Bethan J. Henderson

Common, important, and unmet needs of cancer outpatients

PURPOSE To maximize patient well-being, health and social care should, whenever possible, address individual patient needs. The present study aims firstly, to identify prevalent, salient and unmet needs amongst cancer outpatients, and secondly, to explore socio-demographic and clinical influences on expressed need. METHODS One-hundred and ten outpatients registered at a UK cancer treatment centre completed a self-report questionnaire measuring the presence, salience and degree to which 80 need items were met. Six broad cancer sites were represented: urology, colorectal, breast, gynaecology, haematology, and head and neck. RESULTS The mean number of needs reported was 27. The top five needs concerned the treatment, care and health information patients receive from healthcare professionals, all of which were rated as well met. Least met needs included receiving genetic information, information about lifestyle changes, help with worries about spread or recurrence, and parking near treatment centres. Salient needs showed greater variation across the sample and were often unmet, for example the need for genetic information, and the need for information about symptoms/indicators of recurrence. Gender (female), age (younger), having an informal caregiver, and cancer site all affected aspects of need; whereas time since diagnosis and type of treatment did not. CONCLUSIONS Acknowledging these influences on patient need could help guide patient-centred support services with potential gains to patient satisfaction and well-being.

Three lay mental models of disease inheritance

Genetics are coming to play an increasing role in biomedical understanding of common diseases. The implication of such findings is that at-risk individuals may be offered predictive genetic tests. How do individuals make decisions about predictive tests and what information do they need to make informed choices? Richards [Richards, M.P.M., 1993. The new genetics: some issues for social scientists. Sociology of Health and Illness 15, 567-586] has argued the first step in understanding and helping people to make these decisions is to investigate lay beliefs of genetics. This study examined mental models of inheritance in a sample of 72 lay people. Through analysis of open-ended questionnaires we found three mental models which loosely corresponded to three phases of historical development in the science of genetics. These we labelled the Constitutional, Mendelian and Molecular Models. Predictions for individuals holding each model are made for the comprehension of genetic information in a testing situation.

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.

Predictors of breast cancer-related distress following mammography screening in younger women on a family history breast screening programme

Objective: This longitudinal study investigated pre‐screening factors that predicted breast cancer‐specific distress among 1286 women who were undergoing annual mammography screening as part of a UK programme for younger women (i.e., under 50) with a family history of breast cancer.

Lay Representations of Genetic Disease, and Predictive Testing:

As research in human genetics advances, genes for familial forms of cancer and heart disease will continue to be identified. The implication of such findings is that at-risk individuals will be offered a predictive genetic test. How do individuals make such decisions and what information do they need to make informed choices? Richards (1993) has argued that the first step in understanding and helping people to make these decisions is to investigate lay beliefs of genetics. This study examined illness representations of genetic disease, and predictive testing in a sample of 20 educated lay people. Through content analysis of open-ended interviews, we discovered that individuals have limited knowledge of late-onset genetic disorders and predictive testing. Most of the sample identified genetic diseases that manifest in childhood, and were more familiar with prenatal testing. They did not mention any treatment options for genetic disorders, which may indicate that lay people are more deterministic about diseases with a genetic component. Finally, they consistently raised concerns about the ethics of genetic testing and research. The implications of our findings for the provision of information in a genetic testing situation are discussed.

Diagnosed with breast cancer while on a family history screening programme: an exploratory qualitative study

Mammographic screening is offered to many women under 50 in the UK who are at moderate or high risk of developing breast cancer because of their family history of the disease. Little is understood about the impact of screening on the emotional well-being of women with a family history of breast cancer. This qualitative study explores the value that women at increased risk placed on screening, both pre- and post-cancer diagnosis and the impact of the diagnosis. In-depth interviews were undertaken with 12 women, aged 35-50, diagnosed with breast cancer while on an annual mammographic screening programme. Women described the strong sense of reassurance gained from screening prior to diagnosis. This faith in screening was reinforced by early detection of their cancer. Reactions to diagnosis ranged from devastation to relief at having finally developed a long-expected condition. Despite their positive attitudes about screening, not all women wanted to continue with surveillance. For some, prophylactic mastectomy was preferable, to reduce future cancer risk and to alleviate anxieties about the detection of another cancer at each subsequent screen. This study illustrates the positive yet diverse attitudes towards mammographic screening in this group of women with a family history of breast cancer.

Mammographic screening for young women with a family history of breast cancer: knowledge and views of those at risk

Although the effectiveness of mammography for women under the age of 50 years with a family history of breast cancer (FHBC) has not yet been proven, annual screening is being offered to these women to manage breast cancer risk. This study investigates womens awareness and interpretation of their familial risk and knowledge and views about mammographic screening. A total of 2231 women from 21 familial/breast/genetics centres who were assessed as moderate risk (17–30% lifetime risk) or high risk (>30% lifetime risk) completed a questionnaire before their mammographic screening appointment. Most women (70%) believed they were likely, very likely or definitely going to develop breast cancer in their lifetime. Almost all women (97%) understood that the purpose of mammographic screening was to allow the early detection of breast cancer. However, 20% believed that a normal mammogram result meant there was definitely no breast cancer present, and only 4% understood that screening has not been proven to save lives in women under the age of 50 years. Women held positive views on mammography but did not appear to be well informed about the potential disadvantages. These findings suggest that further attention should be paid to improving information provision to women with an FHBC being offered routine screening.

The impact of information order on intentions to undergo predictive genetic testing: An experimental study

As predictive genetic testing availability increases so does our need to understand factors associated with test uptake. This study tests whether the order positive and negative information about genetic testing for breast cancer is presented in affects intention to take a genetic test. Eighty-four women were randomly allocated into three groups: (1) positive then negative information; (2) negative then positive information; and (3) a control group. A significant effect was found in relation to perceived risk, attitudes towards genetic testing, perceived disadvantages of testing and intention. Our findings point to a primacy effect, whereby information presented first has the greatest effect.

How people make decisions about predictive genetic testing: An analogue study

Predictive genetic testing will be possible for more common diseases in the future. Little is known, however, about the decision process people go through when considering genetic testing. This study looked at peoples’ decisions to seek professional advice on genetic testing for a hypothetical adult onset disease. Twenty individuals were presented with a decision scenario and verbal protocols were collected whilst participants worked through information relevant to the decision. Information was presented to participants via a computer and each participants path through the information was recorded. Analysis of the data demonstrated that whilst most participants evaluated the consequences of the various decision options, this strategy was embedded within a variety of decision making styles. These were identified as conflicted change, unconflicted change, worst case scenario, dominant moral stance, naturalistic style, and vigilance respectively. Implications for clinical practice and future research are discussed.

Diagnosed with breast cancer whilst on a family history screening programme: an exploratory qualitative study

Mammographic screening is offered to many women under 50 in the UK who are at moderate or high risk of developing breast cancer because of their family history of the disease. Little is understood about the impact of screening on the emotional well-being of women with a family history of breast cancer. This qualitative study explores the value that women at increased risk placed on screening, both pre- and post-cancer diagnosis and the impact of the diagnosis. In-depth interviews were undertaken with 12 women, aged 35–50, diagnosed with breast cancer while on an annual mammographic screening programme. Women described the strong sense of reassurance gained from screening prior to diagnosis. This faith in screening was reinforced by early detection of their cancer. Reactions to diagnosis ranged from devastation to relief at having finally developed a long-expected condition. Despite their positive attitudes about screening, not all women wanted to continue with surveillance. For some, prophylactic mastectomy was preferable, to reduce future cancer risk and to alleviate anxieties about the detection of another cancer at each subsequent screen. This study illustrates the positive yet diverse attitudes towards mammographic screening in this group of women with a family history of breast cancer.