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Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic

Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign doi: 10.1054/ bjoc.2000.1651, available online at http://www.idealibrary.com on http://www.bjcancer.com Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic 1 1 1 2 A Cull , A Fry , R Rush and CM Steel 1 2 Psychology Research Group, Imperial Cancer Research Fund (ICRF) Medical Oncology Unit, Western General Hospital, Edinburgh EH4 2XU; School of Biological and Medical Sciences, University of St Andrews, Bute Medical Building, St Andrews, Fife KY16 9TS, UK Summary Of 230 women referred to a familial ovarian cancer clinic, 196 (85%) completed a questionnaire before they attended. The data collected included pre-counselling risk perceptions and an assessment of distress. Respondents were more likely to underestimate (44%) than overestimate (19%) their risk. Those with a family history of breast and ovarian cancer (HBOC) were particularly likely to underestimate their ovarian cancer risk. The variables assessed in this study – sociodemographic, family history, distress, anxiety proneness, coping style and beliefs about health control – explained little of the observed variation in accuracy of risk perception. On the General Health Questionnaire (GHQ- 30) 30% of the sample obtained scores above the cut-off (³ 6) recommended for screening for ‘case-level’ psychological distress. Women exhibiting case-level distress were more likely to overestimate their risk (OR = 2.3). On univariate analysis low internal locus of control was associated with ‘case-level’ distress (P = 0.008). On multiple regression the best predictors of ‘caseness’ were high-trait anxiety, being a graduate and inaccurate risk perception. There was no difference in the level of distress shown by women with HBOC vs. those with a history of ovarian cancer only. Implications of these findings for the counselling needs of the women are discussed. The effectiveness of the clinic in improving the accuracy of risk perceptions and relieving distress is being assessed. © 2001 Cancer Research Campaign http://www.bjcancer.com Keywords: ovarian cancer; psychological distress; cancer risk; genetic counselling A growing number of clinics has been set up to offer genetic coun- breast cancer, no screening method for ovarian cancer has yet been selling to individuals whose family history of cancer suggests shown to be effective in early detection or in reducing mortality. inherited susceptibility which puts them at increased risk of devel- Prophylactic oophorectomy, with its attendant side-effects and oping cancer, often at a relatively early age. The services offered unproven efficacy, is probably the most effective means of by these clinics need to be adequately evaluated with respect to reducing the risk of death from ovarian cancer currently available both medical and psychosocial outcomes to inform future practice. to women at increased risk. It is not clear whether the risk The establishment of a specialist ovarian cancer family clinic in of psychological morbidity is greater for women at increased SE Scotland (Mackay et al, 1995) provided a unique opportunity risk of developing cancer at more than one body site. to assess the psychological impact on the women attending. We When the present study was planned there were scant published had begun assessing the knowledge, attitudes, emotional and data about the psychological responses of women with ovarian behavioural responses of women attending a familial breast cancer cancer risk. The available data need to be interpreted with attention clinic (Cull et al, 1999). We therefore sought to collect comparable to how the samples were derived. In the US high levels of psycho- data in this setting. logical distress among first degree relatives (FDRs) of ovarian The lifetime risk of developing ovarian cancer for women in the cancer patients were associated with their own increased risk as well general population in Scotland is 1 in 75 (1.3%). For women with as in reaction to their relative’s illness (Daly and Lerman, 1993). In one affected relative the risk is of the order of 3–4% and may be as the UK women who volunteered early for a familial ovarian cancer high as 40% for a woman with two or more affected relatives register were well informed about ovarian cancer, uncertain about (Jacobs and Lancaster, 1996). The highly penetrant BRCA1 gene is genetic issues but not particularly anxious (Green et al, 1993). thought to account for 5% of ovarian cancers among women under Wardle (1995) assessed two groups of respondents (with/without a the age of 70 (Stratton et al, 1997). This proportion may be higher FDR with ovarian cancer) to a national (UK) advertisement for among young women (Ford et al, 1995). Other less penetrant participants for a study of ovarian cancer screening. Both these self- genes are also thought to be implicated but there is less evidence selected groups had higher perceptions of their personal risk of available about the proportion of cases which can be attributed to ovarian cancer and higher levels of cancer worry than general popu- these genes. Although in some families the inherited predisposi- lation controls. In Canada, among women assessed after attending a tion appears to be specific to ovarian cancer, the most common familial ovarian cancer clinic, half correctly reported their risk (as clinical pattern is in association with breast cancer. high/moderate/low), 26% overestimated and 17% minimized their There is a lack of evidence about how best to manage women risk (Robinson et al, 1997). The minimizers were significantly less with a family history of ovarian cancer. In contrast to screening for distressed than the accurate or over-estimators, of whom 40% were significantly depressed and 20% were highly anxious. Received 4 April 2000 A variety of personal characteristics have been implicated in medi- Revised 5 December 2000 ating the relationship between perceived threat to health, distress and Accepted 5 December 2000 health protective behaviours. A tendency to seek out information about threat – ‘monitoring’ (Miller, 1987) – was associated with a Correspondence to: A Cull 594 Cancer risk perceptions and distress 595 Table 1 Criteria for referral to familial ovarian cancer clinic at the time of this to be a) the risk for a woman in the general population and b) study (Mackay et al, 1995) their own lifetime risk of developing ovarian cancer (adapted from Evans et al, 1993, 1994). They were also asked to rate their Any woman who has : personal susceptibility to developing ovarian cancer: not very/ · ³ 1 first degree relative with epithelial ovarian cancer under 55 years moderately/very susceptible. of age · ³ 1 first degree relative with both breast and epithelial ovarian cancer at any age Psychological distress · 1 first degree relative with epithelial ovarian cancer at any age and The General Health Questionnaire (GHQ-30) with a cut-off score ³ 1 additional first or second degree relative with breast or ovarian cancer · an actual or perceived family history of cancer causing undue anxiety of ³ 6, was used to screen for clinically significant levels of psychological distress and dysfunction. Published data from the In this context a first degree relative is a mother, sister or daughter and a general population are available for comparison (Goldberg and second degree relative is grandmother, aunt or first cousin. Williams, 1988). higher perceived risk of ovarian cancer, more intrusive thoughts Psychological characteristics about cancer and higher levels of distress in women with a FDR with ovarian cancer (Schwartz et al, 1995) and with a higher level of Anxiety proneness cancer worry among screening attenders (Wardle, 1995). Beliefs The Spielberger State-Trait Anxiety Inventory (STAI) (Spiel- about the controllability of one’s health in the face of inherited berger, 1983) was used to measure anxiety proneness (trait susceptibility to cancer may also influence psychological adjustment. anxiety). Knight et al (1983) collected STAI data from a general Among women with an FDR with breast and/or ovarian cancer, those population sample in an area of New Zealand with a strong history with high-risk perceptions and low levels of perceived control were of immigration from Scotland. The STAI trait anxiety scores most vulnerable to distress (Audrain et al, 1997). which they present by age (in 10-year bands) and sex offer more Our ovarian cancer family clinic is multidisciplinary and based appropriate reference data for this study than those in the STAI in a ‘Well Woman Clinic’ in the community (Mackay et al, 1995). manual which are derived from employees in the US Federal Patients were typically referred by their general practitioner Aviation Administration. according to criteria based on their family history (Table 1). A significant proportion were referred from the familial breast cancer Beliefs about control of health clinic. This study was designed to address the following questions: The Health-related Locus of Control Scale (Wallston and Wallston, 1978) was used to assess the extent to which the women 1. What were the characteristics of women who presented at the attributed their health to internal (i.e. own behaviour), external clinic? In particular did they overestimate their risk and were (e.g. doctors) or chance factors. The 9 items with the highest item- they highly distressed? subscale correlations were selected (Marks et al, 1986). This short 2. Did women with a family history of breast and ovarian cancer form allowed the role of locus of control to be explored while (HBOC) perceive their risk as greater and were they more keeping the burden on respondents to a minimum. distressed than women with a history of ovarian cancer (HOC) only? Coping style 3. Can we predict women’s presenting risk perceptions and levels The Miller Behavioural Style Scale (Miller, 1987) was designed to of distress from their sociodemographic details, family history assess the propensity of people to seek out (‘monitor’) or avoid or psychological characteristics? (‘blunt’) information about threatening events. The short form presents 2 scenarios (Steptoe, 1989) to which respondents select SAMPLE their most likely reaction from a fixed choice of ‘monitoring’ and ‘blunting’ responses. A consecutive series of 230 women, with a family history of ovarian cancer, newly referred for counselling about their risk PROCEDURE of developing ovarian cancer were eligible to take part in the study. Data were collected between June 1994 and December 1998. Referred women were sent a family information sheet to complete and return by post. The family history given was verified and MEASURES extended by reference to other sources e.g. cancer registry, hospital records etc. The woman’s risk of ovarian cancer was estim- Sociodemographic and family history characteristics ated before a clinic appointment was offered. The assessment The following data were recorded: age; marital status (married/ package for this study was posted to women with their clinic living with partner vs not); children (yes/no); daughters (yes/no); appointment and returned when they attended the clinic. A geneti- educational attainment (university level/less than university); cist counselled women about their family history. Women at low family history (history of ovarian cancer – HOC vs. history of risk were discharged from follow-up. Women at increased risk breast and ovarian cancer – HBOC). (> 3% lifetime risk) were seen by a gynaecologist and offered surveillance by clinical examination, Ca 125 testing and pelvic ultrasound (by separate appointment) to screen for ovarian cancer. Risk estimate At the time of this study genetic testing was not available to the Women were asked to select from 10 categories the response (e.g. women attending this clinic. For women at high risk (>5% life- inevitable, 1 in 2... <1 in 200, very unlikely) which they believed time risk), the geneticist rehearsed the issues in genetic testing © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599 596 A Cull et al and the gynaecologist discussed prophylactic surgery as a risk management option. For the purposes of this study a consultant geneticist reviewed all the casenotes. The women were cat- egorized as being at high, moderate or low risk on the basis of their age and family history. STATISTICAL ANALYSIS Descriptive statistics were generated to describe the study popula- 6 tion. The associations between explanatory variables and ordered groups of risk estimates (very/moderately/not very susceptible; high/moderate/low risk) were examined using the non-parametric <1 in 200 1 in 200 1 in 100 1 in 50 1 in 20 1 in 10 1 in 4 1 in 3 1 in 2 Inevitable trend test (Cuzick, 1985). The chi-square test for trend was used to Self Risk Estimate compare proportions across these ordered groups. The Mann- Figure 1 Distribution of estimates of personal risk of developing ovarian Whitney test was used to compare personal risk estimates for the 2 cancer among women attending ovarian cancer family clinic (N= 185) sub-groups (HOC vs. HBOC). Comparisons between two indepen- dent samples were made using two-sample t-tests. Univariate Table 2 The relationship between women’s estimates of personal analyses were undertaken to explore relationships of accuracy of risk/susceptibility to ovarian cancer and risk category assigned by geneticist personal risk perception and distress with each other and with sociodemographic, family history and personal characteristics. The Personal risk estimate Personal susceptibility – ratio endorsed very mod not very results informed the forward stepwise selection of variables entered into the logistic regression analyses undertaken to construct predic- Risk category tive models of under- and overestimating risk and for ‘case-level’ assigned: distress. The criterion for entering variables into the model was P ² high Range: inevitable – ²1 in 200 23 61 14 N=98 Median= 1 in 10 (24%) (62%) (14%) 0.05 and for removing them P ³ 0.1. The data were analysed using (n=97) the statistical package SPSS for Windows (1999). moderate Range: inevitable – ²1 in 200 9 41 8 N=58 Median = 1in 10 (15%) (71%) (14%) RESULTS (n=55) 230 women were eligible for inclusion in the study. 196 of them low Range: 1in2 – ²1 in 200 2 25 6 N=33 (85%) completed baseline assessments and returned them when Median = 1 in 50 (6%) (76%) (18%) they attended the clinic. 15 women attended the clinic but failed to (n=32) return their baseline assessment and 14 women neither attended the clinic nor completed baseline assessments. As a result of administrative failures 5 women were not contacted. ³ 3 times their estimate for the general population. Surprisingly, 8% (n = 15) set their risk lower than the risk they endorsed for the general population by a factor of ²0.5. Sociodemographic and family history characteristics Participants in this study ranged in age from 21.4 to 69.6 years Personal susceptibility (mean = 42.1 years, SD = 9.8, n = 196). The majority (74%) were Prior to attending the clinic 67% (n = 128/190) rated themselves as married or cohabiting. Of the 75% who had children, 75% had 1 or moderately susceptible to developing ovarian cancer; 34 women more daughters. 40% had received secondary education to age 16; (18%) rated themselves very susceptible and the remaining 28 (15%) 15% to age 18; 17% had had some tertiary education and 28% rated themselves not very susceptible. The use of these verbal descrip- were university graduates. 85 women (44%) also had a family tors was significantly related to the numerical risks endorsed (z = 5.32, history of breast cancer. P < 0.0001). The range of ratios endorsed showed considerable overlap but women who rated themselves ‘very susceptible’ did endorse higher personal risk ratios (median = 1/4, range: inevitable – Risk assessment 1/200) than ‘moderately’ (median = 1/20, range: 1/2 – ²1/200) or ‘not Risk estimate – ratios very’ susceptible women (median = 1/50, range: 1/3 – ²1/200). 184 women each endorsed one of the ratios offered to indicate their estimate of the risk for a woman in the general population of Comparison of personal and professional risk assessments developing ovarian cancer. 36% were in the correct range i.e. 1 in Data were available from the notes of 195 women of whom 102 50–1 in 100; 28% endorsed values ² 1/200; 29% were in the range (52%) were deemed to be at high risk. For 59 (30%) the risk assigned 1/20–1/10; 7% endorsed values ³ 1/4. Of 185 women returning was ‘moderate’ and for the remaining 34 women (17%) the risk was personal risk estimates: 5 (3%) believed it inevitable they would assessed as low. The relationships between risk categories assigned develop ovarian cancer and 20 (11%) set their risk at ²1/200. The by the geneticist and the women’s pre-clinic assessments of their own remaining personal risk estimates showed a bimodal distribution numerical risk and susceptibility are shown in Table 2. between these extremes (Figure 1). Estimates of both general Women whose risk of developing ovarian cancer was judged by population and personal risk were available from 184 women: the geneticist to be low had themselves returned significantly 78% set their own risk at least twice the general population risk lower numerical estimates of their risk than women judged to be whatever they believed that to be and 92 (50%) set their risk at at moderate or high risk (z = 2.05, P = 0.04). There was no British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign % reporting Cancer risk perceptions and distress 597 Table 3 Psychological Characteristics by Accuracy of Risk Estimate Women with HBOC compared with women with HOC There were no significant differences in scores on any of the Underestimators Overestimators measures used. N Mean SD N Mean SD Trait Anxiety 75 39.0 9.2 36 41.1 9.2 Predicting accuracy of initial risk perception Locus of Control: Chance 80 8.0 3.2 35 8.9 3.5 We first conducted univariate analyses to explore the relationships Internal 80 13.5 2.7 35 13.1 2.6 between overestimating the risk (vs. not) then, separately, under- External 80 6.9 3.6 35 7.4 3.4 estimating (vs. not), and the sociodemographic, family history, Coping Style: distress and the psychological variables. Overestimators were Monitoring 79 3.8 1.6 36 3.9 1.8 significantly more likely to have HOC than HBOC (c = 4.5, df = Blunting 79 2.1 1.2 36 1.8 0.9 1, P = 0.03) and to exhibit case-level distress on GHQ (c = 5.0, df = 1, P = 0.03). Underestimators were conversely significantly more likely to have HBOC (c = 13.2, df = 1, P < 0.0005) and less significant association between the risk category assigned by the likely to be GHQ ‘cases’ (c = 4.6, df = 1, P = 0.03). None of geneticist and the women’s own ratings of their susceptibility the other relationships was significant. The mean scores on the (c = 5.58, df = 4, P = 0.23). For 37% of the sample (70/189 psychological measures are given for under- and overestimators women) the risk category to which they were assigned accorded separately in Table 3. with their rating of their susceptibility – ‘accurate estimators’. For Separate multivariate logistic regression analyses were 83 women (44%) – ‘underestimators’ – the risk assigned was conducted to identify independent predictors of over- and under- higher and for 36 of them (19%) – ‘overestimators’ – lower than estimators. The variables considered in these models were those their own prior rating of their susceptibility. found to be associated with over-/under-estimating at the 5% significance level on univariate analyses i.e. GHQ ‘caseness’ and Women with HBOC compared with women with HOC HBOC vs HOC. A forward stepwise selection procedure was used. Prior to attending the clinic there were no significant differences in One variable was significant (P < 0.05) in each model: women personal risk estimates (Mann-Whitney U = 4024.0, P = 0.66) nor in exhibiting ‘case-level’ distress were more likely to overestimate personal susceptibility ratings (c = 2.58, df = 2, P = 0.28) between their risk (OR = 2.33, CI: 1.09–4.99); HBOC women were more these two groups of women. As expected the HBOC women were likely to underestimate their risk (OR = 0.34, CI: 0.19–0.63). assigned a higher risk than the HOC women (c = 15.6, df = 2, P < 0.0005). This implies then that the HBOC women were more likely to underestimate their risk. Among the women who underesti- Predicting ‘case-level’ distress at first presentation mated their risk at baseline, 58% (48 women) had a history of breast Univariate analyses were conducted to determine the factors asso- and ovarian cancer while among the overestimators the proportion ciated with ‘case-level’ GHQ scores. The variables considered was only 28% (10 women). Among 30 HBOC women who had were as for risk perception above. Of the sociodemographic been referred from the familial breast cancer clinic 73% (n = 22) variables only education was significantly related to distress. The underestimated their risk of ovarian cancer. proportion of women exhibiting ‘case-level’ distress was signific- antly higher among university graduates than among the less well Psychological distress educated (c = 10.4, df = 1, P = 0.001). Neither family history nor the women’s ratings of their susceptibility to ovarian cancer were GHQ related to ‘caseness’ but accuracy of risk perception was signific- The mean GHQ score of women attending this clinic was 4.5 ant (c = 6.8, df = 2, P = 0.03). Of the psychological variables trait (SD = 6.4, n = 194). 59 women (30%) scored above the cut-off (5/6) anxiety, chance and internal locus of control were all significantly for screening for ‘case-level’ distress. Women who overestimated related to ‘caseness’. Mean scores for the psychological variables their susceptibility to ovarian cancer had a significantly higher mean for ‘cases’ and ‘not cases’ are given in Table 4. GHQ score (mean = 6.7, sd = 8.3, n = 34) than ‘underestimators’ Women who scored as GHQ ‘cases’ were more anxiety prone (mean = 3.5, SD = 5.4, n = 83; t = 2.46, df = 115, P = 0.02) and a (t = 6.73, df = 183, P < 0.0005), more likely to ascribe control over higher proportion of ‘cases’ (47% vs. 23%, respectively). their health to chance (t = 1.96, df = 189, P = 0.05) and less likely to feel that their health was under their own control (t = 2.67, Women with HBOC compared with women with HOC df = 189, P = 0.008). There were no significant differences in mean GHQ scores Multivariate logistic regression was conducted using the vari- between these sub-groups of women. The proportion of ‘cases’ ables found to be significant (P < 0.05) on univariate analysis with was somewhat lower among HBOC women (26% vs. 34%) but a forward stepwise procedure (Table 5). The category ‘accurate this difference was not statistically significant. estimator’ was used as the reference against which over- and under-estimators were compared. University educated women and Psychological characteristics overestimators are significantly more likely to exhibit ‘case-level’ scores on the GHQ. The model predicts 39% of the variation in For the sample as a whole (n = 187) the mean trait anxiety score was ‘caseness’. 40.1 (SD = 9.0). Mean scores from 192 women were calculated for the health-related locus of control and coping style scales: self DISCUSSION (internal) mean = 13.2 (SD = 2.8); others (external) mean = 7.2 (SD = 3.4); chance mean = 8.2 (SD = 3.2); monitoring mean = 3.7 Ultimately familial cancer clinics aim to reduce cancer mortality and (SD = 1.7) and blunting mean = 1.9 (SD = 1.2). morbidity. They seek to achieve this by identifying and counselling © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599 598 A Cull et al Table 4 Psychological Characteristics by ‘Case-Level’ Distress (GHQ30 values of 1 in 10 and 1 in 50. The majority of women put their own Score >5) risk at least at 2–3 times the risk they endorsed for the general ‘Case’ ‘Non-Case’ population. This suggests they were using concepts of relative risk N Mean SD N Mean SD to make their ratings. The 15 women who set their own risk lower than the risk they assigned for the general population may not have Trait Anxiety 59 45.9 9.5 126 37.3 7.4 understood the meaning of the ratios. These were less well- Locus of Control: educated women, two-thirds of whom had had no formal education Chance 59 8.8 3.2 132 7.9 3.2 after the age of 16 years. Most women described themselves as Internal 59 12.4 2.8 132 13.5 2.7 External 59 7.6 3.2 132 7.0 3.5 ‘moderately susceptible’ to ovarian cancer. The remainder were equally divided between rating themselves ‘very’ and ‘not very’ Coping Style: Monitoring 59 4.0 1.8 131 3.6 1.6 susceptible. Their use of these categories was significantly related Blunting 59 1.9 1.3 131 1.9 1.1 to the ratio that they endorsed to denote personal risk. The means by which risk information was communicated to the women is not asymptomatic, at-risk individuals about cancer prevention and early the subject of this study and we made no assumptions about the detection. They may also have a role in educating and reassuring terms used in the consultation. However awareness of individuals’ those whose risk is not sufficiently elevated to warrant specialist prior estimates of their own risk is likely to be helpful in appropri- surveillance. To be cost-effective these clinics need predominantly to ately tailoring the consultation to meet individual needs. attract people who are at increased risk of cancer. They also need to Risk management at the clinic is operationally based on 3 risk cate- be able to give information, with all its attendant uncertainty, in such gories i.e. high, moderate and low, derived from pedigree analysis and a way that people can use it to make informed health care choices and the woman’s age at the time of the consultation. We felt it was poten- without causing adverse psychological consequences. tially useful to identify whether or not women present with a roughly This study describes the characteristics of women who attended a realistic perception of their own situation. We therefore used these specialist familial ovarian cancer clinic. Referral criteria for this categories as simplistic means of identifying women with under- or clinic had been circulated to GPs and relevant clinics (Mackay et al, over-estimated risk perceptions. These women were not characterized 1995). Hence the majority of women in this study had been referred by exaggerated perceptions of their cancer risk. Like those attending by a doctor and were at at least moderately increased risk of devel- the familial breast clinic (Cull et al, 1999) they were more likely to oping ovarian cancer. Data were not available from the 6% of refer- underestimate their risk. Women with HBOC were more likely to rals who failed to attend. These cannot be regarded as missing at underestimate their risk of ovarian cancer than HOC women. Among random. Our hypothesis is that these women were anxious about those HBOC women referred from the familial breast cancer clinic, their cancer risk and coping by avoidance (‘blunting’). Compliance 73% underestimated their risk of ovarian cancer. To be referred they with the baseline assessment was excellent (93%) among ‘atten- would have had to have had at least one family member affected by ders.’ However the missing data probably also represent a defen- ovarian cancer. Where there was a strong family history of breast sive response from at least a proportion of the non-compliant cancer (e.g. 3 or 4 affected relatives) ovarian cancer may have affected women. Our data need to be interpreted in the light of this potential only a distant relative. Typically these women had been unaware of bias. It should be noted that referral criteria for this clinic are now the presence, or significance, of a family history of ovarian cancer more strict, to conform with those of the UKCCCR National until their history was reviewed at the familial breast clinic. Familial Ovarian Cancer Screening Study (Jacobs et al, 1997). Nonetheless where there was a high probability of a BRCA1/2 muta- In common with observations from other health protection tion in the family the woman’s risk of ovarian cancer would be rela- programmes (Audrain et al, 1995) there was an over-representation tively high. These data suggest a particular need to monitor the impact of well-educated women in our sample. 44% were at increased risk of of counselling on HBOC women who may be at greater risk of both breast and ovarian cancer. 30 (35%) of the HBOC women had becoming distressed with increased awareness of their dual risk. been referred from the breast cancer family clinic. Only 12 of them There were 34 women who were not judged by the geneticist had been included in our study of that clinic (Cull et al, 1999). This to be at sufficiently increased risk to warrant surveillance. They was not considered a sufficiently large proportion of that sample (n = should be discharged from the clinic. The available data (Table 2) 486) to invalidate comparison between that study and this one. show the majority of them feel ‘moderately susceptible’ and two of We were aware of the lack of consensus among professionals them feel ‘very susceptible’ to ovarian cancer. For the sample as a about how best to communicate about risk and the reservations of whole the best predictor of overestimated risk was a ‘case-level’ GHQ Hallowell and Richards (1997) about the meaning of numerical risk score. The danger is that the health care behaviour of these women information to the women concerned. We therefore investigated the will be driven by distress rather than objective risk. The challenge is to women’s use of two response formats, using numbers and words. In counsel them in such a way as to moderate their perception of their this study, the numerical risk ratios endorsed to denote personal risk personal risk and reduce their distress while encouraging appropriate spanned the whole range of response options offered, with modal health care vigilance. The outcome of the clinic in terms of the health Table 5 Logistic regression to predict case-level GHQ Scores (>5) Coefficient S.E. p value (df) Odds ratio (95% confidence intervals) Trait Anxiety 0.15 0.03 0.000 1 1.16 (1.09 – 1.23) University Education 1.70 0.50 0.001 1 5.50 (2.08 – 14.54) Estimators 0.03 2 Underestimators –0.24 0.47 0.60 1 0.78 (0.07 – 0.70) Overestimators 1.27 0.58 0.03 1 3.55 (0.09 – 0.89) Constant –7.59 1.45 0.000 1 0.00 British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign Cancer risk perceptions and distress 599 care behaviour of the distressed overestimators warrants further study. gynaecologists Dr GE Smart and Dr C Busby-Earle. Overall, the variables included in this study explained little of the Several research assistants helped with the collection of data: observed variation in our categorization of accuracy of women’s pre- Hayley Miller, Susie Howat, Tracy Williamson and Amanda Barrie. counselling risk perceptions. The assessment method used in this The work was funded by the Imperial Cancer Research Fund. study was crude but this is an important construct which warrants further exploration. In Wardle’s study (1995) optimism and the REFERENCES number of cancer deaths affecting family and friends predicted risk Audrain J, Schwartz MD, Lerman C et al (1997) Psychological distress among women seeking genetic counselling for breast–ovarian cancer risk: the estimates. We have reported (Rees et al, in press) theoretical grounds contribution of personality and appraisal. Ann Behav Med 19(4): 370–377 for believing that a number of dimensions of personal experience of Cox B, Blaxter M, Buckle A et al (1987) The Health and Lifestyle Survey. cancer may be important influences on personal risk perception. 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Long term psychosocial adjustment to Other aspects of personal experience of cancer in the family e.g. prophylactic oophorectomy in women at increased risk of ovarian cancer. recent diagnosis, close identification with the affected relative may PsychoOncology (In press) also be salient in increasing our respondents’ sense of their own Goldberg DO and Williams P (1988) GHQ: A Users Guide to the General Health Questionnaire. NFER-Nelson: Windsor susceptibility. High levels of distress for whatever reason obviate Green J, Murton F, Stratham H (1993) Psychosocial issues raised by a familial against women trying to absorb complex information about threat ovarian cancer register. J Med Genet 30: 575–579 to their health or making informed decisions about risk manage- Hallowell N and Richards MPM (1997) Understanding life’s lottery: an evaluation ment. There is therefore a need for cancer genetics services to be of studies of genetic risk awareness. J Health Psychol 2: 31–43 Jacobs I and Lancaster J (1996) The molecular genetics of sporadic and familial able to recognize clinically significant distress and to have access epithelial ovarian cancer. Int J Gynaecol Cancer 6: 337–355 to appropriate referral services for those clients. Jacobs I, Mackay J, Skates S for the UKCCCR Gynaecological Subcommittee Anxiety proneness was significantly higher in our sample than in (1997) UKCCCR National Familial Ovarian Cancer Screening study. OCS Study Registration Centre, Addenbrooke’s Hospital, Cambridge Knight et al’s (1983) general population. The psychological Kash KM, Dabney MK, Ortega-Vardejo et al (2000) Group intervention for women characteristics (trait anxiety, locus of control and monitoring/ at genetic risk for breast cancer. Oral presentation to 6th International Meeting blunting) observed in this sample were very similar to those observed on Psychosocial Aspects of Genetic Testing for Hereditary Breast/Ovarian Cancer. Marseille, March 9th, 2000 in the familial breast clinic sample (Cull et al, 1999). Our data Knight RG, Waal Manning HJ and Spears GF (1983) Some norms and reliability suggest that well educated, anxiety-prone women are more likely to data for the State Trait Anxiety Inventory and Zung Self Rating Depression present with high levels of distress about their cancer risk which they Scale. Br J Clin Psychol 22: 245–249 tend to overestimate. Locus of control beliefs were significantly Lloyd S, Watson M and Waites B (1996) Familial breast cancer: a controlled study of risk perception psychological morbidity and health beliefs in women related to distress on univariate, though not on multivariate analysis. attending for genetic counselling. Br J Cancer 74: 482–487 Women who felt that their health was outwith their control were Mackay J, Crosbie AEC, Steel CM, Smart GE and Smyth JF (1995) Clinical and more likely to be clinically significantly distressed. This finding may ethical dilemmas in familial ovarian cancer. Chapter 8 In: Sharp F, Blackett A, Leahe R, Berek J (eds) Ovarian Cancer, London: Chapman-Hall be useful in planning remedial intervention. Counselling about risk Marks G, Richardson JL, Graham JW and Levine A (1986) Role of health locus of management strategies might be expected to relieve these women. control beliefs and expectations of treatment in adjustment to cancer. J Pers However we have found that the majority of women attend this clinic Soc Psychol 51: 443–450 with exaggerated expectations of the benefits of screening (Sheppard Miller SM (1987) Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers & Soc Psychol 52: 345–353 et al, in press). Learning of the unproven efficacy of available Rees G, Fry A and Cull A. A family history of breast cancer. Women’s experiences screening methods may drive them to seek prophylactic surgery to from a theoretical perspective. Soc Sci & Med (in press) regain control over their health and to relieve their distress. We have Robinson GE, Rosen BP, Bradley LN, Rockfert WG, Carr ML, Cole DEC and Murphy KJ (1997) Psychological impact of screening for familial ovarian been exploring the factors influencing the uptake and outcome of cancer: Reactions to initial assessment. Gynaecol Oncol 65: 197–205 prophylactic oophorectomy among at risk women (Fry et al, in press) Schwartz MD, Lerman C, Miller SM, Daly M and Maisny A (1995) Coping but further prospective research is needed. There may also be a place predisposition, perceived risk and psychological distress among women at increased risk for ovarian cancer. Health Psychology 14(3) 232–235 for psycho-educational interventions of the kind being offered to Sheppard R, Fry A, Rush R, Steel CM and Cull A. Women at risk of ovarian cancer: women at increased risk of breast cancer (Kash et al, 2000). Brief attitudes towards and expectations of the familial ovarian cancer clinic. group interventions which offer information and social support and Familial Cancer (in press). which promote active coping strategies may be a cost-effective way Spielberger C (1983) Manual for the State Trait Anxiety Inventory. Consulting Psychologists Press: Palo Alto, Ca of helping women to come to terms with familial ovarian cancer. Steptoe A (1989) An abbreviated version of the Miller Behavioural Style Scale. Br J Clin Psychol 28: 183–184 Stratton JF, Gayther SA, Russell P, Dearden J et al (1997). Contribution of BRCA1 ACKNOWLEDGEMENTS mutations to ovarian cancer. N Eng J Med 336: 1125–1130 Wallston KA and Wallston BS (1978). Development of the Multidimensional Health We would like to acknowledge the support of the staff of Locus of Control Scales. Health Educ Monogr 6: 2 160–170 the Familial Ovarian Cancer Clinic in Edinburgh, particularly the Wardle J (1995) Women at risk of ovarian cancer. J Natl Cancer Inst Monogr No 17: 81–85 © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Journal of Cancer Springer Journals

Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic

British Journal of Cancer , Volume 84 (5) – Feb 27, 2001

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Springer Journals
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Copyright © 2001 by The Author(s)
Subject
Biomedicine; Biomedicine, general; Cancer Research; Epidemiology; Molecular Medicine; Oncology; Drug Resistance
ISSN
0007-0920
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1532-1827
DOI
10.1054/bjoc.2000.1651
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Abstract

British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign doi: 10.1054/ bjoc.2000.1651, available online at http://www.idealibrary.com on http://www.bjcancer.com Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic 1 1 1 2 A Cull , A Fry , R Rush and CM Steel 1 2 Psychology Research Group, Imperial Cancer Research Fund (ICRF) Medical Oncology Unit, Western General Hospital, Edinburgh EH4 2XU; School of Biological and Medical Sciences, University of St Andrews, Bute Medical Building, St Andrews, Fife KY16 9TS, UK Summary Of 230 women referred to a familial ovarian cancer clinic, 196 (85%) completed a questionnaire before they attended. The data collected included pre-counselling risk perceptions and an assessment of distress. Respondents were more likely to underestimate (44%) than overestimate (19%) their risk. Those with a family history of breast and ovarian cancer (HBOC) were particularly likely to underestimate their ovarian cancer risk. The variables assessed in this study – sociodemographic, family history, distress, anxiety proneness, coping style and beliefs about health control – explained little of the observed variation in accuracy of risk perception. On the General Health Questionnaire (GHQ- 30) 30% of the sample obtained scores above the cut-off (³ 6) recommended for screening for ‘case-level’ psychological distress. Women exhibiting case-level distress were more likely to overestimate their risk (OR = 2.3). On univariate analysis low internal locus of control was associated with ‘case-level’ distress (P = 0.008). On multiple regression the best predictors of ‘caseness’ were high-trait anxiety, being a graduate and inaccurate risk perception. There was no difference in the level of distress shown by women with HBOC vs. those with a history of ovarian cancer only. Implications of these findings for the counselling needs of the women are discussed. The effectiveness of the clinic in improving the accuracy of risk perceptions and relieving distress is being assessed. © 2001 Cancer Research Campaign http://www.bjcancer.com Keywords: ovarian cancer; psychological distress; cancer risk; genetic counselling A growing number of clinics has been set up to offer genetic coun- breast cancer, no screening method for ovarian cancer has yet been selling to individuals whose family history of cancer suggests shown to be effective in early detection or in reducing mortality. inherited susceptibility which puts them at increased risk of devel- Prophylactic oophorectomy, with its attendant side-effects and oping cancer, often at a relatively early age. The services offered unproven efficacy, is probably the most effective means of by these clinics need to be adequately evaluated with respect to reducing the risk of death from ovarian cancer currently available both medical and psychosocial outcomes to inform future practice. to women at increased risk. It is not clear whether the risk The establishment of a specialist ovarian cancer family clinic in of psychological morbidity is greater for women at increased SE Scotland (Mackay et al, 1995) provided a unique opportunity risk of developing cancer at more than one body site. to assess the psychological impact on the women attending. We When the present study was planned there were scant published had begun assessing the knowledge, attitudes, emotional and data about the psychological responses of women with ovarian behavioural responses of women attending a familial breast cancer cancer risk. The available data need to be interpreted with attention clinic (Cull et al, 1999). We therefore sought to collect comparable to how the samples were derived. In the US high levels of psycho- data in this setting. logical distress among first degree relatives (FDRs) of ovarian The lifetime risk of developing ovarian cancer for women in the cancer patients were associated with their own increased risk as well general population in Scotland is 1 in 75 (1.3%). For women with as in reaction to their relative’s illness (Daly and Lerman, 1993). In one affected relative the risk is of the order of 3–4% and may be as the UK women who volunteered early for a familial ovarian cancer high as 40% for a woman with two or more affected relatives register were well informed about ovarian cancer, uncertain about (Jacobs and Lancaster, 1996). The highly penetrant BRCA1 gene is genetic issues but not particularly anxious (Green et al, 1993). thought to account for 5% of ovarian cancers among women under Wardle (1995) assessed two groups of respondents (with/without a the age of 70 (Stratton et al, 1997). This proportion may be higher FDR with ovarian cancer) to a national (UK) advertisement for among young women (Ford et al, 1995). Other less penetrant participants for a study of ovarian cancer screening. Both these self- genes are also thought to be implicated but there is less evidence selected groups had higher perceptions of their personal risk of available about the proportion of cases which can be attributed to ovarian cancer and higher levels of cancer worry than general popu- these genes. Although in some families the inherited predisposi- lation controls. In Canada, among women assessed after attending a tion appears to be specific to ovarian cancer, the most common familial ovarian cancer clinic, half correctly reported their risk (as clinical pattern is in association with breast cancer. high/moderate/low), 26% overestimated and 17% minimized their There is a lack of evidence about how best to manage women risk (Robinson et al, 1997). The minimizers were significantly less with a family history of ovarian cancer. In contrast to screening for distressed than the accurate or over-estimators, of whom 40% were significantly depressed and 20% were highly anxious. Received 4 April 2000 A variety of personal characteristics have been implicated in medi- Revised 5 December 2000 ating the relationship between perceived threat to health, distress and Accepted 5 December 2000 health protective behaviours. A tendency to seek out information about threat – ‘monitoring’ (Miller, 1987) – was associated with a Correspondence to: A Cull 594 Cancer risk perceptions and distress 595 Table 1 Criteria for referral to familial ovarian cancer clinic at the time of this to be a) the risk for a woman in the general population and b) study (Mackay et al, 1995) their own lifetime risk of developing ovarian cancer (adapted from Evans et al, 1993, 1994). They were also asked to rate their Any woman who has : personal susceptibility to developing ovarian cancer: not very/ · ³ 1 first degree relative with epithelial ovarian cancer under 55 years moderately/very susceptible. of age · ³ 1 first degree relative with both breast and epithelial ovarian cancer at any age Psychological distress · 1 first degree relative with epithelial ovarian cancer at any age and The General Health Questionnaire (GHQ-30) with a cut-off score ³ 1 additional first or second degree relative with breast or ovarian cancer · an actual or perceived family history of cancer causing undue anxiety of ³ 6, was used to screen for clinically significant levels of psychological distress and dysfunction. Published data from the In this context a first degree relative is a mother, sister or daughter and a general population are available for comparison (Goldberg and second degree relative is grandmother, aunt or first cousin. Williams, 1988). higher perceived risk of ovarian cancer, more intrusive thoughts Psychological characteristics about cancer and higher levels of distress in women with a FDR with ovarian cancer (Schwartz et al, 1995) and with a higher level of Anxiety proneness cancer worry among screening attenders (Wardle, 1995). Beliefs The Spielberger State-Trait Anxiety Inventory (STAI) (Spiel- about the controllability of one’s health in the face of inherited berger, 1983) was used to measure anxiety proneness (trait susceptibility to cancer may also influence psychological adjustment. anxiety). Knight et al (1983) collected STAI data from a general Among women with an FDR with breast and/or ovarian cancer, those population sample in an area of New Zealand with a strong history with high-risk perceptions and low levels of perceived control were of immigration from Scotland. The STAI trait anxiety scores most vulnerable to distress (Audrain et al, 1997). which they present by age (in 10-year bands) and sex offer more Our ovarian cancer family clinic is multidisciplinary and based appropriate reference data for this study than those in the STAI in a ‘Well Woman Clinic’ in the community (Mackay et al, 1995). manual which are derived from employees in the US Federal Patients were typically referred by their general practitioner Aviation Administration. according to criteria based on their family history (Table 1). A significant proportion were referred from the familial breast cancer Beliefs about control of health clinic. This study was designed to address the following questions: The Health-related Locus of Control Scale (Wallston and Wallston, 1978) was used to assess the extent to which the women 1. What were the characteristics of women who presented at the attributed their health to internal (i.e. own behaviour), external clinic? In particular did they overestimate their risk and were (e.g. doctors) or chance factors. The 9 items with the highest item- they highly distressed? subscale correlations were selected (Marks et al, 1986). This short 2. Did women with a family history of breast and ovarian cancer form allowed the role of locus of control to be explored while (HBOC) perceive their risk as greater and were they more keeping the burden on respondents to a minimum. distressed than women with a history of ovarian cancer (HOC) only? Coping style 3. Can we predict women’s presenting risk perceptions and levels The Miller Behavioural Style Scale (Miller, 1987) was designed to of distress from their sociodemographic details, family history assess the propensity of people to seek out (‘monitor’) or avoid or psychological characteristics? (‘blunt’) information about threatening events. The short form presents 2 scenarios (Steptoe, 1989) to which respondents select SAMPLE their most likely reaction from a fixed choice of ‘monitoring’ and ‘blunting’ responses. A consecutive series of 230 women, with a family history of ovarian cancer, newly referred for counselling about their risk PROCEDURE of developing ovarian cancer were eligible to take part in the study. Data were collected between June 1994 and December 1998. Referred women were sent a family information sheet to complete and return by post. The family history given was verified and MEASURES extended by reference to other sources e.g. cancer registry, hospital records etc. The woman’s risk of ovarian cancer was estim- Sociodemographic and family history characteristics ated before a clinic appointment was offered. The assessment The following data were recorded: age; marital status (married/ package for this study was posted to women with their clinic living with partner vs not); children (yes/no); daughters (yes/no); appointment and returned when they attended the clinic. A geneti- educational attainment (university level/less than university); cist counselled women about their family history. Women at low family history (history of ovarian cancer – HOC vs. history of risk were discharged from follow-up. Women at increased risk breast and ovarian cancer – HBOC). (> 3% lifetime risk) were seen by a gynaecologist and offered surveillance by clinical examination, Ca 125 testing and pelvic ultrasound (by separate appointment) to screen for ovarian cancer. Risk estimate At the time of this study genetic testing was not available to the Women were asked to select from 10 categories the response (e.g. women attending this clinic. For women at high risk (>5% life- inevitable, 1 in 2... <1 in 200, very unlikely) which they believed time risk), the geneticist rehearsed the issues in genetic testing © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599 596 A Cull et al and the gynaecologist discussed prophylactic surgery as a risk management option. For the purposes of this study a consultant geneticist reviewed all the casenotes. The women were cat- egorized as being at high, moderate or low risk on the basis of their age and family history. STATISTICAL ANALYSIS Descriptive statistics were generated to describe the study popula- 6 tion. The associations between explanatory variables and ordered groups of risk estimates (very/moderately/not very susceptible; high/moderate/low risk) were examined using the non-parametric <1 in 200 1 in 200 1 in 100 1 in 50 1 in 20 1 in 10 1 in 4 1 in 3 1 in 2 Inevitable trend test (Cuzick, 1985). The chi-square test for trend was used to Self Risk Estimate compare proportions across these ordered groups. The Mann- Figure 1 Distribution of estimates of personal risk of developing ovarian Whitney test was used to compare personal risk estimates for the 2 cancer among women attending ovarian cancer family clinic (N= 185) sub-groups (HOC vs. HBOC). Comparisons between two indepen- dent samples were made using two-sample t-tests. Univariate Table 2 The relationship between women’s estimates of personal analyses were undertaken to explore relationships of accuracy of risk/susceptibility to ovarian cancer and risk category assigned by geneticist personal risk perception and distress with each other and with sociodemographic, family history and personal characteristics. The Personal risk estimate Personal susceptibility – ratio endorsed very mod not very results informed the forward stepwise selection of variables entered into the logistic regression analyses undertaken to construct predic- Risk category tive models of under- and overestimating risk and for ‘case-level’ assigned: distress. The criterion for entering variables into the model was P ² high Range: inevitable – ²1 in 200 23 61 14 N=98 Median= 1 in 10 (24%) (62%) (14%) 0.05 and for removing them P ³ 0.1. The data were analysed using (n=97) the statistical package SPSS for Windows (1999). moderate Range: inevitable – ²1 in 200 9 41 8 N=58 Median = 1in 10 (15%) (71%) (14%) RESULTS (n=55) 230 women were eligible for inclusion in the study. 196 of them low Range: 1in2 – ²1 in 200 2 25 6 N=33 (85%) completed baseline assessments and returned them when Median = 1 in 50 (6%) (76%) (18%) they attended the clinic. 15 women attended the clinic but failed to (n=32) return their baseline assessment and 14 women neither attended the clinic nor completed baseline assessments. As a result of administrative failures 5 women were not contacted. ³ 3 times their estimate for the general population. Surprisingly, 8% (n = 15) set their risk lower than the risk they endorsed for the general population by a factor of ²0.5. Sociodemographic and family history characteristics Participants in this study ranged in age from 21.4 to 69.6 years Personal susceptibility (mean = 42.1 years, SD = 9.8, n = 196). The majority (74%) were Prior to attending the clinic 67% (n = 128/190) rated themselves as married or cohabiting. Of the 75% who had children, 75% had 1 or moderately susceptible to developing ovarian cancer; 34 women more daughters. 40% had received secondary education to age 16; (18%) rated themselves very susceptible and the remaining 28 (15%) 15% to age 18; 17% had had some tertiary education and 28% rated themselves not very susceptible. The use of these verbal descrip- were university graduates. 85 women (44%) also had a family tors was significantly related to the numerical risks endorsed (z = 5.32, history of breast cancer. P < 0.0001). The range of ratios endorsed showed considerable overlap but women who rated themselves ‘very susceptible’ did endorse higher personal risk ratios (median = 1/4, range: inevitable – Risk assessment 1/200) than ‘moderately’ (median = 1/20, range: 1/2 – ²1/200) or ‘not Risk estimate – ratios very’ susceptible women (median = 1/50, range: 1/3 – ²1/200). 184 women each endorsed one of the ratios offered to indicate their estimate of the risk for a woman in the general population of Comparison of personal and professional risk assessments developing ovarian cancer. 36% were in the correct range i.e. 1 in Data were available from the notes of 195 women of whom 102 50–1 in 100; 28% endorsed values ² 1/200; 29% were in the range (52%) were deemed to be at high risk. For 59 (30%) the risk assigned 1/20–1/10; 7% endorsed values ³ 1/4. Of 185 women returning was ‘moderate’ and for the remaining 34 women (17%) the risk was personal risk estimates: 5 (3%) believed it inevitable they would assessed as low. The relationships between risk categories assigned develop ovarian cancer and 20 (11%) set their risk at ²1/200. The by the geneticist and the women’s pre-clinic assessments of their own remaining personal risk estimates showed a bimodal distribution numerical risk and susceptibility are shown in Table 2. between these extremes (Figure 1). Estimates of both general Women whose risk of developing ovarian cancer was judged by population and personal risk were available from 184 women: the geneticist to be low had themselves returned significantly 78% set their own risk at least twice the general population risk lower numerical estimates of their risk than women judged to be whatever they believed that to be and 92 (50%) set their risk at at moderate or high risk (z = 2.05, P = 0.04). There was no British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign % reporting Cancer risk perceptions and distress 597 Table 3 Psychological Characteristics by Accuracy of Risk Estimate Women with HBOC compared with women with HOC There were no significant differences in scores on any of the Underestimators Overestimators measures used. N Mean SD N Mean SD Trait Anxiety 75 39.0 9.2 36 41.1 9.2 Predicting accuracy of initial risk perception Locus of Control: Chance 80 8.0 3.2 35 8.9 3.5 We first conducted univariate analyses to explore the relationships Internal 80 13.5 2.7 35 13.1 2.6 between overestimating the risk (vs. not) then, separately, under- External 80 6.9 3.6 35 7.4 3.4 estimating (vs. not), and the sociodemographic, family history, Coping Style: distress and the psychological variables. Overestimators were Monitoring 79 3.8 1.6 36 3.9 1.8 significantly more likely to have HOC than HBOC (c = 4.5, df = Blunting 79 2.1 1.2 36 1.8 0.9 1, P = 0.03) and to exhibit case-level distress on GHQ (c = 5.0, df = 1, P = 0.03). Underestimators were conversely significantly more likely to have HBOC (c = 13.2, df = 1, P < 0.0005) and less significant association between the risk category assigned by the likely to be GHQ ‘cases’ (c = 4.6, df = 1, P = 0.03). None of geneticist and the women’s own ratings of their susceptibility the other relationships was significant. The mean scores on the (c = 5.58, df = 4, P = 0.23). For 37% of the sample (70/189 psychological measures are given for under- and overestimators women) the risk category to which they were assigned accorded separately in Table 3. with their rating of their susceptibility – ‘accurate estimators’. For Separate multivariate logistic regression analyses were 83 women (44%) – ‘underestimators’ – the risk assigned was conducted to identify independent predictors of over- and under- higher and for 36 of them (19%) – ‘overestimators’ – lower than estimators. The variables considered in these models were those their own prior rating of their susceptibility. found to be associated with over-/under-estimating at the 5% significance level on univariate analyses i.e. GHQ ‘caseness’ and Women with HBOC compared with women with HOC HBOC vs HOC. A forward stepwise selection procedure was used. Prior to attending the clinic there were no significant differences in One variable was significant (P < 0.05) in each model: women personal risk estimates (Mann-Whitney U = 4024.0, P = 0.66) nor in exhibiting ‘case-level’ distress were more likely to overestimate personal susceptibility ratings (c = 2.58, df = 2, P = 0.28) between their risk (OR = 2.33, CI: 1.09–4.99); HBOC women were more these two groups of women. As expected the HBOC women were likely to underestimate their risk (OR = 0.34, CI: 0.19–0.63). assigned a higher risk than the HOC women (c = 15.6, df = 2, P < 0.0005). This implies then that the HBOC women were more likely to underestimate their risk. Among the women who underesti- Predicting ‘case-level’ distress at first presentation mated their risk at baseline, 58% (48 women) had a history of breast Univariate analyses were conducted to determine the factors asso- and ovarian cancer while among the overestimators the proportion ciated with ‘case-level’ GHQ scores. The variables considered was only 28% (10 women). Among 30 HBOC women who had were as for risk perception above. Of the sociodemographic been referred from the familial breast cancer clinic 73% (n = 22) variables only education was significantly related to distress. The underestimated their risk of ovarian cancer. proportion of women exhibiting ‘case-level’ distress was signific- antly higher among university graduates than among the less well Psychological distress educated (c = 10.4, df = 1, P = 0.001). Neither family history nor the women’s ratings of their susceptibility to ovarian cancer were GHQ related to ‘caseness’ but accuracy of risk perception was signific- The mean GHQ score of women attending this clinic was 4.5 ant (c = 6.8, df = 2, P = 0.03). Of the psychological variables trait (SD = 6.4, n = 194). 59 women (30%) scored above the cut-off (5/6) anxiety, chance and internal locus of control were all significantly for screening for ‘case-level’ distress. Women who overestimated related to ‘caseness’. Mean scores for the psychological variables their susceptibility to ovarian cancer had a significantly higher mean for ‘cases’ and ‘not cases’ are given in Table 4. GHQ score (mean = 6.7, sd = 8.3, n = 34) than ‘underestimators’ Women who scored as GHQ ‘cases’ were more anxiety prone (mean = 3.5, SD = 5.4, n = 83; t = 2.46, df = 115, P = 0.02) and a (t = 6.73, df = 183, P < 0.0005), more likely to ascribe control over higher proportion of ‘cases’ (47% vs. 23%, respectively). their health to chance (t = 1.96, df = 189, P = 0.05) and less likely to feel that their health was under their own control (t = 2.67, Women with HBOC compared with women with HOC df = 189, P = 0.008). There were no significant differences in mean GHQ scores Multivariate logistic regression was conducted using the vari- between these sub-groups of women. The proportion of ‘cases’ ables found to be significant (P < 0.05) on univariate analysis with was somewhat lower among HBOC women (26% vs. 34%) but a forward stepwise procedure (Table 5). The category ‘accurate this difference was not statistically significant. estimator’ was used as the reference against which over- and under-estimators were compared. University educated women and Psychological characteristics overestimators are significantly more likely to exhibit ‘case-level’ scores on the GHQ. The model predicts 39% of the variation in For the sample as a whole (n = 187) the mean trait anxiety score was ‘caseness’. 40.1 (SD = 9.0). Mean scores from 192 women were calculated for the health-related locus of control and coping style scales: self DISCUSSION (internal) mean = 13.2 (SD = 2.8); others (external) mean = 7.2 (SD = 3.4); chance mean = 8.2 (SD = 3.2); monitoring mean = 3.7 Ultimately familial cancer clinics aim to reduce cancer mortality and (SD = 1.7) and blunting mean = 1.9 (SD = 1.2). morbidity. They seek to achieve this by identifying and counselling © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599 598 A Cull et al Table 4 Psychological Characteristics by ‘Case-Level’ Distress (GHQ30 values of 1 in 10 and 1 in 50. The majority of women put their own Score >5) risk at least at 2–3 times the risk they endorsed for the general ‘Case’ ‘Non-Case’ population. This suggests they were using concepts of relative risk N Mean SD N Mean SD to make their ratings. The 15 women who set their own risk lower than the risk they assigned for the general population may not have Trait Anxiety 59 45.9 9.5 126 37.3 7.4 understood the meaning of the ratios. These were less well- Locus of Control: educated women, two-thirds of whom had had no formal education Chance 59 8.8 3.2 132 7.9 3.2 after the age of 16 years. Most women described themselves as Internal 59 12.4 2.8 132 13.5 2.7 External 59 7.6 3.2 132 7.0 3.5 ‘moderately susceptible’ to ovarian cancer. The remainder were equally divided between rating themselves ‘very’ and ‘not very’ Coping Style: Monitoring 59 4.0 1.8 131 3.6 1.6 susceptible. Their use of these categories was significantly related Blunting 59 1.9 1.3 131 1.9 1.1 to the ratio that they endorsed to denote personal risk. The means by which risk information was communicated to the women is not asymptomatic, at-risk individuals about cancer prevention and early the subject of this study and we made no assumptions about the detection. They may also have a role in educating and reassuring terms used in the consultation. However awareness of individuals’ those whose risk is not sufficiently elevated to warrant specialist prior estimates of their own risk is likely to be helpful in appropri- surveillance. To be cost-effective these clinics need predominantly to ately tailoring the consultation to meet individual needs. attract people who are at increased risk of cancer. They also need to Risk management at the clinic is operationally based on 3 risk cate- be able to give information, with all its attendant uncertainty, in such gories i.e. high, moderate and low, derived from pedigree analysis and a way that people can use it to make informed health care choices and the woman’s age at the time of the consultation. We felt it was poten- without causing adverse psychological consequences. tially useful to identify whether or not women present with a roughly This study describes the characteristics of women who attended a realistic perception of their own situation. We therefore used these specialist familial ovarian cancer clinic. Referral criteria for this categories as simplistic means of identifying women with under- or clinic had been circulated to GPs and relevant clinics (Mackay et al, over-estimated risk perceptions. These women were not characterized 1995). Hence the majority of women in this study had been referred by exaggerated perceptions of their cancer risk. Like those attending by a doctor and were at at least moderately increased risk of devel- the familial breast clinic (Cull et al, 1999) they were more likely to oping ovarian cancer. Data were not available from the 6% of refer- underestimate their risk. Women with HBOC were more likely to rals who failed to attend. These cannot be regarded as missing at underestimate their risk of ovarian cancer than HOC women. Among random. Our hypothesis is that these women were anxious about those HBOC women referred from the familial breast cancer clinic, their cancer risk and coping by avoidance (‘blunting’). Compliance 73% underestimated their risk of ovarian cancer. To be referred they with the baseline assessment was excellent (93%) among ‘atten- would have had to have had at least one family member affected by ders.’ However the missing data probably also represent a defen- ovarian cancer. Where there was a strong family history of breast sive response from at least a proportion of the non-compliant cancer (e.g. 3 or 4 affected relatives) ovarian cancer may have affected women. Our data need to be interpreted in the light of this potential only a distant relative. Typically these women had been unaware of bias. It should be noted that referral criteria for this clinic are now the presence, or significance, of a family history of ovarian cancer more strict, to conform with those of the UKCCCR National until their history was reviewed at the familial breast clinic. Familial Ovarian Cancer Screening Study (Jacobs et al, 1997). Nonetheless where there was a high probability of a BRCA1/2 muta- In common with observations from other health protection tion in the family the woman’s risk of ovarian cancer would be rela- programmes (Audrain et al, 1995) there was an over-representation tively high. These data suggest a particular need to monitor the impact of well-educated women in our sample. 44% were at increased risk of of counselling on HBOC women who may be at greater risk of both breast and ovarian cancer. 30 (35%) of the HBOC women had becoming distressed with increased awareness of their dual risk. been referred from the breast cancer family clinic. Only 12 of them There were 34 women who were not judged by the geneticist had been included in our study of that clinic (Cull et al, 1999). This to be at sufficiently increased risk to warrant surveillance. They was not considered a sufficiently large proportion of that sample (n = should be discharged from the clinic. The available data (Table 2) 486) to invalidate comparison between that study and this one. show the majority of them feel ‘moderately susceptible’ and two of We were aware of the lack of consensus among professionals them feel ‘very susceptible’ to ovarian cancer. For the sample as a about how best to communicate about risk and the reservations of whole the best predictor of overestimated risk was a ‘case-level’ GHQ Hallowell and Richards (1997) about the meaning of numerical risk score. The danger is that the health care behaviour of these women information to the women concerned. We therefore investigated the will be driven by distress rather than objective risk. The challenge is to women’s use of two response formats, using numbers and words. In counsel them in such a way as to moderate their perception of their this study, the numerical risk ratios endorsed to denote personal risk personal risk and reduce their distress while encouraging appropriate spanned the whole range of response options offered, with modal health care vigilance. The outcome of the clinic in terms of the health Table 5 Logistic regression to predict case-level GHQ Scores (>5) Coefficient S.E. p value (df) Odds ratio (95% confidence intervals) Trait Anxiety 0.15 0.03 0.000 1 1.16 (1.09 – 1.23) University Education 1.70 0.50 0.001 1 5.50 (2.08 – 14.54) Estimators 0.03 2 Underestimators –0.24 0.47 0.60 1 0.78 (0.07 – 0.70) Overestimators 1.27 0.58 0.03 1 3.55 (0.09 – 0.89) Constant –7.59 1.45 0.000 1 0.00 British Journal of Cancer (2001) 84(5), 594–599 © 2001 Cancer Research Campaign Cancer risk perceptions and distress 599 care behaviour of the distressed overestimators warrants further study. gynaecologists Dr GE Smart and Dr C Busby-Earle. Overall, the variables included in this study explained little of the Several research assistants helped with the collection of data: observed variation in our categorization of accuracy of women’s pre- Hayley Miller, Susie Howat, Tracy Williamson and Amanda Barrie. counselling risk perceptions. 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Women at risk of ovarian cancer: women at increased risk of breast cancer (Kash et al, 2000). Brief attitudes towards and expectations of the familial ovarian cancer clinic. group interventions which offer information and social support and Familial Cancer (in press). which promote active coping strategies may be a cost-effective way Spielberger C (1983) Manual for the State Trait Anxiety Inventory. Consulting Psychologists Press: Palo Alto, Ca of helping women to come to terms with familial ovarian cancer. Steptoe A (1989) An abbreviated version of the Miller Behavioural Style Scale. Br J Clin Psychol 28: 183–184 Stratton JF, Gayther SA, Russell P, Dearden J et al (1997). Contribution of BRCA1 ACKNOWLEDGEMENTS mutations to ovarian cancer. N Eng J Med 336: 1125–1130 Wallston KA and Wallston BS (1978). Development of the Multidimensional Health We would like to acknowledge the support of the staff of Locus of Control Scales. Health Educ Monogr 6: 2 160–170 the Familial Ovarian Cancer Clinic in Edinburgh, particularly the Wardle J (1995) Women at risk of ovarian cancer. J Natl Cancer Inst Monogr No 17: 81–85 © 2001 Cancer Research Campaign British Journal of Cancer (2001) 84(5), 594–599

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British Journal of CancerSpringer Journals

Published: Feb 27, 2001

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