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Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling

Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following... Hereditary Cancer in Clinical Practice 2007; 5(2) pp. 59-66 Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling 1 2 3 4 1 1 1 Eveline M.A. Bleiker , Fred H. Menko , Irma Kluijt , Babs G. Taal , Miranda A. Gerritsma , Lidwina D.V. Wever , Neil K. Aaronson Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam Department of Clinical Genetics and Human Genetics, VU University Medical Center, Amsterdam Department of Clinical Genetics, Academic Medical Center, Amsterdam Department of Gastroenterology, The Netherlands Cancer Institute, Amsterdam Key words: colorectal cancer, HNPCC , genetic counselling, psychosocial impact Corresponding author: Eveline M.A . Bleiker, Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands, tel.: +31-20-512.6072, fax: +31-20-512.2322, e -mail: e.bleiker@nki.nl Submitted: 2 May 2007 Accepted: 22 May 2007 A Ab bs sttrra ac ctt B Ba ac ck kg gr ro ou un nd d: : This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling. M Me etth ho od ds s: : In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986-1998 completed a self-report questionnaire by mail. R Re es su ulltts s: : 116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%). C Co on nc cllu us siio on n: : On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems. and colon screening recommendations were based on IIn nttrro od du uc cttiio on n family history only [3]. Since 1993, genetic testing for Between 1 and 6% of all colorectal cancers represent HNPCC has been possible for at-risk families [4-7]. a well-delineated genetic syndrome, hereditary Carriers of HNPCC-related mutations have a lifetime nonpolyposis colorectal cancer (HNPCC or Lynch risk of up to 80% of developing colorectal cancer [8]. syndrome) [1, 2]. Before 1993, cancer risk estimates Those meeting the clinical criteria for HNPCC [9] and H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson the proven carriers of HNPCC-related mismatch repair cancer; however, no evidence of actual insurance (MMR) genes are advised to undergo a colonoscopy discrimination from BRCA1/2 testing has been every 1-2 years [10]. In a recent paper, we reported on observed [34]. compliance with recommended colon-screening advice Discriminatory practices related to employment, [11]. The focus of the current paper is on the long-term life-insurance or obtaining a mortgage have not yet psychosocial impact of genetic counselling for hereditary been documented in the Netherlands and, to our nonpolyposis colorectal cancer. knowledge, no systematic study of this issue has been Most studies on the psychosocial consequences of carried out in this area of cancer genetics. Only one genetic counselling and testing for breast or colorectal Finnish study reported on individuals tested for HNPCC: cancer have not shown significantly increased mean no differences were found between carriers and non- levels of psychological distress during the 12 months carriers in life or health insurance coverage within immediately following testing [12-22]. However, despite 12 months after genetic counselling and testing [35]. the fact that mean levels of distress are not increased, it Finally, with regard to family planning, it has been reported that individuals who tested positive for a BRCA1 has been reported that 3% to 24% of individuals experience heightened levels of distress after genetic gene mutation had more negative attitudes towards counselling and/or testing for colorectal cancer [16-18]. reproductive intentions than non-carriers [36]. To our Factors that are reported to be associated with knowledge, no studies have investigated this issue in heightened levels of distress during or after counselling HNPCC. The present study was carried out to investigate: (1) or testing include: high perceived cancer risk [23], levels of cancer-specific distress more than one year younger age [23], education level [18, 23] (with conflicting findings with regard to the direction of the after genetic counselling for HNPCC; (2) the association), female gender [18], baseline mood association between sociodemographic, clinical and disturbance [19], genetic test result (carriers and those psychosocial factors and levels of distress; (3) the awaiting test results) [16], fewer sources of social contacts impact of genetic counselling on family relationships; and (4) social consequences of genetic counselling. [18, 19], and less satisfaction with those contacts [18]. Most studies on genetic counselling for cancer have generally focused on the first 12 months after counselling M Me etth ho od ds s [12, 13]. However, in order to better counsel high-risk families, we need to understand the long-term impact of P Pa ar rt ti ic ci ip pa an nt ts s undergoing genetic counselling and mutation testing [24]. Genetic counselling may not only affect the individual This cross-sectional study recruited all individuals being counselled, but also family relationships [25]. who were counselled between 1986 and 1998 at one Although most individuals from HNPCC families have of three family cancer clinics in Amsterdam for HNPCC. been found to be willing to share information about These individuals represent a clinical case series. The HNPCC with family members [26], the initial clinic participating hospitals were the VU University Medical attendee may find it particularly difficult to inform Center (VUMC), the Netherlands Cancer Institute – relatives, especially distant relatives [27, 28] or in Antoni van Leeuwenhoek Hospital (NKI-AVL), and the emotionally distant relationships [29], since the Academic Medical Center (AMC). Included were all information may have a disturbing impact on family individuals who met the Amsterdam-I criteria, [9] and relationships [30]. However, no information is currently had completed genetic counselling for HNPCC. available on the extent to which genetic counselling Additional inclusion criteria were basic fluency in Dutch, affects family relationships in the years following genetic having had at least one face-to-face counselling session counselling and testing for HNPCC [31]. with a clinical geneticist (physician), having been Information provided during genetic counselling/ informed about the risk of developing colorectal cancer testing may also have significant consequences in the (again), and not being in a terminal stage of illness. areas of insurance, employment and family planning [32]. A common concern is that personal information G Ge en ne et ti ic c c co ou un ns se el ll li in ng g about the results of genetic counselling may be required by insurance companies, and that this may In this paper we use the term “genetic counselling” result in limited coverage, increased costs, or outright to refer to the entire counselling process. This includes denial of insurance [33]. This fear of insurance an intake session during which a pedigree is obtained, discrimination has been reported to be associated with and one or more counselling sessions with a genetic the decision not to undergo genetic testing for breast counsellor or clinical geneticist during which H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling a diagnosis is made, risk counselling is provided, and C Ca an nc ce er r- -s sp pe ec ciiffiic c d diis sttr re es ss s: : The Intrusion subscale of preventive health recommendations are discussed. The the Impact of Event Scale (IES) [39] was used to assess risk estimation can be based on the family history only, the frequency and severity of intrusive thoughts about or also on the results of a DNA test. If a family meets the familial occurrence of colorectal cancer. The the clinical criteria for HNPCC [9] DNA testing (testing Intrusion scale consists of seven Likert-type items for MMR genes) is usually offered. (response categories: “not at all” to “often”). The Dutch translation of the IES [40] has proven to be a valid and reliable instrument for assessing event-specific P Pr ro oc ce ed du ur re es s psychological distress (Cronbach’s alpha of the All eligible individuals received a letter from their Intrusion subscale in the present study = 0.89). The clinical geneticist explaining the aim of the study, and Intrusion subscale has also proven to be a valid and a self-report questionnaire. The completed questionnaire reliable instrument in populations at increased risk of could be returned in a postage-free envelope. If the developing hereditary breast cancer [41, 42]. In the questionnaire was not returned within three weeks, present study “the event” was defined as “cancer in the a reminder and a copy of the questionnaire were sent. family”. The items were related to this situation. The The study was approved by the institutional review boards cut-off score of 20 on the IES subscale was used to of the three participating hospitals. indicate a “clinically important reaction” [43, 44]. C Co on ns se eq qu ue en nc ce es s ffo or r ffa am miilly y r re ella attiio on ns sh hiip ps s: : Respondents M Me ea as su ur re es s were first asked whether their relationship with family members had changed due to the genetic counselling S So oc ciio od de em mo og gr ra ap ph hiic c a an nd d c clliin niic ca all d da atta a: : The following process (response categories: “improved”, “deteriorated”, data were obtained from the medical records and/or “changed but not for the better or worse”, “no change”). the questionnaire: age, gender, marital status, level of Three additional questions were posed regarding education, number and age of children, personal communication with relatives about the genetic history of cancer (i.e. treated for cancer, treated for counselling process, i.e. did the respondent experience benign polyps, not treated for cancer); actual cancer problems: with (1) first-degree relatives (siblings, parents), risk (1. proven carrier of HNPCC mutation, 2. clinical (2) their children, or (3) second-degree relatives (response diagnosis of HNPCC, i.e. meeting the Amsterdam-I categories: yes, no, not applicable). criteria, and 3. non-carrier, i.e. mutation-negative in C Co on ns se eq qu ue en nc ce es s ffo or r ffu uttu ur re e p plla an nn niin ng g a an nd d s so oc ciia all iis ss su ue es s: : a family with a proven pathogenic mutation); and dates Respondents were asked a single question about and number of counselling sessions. whether the genetic counselling had had an impact P Pe er rc ce eiiv ve ed d r riis sk k: : Respondents were asked to report their on their plans for having children. Additionally, a series perceived risk of developing cancer (again) relative to of questions was posed as to whether, due to the that of the “average person in the Dutch population” (item genetic counselling, problems had been experienced adapted from Lerman, Seay, et al. [37]). The response with intimate relationships, choice or change in categories were: “much higher”, “somewhat higher”, employment, obtaining a mortgage, or obtaining life “the same”, and “lower”. insurance (response categories for each topic: yes, IIn nv vo ollv ve em me en ntt iin n tth he e d diis se ea as se e p pr ro oc ce es ss s o off a a r re ella attiiv ve e: : no, not applicable). These questions were based on Since personal involvement in the illness experience of a questionnaire used previously in a study of long-term a relative is hypothesized to be related to the level of survivors of Hodgkin’s lymphoma [45]. cancer-related distress [38], respondents were first asked to report the number of first and second degree S St ta at ti is st ti ic ca al l a an na al ly ys se es s relatives with colorectal cancer, and then the extent to which they were involved in the disease process of one Descriptive statistics were generated to characterize or more of those relatives (response categories: “very the study sample in terms of demographics and clinical much”, “quite a bit”, “a little”, “not at all”). background, and to describe the experienced P Pr ro offe es ss siio on na all s su up pp po or rtt: : To investigate whether consequences of genetic counselling. Levels of cancer- professional psychological counselling for cancer specific distress were examined as a function of worries during the past 10 years (with a psychologist, sociodemographic, clinical and psychosocial variables. psychiatrist, social worker or general practitioner) was Depending on the level of measurement and associated with present levels of distress, a comparison was made between those who had ever had such number of categories, Student’s t-test, chi-square contact during the past 10 years and those who had statistic or analyses of variance were used. In the case never had such contact in that period. of multiple comparisons, the post-hoc Scheffe test was H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson used to investigate subgroup differences. A regression for regression analyses was used, inputting family analysis was carried out to determine which variables membership as a random factor in the model. were significantly (i.e. p<0.05) associated with psychological distress following the genetic counselling. R Re es su ulltts s In this analysis, sociodemographic variables (age, gender, level of education), clinical variables (personal R Re es sp po on ns se e history of cancer, actual risk, time since last counselling, number of face-to-face counselling sessions with In total, 143 individuals who were counselled for clinical geneticist) and psychosocial variables HNPCC in the period 1986 to 1998 were invited to (perceived risk, professional support in the past, participate in the study. Of these, 116 (81%) completed involvement in disease process of relative) were entered the questionnaire. The respondents were, on average, in the model. To control for potential clustering effects older than the non-respondents (mean age = 43.4 years caused by the fact that some participants were (sd=11.2) versus 37.9 years (sd=13.0); p=0.05). No members of the same family, a general linear model statistically significant differences were found between the respondents and the non-respondents for gender, personal history of cancer, risk of developing cancer, T Ta ab blle e 1 1.. Sociodemographic and clinical characteristics of respondents hospital, or number of affected first-degree relatives. (N=116) The 116 respondents stemmed from 29 families. C Ch ha ar ra ac ctte er riis sttiic cs s N N % % g ge en nd de er r S So oc ci io od de em mo og gr ra ap ph hi ic c a an nd d c cl li in ni ic ca al l c ch ha ar ra ac ct te er ri is st ti ic cs s male 60 52 Table 1 shows that, in the responding group, men female 56 48 and women were equally represented, and 60% had never had any signs (precursors) of colorectal cancer. In lle ev ve ell o off e ed du uc ca attiio on n total, 31 individuals were found to be a carrier of an low 40 35 HNPCC mutation (20 hMLH1, 11 hMSH2). Twenty-five individuals were found not to be a carrier of a known moderate 43 37 mutation in their family (non-carriers). In addition, the high 32 28 mutation status of 60 individuals was unknown; however, their family history was consistent with HNPCC. Of this missing 1 – group, 12 had themselves undergone genetic testing for ttr re ea atte ed d ffo or r c ca an nc ce er r MMR mutations, resulting in an inconclusive test result. Others had not undergone testing themselves. No yes 21 18 statistically significant differences in distress levels were benign polyp 25 22 found between those individuals classified as “clinical HNPCC” who had and who had not undergone genetic no 70 60 testing. For this reason, and because of their comparable a ac cttu ua all r riis sk k risk estimation and screening advice, these counselees were taken together as one group. mutation carriers 31 27 The mean time elapsed between the final counselling clinical diagnosis of HNPCC 60 52 session and the completion of the questionnaire was 3.8 years (sd=2.3). Prior to the contacts with the clinical non-carrier 25 22 geneticist most individuals had had a standard intake ttiim me e s siin nc ce e lla as stt c co ou un ns se elllliin ng g ((y ye ea ar rs s)) session with a genetic nurse. In addition, 29% of the respondents had a single face-to-face counselling mean (SD) 3.8 (2.3) session with the clinical geneticist (physician); the median (range) 3 (1-11) remaining 71% had two or more such sessions. n nu um mb be er r o off c co ou un ns se elllliin ng g s se es ss siio on ns s D Diis sttrre es ss s mean (SD) 2.4 (2.0) 132 29 The mean score on the IES-Intrusion subscale was 5.3 (sd=6.9; n=108). Six percent (n=6) scored above 2 or more 84 71 the cut-off score of 20, indicating a clinically significant H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling T Ta ab blle e 2 2.. Levels of cancer-related distress (IES-intrusion, n=108*) as level of cancer-specific distress (1 carrier, a function of sociodemographic, clinical and psychosocial factors 4 clinical HNPCC, 1 non-carrier). Table 2 displays the mean scores and standard deviations on the distress C Ch ha ar ra ac ctte er riis sttiic cs s IIE ES S scale as a function of various sociodemographic and n n m me ea an n ((s sd d)) p p- -v va allu ue e clinical characteristics. Those who had received professional psychosocial support in the past reported a ag ge e significantly higher levels of current cancer-specific distress 20-35 years 30 5.2 (6.1) (p=0.002) than those who did not receive such support. In addition, those who had been treated for cancer or 36-50 years 48 4.4 (5.8) 0.31 a benign polyp tended to report more cancer-specific 51-75 years 30 6.9 (8.8) distress than healthy individuals (p=0.06). No statistically significant differences were found in levels of cancer- g ge en nd de er r specific distress as a function of age, gender, level of male 58 4.6 (7.0) 0.24 education, actual or perceived cancer risk, close involvement in the disease process of one or more female 50 6.1 (6.7) relatives, or time since last counselling. lle ev ve ell o off e ed du uc ca attiio on n In the regression analysis, only one variable was low 37 6.3 (7.9) found to be significantly associated with cancer-specific middle 40 6.0 (7.2) 0.12 distress at the multivariate level: “having had contact with a professional psychosocial worker in the past high 30 3.1 (4.5) 10 years for cancer risk” (p=0.05). Gender was not a ac cttu ua all r riis sk k significantly associated with cancer-specific distress, but women tended to report more distress then men mutation carriers 29 5.9 (5.8) (p=0.06). clinical HNPCC 56 5.7 (7.6) 0.47 C Co on ns se eq qu ue en nc ce es s o of f c co ou un ns se el ll li in ng g f fo or r f fa am mi il ly y r re el la at ti io on ns sh hi ip ps s non-carriers 23 3.7 (6.3) p pe er rc ce eiiv ve ed d r riis sk k Table 3 shows that 7 (9%) of the 79 individuals with children experienced problems in communication about much higher 32 5.2 (6.2) genetic counselling with their children. Additionally, somewhat higher 36 5.2 (6.0) 0.96 7 respondents (7%) reported experiencing problems in discussing this issue with their first-degree relatives, and same 31 4.8 (6.8) another 7 (8%) with their second-degree relatives. lower 6 3.8 (6.4) Of the 109 counselees who answered the questions on family relationships, five (5%) reported that family ttr re ea atte ed d ffo or r c ca an nc ce er r relationships had worsened as a result of genetic yes 20 7.5 (6.9) counselling. In 12 cases (11%) relationships had benign polyp 23 7.0 (8.9) 0.06 improved, and in another 14 (13%) relationships had changed, but not for the better or the worse. For the no 65 4.1 (5.8) majority of the respondents genetic counselling had p pr ro offe es ss siio on na all s su up pp po or rtt had no significant impact on family relationships. ever 16 10.1 (6.8) 0.002 C Co on ns se eq qu ue en nc ce es s o of f g ge en ne et ti ic c c co ou un ns se el ll li in ng g f fo or r s so oc ci ia al l i is ss su ue es s never 91 4.4 (6.6) Only 3 respondents (5%) reported that genetic iin nv vo ollv ve em me en ntt iin n d diis se ea as se e p pr ro oc ce es ss s o off r re ella attiiv ve e counselling had had an impact on family planning very much 63 6.3 (6.8) (none were carriers), only 1 respondent (2%) reported having experienced a problem with employment, and quite a bit 23 5.4 (6.5) 0.24 1 respondent reported problems (2%) in obtaining a little/not at all 21 3.6 (7.3) a mortgage. Five individuals (8%), with diverse actual risks, had experienced a problem in obtaining life * Due to missing values for some of the variables, the total number of insurance due to genetic counselling. individuals in these analyses is 108. H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson T Ta ab blle e 3 3.. Family communication and social issues Gritz et al. [19], who found pre-genetic test mood disturbance and lower quality of life to be the only Q Qu ue es sttiio on ns s a ap pp plliic ca ab blle e y ye es s % % significant predictors of distress after genetic tto o tto otta all n n counselling. However, it should be noted that the mean N N score of the distressed group was still below the cut- D Diid d y yo ou u e ex xp pe er riie en nc ce e p pr ro ob blle em ms s iin n tta allk kiin ng g a ab bo ou utt g ge en ne ettiic c c co ou un ns se elllliin ng g… … off score to be of clinical relevance. One might argue that the assessment of “previous – to your children 79 7 9 contact with a psychosocial worker” is a proxy for st – to 1 degree relatives 103 7 7 distress. However, we assessed current levels of cancer- (parents, brothers, sisters) specific distress, versus previous psychosocial support nd – to 2 degree relatives 93 7 8 during the past 10 years, indicating only a possible partial overlap. Furthermore, when excluding the D Diid d y yo ou u e ex xp pe er riie en nc ce e c ch ha an ng ge es s iin n r re ella attiio on ns sh hiip ps s w wiitth h r re ella attiiv ve es s d du ue e variable “previous support” from the regression tto o g ge en ne ettiic c c co ou un ns se elllliin ng g? ? analyses, the only factor associated with cancer-specific – worse with some relatives 109 5 5 distress was female gender (p=0.02). Higher self- reported levels of distress among women have been – improved with some relatives 109 12 11 reported in previous studies [47-50]. No other – changed, but not better or worse 109 14 13 variables contributed significantly to the prediction of cancer-specific distress at the multivariate level, – no change in relationships 109 81 74 although, at the univariate level, cancer history tended D Diid d y yo ou u e ex xp pe er riie en nc ce e p pr ro ob blle em ms s d du ue e tto o g ge en ne ettiic c c co ou un ns se elllliin ng g iin n...... to be associated with cancer-specific distress. It has previously been reported that a higher – family planning 56 3 5 perceived breast cancer risk is associated with higher – (getting a) relationship 66 0 – levels of distress in high-risk women [51]. Our findings do not confirm these results in the case of colorectal – choice or change of job 67 1 2 cancer. This might suggest that those at risk for – obtaining a mortgage 67 1 2 colorectal cancer have more confidence in early screening and treatment options than those at risk for – obtaining life insurance 66 5 8 breast/ovarian cancer. F Fa am mi il ly y r re el la at ti io on ns sh hi ip ps s D Diis sc cu us ss siio on n Genetic counselling was found to have had This study is the first to report the results of a long- a negative impact on family relationships in only 5% term (i.e. more than one year) follow-up of the of the cases. The impact might have been larger during psychosocial consequences of genetic counselling for the first year, with difficulties in family communication familial colorectal cancer. decreasing over time. We are currently conducting a longitudinal study of the psychosocial and behavioural D Di is st tr re es ss s impact of genetic counselling for colorectal cancer. In this study, we will be able to identify prospectively the On average, four years after the completion of important predictors of distress and family functioning, genetic counselling and/or testing for colorectal cancer, and to explore the effect of time on psychosocial well- only a small minority (6%) of counselled individuals -being in more detail. reported having clinically significant levels of cancer- specific distress. These rates are comparable to those reported by Coyne et al. [46] in a study of women at S So oc ci ia al l c co on ns se eq qu ue en nc ce es s high-risk for breast cancer. Only a few counselees reported having experienced Previous contact with a professional psychosocial problems in obtaining life insurance (8%), choice or worker for cancer risk was associated significantly with change of employment (2%), or obtaining a mortgage current levels of cancer-specific distress. The most (2%). These low levels could be due to the fact that, in plausible explanation might be that those most distressed are most likely to seek psychosocial help the Netherlands, there is universal health insurance and that psychological distress is stable and persists coverage, and disclosure of genetic status can only be over time. This explanation is in line with the results of requested when obtaining a mortgage or life-insurance the review of Broadstock et al. [12] and the study of valued at more than 160,000 Euros. H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling 2. Slattery ML, Kerber RA. Family history of cancer and colon cancer None of the carriers in our study reported negative risk: the Utah Population Database. J Natl Cancer Inst 1994; consequences for family planning. This is in contrast to 86: 1618-1626. the results reported by Smith et al. in a study of women 3. Petersen GM, Brensinger JD, Johnson KA, Giardiello FM. at risk for breast cancer [36]. This difference might be Genetic testing and counseling for hereditary forms of colorectal explained by cultural differences between the U.S. and cancer. Cancer 1999; 86 (11 Suppl): 2540-2550. 4. Leach FS, Nicolaides NC, Papadopoulos N, Liu B, Jen J, the Netherlands and/or differences in cancer type. Parsons R, Peltomaki P, Sistonen P, Aaltonen LA, Nystrom-Lahti M, et al. Mutations of a mutS homolog in hereditary nonpolyposis S St tr re en ng gt th hs s a an nd d l li im mi it ta at ti io on ns s o of f t th he e s st tu ud dy y colorectal cancer. Cell 1993; 75: 1215-1225. 5. Fishel R, Lescoe MK, Rao MR, Copeland NG, Jenkins NA, The high response rate (81%) suggests that the results Garber J, Kane M, Kolodner R. The human mutator gene homolog MSH2 and its association with hereditary nonpolyposis are representative of the population requesting genetic colon cancer. Cell 1994; 77: 167. counselling and testing for colorectal cancer. The follow- 6. Papadopoulos N, Nicolaides NC, Wei YF, Ruben SM, Carter KC, up period (up to 11 years) is among the longest reported Rosen CA, Haseltine WA, Fleischmann RD, Fraser CM, Adams in the literature. However, due to the cross-sectional study MD, et al. Mutation of a mutL homolog in hereditary colon design, one can only speak in terms of associations cancer. Science 1994; 263: 1625-1629. 7. Bronner CE, Baker SM, Morrison PT, Warren G, Smith LG, between various “predictor variables” and distress. Lescoe MK, Kane M, Earabino C, Lipford J, Lindblom A, et al. Without pre-counselling data, it is not possible to Mutation in the DNA mismatch repair gene homologue hMLH1 establish with certainty whether the results reflect change is associated with hereditary non-polyposis colon cancer. Nature from pre-counselling levels of distress. Nevertheless, our 1994; 368: 258-261. data indicate that, in the long-term, only a small minority 8. Vasen HF, Wijnen JT, Menko FH, Kleibeuker JH, Taal BG, of individuals suffer from clinically significant levels of Griffioen G, Nagengast FM, Meijers-Heijboer EH, Bertario L, Varesco L, Bisgaard ML, Mohr J, Fodde R, Khan PM. Cancer cancer-specific distress. This contrasts with the literature risk in families with hereditary nonpolyposis colorectal cancer on the short-term prevalence of distress, where it is diagnosed by mutation analysis. Gastroenterology 1996; 110: reported that as many as one-quarter of individuals who 1020-1027. have undergone genetic counselling and/or testing for 9. 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Psychological consequences would encourage the development of more detailed, of predictive genetic testing: a systematic review. Eur J Hum Gen standardized questionnaires to assess the impact of 2000; 8: 731-738. genetic counselling on family relationships. 13. Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S. Psychological Finally, clinical workers should be aware that impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 2004; 96: 122-133. counselees who have been in contact with 14. Meiser B, Collins V, Warren R, Gaff C, St John DJ, Young MA, a professional psychosocial worker in relation to their Harrop K, Brown J, Halliday J. Psychological impact of genetic cancer risk during the past 10 years may be at testing for hereditary non-polyposis colorectal cancer. Clin Genet increased risk of experiencing higher levels of distress 2004; 66: 502-511. over the subsequent years. This knowledge can be used 15. 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Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genet Test 2002; 6: 291-302. R Re ef fe er re en nc ce es s 18. Vernon SW, Gritz ER, Peterson SK, Amos CI, Perz CA, Baile WF, Lynch PM. Correlates of psychologic distress in colorectal cancer 1. Lynch HT, de la Chapelle A. Hereditary colorectal cancer. N Engl patients undergoing genetic testing for hereditary colon cancer. J Med 2003; 348: 919-932. Health Psychol 1997; 16: 73-86. H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson 19. Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts genetic testing programme for hereditary non-polyposis colorectal BG, Amos CI, Frazier ML, Lynch PM. Psychological impact of cancer. Community Genet 2001; 4: 219-224. genetic testing for hereditary nonpolyposis colorectal cancer. 36. Smith KR, Ellington L, Chan AY, Croyle RT, Botkin JR. Fertility J Clin Oncol 2005; 23: 1902-1910. intentions following testing for a BRCA1 gene mutation. Cancer 20. Aktan-Collan K, Haukkala A, Mecklin JP, Uutela A, Kaariainen Epidemiol Biomarkers Prev 2004; 13: 733-740. H. Psychological consequences of predictive genetic testing for 37. Lerman C, Seay J, Balshem A, Audrain J. Interest in genetic hereditary non-polyposis colorectal cancer (HNPCC): a testing among first-degree relatives of breast cancer patients. prospective follow-up study. Int J Cancer 2001; 93: 608-611. Am J Med Genet 1995; 57: 385-392. 21. Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E. 38. Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J. Psychological Predictive testing for hereditary non-polyposis colorectal cancer: functioning of daughters of breast cancer patients. Part II: motivation, illness representations and short-term psychological Characterizing the distressed daughter of the breast cancer impact. Patient Educ Couns 2004; 55: 265-274. patient. Psychosomatics 1992; 33: 171-179. 22. Claes E, Evers-Kiebooms G, Denayer L, Decruyenaere M, 39. Horowitz M, Wilner N, Alvarez W. Impact of Event Scale: a measure Boogaerts A, Philippe K, Legius E. Predictive genetic testing for of subjective stress. Psychosom Med 1979; 41: 209-218. hereditary breast and ovarian cancer: psychological distress and 40. Brom D, Kleber RJ. De schok verwerkingslijst [Impact of Event illness representations 1 year following disclosure. J Genet Scale]. Ned Tijdschr Psychol 1985; 40: 164-168. Couns 2005; 14: 349-363. 41. Zakowski SG, Valdimarsdottir HB, Bovbjerg DH, Borgen P , Holland 23. Collins V, Halliday J, Warren R, Williamson R. Cancer worries, J, Kash K, Miller D, Mitnick J, Osborne M, Van Zee K. 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Kaasa S, Malt U, Hagen S, Wist E, Moum T, Kvikstad A. Press 1996; 249-273. Psychological distress in cancer patients with advanced disease. 26. Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Radiother Oncol 1993; 27: 193-197. Kohlmann WK, Gritz ER. How families communicate about 45. van Tulder MW, Aaronson NK, Bruning PF. The quality of life of HNPCC genetic testing: findings from a qualitative study. Am J long-term survivors of Hodgkin’s disease. Ann Oncol 1994; 5: Med Genet C Semin Med Genet 2003; 119: 78-86. 153-158. 27. Mesters I, Ausems M, Eichhorn S, Vasen H. Informing one’s 46. Coyne JC, Benazon NR, Gaba CG, Calzone K, Weber BL. family about genetic testing for hereditary non-polyposis Distress and psychiatric morbidity among women from high-risk colorectal cancer (HNPCC): a retrospective exploratory study. breast and ovarian cancer families. J Consult Clin Psychol 2000; Fam Cancer 2005; 4: 163-167. 68: 864-874. 28. Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, 47. Keller M, Henrich G. Illness-related distress: does it mean the Denayer L, Legius E. Communication with close and distant same for men and women? Gender aspects in cancer patients’ relatives in the context of genetic testing for hereditary breast distress and adjustment. Acta Oncol 1999; 38: 747-755. and ovarian cancer in cancer patients. Am J Med Genet 2003; 48. Lengua LJ, Stormshak EA. Gender, Gender roles, and 116: 11-19. Personality: Gender Differences in the Prediction of Coping and 29. Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod Psychological Symptoms. Sex Roles 2000; 43: 787-820. S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D. All in the 49. McDonough P, Walters V. Gender and health: reassessing family: evaluation of the process and content of sisters’ patterns and explanations. Soc Sci Med 2001; 52: 547-559. communication about BRCA1 and BRCA2 genetic test results. 50. Northouse LL, Mood D, Templin T, Mellon S, George T. Couples’ Am J Med Genet 2002; 107: 143-150. patterns of adjustment to colon cancer. Soc Sci Med 2000; 30. DudokdeWit AC, Tibben A, Frets PG, Meijers-Heijboer EJ, 50: 271-284. Devilee P, Klijn JG, Oosterwijk JC, Niermeijer MF. BRCA1 in the 51. Lerman C, Schwartz M. Adherence and psychological adjustment family: a case description of the psychological implications. Am among women at high risk for breast cancer. Breast Cancer Res J Med Genet 1997; 71: 63-71. Treat 1993; 28: 145-155. 31. Wilson BJ, Forrest K, van Teijlingen ER, McKee L, Haites N, Matthews E, Simpson SA. Family communication about genetic risk: the little that is known. Community Genet 2004; 7: 15-24. 32. Bassford TL, Hauck L. Human Genome Project and cancer: the ethical implications for clinical practice. Semin Oncol Nurs 1993; 9: 134-138. 33. Norum J, Tranebjaerg L. Health, life and disability insurance and hereditary risk for breast or colorectal cancer. Acta Oncol 2000; 39: 189-93. 34. Armstrong K, Weber B, Fitzgerald G, Hershey JC, Pauly MV, Lemaire J, Subramanian K, Asch DA. Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A 2003; 120: 359-364. 35. Aktan-Collan K, Haukkala A, Kaariainen H. Life and health insurance behaviour of individuals having undergone a predictive 66 H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Hereditary Cancer in Clinical Practice Springer Journals

Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling

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Springer Journals
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Copyright © 2007 by The Author(s)
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Medicine & Public Health; Oncology; Cancer Research; Human Genetics
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1897-4287
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10.1186/1897-4287-5-2-59
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19725985
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Abstract

Hereditary Cancer in Clinical Practice 2007; 5(2) pp. 59-66 Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling 1 2 3 4 1 1 1 Eveline M.A. Bleiker , Fred H. Menko , Irma Kluijt , Babs G. Taal , Miranda A. Gerritsma , Lidwina D.V. Wever , Neil K. Aaronson Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam Department of Clinical Genetics and Human Genetics, VU University Medical Center, Amsterdam Department of Clinical Genetics, Academic Medical Center, Amsterdam Department of Gastroenterology, The Netherlands Cancer Institute, Amsterdam Key words: colorectal cancer, HNPCC , genetic counselling, psychosocial impact Corresponding author: Eveline M.A . Bleiker, Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands, tel.: +31-20-512.6072, fax: +31-20-512.2322, e -mail: e.bleiker@nki.nl Submitted: 2 May 2007 Accepted: 22 May 2007 A Ab bs sttrra ac ctt B Ba ac ck kg gr ro ou un nd d: : This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling. M Me etth ho od ds s: : In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986-1998 completed a self-report questionnaire by mail. R Re es su ulltts s: : 116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%). C Co on nc cllu us siio on n: : On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems. and colon screening recommendations were based on IIn nttrro od du uc cttiio on n family history only [3]. Since 1993, genetic testing for Between 1 and 6% of all colorectal cancers represent HNPCC has been possible for at-risk families [4-7]. a well-delineated genetic syndrome, hereditary Carriers of HNPCC-related mutations have a lifetime nonpolyposis colorectal cancer (HNPCC or Lynch risk of up to 80% of developing colorectal cancer [8]. syndrome) [1, 2]. Before 1993, cancer risk estimates Those meeting the clinical criteria for HNPCC [9] and H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson the proven carriers of HNPCC-related mismatch repair cancer; however, no evidence of actual insurance (MMR) genes are advised to undergo a colonoscopy discrimination from BRCA1/2 testing has been every 1-2 years [10]. In a recent paper, we reported on observed [34]. compliance with recommended colon-screening advice Discriminatory practices related to employment, [11]. The focus of the current paper is on the long-term life-insurance or obtaining a mortgage have not yet psychosocial impact of genetic counselling for hereditary been documented in the Netherlands and, to our nonpolyposis colorectal cancer. knowledge, no systematic study of this issue has been Most studies on the psychosocial consequences of carried out in this area of cancer genetics. Only one genetic counselling and testing for breast or colorectal Finnish study reported on individuals tested for HNPCC: cancer have not shown significantly increased mean no differences were found between carriers and non- levels of psychological distress during the 12 months carriers in life or health insurance coverage within immediately following testing [12-22]. However, despite 12 months after genetic counselling and testing [35]. the fact that mean levels of distress are not increased, it Finally, with regard to family planning, it has been reported that individuals who tested positive for a BRCA1 has been reported that 3% to 24% of individuals experience heightened levels of distress after genetic gene mutation had more negative attitudes towards counselling and/or testing for colorectal cancer [16-18]. reproductive intentions than non-carriers [36]. To our Factors that are reported to be associated with knowledge, no studies have investigated this issue in heightened levels of distress during or after counselling HNPCC. The present study was carried out to investigate: (1) or testing include: high perceived cancer risk [23], levels of cancer-specific distress more than one year younger age [23], education level [18, 23] (with conflicting findings with regard to the direction of the after genetic counselling for HNPCC; (2) the association), female gender [18], baseline mood association between sociodemographic, clinical and disturbance [19], genetic test result (carriers and those psychosocial factors and levels of distress; (3) the awaiting test results) [16], fewer sources of social contacts impact of genetic counselling on family relationships; and (4) social consequences of genetic counselling. [18, 19], and less satisfaction with those contacts [18]. Most studies on genetic counselling for cancer have generally focused on the first 12 months after counselling M Me etth ho od ds s [12, 13]. However, in order to better counsel high-risk families, we need to understand the long-term impact of P Pa ar rt ti ic ci ip pa an nt ts s undergoing genetic counselling and mutation testing [24]. Genetic counselling may not only affect the individual This cross-sectional study recruited all individuals being counselled, but also family relationships [25]. who were counselled between 1986 and 1998 at one Although most individuals from HNPCC families have of three family cancer clinics in Amsterdam for HNPCC. been found to be willing to share information about These individuals represent a clinical case series. The HNPCC with family members [26], the initial clinic participating hospitals were the VU University Medical attendee may find it particularly difficult to inform Center (VUMC), the Netherlands Cancer Institute – relatives, especially distant relatives [27, 28] or in Antoni van Leeuwenhoek Hospital (NKI-AVL), and the emotionally distant relationships [29], since the Academic Medical Center (AMC). Included were all information may have a disturbing impact on family individuals who met the Amsterdam-I criteria, [9] and relationships [30]. However, no information is currently had completed genetic counselling for HNPCC. available on the extent to which genetic counselling Additional inclusion criteria were basic fluency in Dutch, affects family relationships in the years following genetic having had at least one face-to-face counselling session counselling and testing for HNPCC [31]. with a clinical geneticist (physician), having been Information provided during genetic counselling/ informed about the risk of developing colorectal cancer testing may also have significant consequences in the (again), and not being in a terminal stage of illness. areas of insurance, employment and family planning [32]. A common concern is that personal information G Ge en ne et ti ic c c co ou un ns se el ll li in ng g about the results of genetic counselling may be required by insurance companies, and that this may In this paper we use the term “genetic counselling” result in limited coverage, increased costs, or outright to refer to the entire counselling process. This includes denial of insurance [33]. This fear of insurance an intake session during which a pedigree is obtained, discrimination has been reported to be associated with and one or more counselling sessions with a genetic the decision not to undergo genetic testing for breast counsellor or clinical geneticist during which H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling a diagnosis is made, risk counselling is provided, and C Ca an nc ce er r- -s sp pe ec ciiffiic c d diis sttr re es ss s: : The Intrusion subscale of preventive health recommendations are discussed. The the Impact of Event Scale (IES) [39] was used to assess risk estimation can be based on the family history only, the frequency and severity of intrusive thoughts about or also on the results of a DNA test. If a family meets the familial occurrence of colorectal cancer. The the clinical criteria for HNPCC [9] DNA testing (testing Intrusion scale consists of seven Likert-type items for MMR genes) is usually offered. (response categories: “not at all” to “often”). The Dutch translation of the IES [40] has proven to be a valid and reliable instrument for assessing event-specific P Pr ro oc ce ed du ur re es s psychological distress (Cronbach’s alpha of the All eligible individuals received a letter from their Intrusion subscale in the present study = 0.89). The clinical geneticist explaining the aim of the study, and Intrusion subscale has also proven to be a valid and a self-report questionnaire. The completed questionnaire reliable instrument in populations at increased risk of could be returned in a postage-free envelope. If the developing hereditary breast cancer [41, 42]. In the questionnaire was not returned within three weeks, present study “the event” was defined as “cancer in the a reminder and a copy of the questionnaire were sent. family”. The items were related to this situation. The The study was approved by the institutional review boards cut-off score of 20 on the IES subscale was used to of the three participating hospitals. indicate a “clinically important reaction” [43, 44]. C Co on ns se eq qu ue en nc ce es s ffo or r ffa am miilly y r re ella attiio on ns sh hiip ps s: : Respondents M Me ea as su ur re es s were first asked whether their relationship with family members had changed due to the genetic counselling S So oc ciio od de em mo og gr ra ap ph hiic c a an nd d c clliin niic ca all d da atta a: : The following process (response categories: “improved”, “deteriorated”, data were obtained from the medical records and/or “changed but not for the better or worse”, “no change”). the questionnaire: age, gender, marital status, level of Three additional questions were posed regarding education, number and age of children, personal communication with relatives about the genetic history of cancer (i.e. treated for cancer, treated for counselling process, i.e. did the respondent experience benign polyps, not treated for cancer); actual cancer problems: with (1) first-degree relatives (siblings, parents), risk (1. proven carrier of HNPCC mutation, 2. clinical (2) their children, or (3) second-degree relatives (response diagnosis of HNPCC, i.e. meeting the Amsterdam-I categories: yes, no, not applicable). criteria, and 3. non-carrier, i.e. mutation-negative in C Co on ns se eq qu ue en nc ce es s ffo or r ffu uttu ur re e p plla an nn niin ng g a an nd d s so oc ciia all iis ss su ue es s: : a family with a proven pathogenic mutation); and dates Respondents were asked a single question about and number of counselling sessions. whether the genetic counselling had had an impact P Pe er rc ce eiiv ve ed d r riis sk k: : Respondents were asked to report their on their plans for having children. Additionally, a series perceived risk of developing cancer (again) relative to of questions was posed as to whether, due to the that of the “average person in the Dutch population” (item genetic counselling, problems had been experienced adapted from Lerman, Seay, et al. [37]). The response with intimate relationships, choice or change in categories were: “much higher”, “somewhat higher”, employment, obtaining a mortgage, or obtaining life “the same”, and “lower”. insurance (response categories for each topic: yes, IIn nv vo ollv ve em me en ntt iin n tth he e d diis se ea as se e p pr ro oc ce es ss s o off a a r re ella attiiv ve e: : no, not applicable). These questions were based on Since personal involvement in the illness experience of a questionnaire used previously in a study of long-term a relative is hypothesized to be related to the level of survivors of Hodgkin’s lymphoma [45]. cancer-related distress [38], respondents were first asked to report the number of first and second degree S St ta at ti is st ti ic ca al l a an na al ly ys se es s relatives with colorectal cancer, and then the extent to which they were involved in the disease process of one Descriptive statistics were generated to characterize or more of those relatives (response categories: “very the study sample in terms of demographics and clinical much”, “quite a bit”, “a little”, “not at all”). background, and to describe the experienced P Pr ro offe es ss siio on na all s su up pp po or rtt: : To investigate whether consequences of genetic counselling. Levels of cancer- professional psychological counselling for cancer specific distress were examined as a function of worries during the past 10 years (with a psychologist, sociodemographic, clinical and psychosocial variables. psychiatrist, social worker or general practitioner) was Depending on the level of measurement and associated with present levels of distress, a comparison was made between those who had ever had such number of categories, Student’s t-test, chi-square contact during the past 10 years and those who had statistic or analyses of variance were used. In the case never had such contact in that period. of multiple comparisons, the post-hoc Scheffe test was H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson used to investigate subgroup differences. A regression for regression analyses was used, inputting family analysis was carried out to determine which variables membership as a random factor in the model. were significantly (i.e. p<0.05) associated with psychological distress following the genetic counselling. R Re es su ulltts s In this analysis, sociodemographic variables (age, gender, level of education), clinical variables (personal R Re es sp po on ns se e history of cancer, actual risk, time since last counselling, number of face-to-face counselling sessions with In total, 143 individuals who were counselled for clinical geneticist) and psychosocial variables HNPCC in the period 1986 to 1998 were invited to (perceived risk, professional support in the past, participate in the study. Of these, 116 (81%) completed involvement in disease process of relative) were entered the questionnaire. The respondents were, on average, in the model. To control for potential clustering effects older than the non-respondents (mean age = 43.4 years caused by the fact that some participants were (sd=11.2) versus 37.9 years (sd=13.0); p=0.05). No members of the same family, a general linear model statistically significant differences were found between the respondents and the non-respondents for gender, personal history of cancer, risk of developing cancer, T Ta ab blle e 1 1.. Sociodemographic and clinical characteristics of respondents hospital, or number of affected first-degree relatives. (N=116) The 116 respondents stemmed from 29 families. C Ch ha ar ra ac ctte er riis sttiic cs s N N % % g ge en nd de er r S So oc ci io od de em mo og gr ra ap ph hi ic c a an nd d c cl li in ni ic ca al l c ch ha ar ra ac ct te er ri is st ti ic cs s male 60 52 Table 1 shows that, in the responding group, men female 56 48 and women were equally represented, and 60% had never had any signs (precursors) of colorectal cancer. In lle ev ve ell o off e ed du uc ca attiio on n total, 31 individuals were found to be a carrier of an low 40 35 HNPCC mutation (20 hMLH1, 11 hMSH2). Twenty-five individuals were found not to be a carrier of a known moderate 43 37 mutation in their family (non-carriers). In addition, the high 32 28 mutation status of 60 individuals was unknown; however, their family history was consistent with HNPCC. Of this missing 1 – group, 12 had themselves undergone genetic testing for ttr re ea atte ed d ffo or r c ca an nc ce er r MMR mutations, resulting in an inconclusive test result. Others had not undergone testing themselves. No yes 21 18 statistically significant differences in distress levels were benign polyp 25 22 found between those individuals classified as “clinical HNPCC” who had and who had not undergone genetic no 70 60 testing. For this reason, and because of their comparable a ac cttu ua all r riis sk k risk estimation and screening advice, these counselees were taken together as one group. mutation carriers 31 27 The mean time elapsed between the final counselling clinical diagnosis of HNPCC 60 52 session and the completion of the questionnaire was 3.8 years (sd=2.3). Prior to the contacts with the clinical non-carrier 25 22 geneticist most individuals had had a standard intake ttiim me e s siin nc ce e lla as stt c co ou un ns se elllliin ng g ((y ye ea ar rs s)) session with a genetic nurse. In addition, 29% of the respondents had a single face-to-face counselling mean (SD) 3.8 (2.3) session with the clinical geneticist (physician); the median (range) 3 (1-11) remaining 71% had two or more such sessions. n nu um mb be er r o off c co ou un ns se elllliin ng g s se es ss siio on ns s D Diis sttrre es ss s mean (SD) 2.4 (2.0) 132 29 The mean score on the IES-Intrusion subscale was 5.3 (sd=6.9; n=108). Six percent (n=6) scored above 2 or more 84 71 the cut-off score of 20, indicating a clinically significant H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling T Ta ab blle e 2 2.. Levels of cancer-related distress (IES-intrusion, n=108*) as level of cancer-specific distress (1 carrier, a function of sociodemographic, clinical and psychosocial factors 4 clinical HNPCC, 1 non-carrier). Table 2 displays the mean scores and standard deviations on the distress C Ch ha ar ra ac ctte er riis sttiic cs s IIE ES S scale as a function of various sociodemographic and n n m me ea an n ((s sd d)) p p- -v va allu ue e clinical characteristics. Those who had received professional psychosocial support in the past reported a ag ge e significantly higher levels of current cancer-specific distress 20-35 years 30 5.2 (6.1) (p=0.002) than those who did not receive such support. In addition, those who had been treated for cancer or 36-50 years 48 4.4 (5.8) 0.31 a benign polyp tended to report more cancer-specific 51-75 years 30 6.9 (8.8) distress than healthy individuals (p=0.06). No statistically significant differences were found in levels of cancer- g ge en nd de er r specific distress as a function of age, gender, level of male 58 4.6 (7.0) 0.24 education, actual or perceived cancer risk, close involvement in the disease process of one or more female 50 6.1 (6.7) relatives, or time since last counselling. lle ev ve ell o off e ed du uc ca attiio on n In the regression analysis, only one variable was low 37 6.3 (7.9) found to be significantly associated with cancer-specific middle 40 6.0 (7.2) 0.12 distress at the multivariate level: “having had contact with a professional psychosocial worker in the past high 30 3.1 (4.5) 10 years for cancer risk” (p=0.05). Gender was not a ac cttu ua all r riis sk k significantly associated with cancer-specific distress, but women tended to report more distress then men mutation carriers 29 5.9 (5.8) (p=0.06). clinical HNPCC 56 5.7 (7.6) 0.47 C Co on ns se eq qu ue en nc ce es s o of f c co ou un ns se el ll li in ng g f fo or r f fa am mi il ly y r re el la at ti io on ns sh hi ip ps s non-carriers 23 3.7 (6.3) p pe er rc ce eiiv ve ed d r riis sk k Table 3 shows that 7 (9%) of the 79 individuals with children experienced problems in communication about much higher 32 5.2 (6.2) genetic counselling with their children. Additionally, somewhat higher 36 5.2 (6.0) 0.96 7 respondents (7%) reported experiencing problems in discussing this issue with their first-degree relatives, and same 31 4.8 (6.8) another 7 (8%) with their second-degree relatives. lower 6 3.8 (6.4) Of the 109 counselees who answered the questions on family relationships, five (5%) reported that family ttr re ea atte ed d ffo or r c ca an nc ce er r relationships had worsened as a result of genetic yes 20 7.5 (6.9) counselling. In 12 cases (11%) relationships had benign polyp 23 7.0 (8.9) 0.06 improved, and in another 14 (13%) relationships had changed, but not for the better or the worse. For the no 65 4.1 (5.8) majority of the respondents genetic counselling had p pr ro offe es ss siio on na all s su up pp po or rtt had no significant impact on family relationships. ever 16 10.1 (6.8) 0.002 C Co on ns se eq qu ue en nc ce es s o of f g ge en ne et ti ic c c co ou un ns se el ll li in ng g f fo or r s so oc ci ia al l i is ss su ue es s never 91 4.4 (6.6) Only 3 respondents (5%) reported that genetic iin nv vo ollv ve em me en ntt iin n d diis se ea as se e p pr ro oc ce es ss s o off r re ella attiiv ve e counselling had had an impact on family planning very much 63 6.3 (6.8) (none were carriers), only 1 respondent (2%) reported having experienced a problem with employment, and quite a bit 23 5.4 (6.5) 0.24 1 respondent reported problems (2%) in obtaining a little/not at all 21 3.6 (7.3) a mortgage. Five individuals (8%), with diverse actual risks, had experienced a problem in obtaining life * Due to missing values for some of the variables, the total number of insurance due to genetic counselling. individuals in these analyses is 108. H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Eveline M.A. Bleiker, Fred H. Menko, Irma Kluijt, Babs G. Taal, Miranda A. Gerritsma, Lidwina D.V. Wever, Neil K. Aaronson T Ta ab blle e 3 3.. Family communication and social issues Gritz et al. [19], who found pre-genetic test mood disturbance and lower quality of life to be the only Q Qu ue es sttiio on ns s a ap pp plliic ca ab blle e y ye es s % % significant predictors of distress after genetic tto o tto otta all n n counselling. However, it should be noted that the mean N N score of the distressed group was still below the cut- D Diid d y yo ou u e ex xp pe er riie en nc ce e p pr ro ob blle em ms s iin n tta allk kiin ng g a ab bo ou utt g ge en ne ettiic c c co ou un ns se elllliin ng g… … off score to be of clinical relevance. One might argue that the assessment of “previous – to your children 79 7 9 contact with a psychosocial worker” is a proxy for st – to 1 degree relatives 103 7 7 distress. However, we assessed current levels of cancer- (parents, brothers, sisters) specific distress, versus previous psychosocial support nd – to 2 degree relatives 93 7 8 during the past 10 years, indicating only a possible partial overlap. Furthermore, when excluding the D Diid d y yo ou u e ex xp pe er riie en nc ce e c ch ha an ng ge es s iin n r re ella attiio on ns sh hiip ps s w wiitth h r re ella attiiv ve es s d du ue e variable “previous support” from the regression tto o g ge en ne ettiic c c co ou un ns se elllliin ng g? ? analyses, the only factor associated with cancer-specific – worse with some relatives 109 5 5 distress was female gender (p=0.02). Higher self- reported levels of distress among women have been – improved with some relatives 109 12 11 reported in previous studies [47-50]. No other – changed, but not better or worse 109 14 13 variables contributed significantly to the prediction of cancer-specific distress at the multivariate level, – no change in relationships 109 81 74 although, at the univariate level, cancer history tended D Diid d y yo ou u e ex xp pe er riie en nc ce e p pr ro ob blle em ms s d du ue e tto o g ge en ne ettiic c c co ou un ns se elllliin ng g iin n...... to be associated with cancer-specific distress. It has previously been reported that a higher – family planning 56 3 5 perceived breast cancer risk is associated with higher – (getting a) relationship 66 0 – levels of distress in high-risk women [51]. Our findings do not confirm these results in the case of colorectal – choice or change of job 67 1 2 cancer. This might suggest that those at risk for – obtaining a mortgage 67 1 2 colorectal cancer have more confidence in early screening and treatment options than those at risk for – obtaining life insurance 66 5 8 breast/ovarian cancer. F Fa am mi il ly y r re el la at ti io on ns sh hi ip ps s D Diis sc cu us ss siio on n Genetic counselling was found to have had This study is the first to report the results of a long- a negative impact on family relationships in only 5% term (i.e. more than one year) follow-up of the of the cases. The impact might have been larger during psychosocial consequences of genetic counselling for the first year, with difficulties in family communication familial colorectal cancer. decreasing over time. We are currently conducting a longitudinal study of the psychosocial and behavioural D Di is st tr re es ss s impact of genetic counselling for colorectal cancer. In this study, we will be able to identify prospectively the On average, four years after the completion of important predictors of distress and family functioning, genetic counselling and/or testing for colorectal cancer, and to explore the effect of time on psychosocial well- only a small minority (6%) of counselled individuals -being in more detail. reported having clinically significant levels of cancer- specific distress. These rates are comparable to those reported by Coyne et al. [46] in a study of women at S So oc ci ia al l c co on ns se eq qu ue en nc ce es s high-risk for breast cancer. Only a few counselees reported having experienced Previous contact with a professional psychosocial problems in obtaining life insurance (8%), choice or worker for cancer risk was associated significantly with change of employment (2%), or obtaining a mortgage current levels of cancer-specific distress. The most (2%). These low levels could be due to the fact that, in plausible explanation might be that those most distressed are most likely to seek psychosocial help the Netherlands, there is universal health insurance and that psychological distress is stable and persists coverage, and disclosure of genetic status can only be over time. This explanation is in line with the results of requested when obtaining a mortgage or life-insurance the review of Broadstock et al. [12] and the study of valued at more than 160,000 Euros. H He er re ed diit ta ar ry y C Ca an nc ce er r iin n C Clliin niic ca all P Pr ra ac ct tiic ce e 2007; 5(2) Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling 2. Slattery ML, Kerber RA. Family history of cancer and colon cancer None of the carriers in our study reported negative risk: the Utah Population Database. J Natl Cancer Inst 1994; consequences for family planning. 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Hereditary Cancer in Clinical PracticeSpringer Journals

Published: Jun 15, 2007

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