Conclusions

Presentation of comprehensive, but balanced information on screening benefits and risks is complex and daunting. Issues such as framing effects, coupled with debate about screening efficacy are challenging to the design of effective information tools. The objective of increasing screening prevalence at the population level must be balanced with objectively presenting complete and clear information. Additional research is needed on how information (and mode of presentation) impact screening decisions.

Practice implications

Public health officials need to articulate their objectives and review written communication according to important decision-making domains.

Introduction

Evidence for the benefit of mammography has been collected in randomized clinical trials since the 1960s [1], [2], [3], [4]. Because mammography technology has improved since the randomized trials began, some believe the benefit is even greater for those participating in screening today [5]. As a result, countries worldwide have established national and regional population-based screening programs [6], [7].

The evidence about efficacy of mammography is strong, particularly for women aged 50 years and over, and the evidence about program effectiveness grows, albeit not without debate [8], [9], [10], [11]. There remains concern that women be fully informed about the nature of breast cancer and the detection tests, likely consequences, including risks, limitations, benefits and uncertainties [12], [13], [14]. There is a growing literature related to communication and decision-making with respect to medical screening and treatment decisions [15], [16]. This interest applies to mammography, given the recent controversies about efficacy. A recent review of 27 websites in Scandinavian and English-speaking countries reported that information provided by professional advocacy groups and government agencies was severely biased in favor of screening [17]. This raises questions about what facts are presented to women about screening and how information is presented, which is basic to informed decision-making.

The International Breast Screening Network (IBSN) is a consortium of representatives from countries with population-based cancer screening or surveillance programs. Administrative support is provided by the United States National Cancer Institute (NCI). The IBSN has investigated shared information related to quality assurance [18], [19], program administration and operations [6], [20], and technical quality control [7]. Interest was expressed in better understanding the communication strategies countries used to help women understand important aspects of breast cancer and screening and to also understand the content of the communications. A Communications Working Group (CWG) was formed in May 2002. The purpose of this report is to profile and compare the content of the written communications from a convenience sample of countries on key content elements related to breast cancer and screening and informed decision-making. We also report countries’ explicit use of decision-making language, as well as describe aspects of the visual impression. We discuss observations about the variability of information presentation and framing.

Section snippets

Participants and materials collection

The CWG initiated an assessment survey of 25 participating countries, asking them to identify the types of communication tools being used and to forward copies of them for content analysis [21]. Sixteen of the countries responded and supplied samples of selected written materials. Participants do not include countries such as the United States, which have opportunistic, rather than centrally organized, mammography screening programs [22].

In 2003, countries submitted the patient information

Country and program characteristics

Sixteen countries profiled contributed information and education materials for analyses (column 1, Table 2). Three countries (Spain, Switzerland and Denmark) reported programs at the state, province and regional levels. Three countries (Australia, France and Canada) reported national programs, implemented at the state, provincial or regional level. The material from Italy was from the Piedmont Regional program and may not be representative of all regional programs. All other countries reported

Discussion

These findings suggest that 16 countries provide a variety of information to women about breast cancer risks, mammography, and the risks and benefits of screening via mammography; the information, however, was related with considerable variability in detail and comprehensiveness. There is debate in the literature about the need to provide information on incidence and risk, particularly about the details and framing of risk information [17], [35]. Countries with earlier established programs

Acknowledgements

This work was funded by the National Cancer Institute, USA. All findings and interpretation are solely the responsibility of the authors and do not represent those of the US government. The International Breast Cancer Screening Network (IBSN) is acknowledged for their leadership and previous collaborative work. The authors thank Caroline Cranos, Michelle McGee and Christine Foley for analysis and production assistance, and Barbara Rimer (UNC), Helen Meissner and Carrie Klabunde (NCI) for review

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View full text

Print information to inform decisions about mammography screening participation in 16 countries with population-based programs

Abstract

Objective

Methods

Results

Conclusions

Practice implications

Introduction

Section snippets

Participants and materials collection

Country and program characteristics

Discussion

Acknowledgements

Periodic screening for breast cancer: the health insurance plan project and its sequelae

The Canadian National Breast Screening Study-1: breast cancer mortality after 11 to 16 years of follow-up. A randomized screening trial of mammography in women age 40 to 49 years

Ann Intern Med

14 years of follow-up from the Edinburgh randomised trial of breast-cancer screening

Lancet

Long-term effects of mammography screening: updated Swedish randomised trials

Lancet

The impact of organized mammography service screening on breast carcinoma mortality in seven Swedish counties

Cancer

Breast cancer screening programmes in 22 countries: current policies, administration and guidelines. International Breast Cancer Screening Network (IBSN) and the European Network of Pilot Projects for Breast Cancer Screening

Int J Epidemiol

Technical quality control practices in mammography screening programs in 22 countries

Int J Qual Health C

Cochrane review on screening for breast cancer with mammography

Lancet

On the efficacy of screening for breast cancer

Int J Epidemiol

Breast cancer screening controversies

J Am Board Fam Pract

Screening mammography for early diagnosis of breast cancer: facts, controversies, and the implementation in Israel

Harefuah

Promoting informed decisions about cancer screening in communities and healthcare systems

Am J Prev Med

Shared decision making about screening and chemoprevention

Am J Prev Med

Europe continues breast screening despite doubts

Lancet Oncol

Informed decision making: what is its role in cancer screening?

Cancer

Presentation on websites of possible benefits and harms from screening for breast cancer: cross sectional study

Brit Med J

Quality assurance for screening mammography: an international comparison

J Epidemiol Commun H

Quality assurance for screening mammography data collection systems in 22 countries

Int J Technol Assess

Breast cancer screening in 21 countries: delivery of services, notification of results and outcomes ascertainment

Eur J Cancer Prev

A perspective from countries using organized screening programs

Cancer

Mammography messages in popular media: implications for patient expectations and shared clinical decision-making

Health Expect

Informed decision making for cancer screening-not all of the ethical issues have been considered

Cytopathology

Population-based mammographic screening: does ‘informed choice’ require any less than full disclosure to individuals of benefits, harms, limitations and consequences?

Aust NZ J Publ Heal