Illness representations and distress in women undergoing screening for familial ovarian cancer

Women with a familial or genetic predisposition to ovarian cancer are at significantly increased risk of developing the disease, and this warrants effective risk management strategies. A clinical trial of ovarian cancer screening (OCS) is being conducted to establish the effectiveness of this risk management strategy. This article reports data from its psychological partner study which aims to evaluate the psychological effects of OCS. Leventhal's Self-Regulatory Model provided the theoretical framework for understanding emotional responses to OCS. The revised Illness Perceptions Questionnaire (IPQ-R) is based on this model and the IPQ-R, adapted to the risk of ovarian cancer, was completed by women (N?=?1999) prior to screening. The original IPQ-R factor structure was not replicated but IPQ-R variables explained 14.70% of the variance in women's ovarian cancer-specific distress after controlling for age, general anxiety and depression. Negative emotional representations of ovarian cancer risk and general anxiety were moderately associated with greater ovarian cancer-specific distress whereas cognitive illness representations were weakly related to ovarian cancer-specific distress. Further analyses of data from the ongoing psychological evaluation are needed to determine the predictive utility of IPQ-R variables in explaining distress during OCS.     

Predictive Genetic Testing for Hereditary Breast and Ovarian Cancer: Psychological Distress and Illness Representations 1 Year Following Disclosure

This prospective study evaluates emotional functioning and illness representations in 68 unaffected women (34 carriers/34 noncarriers) 1 year after predictive testing for BRCA1/2 mutations when offered within a multidisciplinary approach. Carriers had higher subjective risk perception of breast cancer than noncarriers. Carriers who did not have prophylactic oophorectomy had the highest risk perception of ovarian cancer. No differences were found between carriers and noncarriers regarding perceived seriousness and perceived control of breast and ovarian cancer. Mean levels of distress were within normal ranges. Only few women showed an overall pattern of clinically elevated distress. Cancer-specific distress and state-anxiety significantly decreased in noncarriers from pre- to posttest while general distress remained about the same. There were no significant changes in distress in the group of carriers except for ovarian cancer distress which significantly decreased from pre- to posttest. Our study did not reveal adverse effects of predictive testing when offered in the context of a multidisciplinary approach.     

The Relationship Between Psychological Distress and Personality in Women from Families with Familial Breast/Ovarian or Hereditary Non-polyposis Colorectal Cancer in the Absence of Demonstrated Mutations

The aim of this study was to explore associations between mental and cancer-specific distress (psychological distress) and personality traits in healthy women belonging to families with familial cancer and absence of demonstrated mutations. We included 238 healthy women from families with familial breast-ovarian cancer (FBOC) or hereditary non-polyposis colorectal cancer (HNPCC). They responded to a questionnaire including validated instruments for psychological distress and personality traits. Information on demography and cancer-related issues were also collected. Significant associations between psychological distress and personality traits were found in these women. The traits of Optimism and Harm avoidance showed the strongest association with both types of distress. Associations between psychological distress and personality traits were observed in women from families with FBOC or HNPCC that fulfilled clinical criteria for familial breast/ovarian cancer in the absence of demonstrated mutations. Screening for such traits could be helpful in genetic counseling.     

Illness representations and emotion in people with abnormal screening results

The present study examined the relationship of cognitive and emotional representations of illness specified by self-regulation theory on emotional responses of patients with abnormal screening results. Participants were 660 women who received an abnormal cervical smear and 701 men and women who received an abnormal colorectal cancer screening result. Participants completed postal questionnaires containing measures of illness representations and specific emotions. Factor analyses of cause components produced three factors for each sample, corresponding to psychological stress, biological, and behavioural causes. Regression analyses showed that, after controlling for demographic variables, perceived consequences, illness identity, and causal attributions to psychological stress explained significant variance in emotion. Emotional representations also accounted for unique variance in emotional responses. Results indicate congruence in the relationships between illness representations of an emotionally salient event and emotion in patients from the two cancer screening programmes and support the internal validity of self-regulation theory.     

A path analysis of factors associated with distress among first-degree female relatives of women with breast cancer diagnosis.

Patterns and predictors of psychological distress in first-degree female relatives (N = 624) of newly diagnosed breast cancer patients were explored. First-degree female relatives who were high monitors reported greater cancer-specific and general distress than did low monitors. Greater optimism was associated with lower cancer-specific distress. Optimism's effect on general distress was moderated by women's level of monitoring. Greater optimism was associated with lower general distress for both high and low monitors, but the effect was stronger for high monitors than for low monitors. Avoidance and engaged coping were associated with higher distress. A close relationship with the cancer patient was related to higher cancer-specific distress but lower general distress. Further understanding of the process of adjustment in these women awaits longitudinal study.     

Risk Perception and Psychological Distress in Genetic Counselling for Hereditary Breast and/or Ovarian Cancer

Oncological Genetic Counselling (CGO) allows the identification of a genetic component that increases the risk of developing a cancer. Individuals’ psychological reactions are influenced by both the content of the received information and the subjective perception of their own risk of becoming ill or being a carrier of a genetic mutation. This study included 120 participants who underwent genetic counselling for breast and/or ovarian cancer. The aim of the study was to examine the relation between their cancer risk perception and the genetic risk during CGO before receiving genetic test results, considering the influence of some psychological variables, in particular distress, anxiety and depression. Participants completed the following tools during a psychological interview: a socio-demographic form, Cancer Risk Perception (CRP) and Genetic Risk Perception (GRP), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). The data seem to confirm our hypothesis. Positive and significant correlations were found between the observed variables. Moreover, genetic risk perception determined an increase in depressive symptomatology and cancer risk perception led to an increase in anxious symptomatology, specifically in participants during cancer treatment. The present results suggest the importance of assessing genetic and cancer risk perception in individuals who undergo CGO, to identify those who are at risk of a decrease in psychological well-being and of developing greater psychological distress.     

Response to an abnormal ovarian cancer-screening test result: Test of the social cognitive processing and cognitive social health information processing models

All cancer screening tests produce a proportion of abnormal results requiring follow up. Consequently, the cancer-screening setting is a natural laboratory for examining psychological and behavioural response to a threatening health-related event. This study tested hypotheses derived from the social cognitive processing and cognitive–social health information processing models in trying to understand response to an abnormal ovarian cancer (OC) screening test result. Women (n = 278) receiving an abnormal screening test result a mean of 7 weeks earlier were assessed prior to a repeat screening test intended to clarify their previous abnormal result. Measures of disposition (optimism, informational coping style), social environment (social support and constraint), emotional processing, distress, and benefit finding were obtained. Regression analyses indicated greater distress was associated with greater social constraint and emotional processing and a monitoring coping style in women with a family history of OC. Distress was unrelated to social support. Greater benefit finding was associated with both greater social constraint and support and greater distress. The primacy of social constraint in accounting for both benefit finding and distress was noteworthy and warrants further research on the role of social constraint in adaptation to stressful events.     

Health Behaviors and Psychological Distress in Women Initiating BRCA1/2 Genetic Testing: Comparison with Control Population

The study objective was to compare breast cancer screening practices, lifestyle behaviors and psychological distress among 640 women initiating BRCA1/2 testing to those among 9,498 similarly-aged women from the general population. Health behaviors and psychological distress were reported in a self-administered questionnaire at pre-test genetic counseling. Regression analyses indicate that high-risk women were more frequently performing breast cancer screening and, in the case of those previously diagnosed with cancer, were more likely to be non-smokers and physically active than women from general population. However, women initiating BRCA1/2 testing were significantly more distressed than controls. Globally, high-risk women seemed to be well informed about recommendations for women who are at high risk and to have access to screening adapted to their risk level. Given their significant psychological distress, providing minimal psychosocial support to all women undergoing BRCA1/2 testing at pre-test genetic counseling is relevant.     

Factors Associated with Psychological Distress among Women of African Descent at High Risk for BRCA Mutations

Little is known about psychological distress among women of African descent who are at high risk for a BRCA mutation. This is a group for whom breast cancer risk reduction is critical due to the group’s high rates of breast cancer mortality. Distress is important to consider as it may reduce the potential benefit of genetic counseling and negatively affect decision making related to risk reduction. The goals of the current study were to examine breast cancer-specific distress and depressive symptoms in women of African descent at who are at high risk for a BRCA mutation and to identify background factors associated with these outcomes. Participants were 148 high-risk African American and Caribbean women who were part of a larger study that offered participants BRCA counseling at no cost. Participants completed the Impact of Events Scale, which assessed breast cancer-specific distress, and the Center of Epidemiological Studies-Depression Scale, which assessed depressive symptoms. Results of analyses revealed that almost half of the sample achieved scores indicating high and clinically significant breast cancer-specific distress, while almost one-third had clinically significant depression scores. Results further showed that low income was significantly associated with cancer-specific distress, while having a cancer diagnosis was significantly associated with depressive symptoms. These results underscore the need for targeted psychological support throughout the genetic risk assessment process for this particular high-risk group.     

Psychosocial Conditions of Women Awaiting Genetic Counseling: A Population-based Study

The decision whether to undergo genetic counseling for hereditary breast and ovarian cancer is complex. Knowledge about the psychosocial conditions of women who are awaiting counseling is sparse. We aimed to compare the psychosocial conditions of women awaiting genetic counseling with those of women in two reference groups. We included 567 women referred to genetic counseling for hereditary risk of breast or ovarian cancer (Genetic Group), 689 women referred to mammography (Mammography Group) and a random sample of 2,000 women from the general population (Population Group). One to 4 weeks before the first counseling session or mammography, data were collected by questionnaires. Both women affected with cancer and unaffected women in the Genetic Group appeared to have a somewhat higher prevalence of cancer-specific-distress than the corresponding reference groups. Further research on the effect of pre- counseling interventions appear warranted in addition with exploring a potential association between waiting time and cancer-specific distress.     

Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancer.

This longitudinal study examined predictors of mammography use among women with a family history of breast cancer participating in a risk assessment and surveillance program (N = 213). Assessed were background variables (age, prior mammography utilization), cognitive variables (perceived vulnerability), and affective variables (cancer worry and general distress). Results of logistic regression analyses predicting adherence 1 year after baseline contact, in which variables of prior utilization, feelings of vulnerability, and general distress were controlled for, indicated that cancer worry and age were significant predictors of mammography adherence. Results suggest that moderate levels of cancer worry facilitate, rather than undermine, adherence. The results have implications for the construction of educational messages that should be designed to acknowledge feelings of cancer-specific worry and to provide guidance in health protective behaviors.     

Validation of the Revised Illness Perception Questionnaire (IPQ-R) in a sample of persons recovering from myocardial infarction--the Swedish version

When people's health is threatened, they generally develop illness perceptions to make sense of their illness. The Illness Perception Questionnaire (IPQ-R), developed by Moss-Morris et al (2002), has been widely used in many countries to measure such representations. However, since studies in this crucial research area are lacking in Sweden a Swedish version of IPQ-R was validated with a focus on the seven subscales: timeline acute/chronic, timeline cyclical, consequences, personal control, treatment control, illness coherence and emotional representations. Using confirmatory factor analysis, the aim of the present study was to validate the internal structure of the Swedish version in a sample of 202 persons (144 men and 58 women) who had been diagnosed with myocardial infarction four months earlier. Additionally, inter-correlations among the seven subscales and external concurrent validity were also investigated. The results of confirmatory factor analysis revealed that, in line with the English version of the IPQ-R, the specified seven-factor model had a satisfactory fit. One item was however not considered reliable and was therefore excluded from the instrument. The internal consistency (Cronbach's alpha coefficients) and the inter-factor correlations were relatively similar to those reported in the validation study of the original English IPQ-R. In tests of concurrent validity, the seven IPQ-R subscales were, as hypothesized, mainly associated with external variables. To conclude, the Swedish version of the IPQ-R's seven dimensions, with one item removed, (total 37 items) was found to be a reliable and valid measure of illness perception.     

Predictors of Cancer Worry in Unaffected Women from High Risk Breast Cancer Families: Risk Perception is not the Primary Issue

Some women at increased familial risk of breast cancer experience elevated levels of cancer-specific worry, which can possibly act as a barrier to screening, and may be a significant factor in decisions regarding risk-reducing surgery. The aim of this study was to comprehensively examine predictors of cancer-specific worry in high risk women and to test a model which proposes that perceived breast cancer risk mediates the impact of other factors on worry. 1,437 unaffected women from high risk breast cancer families completed questionnaires and interviews. Path analysis was used to test the model of potential predictors of cancer worry, including familial, personal and psychological variables, mediated via perceived cancer risk. Levels of cancer-specific worry were generally low despite an average perceived risk of 50.3%. The goodness-of-fit of the proposed model was poor, explaining only 9% of the variance for perceived risk and 10% of the variance for cancer specific worry. An alternative model of a direct relationship between all of the predictor variables and cancer worry, explained 24% of the variation in cancer worry. General anxiety, perceived risk, the stressful impact of recent cancer related events, a relative risk greater than 10, being closer in age to the youngest breast cancer diagnosis in family, and knowledge of personal mutation status, all independently contributed to cancer worry. Addressing general affective responses, experiences of recent cancer related events, in addition to education about personal risk, should be considered in counselling women with elevated cancer worry. Risk perception appears to act independently of other factors in its formulation and impact on cancer worry. Further research on the way in which women come to perceive their risk is indicated. The kConFab Psychosocial Group are (in alphabetical order of institution): Brain and Mind Institute, University of Sydney, Australia (I Hickie) Department of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia (K-A Phillips) Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia (B Bennett, B Meiser, K Tucker) Department of Oncology, St Vincent’s Hospital, Melbourne, Australia (S-A MaLachlan) Department of Psychological Medicine, Royal North Shore Hospital, St Leonards, Australia (C Tennant); Medical Psychology Research Unit, University of Sydney, Australia (P Butow, M Price).     

Illness representations and psychological distress in patients undergoing coronary artery bypass graft surgery

Preoperative psychological distress has been shown to predict both postoperative distress and subsequent cardiac morbidity in patients undergoing coronary artery bypass graft (CABG) surgery. This study assessed the associations between illness perceptions and psychological well-being among 56 patients awaiting CABG surgery using the Profile of Mood States (POMS) and the Illness Perception Questionnaire-Revised (IPQ-R). Patient perceptions of their illness as chronic were associated with reduced beliefs in both personal control over illness and efficacy of treatment, and increased perceived consequences of illness in terms of life functioning. In addition, psychological distress regarding illness was significantly correlated with psychological distress in general. Reduced illness coherence was also associated with increased psychological distress. Preoperative psycho-education aimed at helping patients better understand their illness, treatment, and its effects may reduce psychological distress, and perhaps improve future well-being as a result.     

The indirect effect of contextual factors on the emotional distress of infertile couples

Few studies were dedicated to study the role of contextual factors, such as the socioeconomic status and urban or rural residence in emotional distress of infertile couples. This study aimed to explore the impact of contextual factors on emotional distress, either directly or by affecting the importance of parenthood in one's life, which in turn affects emotional distress. In this cross-sectional study, 70 couples recruited during hormonal stimulation phase prior to in vitro fertilisation completed clinical and sociodemographic forms and self-report questionnaires assessing representations about the importance of parenthood and emotional distress. Path analysis using structural equation modelling was used to examine direct and indirect effects among variables. Results indicated that socioeconomic status and place of residence had an impact in emotional distress by affecting the representations about the importance of parenthood in one's life. Gender differences were found regarding model paths, suggesting that the social context may have a stronger influence on women's emotional distress than on their partners’ distress. When delineating psychological interventions, health care providers should consider that cultural values about children and parenthood contribute to shape the infertility experience.     

Predictors of relationship adjustment among couples coping with a high risk of developing breast/ovarian cancer

This study investigated the association between supportive and collaborative processes and dyadic adjustment in 94 women at increased risk of breast/ovarian cancer and their partners. Participants were recruited through two familial cancer clinics. They completed mailed, self-report questionnaires that included measures of psychological distress, dyadic adjustment (consensus, cohesion and satisfaction) and couple predictor variables (perceived support and team approach). Most couples reported average-to-high levels of consensus, cohesion and satisfaction, with a small proportion of couples (6.4%) reporting scores that reached clinically significant levels of dyadic distress. Greater perceived support was associated with better dyadic consensus and satisfaction, and dyadic cohesion and satisfaction were higher among couples who reported greater use of a team approach. General distress did not moderate the association between dyadic coping and relationship quality. There were no significant relationships between intra-couple congruence on support or team approach, and dyadic adjustment. Most couples had a functional relationship in the face of the current health stressor, although a subgroup may be at elevated risk of negative psychological consequences, including further relationship strain. The results highlight that dyadic coping strategies are important factors involved in the quality of couples' relationship following genetic counselling for breast/ovarian cancer risk.     

Factor analysis of the Revised Illness Perception Questionnaire in adults with atopic dermatitis

The objective of this study was to examine the psychometric properties of the revised Illness Perceptions Questionnaire (IPQ-R) in adult participants with atopic dermatitis (AD). Two hundred and eighty-four participants who had a GP or dermatologist confirmed diagnosis of AD completed the IPQ-R. The factor structure of the IPQ-R was examined using confirmatory (CFA) and exploratory factor analysis (EFA). The results of the CFA did not indicate a good comparative fit with the IPQ-R subscales, while the EFA and a fixed six-factor principal components analysis largely replicated the original factor structure of the IPQ-R. The existence of the acute/chronic and cyclical timeline dimensions, and the illness coherence subscale was most strongly supported, while all items of the consequences and emotional representation subscales consistently loaded onto one factor. The EFA for causal attributions did not produce a stable solution. The findings indicate that although the factor structure of the IPQ-R was not confirmed in the sample of patients with AD using CFA, it was partly reproduced using EFA. Overall, the results suggest that in patients with AD the IPQ-R, in particular the consequences and emotional representations subscales, should be employed and interpreted with care.     

Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

The psychological impact of an unfavorable genetic test result for counselees at risk for hereditary cancer seems to be limited: only 10–20 % of counselees have psychological problems after testing positive for a known familial mutation. The objective of this study was to find prognostic factors that can predict which counselees are most likely to develop psychological problems after presymptomatic genetic testing. Counselees with a 50 % risk of BRCA1/2 or Lynch syndrome completed questionnaires at three time-points: after receiving a written invitation for a genetic counseling intake (T1), 2–3 days after receiving their DNA test result (T2), and 4–6 weeks later (T3). The psychological impact of the genetic test result was examined shortly and 4–6 weeks after learning their test result. Subsequently, the influence of various potentially prognostic factors on psychological impact were examined in the whole group. Data from 165 counselees were analyzed. Counselees with an unfavorable outcome did not have more emotional distress, but showed significantly more cancer worries 4–6 weeks after learning their test result. Prognostic factors for cancer worries after genetic testing were pre-existing cancer worries, being single, a high risk perception of getting cancer, and an unfavorable test result. Emotional distress was best predicted by pre-existing cancer worries and pre-existing emotional distress. The psychological impact of an unfavorable genetic test result appears considerable if it is measured as “worries about cancer.” Genetic counselors should provide additional guidance to counselees with many cancer worries, emotional distress, a high risk perception or a weak social network.     

The Moderating Effects of Mindfulness on Psychological Distress and Emotional Eating Behaviour

Current evidence and theory suggests that emotional eating resulting from attempts to manage psychological distress, such as anxiety, depression, and stress, is considered to be a major contributor to obesity. Mindfulness has been shown to be related to disordered eating behaviours. Employing a non‐clinical sample of 42 males and 115 females, the present study investigated the contribution of mindfulness as a potential moderator between psychological distress and engagement in emotional eating, while controlling for the effects of gender and general nutrition knowledge. Consistent with predictions, psychological distress was positively associated with engagement in emotional eating, while mindfulness was found to share an inverse relationship. Moreover, after controlling for gender and general nutrition knowledge, the interaction between psychological distress and mindfulness was found to significantly predict the tendency to engage in emotional eating over and above the individual effects of these variables. The findings from the current study add to the current literature supporting the use of mindfulness‐based interventions for treatment of emotional eating practices in individuals experiencing anxiety, stress, and lower levels of depression.     

Biased cognitive processing of cancer-related information among women with family histories of breast cancer: evidence from a cancer stroop task.

Stimuli associated with sources of stress have been shown to interfere with cognition. The authors hypothesized that women with the stress of having a family history of breast cancer (FH+) would exhibit greater interference on a task with cancer-related stimuli than women without cancer in the family (FH-). The authors developed a modified Stroop color-naming task to test this hypothesis in a sample of FH+ (n = 72) and FH- (n = 96) women. Consistent with the hypotheses, FH+ women had longer color-naming times and more errors (ps < .01) on a cancer word list relative to noncancer lists. This biased processing was not mediated by the significantly higher perceived risk, general distress, or cancer-specific distress in FH+ women. Maladaptive alterations in processing cancer stimuli may have important clinical implications, as these women must process complex cancer-related information critical to their health (e.g., options for chemoprevention, screening).