Long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile.

BACKGROUND: Some women at risk for hereditary breast cancer are at increased risk of psychological distress. In order to tailor support for individual women, the availability of a tool enabling the identification of psychologically vulnerable women at an early stage is warranted. The objectives of this study were (1) to explore long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance, and (2) to identify women being vulnerable for long-term psychological distress, defined in terms of a multifactorial risk profile. METHODS: General distress and cancer-related distress were assessed at baseline (T0) and after 5-8 years (T1) in 197 high-risk women adhering to breast cancer surveillance. Coping styles, occurrence of breast cancer in the family of origin, breast cancer risk perception, and frequency of breast self-examination, as assessed at T0, were examined as predictor variables for long-term distress (T1). RESULTS: Across time, women reported a significant reduction in intrusion and avoidance. Intrusion levels were increased among women who had lost a first-degree relative to breast cancer. Predictors of increased long-term distress were passive and palliative coping styles, excessive breast self-examination, and overestimation of breast cancer risk. On the other hand, coping through fostering reassuring thoughts was predictive for decreased long-term distress. CONCLUSION: On the basis of the identified risk profile, it is possible to identify vulnerable women at an early stage, who then may be offered additional and individually tailored support.

The impact of social and personal resources on psychological distress in women at risk for hereditary breast cancer.

OBJECTIVE: The objectives of the present study were to (1) evaluate whether social and personal resources were independently related to psychological distress and (2) examine the interrelationships of social and personal resources in women at risk for hereditary breast cancer. METHODS: General and breast cancer specific distress, family communication regarding hereditary breast cancer, perceived social support, self-esteem, self-concept, and demographics were assessed in 222 high-risk women, having opted either for regular surveillance or prophylactic surgery. RESULTS: Structural equation modeling showed that (1) both personal and social resources were independently associated with psychological distress and (2) the associations between social resources and psychological distress were partially mediated by personal resources. Support from family and friends was associated with a higher level of self-esteem, which in turn was associated with less general distress. Furthermore, communication regarding cancer within the nuclear family was associated with decreased feelings of stigmatization, which in turn was associated with less general and breast cancer specific distress. Moreover, open communication within the family was associated with a reduced sense of vulnerability. CONCLUSION: Health workers involved in the care of high-risk women should carefully monitor women's personal and social resources, and if compromised refer them for appropriate support.

Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support.

BACKGROUND: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at-risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. OBJECTIVE: To examine the associations of family communication and social support with long-term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. METHODS: The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer-related family communication, perceived social support, and demographics were assessed. RESULTS: Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer-specific distress through open communication within the family. DISCUSSION: These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long-term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer.

The contribution of self-esteem and self-concept in psychological distress in women at risk of hereditary breast cancer.

OBJECTIVE: Clarification of the role of several aspects of self-concept regarding psychological distress in women at risk of hereditary breast cancer will help to target counselling and psychosocial interventions more appropriately. In this study, we aimed (1) to examine the role of general self-esteem and specific aspects of self-concept (i.e. stigma, vulnerability, and mastery) in psychological distress in women at risk of hereditary breast cancer and (2) to compare the relative importance of these self-concept aspects in psychological distress in women with low versus high self-esteem. METHODS: General and breast-cancer-specific distress, self-esteem, self-concept, and demographics were assessed in 246 women being at risk of hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. RESULTS: In the total study group, self-esteem was negatively associated with general distress. Furthermore, feeling stigmatized was strongly associated with more breast-cancer-specific distress, and to a lesser degree with general distress. In women with low-self esteem, feelings of stigmatization were strongly associated with higher levels of both breast-cancer-specific and general distress, while a sense of mastery was associated with less general distress. For women with high self-esteem, feelings of both stigmatization and vulnerability were associated with more breast-cancer-specific distress, whereas there were no significant associations with general distress. DISCUSSION: Psychosocial interventions or support groups for women at risk of hereditary breast cancer should focus on self-esteem and feelings of stigmatization and isolation, and consequently tailor the interventions on specific items for respective women.

Body image and psychological distress after prophylactic mastectomy and breast reconstruction in genetically predisposed women: a prospective long-term follow-up study.

PURPOSE: To explore the course of psychological distress and body image at long-term follow-up (6-9 years) after prophylactic mastectomy and breast reconstruction (PM/BR) in women at risk for hereditary breast cancer, and to identify pre-PM risk factors for poor body image on the long-term. METHODS: Psychological distress (general and breast cancer specific) and body image (general and breast specific) were assessed in 36 high-risk women before PM (T0), at 6 months (T1) and 6-9 years (T2) after PM/BR. Investigated predictive variables (assessed at T0) for long-term body image (assessed at T2) included psychological distress, body image and coping styles. RESULTS: Breast cancer specific and general distress significantly decreased from T0 to T1 as well as from T1 to T2. Problems regarding breast related and general body image were significantly higher at T1 than at T0. Subsequently, breast related body image scores significantly decreased from T1 to T2, while the decrease in general body image scores were not significant. Active coping and seeking social support were predictive of lower scores (i.e. less problems) on breast related and general body image at long-term follow-up. Furthermore, higher scores on general body image before PM/BR were predictive for increased general body image scores at long-term follow-up. CONCLUSION: Our findings indicate that psychological distress is decreased after PM/BR, at the cost of persistent problems regarding body image. Exploration of coping styles and body image perception before PM/BR may help to identify vulnerable women who may benefit from additional support.