Health literacy and the perception of risk in a breast cancer family history clinic

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ScienceDirect The Surgeon, Journal of the Royal Colleges of Surgeons of Edinburgh and Ireland www.thesurgeon.net

Health literacy and the perception of risk in a breast cancer family history clinic*,** E.J. Rutherford a,c, J. Kelly a, E.A. Lehane b, V. Livingstone a, B. Cotter a, A. Butt a, M.J. O'Sullivan a, F. O Connell a, H.P. Redmond a,c, M.A. Corrigan a,* a

Cork Breast Research Centre, Cork University Hospital, Cork, Ireland Catherine McAuley School of Nursing and Midwifery, University College Cork, Cork, Ireland c School of Medicine, University College Cork, Cork, Ireland b

article info

abstract

Article history:

Background: Informed consent is an essential component of medical practice, and espe-

Received 14 January 2016

cially so in procedural based specialties which entail varying degrees of risk. Breast cancer

Received in revised form

is one of the most common cancers in women, and as such is the focus of extensive

23 May 2016

research and significant media attention. Despite this, considerable misperception exists

Accepted 2 June 2016

regarding the risk of developing breast cancer.

Available online xxx

Aims: This study aims to examine the accuracy of risk perception of women attending a breast cancer family history clinic, and to explore the relationship between risk perception

Keywords:

accuracy and health literacy.

Breast cancer

Methods: A cross-sectional study of women attending a breast cancer family history clinic

Family history

(n ¼ 86) was carried out, consisting of a patient survey and a validated health literacy

BRCA

assessment. Patients’ perception of personal and population breast cancer risk was

Health literacy

compared to actual risk as calculated by a validated risk assessment tool.

Risk assessment

Results: Significant discordance between real and perceived risks was observed. The ma-

Informed consent

jority (83.7%) of women overestimated their personal lifetime risk of developing breast

Patient education

cancer, as well as that of other women of the same age (89.5%). Health literacy was considered potentially inadequate in 37.2% of patients; there was a correlation between low health literacy and increased risk perception inaccuracy across both personal ten-year (rs ¼ 0.224, p ¼ 0.039) and general ten-year population estimations. (rs ¼ 0.267, p ¼ 0.013). Conclusion: Inaccuracy in risk perception is highly prevalent in women attending a breast cancer family history clinic. Health literacy inadequacy is significantly associated with this inaccuracy. © 2016 Royal College of Surgeons of Edinburgh (Scottish charity number SC005317) and Royal College of Surgeons in Ireland. Published by Elsevier Ltd. All rights reserved.

* Poster presentation at the European Breast Cancer Conference March 2016 Amsterdam http://www.ecco-org.eu/Events/EBCC10/ Abstract-search?abstractid¼24260. ** Abstract previously presented at SARS conference, Durham, UK 2015 (Oral Presentation 2C Breast Surgery) and as a poster at the EBCC Amsterdam 2016. * Corresponding author. Department of Academic Surgery, Cork University Hospital, Wilton, Cork, Ireland. E-mail address: [email protected] (M.A. Corrigan). http://dx.doi.org/10.1016/j.surge.2016.06.003 1479-666X/© 2016 Royal College of Surgeons of Edinburgh (Scottish charity number SC005317) and Royal College of Surgeons in Ireland. Published by Elsevier Ltd. All rights reserved.

Please cite this article in press as: Rutherford EJ, et al., Health literacy and the perception of risk in a breast cancer family history clinic, The Surgeon (2016), http://dx.doi.org/10.1016/j.surge.2016.06.003

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Introduction and literature review Maximising patient understanding and the timely delivery of informed consent are both critical factors in modern medical practice. However, patients may over or under-estimate disease risk, with implications for compliance, consent and public health initiatives.1e3 As the medical profession moves from a paternalistic model of practice to an increasingly patient-led model, an appreciation of factors underlying patient comprehension is increasingly important. Understanding patient perception of risk may enable healthcare professionals of all disciplines to optimize perception accuracy and gain truly informed consent within a clinical setting where time and resources are finite. This concept is illustrated here in the field of breast surgery for a number of reasons, although it may be extrapolated to other surgical specialties. The incidence of breast cancer amongst our ageing population is significant, with one in eight women living to old age developing breast cancer, and one in thirty-six women dying of breast cancer.4 In addition, the concept of risk-reducing surgery for highrisk patients has gained considerable traction in the field, with high profile cases in recent years capturing public attention.5 A similar case may be made in the case of elective colorectal surgeries for both hereditary conditions (Lynch syndrome, Familial Adenomatous Polyposis) and chronic inflammation (Ulcerative Colitis). Given the significant morbidity and potential mortality that can be associated with these procedures the perception of disease risk must be accurate in order to empower patients and facilitate informed consent. Furthermore, an overestimation of risk carries implications for mental health and psychological well being. It has previously been demonstrated that a perception of high risk of breast cancer correlates strongly with breast cancer associated worry.6 Metcalfe7 assessed 205 women who had a sister newly diagnosed with breast cancer. Using the Impact of Events Scale, cancer related distress and perception of risk were recorded. Half of the women scored in the moderate or severe distress range; the most significant predictor of cancerrelated distress was perceived lifetime breast cancer risk. Finally, there exists a finite amount of medical resources. The overestimation of risk may potentially lead to excessive screening behaviour and unnecessary engagement with specialist services, a concept which may be readily appreciated in any healthcare setting. Haber et al.8 found that patients who had a family history in a first degree relative had an increased personal risk perception. This study was conducted in a large cohort, none of whom had a personal history of cancer. It also used screening behaviour as a marker; showing that having a maternal history of breast cancer increased mammography by 0.5 mammograms over 6 years in comparison with women who did not have a maternal history of breast cancer. Conversely, underestimation may reduce engagement with primary preventative measures.9 Having recognized the importance of accurate risk perception above, it becomes necessary to examine the factors that may affect this perception. Health literacy is defined by the United States Centres for Disease Control and

Prevention as “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions”.10 The World Health Organization defines health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”11; health literacy is a key component of the WHO initiative on Global Health Promotion. Health literacy is an issue that spans both developing and developed health systems. Evidently challenges to healthcare systems vary enormously depending on context; but the concept of health literacy is broadly applicable, from engagement with infectious disease control measures to primary prevention of chronic non infectious disease in more developed healthcare systems. Indeed the WHO has also identified health literacy as a key area in health policy across the EU.12 A 2012 study noted either inadequate or problematic levels of health literacy in 47% of the population in eight EU states including Ireland.13 As such, health literacy is a topic relevant to all healthcare professionals, particularly as patient engagement, empowerment, and integration into clinical decision-making becomes increasingly important. This importance has also been extensively documented in cancer care. Health literacy has an obvious role in an individual's perception of their own cancer risk, as demonstrated by Brewer et al.,14 in which health literacy was assessed utilising the Rapid Estimate of Adult Literacy in Medicine (REALM) tool. Respondents were breast cancer survivors deemed to have either “high” or “low” levels of health literacy, and their risk perception of cancer recurrence was subsequently assessed. Risk perception was less accurate in the “low literacy” group, although the use of a dichotomous measure of literacy poses some methodological issues. In a wider context, a 2011 meta-analysis found that low health literacy was associated with poorer health outcomes and suboptimal utilisation of healthcare resources.15 Several other factors may influence a patient's view of risk. It can be easily understood that a positive family history could skew a patient's perception of risk, as was evident in a US cohort16 in which 92% percent of women with a close friend or family member with breast cancer (vs 77% of those without) felt women should continue to undergo annual mammography in their forties, in contravention of the established US guidelines. Thus, we see that risk perception is formed in a socio-cultural and personal context. Furthermore, this miscalculation can lead to excessive screening behaviours and demand for specialist services. Not only is this practice suboptimal for patients, but it can be a considerable drain on resources for health systems. As part of the same study16 the power of media in patient risk perception was demonstrated. Attitudes to screening and risk perception were examined by asking one group of patients to read a “pro-screening” article and the other a “less screening” article. Of those who read the “pro-screening article” 93% felt that women in their 40s should have an annual mammogram; amongst those who were randomized to the “less screening” article this figure was 83%. This demonstrates that media influences may shape patient attitudes to risk; conversely however it also illustrates the potential of

Please cite this article in press as: Rutherford EJ, et al., Health literacy and the perception of risk in a breast cancer family history clinic, The Surgeon (2016), http://dx.doi.org/10.1016/j.surge.2016.06.003

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media to disseminate clear, factual information to help improve accuracy of risk perception. The aim of this study was to explore risk perception accuracy in women attending a breast cancer family history clinic in a specialist breast unit in a university teaching hospital. Secondary objectives included assessing health literacy and other pertinent factors that could explain any inaccuracies in patients’ risk perception, with a view to improving future clinical practice.

Methodology Methods and ethical approval Ethical approval for this study was granted by the local Cork University Hospital based Ethics Committee. Patient information sheets and consent forms were compiled (appendix A). A targeted patient based survey was designed based on previously validated studies17 with written permission obtained from the relevant bodies for their use (appendices B, C). The instrument then underwent content and face validity testing by a panel of five patients and five experts (whose expertise was in either the clinical or research methodology aspects of the topic) as per current best practice.18 (appendix E). An a priori sample size calculation indicated that a sample of 84 patients was required to detect a medium effect (Cohen's r ¼ 0.5)19 between perceived and actual risk, with a power of 80%, a level of significance of 0.05 and a 2-tailed test. This instrument was administered to patients attending a family history breast cancer clinic between April and August 2014 in Cork University Hospital, one of eight designated breast cancer centres in Ireland. Inclusion criteria were any asymptomatic women referred in by their general practitioner for a formal assessment of their breast cancer risk because of their family history of breast cancer. Patient files were used to pre screen for inclusion criteria. Exclusion criteria included a personal history of breast cancer or previous BRCA mutation testing regardless of result, as these patients could already have received extensive genetic counseling. Patient health literacy was also assessed using the Pfizer Newest Vital Sign (“NVS”) tool (appendix D). The tool consisted of an “ice cream label”, which the patient was allowed to refer to throughout the test. Six questions were then asked about the information contained on the “label”, as per the tool protocol. Risk perception accuracy was assessed under four measures: 1) Lifetime risk for the patient (“personal”), 2) Lifetime risk for an average woman of the same age as the patient, 3) 10 year risk for each patient, and 4) 10 year risk for the average woman of the same age as the patient.

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between these two scores (total percentage inaccuracy) in each category are the figures analysed below. Other known risk factors for breast cancer such as parity,21 age at menarche,22 and family history details were also recorded.

Statistical methods Categorical data was described numerically using frequency (percentage) and graphically using bar charts. Continuous data was described numerically using mean (standard deviation, SD), minimum and maximum and median (interquartile range, IQR), as appropriate and graphically using histograms. Differences between perceived and actual risk were investigated using paired t-tests. Spearman's correlation coefficients were used to explore associations between health literacy and risk inaccuracy. Differences in risk inaccuracy between new patients and follow-up patients were investigated using independent samples t-tests. For all analysis, the tests were two-sided and a p-value < 0.05 was considered to be statistically significant. Statistical analysis was performed using Stata Version 13 (Stata Corp., Texas, USA), and IBM SPSS Version 20 (IBM Corp., New York, USA).

Results Demographics & clinical variables Uptake of the study was almost universal, with one patient declining to complete the study after starting, citing stress. A total of 86 participants were included in this study. Of note, the demographics of the high-risk family history clinic are different to the profile of breast cancer patients in the general population-for example, most breast cancers occur in postmenopausal women; however the majority of clinic users (74.7%) were pre menopausal, with 6.0% peri-menopausal and 19.3% post menopausal.

Health literacy Considerable problems with health literacy were observed, both in the NVS Health Literacy scores and in patients’ understanding of concepts such as scales and percentages. Scores were subsequently recoded and interpreted according to the validated measures23 in the following categories: A score of 0e1 indicated a high (>50%) likelihood of limited literacy, and accounted for 14% of patients. A score of 2e3 indicated the possibility (<50%) of limited literacy and accounted for 23.3% of patients. A score of 4 or more almost always indicated adequate health literacy. This was the largest category, with 62.8% of patients. Overall, more than a third (37.2%) of patients had possible health literacy limitations.

Family history and clinical pathway For each of these parameters the patients estimated a percentage score (0e100%); an “accurate” score was then obtained from the International Breast Cancer Intervention System20 (“IBIS”) and the scores compared. The difference

The number of affected relatives was collated for each patient, and it was found that more than 40% of attendees had only one affected relative (41.9%) (Table 1). The median (IQR)

Please cite this article in press as: Rutherford EJ, et al., Health literacy and the perception of risk in a breast cancer family history clinic, The Surgeon (2016), http://dx.doi.org/10.1016/j.surge.2016.06.003

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Table 1 e Clinical and family characteristics of participants, n ¼ 86a. n (%)a Number of first degree relatives with breast cancer 0 19 (22.1) 1 55 (64.0) 2 or more 12 (14.0) Number of second degree relatives with breast cancer 0 33 (38.4) 1 29 (33.7) 2 or more 24 (27.9) Number of third degree relatives with breast cancer (n ¼ 85) 0 78 (91.8) 1 6 (7.1) 2 or more 1 (1.2) Total number of affected relatives 1 36 (41.9) 2 23 (26.7) 3 18 (20.9) 4 or more 9 (10.5) First visit (n ¼ 85) Yes 55 (64.7) No 30 (35.3) Referral pathway (n ¼ 83) GP suggestion 51 (61.4) Patient requested GP 32 (38.6) a

Unless otherwise stated.

number of affected relatives was 2 (1e3), with a range of one to seven. Almost two-thirds (64.7%) of patients were new referrals, and the majority (61.4%) were referred after their GP suggested assessment by the specialist clinic (Table 1).

Risk perception accuracy Numerical measures in risk perception Histograms illustrating the differences between patient's perceived and actual risk for each of the four measures are presented in Fig. 1. The majority of patients overestimated their own risk as well as that of average women of the same age, across all categories. Personal lifetime risk was overestimated in 83.7% of cases, whilst the risk of the average woman of the same age was overestimated in 89.5% of cases. A total of 90.7% of participants overestimated their own tenyear risk, and 100% of participants overestimated the ten year risk of the average woman. Paired t-tests indicated that there was a statistically significant difference between perceived and actual risk for all four measures. Mean differences ranged from 19.1% for personal risk of developing breast cancer in lifetime to 31.42% for average woman's risk of developing breast cancer in next ten years. Absolute differences between perceived and actual risk were also calculated in order to quantify the magnitude of the difference and the results are presented in Table 2. The average inaccuracy in risk perception ranged from 23.7% for personal lifetime risk to 31.4% for average woman's risk in next ten years. However, it is accepted that patients cannot reasonably be expected to estimate exact percentage risks. To this end, a “ballpark” analysis was employed, to ascertain whether patients had a general idea of magnitude of risk. This approach, as used in a breast cancer context by Banegas et al. 2012,24 is of relevance in that it gives a more clinically relevant overview of

Fig. 1 e Percentage difference in perceived and actual risk (perceived risk-actual risk). Please cite this article in press as: Rutherford EJ, et al., Health literacy and the perception of risk in a breast cancer family history clinic, The Surgeon (2016), http://dx.doi.org/10.1016/j.surge.2016.06.003

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Table 2 e Summary statistics for percentage inaccuracy, n ¼ 86.

Table 3 e Spearman's rank correlations between health literacy and risk perception inaccuracy, n ¼ 86*.

Mean (SD) Personal risk of developing breast cancer In lifetime 23.67 (13.38) In the next 10 years 29.65 (21.65) Average woman's risk of developing breast cancer In lifetime 27.16 (17.39) In the next 10 years 31.42 (18.99)

the general scale of misperceptions amongst patients. However, even allowing a margin of error of ± 10%, the majority (67e81%) of patients still displayed significant misperception of risk when both under and over estimations are considered (Fig. 2).

Factors associated with risk inaccuracy Health literacy and risk perception inaccuracy Table 3 presents Spearman's rank correlation coefficients between health literacy (3 categories: higher category represents better health literacy) and risk perception inaccuracy (higher score represents greater inaccuracy). For three of the four measures of risk perception (all except personal lifetime risk), there were negative, small and statistically significant associations between health literacy and risk perception inaccuracy, indicating that as health literacy increased, inaccuracy decreased.

Clinic attendance As described previously, 64.7% of patients were new referrals, with 35.3% attending follow-up appointments. Risk perception inaccuracy was described and compared for both groups across the four measures of risk perception inaccuracy. These results show that across the range of risk parameters, follow up patients also had considerable risk misperception. Although follow up patients displayed an improvement of 2e4% in risk accuracy, these differences were not statistically significant (p ¼ 0.185 to 0.726). Furthermore, mean inaccuracy scores remained high for each category-between 21 and 30%.

r Personal risk of developing breast cancer In lifetime 0.045 In the next ten years 0.224 Average woman's risk of developing breast cancer In lifetime 0.221 In the next ten years 0.267 Risk of carrying the BRCA mutation Population 0.348 Personal 0.109

p value 0.678 0.039 0.041 0.013 0.001 0.33

Discussion and conclusion As outlined above, there exists a considerable misperception of breast cancer risk amongst this cohort. Our findings suggest that overestimation is highly prevalent in this high risk population; moreover, the scale of this inaccuracy is considerable, with mean percentage inaccuracies ranging from 19.1 to 31.4% according to measure. Perceptions of BRCA mutation population prevalence and personal risk of mutation carriage were also highly inaccurate. Of particular interest was the fact that although women consistently overestimated their own breast cancer risk, they also overestimated that of “the average woman of the same age”. Similarly, women overestimated both their own risk of BRCA mutation carriage and the prevalence of mutation in the general population. It is possible that there is a global misperception of breast cancer risk, in both high-risk and general populations. Further study in this specific area is warranted; future directions could also include the perception of risk with regards to other cancers and life limiting conditions. Significant correlations were also observed between health literacy and risk perception accuracy, as outlined above. From these findings, it is clear that health literacy plays an important role in patient risk perception. It is of concern that more than one-third of patients in this study cohort had documented possible or highly probable health literacy limitations,

Fig. 2 e Accuracy of participants perception of risk ±10%. Please cite this article in press as: Rutherford EJ, et al., Health literacy and the perception of risk in a breast cancer family history clinic, The Surgeon (2016), http://dx.doi.org/10.1016/j.surge.2016.06.003

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as is consistent with the literature.13 As might be expected, there was a statistically significant correlation between education level attained and health literacy (r ¼ 0.454; p < 0.01). This being the case, it is clear that a “one size fits all” approach to patient education and involvement in decision making is not appropriate. Therefore, tailoring specific treatment to specific patients is required. The majority of these patients (61.4%) attended at the suggestion of their general practitioner, with the remainder requesting a referral from their GP. An analysis of referral pathways is outside of the scope of this article; however future study could explore the possible role of GPs and practice nurses in disseminating patient education in a manner appropriate to patient education level and the condition in question. This concept is particularly important in light of the poor rate of information retention between specialist appointments. Approximately two-thirds of patients were attending clinic for the first time (64.7% new patients versus 35.3% follow-up). In this study, we have demonstrated that repeated out-patient clinic attendance, whilst reducing inaccuracy of risk perception, it was not overall effective as a means of educating patients regarding their own risk and that of the general population. This reduction in risk perception inaccuracy is small, statistically insignificant, and absolute inaccuracy remains large, (~20e30%), depending on the modality of measurement used therein. It had been hypothesized that a positive family history would influence patients' perception of risk. Furthermore, it was posited that the number of relatives would also influence this perception. However, there was no significant effect of number of relatives on risk perception in this study. Although other studies have found that a positive family history can increase risk perception,7 in this cohort, health literacy was a better predictor of risk perception accuracy. However, on an individual basis, we did not take into account the severity or outcome of the cases recorded. Whether the affected relative was successfully treated with conservative surgery, or whether they died at a young age of metastatic disease was not recorded. This individual case severity and outcome, as well as family dynamics and burden of disease may influence risk perception. In a Hastings Centre report on informed consent in the context of breast cancer,25 it was found that patients’ personal history, context and background assumptions influenced the way they understood factual information. New information tended to be incorporated into a pre-existing framework of beliefs and knowledge. Again, this wider context was outside the scope of this study; nonetheless it is accepted that these complex factors may have influenced risk perception in this cohort. An acknowledgement of the complex nature of patient risk perception is essential in any discussion of this area. There are some other limitations in this study. First, although statistically powered, this cohort represents a relatively small sample size, in a single surgical specialty. This reflects the stringent exclusion criteria limiting the available pool of patients. However, the uptake from eligible participants was high. Cork University Hospital is one of eight national clinical breast cancer centres, and future studies could incorporate a wider range of patients from other centres as well as other disciplines.

It is also possible that the unfamiliar atmosphere of the hospital clinic may have caused some patients to perform poorly in their health literacy assessment. We aimed to minimize this anxiety by conducting the study in a separate room and patients were allowed as much time as necessary to complete the surveys. Nonetheless it is clear that cancer is, for many patients, a frightening and emotive topic. Although the Pfizer NVS test is a well-recognised and useful tool, the use of three broad categorical levels of health literacy may not fully reflect the complex multi faceted nature of health literacy. Further academic research could plausibly assess individual components (prose literacy, numeracy, abstract reasoning etc). However for quick assessment in the clinical setting it remains a helpful indicator to clinicians; the authors recognize that clinic resources may already be under considerable pressure. In conclusion, risk misperception is high amongst those attending a breast cancer family history clinic. As discussed above, inaccuracies in risk perception can have the potential to inflict significant distress on patients and excessive demands on specialist services. Low health literacy is predictive of risk misperception. A clearer understanding of how best to inform and engage patients with all levels of health literacy has evident benefits at both individual and wider health systems levels. Recognising the prevalence of health literacy issues is a key first step in improving patient communication and promoting health in clinical practice. This is especially true in complex care, riskbenefit analysis, and patient decision making. As medicine transitions to an increasingly patient-centred model, clinicians must take into account factors which empower patients to give truly informed consent.

Acknowledgements Financially supported by ACT (Aid Cancer Treatment) Cork, Ireland.

Appendix A. Supplementary data Supplementary data related to this article can be found at http://dx.doi.org/10.1016/j.surge.2016.06.003.

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