Long-term psychosocial and behavioral adjustment in individuals receiving genetic test results in Lynch syndrome.

A cross-sectional study of 155 participants who underwent genetic testing for Lynch syndrome (LS) examined long-term psychosocial and behavioral outcomes. Participants completed standardized measures of perceived risk, psychosocial functioning, knowledge, and a questionnaire of screening activities. Participants were on average 47.3 years and had undergone testing a mean of 5.5 years prior. Eighty four (54%) tested positive for a LS mutation and 71 (46%) negative. For unaffected carriers, perceived lifetime risk of colorectal cancer was 68%, and surprisingly, 40% among those testing negative. Most individuals demonstrated normative levels of psychosocial functioning. However, 25% of those testing negative had moderate depressive symptoms, as measured by the Center for Epidemiologic Studies for Depression Scale, and 31% elevated state anxiety on the State-Trait Anxiety Inventory. Being female and a stronger escape - avoidant coping style were predictive of depressive symptoms. For state anxiety, similar patterns were observed. Quality of life and social support were significantly associated with lower anxiety. Carriers maintained higher knowledge compared to those testing negative, and were more engaged in screening. In summary, most individuals adapt to genetic test results over the long term and continue to engage in screening. A subgroup, including some non-carriers, may require added psychosocial support.

Quality of life and functional outcome for individuals who underwent very early colectomy for familial adenomatous polyposis.

BACKGROUND: The major manifestation of familial adenomatous polyposis is colorectal adenomas, which, if untreated, lead to colorectal cancer. The impact of IPAA on quality of life in adolescents with familial adenomatous polyposis is favorable. There is a group of children who develop polyps at a younger age requiring earlier colectomy. Little is known about this very young subgroup in relation to bowel function or quality of life. OBJECTIVE: The aim of this study was to investigate the outcome in patients with familial adenomatous polyposis who had colectomy at ≤14 years. DESIGN: A cross-sectional quantitative survey was designed to assess outcome. Standardized validated instruments included bowel/psychosocial functioning and quality of life. RESULTS: Among 1337 patients with familial adenomatous polyposis from 409 kindreds, 4% (n = 59) of patients underwent colectomy at ≤14 years of age. Response rate was 84% (n = 32). The mean age at colectomy was 12 years (SD 2), with a current mean age of 24 years (SD 8.5). Fifty-seven percent of patients reported continence. Of the 43% reporting daytime or nighttime incontinence, the majority are <18 years (86%). Younger participants (currently less than 18 years of age) report more restrictions. Mental health is significantly lower among participants with incontinence. They report higher depression and anxiety symptoms, higher levels of intrusion and avoidance, and inferior mental health. The percentage of those worrying about risk of cancer is significantly higher in the younger group (71% vs 24%). Most patients (n = 24, 75%) have had surveillance endoscopy within the past 2 years. LIMITATIONS: This study is limited by study generalizability, selection bias, and small sample size. CONCLUSIONS: Twelve years after colectomy more than half of the patients have favorable bowel function. The rate of incontinence is high, especially among younger patients who have had a shorter time since surgery. Patients with incontinence reported lower psychosocial functioning, are very concerned about their cancer risk, and experience greater distress. This subgroup would benefit from added psychological interventions to enhance coping with familial adenomatous polyposis and surgery.

Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome.

A positive genetic test result may impact on a person's self-concept and affect quality of life. The purpose of the study was to develop a self-concept scale to measure such impact for individuals carrying mutations for a heritable colorectal cancer Lynch syndrome (LS). Two distinct phases were involved: Phase 1 generated specific colorectal self-concept candidate scale items from interviews with eight LS carriers and five genetic counselors, which were added to a previously developed self-concept scale for BRCA1/2 mutation carriers, Phase II had 115 LS carriers complete the candidate scale and a battery of validating measures. A 20-item scale was developed with two dimensions identified through factor analysis: stigma/vulnerability and bowel symptom-related anxiety. The scale showed excellent reliability (Cronbach's α = 0.93), good convergent validity by a high correlation with impact of event scale (r(102) = 0.55, p < 0.001) and Rosenberg self-esteem scale (r(108) = -0.59, p < 0.001), and a low correlation with the Fear questionnaire (r(108) = 0.37, p < 0.001). The scale's performance was stable across participant characteristics. This new scale for measuring self-concept has potential to be used as a clinical tool and as a measure for future studies.

Alleviating existential distress of cancer patients: can relational ethics guide clinicians?

Most people have a heightened awareness of death at the moment they receive a cancer diagnosis. Medical treatment attempts to demystify and manage death, yet surprisingly, care that alleviates existential distress is the least provided psychosocial care. A review of empirical research [quantitative and qualitative studies (n = 85) and seven literature reviews] was conducted to explore the experiences of clinicians (primarily nurses) working with cancer patients who experience existential distress. This paper summarizes clinicians' experiences with cancer patients who face the threat of mortality. Given that the majority of literature was found to be in nursing, emphasis in this paper tends to be on nurses' experiences. However, findings are suggested to have implications for other clinicians who deal with similar concerns. A lens of relational ethics was inductively found to organize and highlight problems and gaps that originate from interpersonal concerns. This paper describes four themes requiring further research and education related to existential distress: engagement, embodiment, environment and mutual respect. Implications for oncology care are suggested at the micro-, meso- and macro-levels to encourage clinicians to ethically respond to patients' existential distress needs.

Identifying mental health services in clinical genetic settings.

The purpose of this study was to examine the mental health needs of individuals at risk for adult onset hereditary disorder (AOHD) from the perspective of their genetic service providers, as it is unknown to what extent psychosocial services are required and being met. A mail-out survey was sent to 281 providers on the membership lists of the Canadian Association of Genetic Counsellors and the Canadian College of Medical Geneticists. The survey assessed psychosocial issues that were most commonly observed by geneticists, genetic counsellors (GCs), and nurses as well as availability and types of psychosocial services offered. Of the 129 respondents, half of genetic service providers reported observing signs of depression and anxiety, while 44% noted patients' concerns regarding relationships with family and friends. In terms of providing counselling to patients, as the level of psychological risk increased, confidence in dealing with these issues decreased. In addition, significantly more GCs reported that further training in psychosocial issues would be most beneficial to them if resources were available. As a feature of patient care, it is recommended that gene-based predictive testing include an integrative model of psychosocial services as well as training for genetic service providers in specific areas of AOHD mental health.

Motivations and psychosocial impact of genetic testing for HNPCC.

A type of hereditary colorectal cancer (CRC) known as hereditary nonpolyposis colorectal cancer (HNPCC) is associated with MLHI and MSH2 gene mutations. This study consists of a pilot, cross-sectional study of 50 individuals who were engaged in the genetic testing process for HNPCC. The study investigated the motivations and attitudes around genetic testing and current psychosocial functioning through the use of standardized measures, as well as obtained information on disclosure patterns associated with test results. The mean age of the sample was 44.3 years. (SD = 15.0). Twenty-three individuals were identified as "carriers" (13 had a previous history of CRC), seven were "non-carriers" and 20 individuals were still awaiting test results. The primary motivations for participating in genetic testing were similar to previous reports and included: wanting to know if more screening tests were needed, obtaining information about the risk for offspring and increasing certainty around their own risk. The psychosocial scores demonstrated that a subgroup of individuals exhibited distress, with greater distress for those individuals awaiting results or testing positive. There was a high level of satisfaction associated with the experience of testing. Individuals in this study tended to disclose their test results to a variety of family and non-family members. Disclosure was primarily associated with positive experiences however, some individuals reported regret around disclosure of their results. These preliminary findings should be further explored in a larger prospective study design over multiple time points.

Quality of life and psychosexual adjustment after prophylactic oophorectomy for a family history of ovarian cancer.

OBJECTIVES: 1) To evaluate a woman's satisfaction with the decision to have a prophylactic oophorectomy for family history of ovarian cancer. 2) To explore the potential costs related to surgery such a menopausal symptoms and satisfaction with sexual functioning. METHODS: Women who had undergone a prophylactic oophorectomy for a family history of ovarian cancer in Ontario were invited to participate. Forty women returned a package of questionnaires addressing demographic information, family history, decisional conflict, risk comprehension, menopause-specific quality of life, satisfaction with sexual function, and other psychosocial questionnaires. RESULTS: The mean age of respondents was 54.8 years. Perceived risk for developing ovarian cancer decreased significantly after surgery (p = 0.0001). Overall quality of life on the SF-36 Health Survey demonstrated a level consistent with emotional and physical wellbeing in the general population. The Menopause-Specific Quality of Life scores were reduced compared to women of similar age on all parameters: vasomotor symptoms, psychosocial support, physical status and sexual quality of life. Satisfaction with sexual functioning was moderately to extremely compromised in 42.1%-53.7% of women. CONCLUSION: While this study shows that women who choose to have prophylactic oophorectomy for a family history of ovarian cancer have a good overall quality of life and significant decrease in risk perception as a result of surgery, they experience menopausal symptoms and compromised sexual functioning.

Efficacy of an educational intervention on family physicians' risk assessment and management of colorectal cancer.

We developed a point-of-care tool indicating risk categories for colorectal cancer (CRC) based on family history (FH) and management recommendations tailored to risk. The study objective was to determine if this CRC Risk Triage/Management Too would enable family physicians (FPs) to appropriately triage and make screening and genetics referral recommendations for patients with CRC FH. Baseline questionnaires were mailed to a random sample of FPs in Ontario and Newfoundland, Canada. Participants were asked to use the tool for 3 months and then complete a follow-up questionnaire. The primary outcomes were correct responses to questions regarding CRC risk category, screening method, starting age, frequency, and decision to refer to genetics, for eight clinical vignettes. The study was completed by 75/121 (62 %) participating FPs. Most (77 %) agreed they routinely recommended fecal occult blood testing for average risk patients age ≥50. This did not change significantly following the intervention. There was a significant increase in confidence in CRC risk assessment (52 % pre; 88 % post; p < 0.001), correct management recommendations for patients with CRC FH (51 % pre; 84 % post; p < 0.001), and improvement in total mean scores on outcome measures for all vignettes. Most (90 %) agreed the tool would improve practice. Receipt of the CRC Risk Triage/Management Tool was associated with improvement in FPs' CRC risk assessment, screening, and genetics referral recommendations for clinical vignettes. This demonstrates the value of point-of-care tools and illustrates a process for development, evaluation, and dissemination of tools needed by FPs if potential impacts of genomic advances are to be achieved.

PP092. Satisfaction and experiences of pregnant hypertensive women participating in a feasibility study of guided imagery effects on blood pressure.

INTRODUCTION: Hypertensive disorders of pregnancy are associated with maternal and perinatal health risk. Some studies have demonstrated blood pressure reduction from the use of relaxation therapies, although previous study in pregnancy was limited. We undertook a RCT to determine the effects of guided imagery relaxation on BP and anxiety in hypertensive women during pregnancy, to answer feasibility questions for a larger trial. OBJECTIVES: This presentation will describe experiences and satisfaction with study participation, as reported by women in our study. METHODS: Pregnant women with hypertension (n=69) were randomized to two daily periods of guided imagery or quiet rest, for 4weeks or until delivery, whichever came first. Participants provided compliance data and evaluated guided imagery each week, and completed postpartum questionnaires about their satisfaction with study participation. RESULTS: Sixty women completed at least one week in the study. Compliance with allocated group conditions was high. Most women were satisfied with their allocation; 83.3% would choose to be in the study again. A greater proportion (42.4%) indicated that the study reassured them, compared to 3.4% who felt it added to their worry. Of those in the Guided Imagery group providing ratings, more than 75% reported enjoyment and ease of use. Most indicated they would use it for future hypertension in pregnancy and for stress, and would recommend it to others. CONCLUSION: Our results suggest that Guided Imagery may moderate BP increases in pregnant women with hypertension. However, success of any clinical intervention requires a high degree of patient compliance and acceptability. Guided imagery was acceptable, based on reported use and intent to use it for future stress and hypertension. Guided imagery can be used by hypertensive pregnant women to promote relaxation. Further research is required to determine whether it can improve physical and psychological health outcomes during pregnancy, birthing and postpartum.

Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning.

Hereditary non-polyposis colorectal cancer (HNPCC) represents about 1-3% of all cases of colorectal cancer (CRC). The objectives of the study were to examine motivational factors, expectations and psychosocial functioning in a sample of CRC survivors undergoing genetic testing for HNPCC. A cross-sectional survey of 314 colorectal cancer patients recruited through a population-based colon cancer family registry was conducted. Motivations for genetic testing for hereditary cancer were similar to those of clinic-based samples of CRC patients and included learning of the increased risk to offspring and finding out if additional screening was needed. While age at diagnosis and sex were associated with psychological functioning, significant predictors of post-counseling distress were perceived lower satisfaction with social support, an escape-avoidant coping style and the anticipation of becoming depressed if a mutation was present. Most cancer survivors anticipated disclosing test results to relatives and physicians. Cancer survivors reported several motivations for genetic testing for HNPCC that varied by sex. A subgroup of survivors with lower satisfaction with social support and an escape-avoidant coping style were worried about the potential impact of genetic test results and demonstrated more distress following counseling. Findings have implications for future research and potential support needs during the genetic counseling and testing process.

Facilitating adjustment to inflammatory bowel disease: a model of psychosocial intervention in non-psychiatric patients.

BACKGROUND: There is no consensus about the most appropriate psychosocial interventions for people with inflammatory bowel disease (IBD) or the most appropriate criteria by which to select which patients might benefit from the available interventions. Nonetheless the perception that stress and other subjective factors contribute to suffering in IBD is persistent and professionals are often called upon to offer appropriate support. A model of normal psychosocial adjustment to IBD and the interventions which can improve difficulties with adjustment will facilitate rational therapeutic intervention and needed research in this area. METHODS: A model of normal adjustment to IBD is developed from a synthesis of the empirical literature and clinical experience in a tertiary care medical/surgical IBD centre and is used to identify potential points of psychosocial intervention. RESULTS: Normal adjustment to IBD can be understood as a process involving the interaction of a triad of adaptive challenges: illness uncertainty, loss and change, and suffering. Each of these challenges requires different criteria of psychosocial assessment and may lead to different interventions. CONCLUSIONS: Although the interventions available for improving adjustment to IBD have not been exhaustively investigated, the existing data support the value of further study. The model of psychosocial adjustment presented here provides a synthesis of the existing data and a starting point for further research.

Supportive-expressive group psychotherapy for persons with inflammatory bowel disease.

OBJECTIVE: Supportive-expressive (SE) group psychotherapy is designed to be applicable to medically ill populations. In this open trial, SE therapy was adapted for use in treating inflammatory bowel disease (IBD). METHOD: Thirty subjects with Crohn's disease (CD) or ulcerative colitis (UC) were enrolled in 4 psychotherapy groups. Each group met weekly for 20 weeks to discuss emotional and interpersonal issues associated with illness. Physical and psychological variables were measured at the onset and at the finish of the group sessions. RESULTS: There was no mean group change in quality of life (QL), anxiety, or depression over the course of treatment, although there was a mean group reduction in maladaptive coping. CONCLUSION: Although the trial was uncontrolled and the sample size small, which limits interpretation, the results are consistent with an ineffective intervention. Because a null result would be consistent with previously reported psychotherapeutic trials in cases of IBD, and because SE therapy has been effective in treating other medically ill populations, we discuss characteristics of IBD that may account for a relative resistance to psychotherapeutic support.

Guided imagery treatment to promote self-soothing in bulimia nervosa. A theoretical rationale.

Bulimia nervosa (BN) has been described as involving impairment in affect regulation and in self-soothing. Such a conceptualization suggests the need to design treatments that specifically target these problems in order to assist individuals with BN in comforting themselves. A model of guided imagery therapy suggests that imagery therapy has multiple levels of action and can assist these individuals in the regulation of affect by providing an external source of soothing and also by enhancing self-soothing. The authors illustrate the model with a case example and report the results of a study in a clinical sample of BN.

Relationship between self-soothing, aloneness, and evocative memory in bulimia nervosa.

OBJECTIVE: The relationship between characteristics of self-soothing ability, the capacity for evocative memory, and aloneness was investigated in a clinical sample of 50 bulimia nervosa (BN) patients. METHOD: Individuals meeting DSM-III-R criteria for BN who participated in a randomized trial of guided imagery completed measures of Soothing Receptivity and a modified version of the UCLA-Loneliness scale, resulting in the Aloneness/Evocative Memory Scale. RESULTS: A lower level of soothing receptivity (indicating a decreased capacity for self-soothing) was correlated with a decreased capacity for evocative memory. A lower level of soothing receptivity and decreased capacity for evocative memory were associated with a greater experience of aloneness. DISCUSSION: Results suggest the need for a more comprehensive understanding of the role of affect regulation and the experience of aloneness in BN and the need to develop treatments to specifically address these features of the illness.

The conceptualization of impulsivity for psychiatric nursing practice.

This article conceptualizes impulsivity from the perspective of psychiatric nurses in the inpatient setting. A theoretical model of the nature and the process of impulsivity is developed phenomenologically from information obtained from psychiatric nurses and patient chart reviews. The impulsive event is characterized by three elements: (1) precipitants of the behavior, (2) characteristics of the impulsive event, and (3) staff response. The expression of these elements differentiates impulsivity according to patient domains of psychotic and nonpsychotic illnesses. The emerging differentiation provides the opportunity to develop distinct nursing interventions that target the impulsivity within each of these domains.

A randomized controlled trial of guided imagery in bulimia nervosa.

BACKGROUND: The objective of this study was to test a guided imagery therapy designed to enhance self-comforting in bulimia nervosa. METHODS: A randomized controlled trial compared 6 weeks of individual guided imagery therapy with a control group. Fifty participants who met DSM-III-R criteria for bulimia nervosa completed the study. Measures of eating disorder symptoms, psychological functioning and the experience of guided imagery therapy were administered. RESULTS: The guided imagery treatment had substantial effects on the reduction of bingeing and purging episodes; the imagery group had a mean reduction of binges of 74% and of vomiting of 73%. The imagery treatment also demonstrated improvement on measures of attitudes concerning eating, dieting and body weight in comparison to the control group. In addition, the guided imagery demonstrated improvement on psychological measures of aloneness and the ability for self-comforting. CONCLUSIONS: Evidence from this study suggests that guided imagery was an effective treatment for bulimia nervosa, at least in the short-term.

A group therapy approach to facilitate integration of risk information for women at risk for breast cancer.

OBJECTIVE: To describe and illustrate elements of a group counselling approach designed to enhance the communication of risk information on breast cancer (BC) to women with a family history of this disease. Breast cancer is a leading cause of female cancer death. The most important risk factor for BC is a positive family history in at least 1 first-degree relative, and approximately one-third of women with BC have a family history of the disease. Recent evidence suggests that there is a significant psychological impact associated with having a family history of BC, and this may influence the psychological adjustment and response to being counselled for personal risk. New counselling approaches are required. METHOD: This paper describes a group therapy approach that incorporates principles of supportive-expressive therapy designed to address the emotional impact of being at risk for BC and to promote accuracy of perceived risk. The key elements of the intervention are described along with clinical illustrations from groups that are part of an ongoing study to develop and standardize the group therapy. CONCLUSION: Qualitative data from the groups suggest that this model of therapy is both feasible and effective.

Multidisciplinary weight management in locoregional breast cancer: results of a phase II study.

Sixty-one women with newly diagnosed locoregional breast cancer (T1-3, N0-1, M0) having an initial Body Mass Index (BMI) between 20 and 35 kg/m2 who were receiving standard adjuvant treatment (chemotherapy, tamoxifen, and/or radiation) were asked to avoid weight gain (if initial BMI < or = 25 kg/m2) or to lose up to 10 kg (if initial BMI 25-35 kg/m2) over one year. Women participated in twenty group sessions (10 weekly, 10 monthly) which involved a psychological supportive-expressive group intervention supplemented by individual weight goals, and nutrition and exercise programs. Fifty-five non-censored women (5 developed recurrence, 1 died of a subarachnoid hemorrhage) lost a mean of 0.53 +/- 3.72 kg. Weight loss was greatest in initially overweight women (BMI > or = 25 kg/m2) who lost 1.63 +/- 4.11 kg (p = 0.01 compared to normal weight women) and in those not receiving chemotherapy who lost 2.15 +/- 2.83 kg (p = 0.0004 compared to those receiving chemotherapy). 70.9% met predefined criteria for success. Aerobic exercise increased significantly during the intervention (p = 0.00005) and was the strongest predictor of success (OR 1.73 for each additional 30 minutes of exercise weekly, p = 0.003). Changes in caloric intake were not significant, but fat intake decreased and carbohydrate and fibre intake increased significantly during the intervention. Eating behavior and psychological status improved significantly. Thus, this multidisciplinary weight management intervention successfully prevented weight gain in women with newly diagnosed locoregional breast cancer, and helped overweight women lose weight.

A supportive-expressive group intervention for women with a family history of breast cancer: results of a phase II study.

BACKGROUND: Evidence suggests that there are significant psychological and behavioural sequelae associated with having a family history of breast cancer (BC) which can interfere with comprehension of risk estimates. PURPOSE: The purpose of this study was to develop, standardize and do preliminary testing of a group intervention designed to address the emotional impact of having a family history of BC. METHODS: This study is a single-arm pilot design with pre- and post-measures of perceived risk, psychosocial distress, knowledge and screening practices. RESULTS: The primary study outcome measure of risk comprehension was significantly improved by 70%, according to our predetermined criteria for success. In addition, the most important secondary measures of psychosocial functioning, such as cancer-related distress (p=0.025), depression (p=0.05), anxiety (p=0.005) and unresolved grief (p=0.034) were significantly improved. CONCLUSION: The results of this initial pilot study are encouraging; however, further research is required, using a randomized controlled study design to evaluate the relative contribution of this intervention to the successful modification of risk comprehension, enhanced psychological functioning, and to promote optimal screening adherence.