Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review.

BACKGROUND: The physical health of people with intellectual disabilities (ID) has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating that people with ID are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesise the published academic literature exploring cancer risk-factor and symptom awareness among people with IDs, carers and healthcare professionals. METHODS: In line with Arksey and O'Malley's (2005) framework for scoping reviews, five incremental stages were followed: (1) identifying research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, and (5) collating, summarising and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (PRISMA-Scr). RESULTS: The search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms and interventions to promote awareness of cancer. CONCLUSIONS: Cancer risk-factor and symptom awareness is low among adults with ID, paid and unpaid carers and healthcare practitioners (HCPs). Theoretically underpinned, co-designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with ID in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers are needed to build a complete picture of awareness among adults with IDs, paid and unpaid carers, and HCPs.

Smokers are less likely than non-smokers to seek help for a lung cancer 'alarm' symptom.

BACKGROUND: The majority (>85%) of lung cancer cases are linked with smoking, and prognosis is poor because it is often diagnosed at a late stage. One contributor to late-stage diagnosis could be patient delay in help-seeking. We investigated the help-seeking behaviour of smokers and non-smokers for a recent lung cancer alarm symptom. METHODS: A health survey was sent to 4913 men and women aged >50 years through through General Practice. It included questions on symptoms experienced in the past 3 months (from a checklist), help-seeking (Yes/No) for each symptom and demographic characteristics including smoking status. Univariable and multivariable binary logistic regression analyses were used to assess the association between smoking status and help-seeking for a cough or hoarseness. RESULTS: Among 2042 participants (42% response rate), 280 (14%) reported 'cough or hoarseness' in the past 3 months; of whom 22% were current smokers. Being a smoker was associated with reduced likelihood of help-seeking (OR 0.44; 95% CI 0.23 to 0.83), even after adjusting for demographic factors (OR 0.46; 95% CI 0.21 to 1.00). CONCLUSIONS: Delay in help-seeking in smokers for a symptom that is potentially indicative of lung cancer is a cause for concern. Future research could usefully address the psychological mechanisms through which help-seeking in smokers is hindered.

What prompts help-seeking for cancer 'alarm' symptoms? A primary care based survey.

BACKGROUND: Encouraging prompt help-seeking for cancer symptoms can help shorten the patient interval and improve timely diagnosis. We explored factors associated with help-seeking in a primary care sample reporting 'alarm' symptoms. METHODS: A questionnaire was mailed to 9771 adults (⩾ 50 years of age and no cancer diagnosis) and 3766 (39%) returned it. Our sample included 1732 adults reporting at least one cancer 'alarm' symptom; with a total of 2726 symptoms. Respondents completed questions relating to help-seeking, demographic and symptom characteristics (e.g., type, knowledge, concern, interference and attribution). RESULTS: Over a third of people who reported a cancer 'alarm' symptom in the past 3 months had not sought help from a doctor. An unexplained lump (odds ratio (OR) 2.46, 1.42-4.26) and persistent unexplained pain (OR 1.79, 1.19-2.69) were associated with increased likelihood of help-seeking. Symptom concern (OR 3.10, 2.19-4.39) and interference (OR 3.06, 2.15-4.36) were associated with an increased likelihood of seeking help independently of symptom type. People who were not working (OR 1.41, 1.09-1.83), were married/cohabiting rather than single (OR 1.38, 1.10-1.74) and were older (60-69 years) rather than younger (50-59 years; OR 1.33, 1.02-1.75) were more likely to have sought help. CONCLUSIONS: Our findings highlighted symptom type and symptom characteristics as key drivers of help-seeking. We also found that there may be specific demographic groups where encouraging help-seeking might be warranted.

Emotional responses to the experience of cancer 'alarm' symptoms.

OBJECTIVE: To qualitatively explore associations between emotional responses to experience of cancer 'alarm' symptoms and help-seeking in a community sample of adults. METHOD: Interviewees (n = 62) were recruited from a community sample (n = 2042) of adults aged ≥50 years, who had completed a health survey that included a list of cancer alarm symptoms. Participants who had reported an alarm symptom both at baseline and 3-month follow-up (n = 271), and who had consented to contact (n = 215), constituted the pool for invitations to interview. RESULTS: Over a third of participants (37%) described an emotional response to their symptom experience. In all these cases, there was evidence of awareness of the risk of cancer. Emotional responses were usually either classified as mild ('worry') or severe ('fear'). Worry was often described in the context of a desire to seek medical help, either to rule out cancer or to minimise patient delay. In contrast, the 'fear' group described associations with death, the perceived incurability of cancer, and the consequence of a cancer diagnosis. Where the emotional reaction was fear, medical contact was seen as something to be avoided either because it had no value or because it was preferable not to be told a diagnosis. CONCLUSION: In this community sample, worry about the possibility of cancer was associated with help-seeking, either for reassurance or as part of a 'sensible' strategy to deal with the risk. In contrast, fear was associated with avoiding help-seeking or even thinking about cancer, which could lead to prolonged help-seeking intervals.

Women's interpretation of and responses to potential gynaecological cancer symptoms: a qualitative interview study.

OBJECTIVE: To explore women's experiences of symptoms potentially indicative of gynaecological cancer in a community-based sample without imposing a cancer perspective. DESIGN: A qualitative interview study with thematic analysis of transcripts. PARTICIPANTS: 26 women aged ≥30 years, who had experienced a symptom that might indicate gynaecological cancer in the past 3 months, were recruited using a screening questionnaire distributed online and in community settings. SETTING: London, UK. RESULTS: Women attributed gynaecological symptoms to existing illnesses/conditions or considered themselves to be predisposed to them, either through their 'genes' or previous personal experience. Normalising symptoms by attributing them to demographic characteristics (eg, age, sex) was common, as was considering them a side effect of hormonal contraception. When women raised cancer as a possible cause, they often dismissed it as unlikely. Responses to symptoms included self-management (eg, self-medicating, making lifestyle changes), adopting a 'lay system of care', or consulting a healthcare professional. Triggers to help-seeking included persistent, painful or debilitating symptoms, concern about symptom seriousness, and feeling that help-seeking was legitimised. Barriers to help-seeking included lack of concern, vague symptoms, unusual symptom location, competing time demands, previous negative experiences with the healthcare system, and not wanting to be perceived as a time-waster. CONCLUSIONS: Attributions of symptoms potentially indicative of a gynaecological cancer were varied, but most often involved women fitting symptoms into their expectations of what was 'normal'. Normalising acted as a barrier to seeking help from a healthcare professional, alongside competing time demands and negative attitudes towards help-seeking. These barriers may lead to later diagnosis and poorer cancer survival. Our findings could be used to inform the development of interventions to encourage appropriate help-seeking.

Applying symptom appraisal models to understand sociodemographic differences in responses to possible cancer symptoms: a research agenda.

BACKGROUND: Sociodemographic inequalities in the stage of diagnosis and cancer survival may be partly due to differences in the appraisal interval (time from noticing a bodily change to perceiving a reason to discuss symptoms with a health-care professional). A number of symptom appraisal models have been developed describing the psychological factors that underlie how people make sense of symptoms, although none explicitly focus on sociodemographic characteristics. METHODS: We therefore conducted a conceptual review synthesising all symptom appraisal models, and focus on potential links with sociodemographics that could be the focus of future research. RESULTS: Common psychological elements across nine symptom appraisal models included knowledge, attention, expectation and identity, all of which could be sensitive to sociodemographic factors. For example, lower socioeconomic status (SES), male sex and older age are associated with lower health literacy generally and lower cancer symptom knowledge. Limited attentional resources, lower expectations about health and lack of social support also hamper symptom interpretation, and would be likely to be more prevalent in those from lower SES backgrounds. Symptom heuristics ('rules of thumb') may lead to symptoms being normalised because they are common within the social network, potentially disadvantaging older populations. CONCLUSIONS: A better understanding of the processes through which people interpret their symptoms, and the way these processes differ by sociodemographic factors, could help guide the development of interventions with the aim of reducing inequalities in cancer outcomes.

A survey study of women's responses to information about overdiagnosis in breast cancer screening in Britain.

BACKGROUND: There is concern about public understanding of overdiagnosis in breast cancer screening, and uncertainty about the likely impact on screening participation. METHODS: In a population-based survey of 2272 women, we assessed understanding of overdiagnosis and screening intentions before and after exposure to an explanation of overdiagnosis, and one of the three information formats providing an estimate of the rate of overdiagnosis based on the findings of the UK Independent Review. RESULTS: Subjective and objective comprehension of overdiagnosis was moderate across information formats (64% and 57%, respectively). Following overdiagnosis information, 7% of women showed a decrease in screening intention, with a stronger effect among women below screening age (<47 years), and receiving the estimate of the rate of overdiagnosis in a simple ratio format (one life saved to three overdiagnoses). CONCLUSIONS: Brief written information on overdiagnosis was incompletely understood, but reduced breast screening intentions in a proportion of women, regardless of comprehension. Subjective comprehension was lower among women who had not yet reached screening age but the deterrent effect was higher.

Do the British public recognise differences in survival between three common cancers?

BACKGROUND: The recognition that cancer is not a single entity, rather that different cancers have different causes and trajectories, has been a key development in the scientific understanding of cancer. However, little is known about the British public's awareness of differences between cancers. This study examined differences in perceived survivability for three common cancers with widely disparate survival rates (breast, colorectal and lung). METHOD: In a population-based survey, using home interviews (N=2018), respondents answered a quantitative (numeric) question on 5-year survival and a qualitative (non-numeric) question on curability, for each of the three cancers. RESULTS: British adults correctly recognised that 5-year survival for breast cancer was higher than for colorectal cancer (CRC), which in turn was recognised to be higher than for lung cancer. Similarly, curability was perceived to be higher for breast than CRC, and both were perceived to be more curable than lung cancer. Awareness of survival differences did not vary by sex, age or socioeconomic status. In terms of absolute values, there was a tendency to underestimate breast cancer survival and overestimate lung cancer survival. CONCLUSION: The British public appear to be aware that not all cancers are equally fatal.

Psychosocial determinants of socioeconomic inequalities in cancer screening participation: a conceptual framework.

Cancer screening participation shows a strong, graded association with socioeconomic status (SES) not only in countries such as the United States, where insurance status can be a barrier for lower income groups, but also in the United Kingdom, where the National Health Service provides all health care to residents, including screening, for free. Traditionally, the literature on socioeconomic inequalities has focused on upstream factors, but more proximal (downstream) influences on screening participation also need to be examined, particularly those that address the graded nature of the association rather than focusing specifically on underserved groups. This review offers a framework that links some of the components and corollaries of SES (life stress, educational opportunities, illness experience) to known psychosocial determinants of screening uptake (beliefs about the value of early detection, fatalistic beliefs about cancer, self-efficacy). The aim is to explain why individuals from lower SES backgrounds perceive cancer screening tests as more threatening, more difficult to accomplish, and less beneficial. A better understanding of the mechanisms through which lower SES causes negative attitudes toward screening could facilitate the development of intervention strategies to reduce screening inequalities.

Do social norms affect intended food choice?

OBJECTIVE: To evaluate the effect of social norms on intended fruit and vegetable intake. METHODS: A two-stage design to i) compare the perceived importance of normative influences vs cost and health on dietary choices, and ii) test the prediction that providing information on social norms will increase intended fruit and vegetable consumption in an experimental study. Home-based interviews (N=1083; 46% men, 54% women) were carried out as part of the Office for National Statistics Omnibus Survey in November 2008. RESULTS: The public's perception of the importance of social norms was lower (M=2.1) than the perceived importance of cost (M=2.7) or health (M=3.4) (all p's<0.001) on a scale from 1 (not at all important) to 4 (very important). In contrast, results from the experimental study showed that intentions to eat fruit and vegetables were positively influenced by normative information (p=0.011) in men but not by health or cost information; none of the interventions affected women's intentions. CONCLUSIONS: People have little awareness of the influence of social norms but normative information can have a demonstrable impact on dietary intentions. Health promotion might profit from emphasising how many people are attempting to adopt healthy lifestyles rather than how many have poor diets.

Food sensitivity in attention deficit disorder with hyperactivity (ADD/HA): a procedure for differential diagnosis.

A diagnostic procedure developed for adults and children which includes a week-long fast nutritionally supported with a chemically defined diet was applied to a pilot group of children having ADD/HA syndrome. A probable etiology of food hypersensitivity was shown for a majority of the panel with several standard subjective tests. Three neurological tests, one of which was of the corpus callosum, were evaluated as objective measurements of ADD/HA. Management procedures are not discussed. A follow-up at one year showed substantial continuing control for many of the subjects. It is suggested that this type of general diagnostic procedure be employed to indicate for treatment those having food sensitivity as the primary etiology.