Joan Austoker

Breast self examination.

A large well conducted randomised controlled trial from Shanghai shows conclusively that teaching women how to examine their breasts does not lead to a reduction in mortality due to breast cancer compared with no screening at all.1 The findings should bring to an end more than decade of controversy and confusion in the United Kingdom concerning the efficacy and effectiveness of self examination of the breast. In September 1991, in his retirement speech, Chief Medical Officer Sir Donald Acheson announced that breast self examination was not effective and may give a false sense of security. His remarks outraged womens health campaigners, fuelled by a media frenzy in favour of breast self examination that lasted several weeks. The introduction of a policy of breast awareness shortly afterwards only added to the confusion. Rather than ritually checking their breasts at a specific time each month according to a set technique, women were encouraged to take responsibility for their own health by taking convenient opportunities such as bathing or dressing to become familiar with their breasts at different times of the month and …

Public awareness of cancer in Britain: a population-based survey of adults

Objective:To assess public awareness of cancer warning signs, anticipated delay and perceived barriers to seeking medical advice in the British population.Methods:We carried out a population-based survey using face-to-face, computer-assisted interviews to administer the cancer awareness measure (CAM), a newly developed, validated measure of cancer awareness. The sample included 2216 adults (970 males and 1246 females) recruited as part of the Office for National Statistics Opinions Survey using stratified probability sampling.Results:Awareness of cancer warning signs was low when open-ended (recall) questions were used and higher with closed (recognition) questions; but on either measure, awareness was lower in those who were male, younger, and from lower socio-economic status (SES) groups or ethnic minorities. The most commonly endorsed barriers to help seeking were difficulty making an appointment, worry about wasting the doctors time and worry about what would be found. Emotional barriers were more prominent in lower SES groups and practical barriers (e.g. too busy) more prominent in higher SES groups. Anticipated delay was lower in ethnic minority and lower SES groups. In multivariate analysis, higher symptom awareness was associated with lower anticipated delay, and more barriers with greater anticipated delay.Conclusions:A combination of public education about symptoms and empowerment to seek medical advice, as well as support at primary care level, could enhance early presentation and improve cancer outcomes.

Development of a measurement tool to assess public awareness of cancer.

Objective:We aimed to develop and validate a measurement tool to assess cancer awareness in the general population: the cancer awareness measure (CAM).Methods:Items assessing awareness of cancer warning signs, risk factors, incidence, screening programmes and attitudes towards help seeking were extracted from the literature or generated by expert groups. To determine reliability, the CAM was administered to a university participant panel (n=148), with a sub-sample (n=94) completing it again 2 weeks later. To establish construct validity, CAM scores of cancer experts (n=12) were compared with those of non-medical academics (n=21). Finally, university students (n=49) were randomly assigned to read either a cancer information leaflet or a leaflet with control information before completing the measure, to ensure the CAM was sensitive to change.Results:Cognitive interviewing indicated that the CAM was being interpreted as intended. Internal reliability (Cronbachs α=0.77) and test–retest reliability (r=0.81) were high. Scores for cancer experts were significantly higher than those for non-medical academics (t(31)=6.8, P<0.001). CAM scores were higher among students who received an intervention leaflet than the control leaflet (t(47)=4.8, P<0.001).Conclusions:These studies show the psychometric properties of the CAM and support its validity as a measure of cancer awareness in the general population.

Symptoms associated with diagnosis of ovarian cancer: a systematic review

The overall five-year survival from ovarian cancer is currently poor at around 30%, with the majority of cancers being diagnosed at an advanced stage. The late stage at presentation has been blamed upon the insidious nature of the disease and the vagueness of the symptoms of ovarian cancer, which may be interpreted by patients as being normal changes in the body such as the effects of childbearing, menopause and ageing. In addition, many of the reported symptoms are not specific to ovarian cancer and may mimic conditions such as irritable bowel syndrome. The difficulties in recognising the likely symptoms of ovarian cancer are reflected in the often convoluted pathways that patients follow before being correctly diagnosed. Frequent symptoms recorded at presentation include pain and abdominal swelling, dyspepsia, vomiting, altered bowel habit and urinary symptoms of frequency or retention. These non-specific symptoms (as noted in the medical records) have been shown to be predictive of decreased survival. As the consequences of diagnosis at a late stage are catastrophic, the symptoms associated with the presence of ovarian cancer, and their subtleties, need to be better understood in order to facilitate appropriate and timely health-seeking behaviours and referral. Some research has been conducted in this field but has often been retrospective, limited and subject to recording and recall biases. In this study, the research to date has been identified and summarised.

A systematic review of information in decision aids

Objective  We completed a systematic review of information reported as included in decision aids (DAs) for adult patients, to determine if it is complete, balanced and accurate.

Breast Screening: Adverse Psychological Consequences One Month after Placing Women on Early Recall Because of a Diagnostic Uncertainty. A Multicentre Study

Background— It was the original intention of the UK National Health Service Breast Screening Programme (NHSBSP) to place women who were not diagnosed with cancer on three yearly routine recall (RR). In 1994–5 approximately 16 500 women, aged SO to 64, were placed on early recall (ER) at a shorter time interval, of which about 98% will have a normal result. This large number exceeds the expectations of the NHSBSP. Objective— To establish the adverse psychological consequences (PCs) for women one month after placement on ER because of a diagnostic uncertainty, and if detected, to suggest practical solutions to reduce them. Methods— Thirteen breast screening centres throughout the UK participated in the study. From March to October 199S all women who were placed on ER because of a diagnostic uncertainty were identified and compared with groups of women placed on RR (after mammography, assessment, fine needle aspiration, and a benign biopsy). These women were invited to complete a postal questionnaire one month after they were placed on ER or RR. One reminder was sent. Results— Overall 75% of women completed the questionnaire. The adverse PCs of placing women on ER because of a diagnostic uncertainty were higher (63%; n=81 of 130) than those of women placed on RR after mammography (29%; n=38 of 130) (P<0.00001) or assessment (50%; n=64 of 128)(Plt;0.05), but lower than the adverse PCs of women who underwent a benign biopsy (87%; n=26 of 30)(P<0.05). Factors that were significantly associated with subsequent adverse PCs were identified. Conclusions— The adverse PCs of being placed on ER because of a diagnostic uncertainty were significantly higher than those of women who turned out to have a false-positive mammographic result after assessment. Possible practical solutions are discussed.

Synthesising quantitative and qualitative research in evidence-based patient information

Background: Systematic reviews have, in the past, focused on quantitative studies and clinical effectiveness, while excluding qualitative evidence. Qualitative research can inform evidence-based practice independently of other research methodologies but methods for the synthesis of such data are currently evolving. Synthesising quantitative and qualitative research in a single review is an important methodological challenge. Aims: This paper describes the review methods developed and the difficulties encountered during the process of updating a systematic review of evidence to inform guidelines for the content of patient information related to cervical screening. Methods: Systematic searches of 12 electronic databases (January 1996 to July 2004) were conducted. Studies that evaluated the content of information provided to women about cervical screening or that addressed women’s information needs were assessed for inclusion. A data extraction form and quality assessment criteria were developed from published resources. A non-quantitative synthesis was conducted and a tabular evidence profile for each important outcome (eg “explain what the test involves”) was prepared. The overall quality of evidence for each outcome was then assessed using an approach published by the GRADE working group, which was adapted to suit the review questions and modified to include qualitative research evidence. Quantitative and qualitative studies were considered separately for every outcome. Results: 32 papers were included in the systematic review following data extraction and assessment of methodological quality. The review questions were best answered by evidence from a range of data sources. The inclusion of qualitative research, which was often highly relevant and specific to many components of the screening information materials, enabled the production of a set of recommendations that will directly affect policy within the NHS Cervical Screening Programme. Conclusions: A practical example is provided of how quantitative and qualitative data sources might successfully be brought together and considered in one review.

Awareness of cancer symptoms and anticipated help seeking among ethnic minority groups in England

Objective:Little is known about ethnic differences in awareness of cancer-warning signs or help-seeking behaviour in Britain. As part of the National Awareness and Early Diagnosis Initiative (NAEDI), this study aimed to explore these factors as possible contributors to delay in cancer diagnosis.Methods:We used quota sampling to recruit 1500 men and women from the six largest minority ethnic groups in England (Indian, Pakistani, Bangladeshi, Caribbean, African and Chinese). In face-to-face interviews, participants completed the newly developed cancer awareness measure (CAM), which includes questions about warning signs for cancer, speed of consultation for possible cancer symptoms and barriers to help seeking.Results:Awareness of warning signs was low across all ethnic groups, especially using the open-ended (recall) question format, with lowest awareness in the African group. Women identified more emotional barriers and men more practical barriers to help seeking, with considerable ethnic variation. Anticipated delay in help seeking was higher in individuals who identified fewer warning signs and more barriers.Conclusions:The study suggests the need for culturally sensitive, community-based interventions to raise awareness and encourage early presentation.

Written Information Needs of Women Who are Recalled for Further Investigation of Breast Screening: Results of a Multicentre Study

Objective – To assess the written information needs of women who are recalled for further investigation of breast screening. Methods– Women from eight breast screening centres in England, Scotland, and Wales who had been recalled for further investigation were invited to complete a structured questionnaire about aspects of recall. Four hundred and eighty four consecutive women were invited to be interviewed immediately before assessment. Two weeks after attendance for assessment 2132 consecutive women (including all women who had been interviewed) were sent a postal questionnaire. No reminder was sent. Subjects from four of the centres received an information leaflet with their recall letter, the remainder did not. Letters/leaflets used by the centres differed markedly. Results– The response rate was 95% for the interview questionnaires and 70% for the postal questionnaires. Women who were prepared in advance for a possible recall were less likely to feel distressed/very distressed when receiving a recall letter. The more aspects of the recall process included in the recall literature, the more women were likely to think that assessment had been explained (89% of women (544/609) receiving six or more items of information compared with 73% of women (269/370) receiving four or fewer items (P<0·0001). Women who received a leaflet with their recall letter were significantly more likely to find some aspect of the information about recall reassuring than women who did not (61% (313/510) ν 50% (278/557); P<0·0001). Distressed/very distressed women were significantly more likely than somewhat/not distressed women to want further information about the reasons for recall (48% (403/834) ν 26% (157/598); P<0·0001 and how to get more information (29% (237/811) ν 19% (116/616); P<0·0001). Conclusions– Information can increase satisfaction and reduce distress. The amount of information women needed about recall was consistently underestimated. Inclusion of a leaflet improved satisfaction. Sensitive topics, words, and phrases should be carefully expressed.

What Is the Psychological Impact of Mammographic Screening on Younger Women With a Family History of Breast Cancer? Findings From a Prospective Cohort Study by the PIMMS Management Group

PURPOSE Studies are underway to establish the clinical effectiveness of annual mammographic screening in women younger than 50 years with a family history of breast cancer. This study investigated both the positive and negative psychological effects of screening on these women. PATIENTS AND METHODS Women who received an immediate all-clear result after mammography (n = 1,174) and women who were recalled for additional tests before receiving an all-clear result (false positive; n = 112) completed questionnaires: 1 month before mammography, and 1 and 6 months after receiving final results. The questionnaires included measures of cancer worry, psychological consequences, and perceived benefits of breast screening. RESULTS Women who received an immediate all-clear result experienced a decrease in cancer worry and negative psychological consequences immediately after the result, whereas women who were recalled for additional tests did not. By 6 months this cancer-specific distress had reduced significantly in both groups. Changes in levels of distress were significantly different between the two groups, but in absolute terms the differences were not large. Recalled women reported significantly greater positive psychological consequences of screening immediately after the result, and were also more positive about the benefits of screening compared with women who received an immediate all-clear result. CONCLUSION For women receiving an immediate all-clear result, participating in annual mammographic screening is psychologically beneficial. Furthermore, women who are recalled for additional tests do not appear to be harmed by screening: these womens positive views about mammography suggest that they view any distress caused by recall as an acceptable part of screening.