"Melanoma: Questions and Answers." Development and evaluation of a psycho-educational resource for people with a history of melanoma.

PURPOSE: People with melanoma often report pervasive fears about cancer recurrence, unmet information needs, and difficulties accessing psychological care. Interventions addressing the supportive care needs of people with melanoma are rare, and needs are often overlooked. The study evaluated a newly developed, evidence-based, psycho-educational resource for people with melanoma. METHODS: The evaluation study comprised three groups: adults at high risk of new primary disease due to multiple previous melanomas or one melanoma and dysplastic nevus syndrome (DNS), adults at moderate risk due to one previous melanoma and no DNS, and health professionals involved in melanoma care. Participants evaluated a 68-page psycho-educational booklet, Melanoma: Questions and Answers, developed by a multidisciplinary team in accordance with published evidence, clinical guidelines, and intervention development frameworks. The booklet comprised seven modules featuring information on melanoma diagnosis, treatment, prognosis, and ongoing clinical management; risk factors and the role of genetic counseling services for melanoma; psycho-education on emotional, behavioral, and cognitive responses to melanoma, including psycho-education on fear of cancer recurrence; description of healthy coping responses; a suite of tailored tools to support skin self-examination, doctor-patient communication, and identification of the signs and symptoms of anxiety and depression; a list of community-based services and resources; and tools to support melanoma-related record keeping and monitoring. Resource acceptability, relevance, quality, dissemination preferences, emotional responses, unmet information needs, and demographic characteristics were assessed. RESULTS: Nineteen melanoma survivors (response rate 50 %) and 10 health professionals (response rate 83 %) evaluated the resource. Responses were overwhelmingly positive; the booklet was thoroughly read and highly rated in terms of quality and quantity of information, utility of health education tools, and capacity to address unmet needs. Ninety-five percent of melanoma survivors would recommend the booklet to others. Most preferred a paper-based format, provided by their treating doctor at diagnosis. CONCLUSIONS: Melanoma: Questions and Answers was feasible and acceptable and demonstrated a strong capacity to address the information and psycho-educational needs of people with melanoma at low fiscal cost.

"I might not have cancer if you didn't mention it": a qualitative study on information needed by culturally diverse cancer survivors.

BACKGROUND: Immigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups. METHODS: Qualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed. RESULTS: Thirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, 'survivor' seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer 'recovery' to 'survivorship' descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors' original and adopted countries; and acknowledgment of survivorship diversity within CALD groups. CONCLUSIONS: Immigrant cancer survivors' additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors' self-care and capacity for finding, choosing, and using existing support options.

The struggle towards 'the New Normal': a qualitative insight into psychosexual adjustment to prostate cancer.

BACKGROUND: Despite the growing body of literature which highlights the potential for significant and enduring side-effects of prostate cancer treatment, there is limited research exploring the experience of living with the treatment-induced side-effects such as sexual dysfunction, and their repercussions for men and their partners. The aim of this qualitative study was to explore factors influencing psychosexual adjustment, self-perception, and unmet information and support needs of prostate cancer patients and their partners. METHODS: Twenty-one men, recruited via a prostate cancer support group newsletter, participated in face-to-face semi-structured interviews, which were subjected to thematic analysis. RESULTS: The qualitative analysis revealed three inter-connected main themes which contributed to men's psychosexual adjustment: i) Psychosexual impact, ii) Communication and support, and iii) Integration process. Men reported distressing sexual and urinary difficulties, tainted self-perception and altered intimate relationships. Receiving adequate information and support, and having good communication with their doctors and partners facilitated better adjustment to prostate cancer treatment. Coming to terms with the significant impact of treatment had involved making lifestyle changes, coping with emotional struggles and striving to accept and integrate their post-treatment "new normal" self and sexual life. CONCLUSIONS: The importance of adequate communication with health professionals and partners, especially regarding treatment effects on sexual function and rehabilitation options, was highlighted as a key factor facilitating the adjustment process. Prostate cancer patients would benefit from improved access to timely and tailored information and decision-making resources, ongoing multidisciplinary care, and support groups, as well as appropriate referrals for sexual and psychological counselling.

The acceptability, feasibility, and efficacy (phase I/II study) of the OVERcome (Olive Oil, Vaginal Exercise, and MoisturizeR) intervention to improve dyspareunia and alleviate sexual problems in women with breast cancer.

INTRODUCTION: Almost half of breast cancer survivors experience chronic sexual problems. Despite the negative effects of dyspareunia on physical and overall quality of life, sexual dysfunction remains underreported and undertreated in clinical practice. This is likely due to the paucity of evidence-based interventions to improve sexual functioning. AIM: The study aims to prospectively evaluate the acceptability, feasibility, and efficacy of a novel intervention (Olive Oil, Vaginal Exercise, and MoisturizeR [OVERcome]) to improve sexual problems following breast cancer treatment. MAIN OUTCOME MEASURES: Dyspareunia, sexual functioning, quality of life, distress, and pelvic floor muscles (PFMs) functioning were evaluated. METHODS: Twenty-five women with dyspareunia were instructed to perform pelvic floor muscle (PFM) relaxation exercises twice/day to prevent/manage PFM overactivity, apply a polycarbophil-based vaginal moisturizer three times/week to alleviate vaginal dryness, use olive oil as a lubricant during intercourse, and complete a weekly compliance diary. PFM relaxation training was administered by a physiotherapist at weeks 0 and 4, with follow-up at weeks 12 and 26. At each visit, women completed validated self-report questionnaires and the physiotherapist recorded objective measures of PFM functioning. RESULTS: OVERcome resulted in significant improvements in dyspareunia, sexual function, and quality of life over time (all P<0.001). PFM relaxation training was reported to be effective (P≤0.001). Maximum benefits were observed at week 12. Most women rated PFM relaxation exercises (92%), vaginal moisturizer (88%), and olive oil (73%) as helpful, indicating that the intervention was acceptable. Unexpectedly, six cases (11%) of vaginal stenosis were noted during initial screening. CONCLUSIONS: This novel intervention is acceptable to patients with demonstrated efficacy in improving dyspareunia and sexual function following breast cancer. Delivery of the OVERcome intervention appears feasible in a clinical setting, providing a potential treatment for this important clinical issue. The unexpected number of observed cases of stenosis further highlights the underreporting of sexual problems in this population, deserving further exploration.

Identifying the 'Active Ingredients' of an Effective Psychological Intervention to Reduce Fear of Cancer Recurrence: A Process Evaluation.

Purpose: Psychological interventions targeting fear of cancer recurrence (FCR) are effective in reducing fear and distress. Process evaluations are an important, yet scarce adjunct to published intervention trials, despite their utility in guiding the interpretation of study outcomes and optimizing intervention design for broader implementation. Accordingly, this paper reports the findings of a process evaluation conducted alongside a randomized controlled trial of a psychological intervention for melanoma patients. Methods: Men and women with a history of Stage 0-II melanoma at high-risk of developing new primary disease were recruited via High Risk Melanoma Clinics across Sydney, Australia and randomly allocated to receive the psychological intervention (n = 80) or usual care (n = 84). Intervention participants received a tailored psycho-educational resource and three individual psychotherapeutic sessions delivered via telehealth. Qualitative and quantitative data on intervention context, processes, and delivery (reach, dose, and fidelity), and mechanisms of impact (participant responses, moderators of outcome) were collected from a range of sources, including participant surveys, psychotherapeutic session audio-recordings, and clinical records. Results: Almost all participants reported using the psycho-educational resource (97%), received all intended psychotherapy sessions (96%), and reported high satisfaction with both intervention components. Over 80% of participants would recommend the intervention to others, and a small proportion (4%) found discussion of melanoma-related experiences confronting. Perceived benefits included enhanced doctor-patient communication, talking more openly with family members about melanoma, and improved coping. Of potential moderators, only higher FCR severity at baseline (pre-intervention) was associated with greater reductions in FCR severity (primary outcome) at 6-month follow-up (primary endpoint). Conclusions: Findings support the acceptability and feasibility of a psychological intervention to reduce FCR amongst individuals at high risk of developing another melanoma. Implementation into routine melanoma care is an imperative next step, with FCR screening recommended to identify those most likely to derive the greatest psychological benefit.

Psychological adjustment among male partners in response to women's breast/ovarian cancer risk: a theoretical review of the literature.

OBJECTIVE: For women at high risk of developing hereditary breast and/or ovarian cancer the process of undergoing genetic testing is anxiety provoking and stressful, entailing difficult and complex decisions. Partners of high-risk women are frequently perceived by the women as a source of support during this challenging time. Utilising Self Regulatory Theory, this paper provides a theoretically guided overview of existing data to delineate how partners respond emotionally and behaviourally to the woman's high-risk status. METHODS: An extensive literature search was undertaken. Online searches of MEDLINE, CINAHL and PsycINFO databases were conducted, reference lists of all publications identified were examined; and the databases were searched for authors identified in these publications. RESULTS: The systematic search yielded 10 published studies on at-risk women and their male partners; one study did not investigate male partner distress as an outcome variable. Heterogeneity of methodology in this literature precluded quantitative meta-analyses of study outcomes. Review of the evidence suggests that the genetic testing process may be distressing for some partners, particularly for partners of women identified as mutation carriers. Associations were identified between partner distress and partner beliefs about the woman's perceived breast cancer risk; partner feelings of social separation and lack of couple communication; and partner perceptions of being alienated from the testing process. Lack of partner support was found to be associated with increased distress of the tested woman at the time of testing and following results disclosure. Data are lacking on the role of partner beliefs about breast cancer, partner perceived consequences of genetic testing, and personality factors such as information processing style, on partner distress. CONCLUSIONS: The high level of behavioural and psychological interdependence that exists between a tested woman and her partner means that future research seeking to understand the coping and adjustment processes of partners needs to adopt a dyadic, transactional approach that is grounded in psychological theory. Specific suggestions for future research in this context are delineated.

Prevalence of adolescent problem gambling, related harms and help-seeking behaviours among an Australian population.

Epidemiological studies have consistently reported prevalence rates ranging between 0.9 and 23.5% for problem gambling among young people. With such a large range reported in the literature, it is clear that more research in this area would be of value. The current study investigated the prevalence rate of adolescent gambling and problem gambling and explored types of harm-related and help-seeking behaviours associated with gambling specific to this population in an Australian setting. A self-administered battery of questionnaires was distributed to 252 students aged 12-18 years, attending four private schools in the Eastern suburbs of Sydney, Australia. The battery included a self-administered socio-gambling demographic questionnaire, the Diagnostic and Statistical Manual Fourth Edition Multiple Response Juvenile (DSM-IV-MR-J) diagnostic instrument to assess problem gambling status, the Gambling Attitudes Scale, and questionnaires using a Likert scale to measure gambling-related harms and help-seeking behaviours. The prevalence rate among this group was found to be 6.7%. The study found further support for previous findings suggesting that a significant proportion of young people meet criteria for problem gambling, that males are at-risk and that few adolescents are able to recognise when gambling is problematic or access mental health professionals for assistance.

Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study.

The aim of this study was to explore in detail the psychosocial impact of either having familial adenomatous polyposis (FAP) or being at risk for FAP amongst young adults. In-depth interviews were conducted with eleven individuals aged 18-35 with a clinical or genetic diagnosis of, or at risk of developing FAP. While being at risk did not seem to have a major psychosocial impact upon clinically unaffected participants, clinically affected individuals discussed a number of major stressors including issues in relation to changes in body image and physical functioning as a result of surgery, concerns about discussing FAP with new partners, difficulties in relation to childbearing decision-making, and impact on employment. Genetic counseling was described as being highly effective in providing support, but most participants were not aware of any other support services. Providing longer-term support through ongoing genetic counseling appears necessary to adequately address the ongoing challenges faced by young adults who are dealing with FAP.

Attitudes to genetic testing in families with multiple cases of bipolar disorder.

OBJECTIVES: This study assesses interest in genetic testing for gene variations associated with bipolar disorder and associated information needs. METHODS: Two hundred individuals (95 unaffected and 105 affected with either bipolar disorder, schizoaffective disorder--manic type, or recurrent major depression) from families with multiple cases of bipolar disorder were assessed, using mailed, self-administered questionnaires. RESULTS: The percentage of participants reporting interest in genetic testing was associated with the degree of certainty with which any test would indicate the development of bipolar disorder. Interest in genetic testing, given a 25% lifetime risk scenario, was lowest (with 77% of participants indicating interest), and highest for the 100% lifetime risk scenario (92%). Eighty percent of participants indicated interest in genetic testing of their own children; of these 30% reported wanting their children tested at birth, and 33% in early childhood. Forty-one percent of participants reported that they would be interested in preimplantation genetic diagnosis, and 54% in prenatal testing. LIMITATIONS: The possibility of ascertainment bias cannot be ruled out. Interest in hypothetical genetic testing for bipolar disorder may not necessarily translate into actual utilization. CONCLUSIONS: These results indicate that uptake of genetic testing for genotyping for low-risk alleles related to bipolar disorder is likely to be lower than for testing for high-penetrance gene mutations that follow Mendelian inheritance. The discrepancy between the desired age of testing children and the accepted current practice may be a source of distress and conflict for parents and health professionals alike.

Psychoeducational intervention for people at high risk of developing another melanoma: a pilot randomised controlled trial.

INTRODUCTION: Information and psychological needs have been reported as one of the greatest areas of unmet needs for patients with melanoma. To respond to these needs, we developed the Melanoma Care Intervention, a developed psychoeducational intervention for people at high risk of developing another melanoma comprising of a newly developed melanoma educational booklet and individually tailored telephone support sessions provided by trained psychologists. The purpose of this study was to investigate the acceptability and feasibility of the Melanoma Care Intervention. METHODS: Twenty-four adults (14 men, 10 women, mean age: 58 years, SD: 12.2) at high risk of developing a subsequent primary melanoma were recruited and randomly assigned 1:1 to the intervention (a psychoeducational booklet, a Cancer Council booklet on melanoma and up to five telephone-based sessions with a psychologist) or usual care (Cancer Council booklet only). Acceptability, feasibility, fear of cancer recurrence and secondary psychosocial outcomes were assessed at baseline, 1 and 6 months. RESULTS: Satisfaction and perceived benefits were rated highly for all intervention components, particularly the telephone-based psychology sessions (mean satisfaction and benefits: both 9.27 out of 10, SD=2.41). The quality of information and support provided throughout the trial was rated as 'high' by the intervention group, with a mean score of 4.6 out of a possible 5 (SD=0.9) and 4.2 (SD=1.2) for the control group. CONCLUSIONS: The intervention was feasible and acceptable for improving psychological adjustment. Timely access to effective, evidence-based, psychological care is a recognised need for people with melanoma. The intervention is designed to directly address this need in a way that is feasible in a clinical setting, acceptable to patients and health professionals. TRIAL REGISTRATION NUMBER: The trial was registered with the Australian and New Zealand Clinical Trials Registry on 19/03/2013 (Registration Number: ACTRN12613000304730).

Psychoeducational Intervention to Reduce Fear of Cancer Recurrence in People at High Risk of Developing Another Primary Melanoma: Results of a Randomized Controlled Trial.

Purpose People with a history of melanoma commonly report a fear of cancer recurrence (FCR), yet psychologic support is not routinely offered as part of ongoing melanoma care. This randomized controlled trial examined the efficacy of a psychoeducational intervention to reduce FCR and improve psychologic adjustment in this patient group compared with usual care. Methods The intervention comprised a newly developed psychoeducational resource and three telephone-based psychotherapeutic sessions over a 1-month period timed in accordance with dermatologic appointments. Participants were randomly assigned to intervention (n = 80) or usual care (n = 84). Assessments were completed at baseline, 1 month, and 6 months after dermatologic appointments. Linear mixed models were used to examine differences between treatment and control groups for patient-reported outcomes, including FCR, anxiety, stress, depression, melanoma-related knowledge, health behaviors, satisfaction with melanoma care, unmet needs, and health-related quality of life. Results At 6 months, the intervention group reported lower FCR severity, trigger, and distress scores than the control group in the baseline-adjusted models; the between-group mean difference was -1.9 for FCR severity (95% CI, -3.1 to -0.7; P = .002), -2.0 for FCR triggers (95% CI, -3.3 to -0.7; P = .003), and -0.7 for FCR distress (95% CI, -1.3 to -0.1; P = .03). The decrease in FCR severity (but not triggers or distress) remained statistically significant after adjustment for other covariates ( P = .04). At 6 months, the intervention group also reported lower stress (-1.6; 95% CI, -3.1 to -0.2; P = .03) and improved melanoma-related knowledge (1.7; 95% CI, 0.8 to 2.6; P < .001) compared with the control group. No differences were found between groups for other secondary outcomes. Conclusion This newly developed evidence-based psychoeducational intervention was effective in reducing FCR and stress and increasing melanoma-related knowledge in people at high risk for another melanoma.

Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel-Lindau disease.

Despite well-established protocols for the medical management of Von Hippel-Lindau disease (VHL), families affected by this rare tumour syndrome continue to face numerous psychological, social, and practical challenges. To our knowledge, this is one of the first qualitative studies to explore the psychosocial difficulties experienced by families affected by VHL. A semi-structured interview was developed to explore patients' and carers' experiences of VHL along several life domains, including: self-identity and self-esteem, interpersonal relationships, education and career opportunities, family communication, physical health and emotional well-being, and supportive care needs. Quantitative measures were also used to examine the prevalence of anxiety, depression, and disease-specific distress in this sample. Participants were recruited via the Hereditary Cancer Clinic at the Prince of Wales Hospital in Sydney, Australia. A total of 23 individual telephone interviews were conducted (15 patients, 8 carers), yielding a response rate of 75%. A diverse range of experiences were reported, including: sustained uncertainty about future tumour development, frustration regarding the need for lifelong medical screening, strained family relationships, difficulties communicating with others about VHL, perceived social isolation and limited career opportunities, financial and care-giving burdens, complex decisions in relation to childbearing, and difficulties accessing expert medical and psychosocial care. Participants also provided examples of psychological growth and resilience, and voiced support for continued efforts to improve supportive care services. More sophisticated systems for connecting VHL patients and their families with holistic, empathic, and person-centred medical and psychosocial care are urgently needed.

Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies.

PURPOSE: Fear of cancer recurrence (FCR) is among the most commonly reported problems and one of the most prevalent areas of unmet needs for cancer survivors and their carers. This review aims to provide a comprehensive overview of current scientific knowledge on FCR and to formulate recommendations for future research. METHODS: A systematic review was undertaken to identify quantitative studies associated with FCR. Relevant studies were identified via Medline, CINAHL, PsycINFO and AMED databases from 1996 through December 2011. Data from 130 eligible papers were extracted and summarized following a systematic scheme. RESULTS: Multiple FCR assessment methods were identified. Survivors reported low to moderate level of FCR but considered it as one of the top greatest concerns and the most frequently endorsed unmet need. FCR remains stable over the survivorship trajectory. Younger age, presence and severity of physical symptoms, psychological distress and lower quality of life were associated with higher FCR. Health behaviours, psychological reactions and functional impairments were identified as FCR consequences. Carers reported higher FCR than the patients. Limited data on interventions were available. CONCLUSIONS: FCR research has expanded somewhat haphazardly over the last 20 years. Adopted consensual definition and used well-validated measures will be necessary. Longitudinal research examining the longer-term development and impact of FCR is clearly needed. The proposal and evaluation of theoretical models of FCR is a priority. IMPLICATIONS FOR CANCER SURVIVORS: Identifying the key features of FCR will stimulate the research and the development of targeted interventions for cancer survivors and their carers.

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.

Psychological adjustment among partners of women at high risk of developing breast/ovarian cancer.

PURPOSE: The aim of the current research was to characterize psychological adjustment among partners of women at high risk of developing breast/ovarian cancer and to explore the relationship between women's and partners' adjustment. METHODS: A study of 95 unaffected at-risk women and 95 partners was carried out using mailed, self-administered questionnaires with validated measures of psychological outcome. RESULTS: Elevated levels of distress were noted in up to 10% of partners. High monitoring coping style and greater perceived breast cancer risk for their wife were associated with higher distress levels for partners. However, communicating openly with their wife and the occurrence of a recent cancer-related event in the woman's family were related to lower distress for partners. Partners' cancer-specific distress was positively related to their wives' distress. CONCLUSION: Among partners with elevated levels of distress, the ability to provide effective support to the at-risk women and participate appropriately in their decision making may be compromised. These partners are likely to benefit from targeted clinical interventions designed to reduce their distress levels. The findings emphasize the importance of considering partners of at-risk women in service provision and highlight the need for partners to obtain information and support specifically tailored to their needs.

Attitudes towards childbearing, causal attributions for bipolar disorder and psychological distress: a study of families with multiple cases of bipolar disorder.

BACKGROUND: For families with multiple cases of bipolar disorder this study explored: attitudes towards childbearing; causal attributions for bipolar disorder, in particular the degree to which a genetic model is endorsed and its impact on the perceived stigma of bipolar disorder; and predictors of psychological distress. METHOD: Two hundred individuals (95 unaffected and 105 affected with either bipolar disorder, schizo-affective disorder - manic type, or recurrent major disorder) were surveyed, using mailed, self-administered questionnaires. RESULTS: Thirty-five (35%) participants reported being 'not at all willing to have children' or 'less willing to have children' as a result of having a strong family history of bipolar disorder. Being not at all or less willing to have children was associated with perceived stigma of bipolar disorder [odds ratio (OR) 2.42, p = 0.002], endorsement of a genetic model (OR 1.76, p = 0.046), and being affected (OR 2.16, p = 0.01). Among unaffected participants only, endorsement of a genetic model was strongly correlated with perceived stigma (rs = 0.30, p = 0.004). Perceiving the family environment as an important factor in causing bipolar disorder was significantly associated with psychological distress (OR 1.58, p = 0.043) among unaffected participants. Among affected participants, perceived stigma was significantly correlated with psychological distress (OR 2.44, p = 0.02), controlling for severity of symptoms (p < 0.001). CONCLUSIONS: Having a genetic explanation for bipolar disorder may exacerbate associative stigma among unaffected members from families with multiple cases of bipolar disorder, while it does not impact on perceived stigma among affected family members. Affected family members may benefit from interventions to ameliorate the adverse effects of perceived stigma.

Evaluation of the needs and concerns of partners of women at high risk of developing breast/ovarian cancer.

This exploratory study investigates the experience of partners of women at high risk of developing breast/ovarian cancer and reports on the partners' views concerning their relationship, communication, future planning, children and childbearing, involvement in decision-making regarding screening and prophylactic measures, and information and support needs. In-depth interviews were conducted with 15 partners. Of these, seven were partners of women who were BRCA1/2 mutation carriers, five were partners of women with unknown mutation status, and three were partners of women who were non-carriers. None of the women had a previous diagnosis of breast or ovarian cancer. Partners of carriers and women with unknown mutation status were found to be more distressed than partners of non-carriers, with partners of mutation carriers reporting the most difficulties. Factors associated with better adjustment and coping for partners included dealing with this situation as a team with their wife, greater involvement in decision-making, satisfaction with their supportive roles and being optimistic. Decision-making difficulties in relation to prophylactic measures, concerns about their children possibly being at increased cancer risk, as well as the need to receive information directly from health professionals and the wish to meet other partners were also discussed.

Impact of familial adenomatous polyposis on young adults: attitudes toward genetic testing, support, and information needs.

PURPOSE: The study assessed views concerning genetic testing and information and support needs among young adults aged 18 to 35 years with a diagnosis of or at risk of developing familial adenomatous polyposis. METHODS: A total of 88 participants were recruited through Hereditary Bowel Cancer Registries and assessed using self-administered questionnaires. RESULTS: The average age of participants was 28 years, and the average age at the time of their last genetic consultation was 23 years. Although 75% would consider prenatal genetic testing, only 21% would consider termination of an affected pregnancy. Sixty-one percent selected "at birth" or "early childhood" as the preferred age for genetic testing of offspring. Participants' highest areas of unmet support needs were with regard to anxiety about their children having familial adenomatous polyposis (39%) and fear of developing cancer (28%). CONCLUSION: The parental desire to test children before it is clinically indicated may be a source of distress and create conflict with genetic services. These findings demonstrate that familial adenomatous polyposis may significantly impact young adults, with many having unmet support needs. The length of time since the last genetic consultation and the young age at which these consultations took place suggest that clinics should consider a means of regular follow-up to address these unmet needs.