Personality as a predictor of well-being in a randomized trial of a mindfulness-based stress reduction of Danish women with breast cancer.

Purpose: Many clinical interventions have been designed to improve psychological well-being in women with breast cancer; however, there are individual differences in the extent of benefit across participants. Mindfulness-Based Stress Reduction (MBSR) is a structured 8-week intervention that has been shown to reduce depression and anxiety for patients with breast cancer. Personality factors may influence which participants benefit more from various psychological interventions, including MBSR.Design: In a secondary analysis, we examined whether personality factors accounted for variability in response to an MBSR intervention for women with breast cancer.Sample: Two hundred eighty Danish women with breast cancer who completed the Mindfulness and Cancer Mamma trial were included in this analysis.Methods: Using multiple regression analyses, we investigated whether personality factors, measured by the NEO-PI-R, contribute independently or interact with treatment to predict depressive symptoms at 2, 6, and 12-month follow-up.Findings: The interaction between low conscientiousness and MBSR, as well as high neuroticism and MBSR each predicted significantly lower levels of distress at 12-month follow-up compared to women who higher in conscientious or lower in neuroticism.Conclusions: Personality factors may contribute to the impact of psychosocial interventions, such as MBSR, on psychological well-being.Implications for Psychosocial Providers: Utilizing personality measures may assist providers in identifying which patients may benefit from mindfulness therapies.

Cognitive influences as mediators of family and peer support for pediatric cancer survivors' physical activity.

OBJECTIVE: The objective of this study was to determine the extent to which self-efficacy mediates the relations between social support and childhood cancer survivors' physical activity (PA). METHODS: A structured telephone survey was conducted with 105 childhood cancer survivors aged 8-16 years. Participants completed measures assessing their PA as well as proposed predictors of PA including various demographic, medical, cognitive, and social influences. Multiple mediation analyses were utilized to evaluate the relations between social support, cognitive influences, and survivor PA. RESULTS: Cognitive influences, including perceived benefits, barriers, and self-efficacy for PA, partially mediated the influence of family and peer support on survivor PA. Self-efficacy emerged as a significant unique mediator, indicating that higher levels of family and peer support are associated with higher levels of survivor PA via increases in survivor self-efficacy. CONCLUSIONS: Social support has both direct and indirect influences on survivor PA. Indirectly, social support influences PA via survivor self-efficacy. Interventions should target family and peer support as well as self-efficacy to increase survivor PA.

Social, demographic, and medical influences on physical activity in child and adolescent cancer survivors.

OBJECTIVE: This study evaluated associations between social, environmental, demographic, and medical predictors, and child and adolescent survivors' physical activity (PA). METHODS: A structured telephone survey was conducted with 105 caregiver-survivor (aged 8-16 years) pairs and 36 caregivers of younger survivors (aged 6-7 years) alone. Participants completed measures assessing survivor PA and proposed predictors of PA including demographic, medical, social, and environmental influences. RESULTS: Social influences, including family PA, family support for PA, and peer support for PA, emerged as unique predictors of survivor PA. These variables predicted PA after controlling for demographic and medical factors. Child survivors' PA was more strongly predicted by family influences while adolescent survivors' PA was more strongly influenced by family and peer influences. CONCLUSIONS: Child and adolescent survivors' PA is strongly influenced by social factors. This finding parallels results with healthy children. PA interventions should focus on family and peer support to increase survivors' PA behaviors.

Results communication and patient education after screening for possible hemochromatosis and iron overload: experience from the HEIRS Study of a large ethnically and linguistically diverse group.

PURPOSE: We assessed the effectiveness of educational interventions for conveying clinical findings and information about hereditary hemochromatosis (HH) and iron overload (IO) to individuals evaluated clinically after initial screening for HH/IO with serum ferritin (SF) concentration, transferrin saturation (TS), and HFE genotyping. METHODS: A questionnaire mailed to 2300 cases and controls 1 month after a letter summarizing clinical findings measured understanding of results and recommendations, knowledge of HH/IO, and satisfaction with information received. RESULTS: Of 1622 (70.5%) participants completing relevant items, 83.6% were satisfied with receiving initial screening results by mail, 93.4% found information clear and easy to understand, 89.2% generally felt they got enough information, but 47.5% still had questions. C282Y/C282Y homozygosity with normal TS/SF predicted the best understanding of genetic results. Many with no mutations thought relatives were at risk. Iron levels created most confusion, and a third incorrectly recalled treatment recommendations. Having any abnormal result, lower education, older age, and being non-white, and/or non-English speaking predicted lower understanding. CONCLUSIONS: Combining genotypic and phenotypic screening for HH/IO creates additional difficulties in communicating results-particularly to those with low health literacy. Explaining aberrant iron TS and SF levels and low-risk genotypes, follow-up recommendations, and risk to relatives will need creative, culturally appropriate strategies.

Health-related quality of life in a racially diverse population screened for hemochromatosis: results from the Hemochromatosis and Iron Overload Screening (HEIRS) study.

PURPOSE: The HEIRS Study screened 101,168 primary care participants for iron overload with serum transferrin saturation (TS), serum ferritin (SF), and C282Y and H63D mutations of the HFE gene. The objective of this study was to evaluate the impact of screening on participants' well-being. METHODS: All C282Y homozygotes, participants with an elevated TS and SF concentration, and a control group of phenotype-genotype negative persons, with neither C282Y nor H63D mutations in the HFE gene were recalled for a clinical evaluation. Health-related quality of life was assessed before screening and approximately 1 week after receipt of the results. Health worries were assessed only at follow-up. RESULTS: Participants (N = 1478) completed both initial and follow-up surveys. After adjusting for model covariates, phenotype and genotype combinations were statistically significant predictors of changes in psychological well-being (P = 0.0001) and general health (P = 0.0014). C282Y homozygotes with transient elevations in TS or SF were significantly more likely to worry about their health compared to study controls. Race, ethnicity, and preferred language subgroups differed on psychological well-being, general health, and health worry. CONCLUSION: Iron phenotype and HFE genotype are associated with health-related quality of life. Health worry was greatest among those considered genetically "at risk. " This may have important implications for multi-ethnic population-based screening studies in which genotype and phenotype are communicated.

Predictors of belief that genetic test information about hemochromatosis should be shared with family members.

We queried 101,951 white, Hispanic, black, Asian, American Indian (i.e., American Indian or Alaska Native in the United States and North American Indian, Metis, or Inuit in Canada) and Pacific Islander (including Native Hawaiian) adults who agreed to be genotypically and phenotypically screened for hemochromatosis as part of the Hemochromatosis and Iron Overload Screening (HEIRS) study about their views on sharing genetic test information with family members. Multiple logistic regression (adjusting for study site, age group, race/ethnicity, preferred language, gender, education group, income group, SF-36 General Health and Mental Health subscales, perceived benefits and limitations of genetic testing, and belief that genetic testing is a good idea) evaluated independent predictors of responding "Strongly Agree" or "Agree" versus "Disagree" or "Strongly Disagree" to the statement "Information about a person's genetic risk should be shared with family members". Agreement that genetic risk information should be shared with family members was high (93% in the overall sample of 78,952 who answered this question), but differed among racial/ethnic groups. Hispanics were significantly less likely to agree that genetic test information should be shared with family members (i.e., 88% versus 92% or more among all other ethnicities). The relationship of perceived limitations and benefits of testing, gender, and age group to the belief that information should be shared differed among racial/ethnic groups, with Spanish-preferring Hispanics being the most different from other subgroups.

The effect of preventability and severity levels of a genetic disorder on desire to communicate genetic testing information to family members.

This study examined the impact of severity and preventability of a genetic disorder on belief that genetic test results should be shared with family members, desire to be tested, and opinions about physician?s role in sharing information. Participants were 359 undergraduate students who received one of four descriptions of a fictitious genetic disorder called hemocythemia (i.e., factorial combination of high versus low disease preventability and high versus low disease severity). Logistic regression analyses indicated that disease severity and preventability did not influence agreement that genetic information should be shared with family members, interest in being tested for the disorder, or agreement that physicians should share genetic information without permission. Those who read about the disorder as preventable were more likely to agree that their family members should be tested for the disorder (odds ratio [OR] = 1.82, p < 0.05). Females, African Americans, and those of other races were more likely to agree that they would want their family members tested for hemocythemia than males or European Americans (p < 0.05). Describing the disorder as preventable minimized the effect of the severity manipulation on perception of disease severity (p < 0.05). Understanding a disorder to be preventable may increase encouragement of family members to be tested and affect perceived seriousness of the condition.

Genetic testing for hemochromatosis: attitudes and acceptability among young and older adults.

Hemochromatosis is a genetic disorder of iron overload common in persons of northern European descent. We examined attitudes about testing for hemochromatosis in 118 young adults (YA) (19.7 years +/- 1.9) and 50 older adults (OA) (58.5 years +/- 13.7). Participants read about hemochromatosis and two related tests: transferrin saturation measurement (iron test) and HFE genotyping (HFE test). Interest in each test and attitudes about genetic testing were assessed. More than 80% of all participants were willing to undergo either test, if offered. A majority preferred the iron test because of the information it provides about current health. A majority of participants identified at least one benefit of genetic testing, with improved health through early detection/prevention being most common. YA were more likely to report disadvantages of genetic testing (p < 0.001) and were more concerned about potential negative psychological effects (p < 0.005). OA were more concerned about potential discrimination (p < 0.0001). These findings suggest that young and older adults view genetic testing as beneficial and would accept HFE testing were it offered as part of a screening program.

Attitudes about and psychosocial outcomes of HFE genotyping for hemochromatosis.

We examined attitudes regarding genetic testing and psychosocial outcomes of HFE genotyping for hemochromatosis. A total of 87 persons with hemochromatosis (patients) (39 women, 48 men), who underwent HFE genotyping, and 50 persons with hypertension (controls) (22 women, 28 men), who had not undergone HFE genotyping, completed a structured interview in which they reported attitudes about benefits and disadvantages of genetic testing and their understanding of genetics and hemochromatosis. Among patients, adherence to treatment for hemochromatosis was assessed. Controls estimated the likelihood of experiencing several potential positive and negative psychosocial outcomes after a positive genetic test. Patients reported their experience pertinent to these outcomes. Patients received information about hemochromatosis when they were diagnosed, and controls read a brief description of hemochromatosis before answering questions. Patients correctly answered 65% of knowledge questions and controls correctly answered 59%. Most participants believed genetic testing is beneficial and described few negative aspects of testing. Controls expected to experience more anxiety, depression, and anger related to a positive genetic test than was reported by patients (p < 0.001). One patient reported discrimination related to the HFE genotype. Most patients were compliant with the iron depletion and maintenance phases of treatment for hemochromatosis. Race, sex, marital status, income, education, barriers to treatment, and knowledge were not significantly associated with adherence to maintenance phlebotomy. We conclude that HFE genotyping appears to be viewed positively and would be generally accepted were it offered as part of a screening program for hemochromatosis. Persons who have not undergone genetic testing may overestimate their emotional responses to a positive test result. In the present hemochromatosis patients, few reported that HFE genotyping was accompanied by negative psychosocial outcomes.

Blood pressure reactivity to psychological stress and coronary calcification in the Coronary Artery Risk Development in Young Adults Study.

A longstanding hypothesis is that individuals who exhibit large increases in blood pressure during psychological stress are at risk for atherosclerosis. We tested whether blood pressure changes during psychological stress predict subsequent coronary calcification (CaC) in young healthy adults. We evaluated 2816 healthy black and white women, 20 to 35 years of age, from the Coronary Artery Risk Development in Young Adults Study, who were not using medication for hypertension or diabetes in 1987-1988. Participants completed video game and star tracing tasks while their blood pressure was recorded. Thirteen years later (2000-2001), they completed computed tomography measures of CaC. Overall 9.3% (261 of 2816) had CaC present at follow-up. Each 10 mm Hg change in systolic blood pressure during the video game was associated with a 24% increased odds of having CaC at follow-up (unadjusted odds ratio, 1.24; 95% CI, 1.06 to 1.46; P=0.008). This association persisted after adjustment for age, race, sex, education, smoking, alcohol, family history of myocardial infarction, smoking, daily alcohol consumption, body mass index, and resting or baseline blood pressure (odds ratio, 1.31; 95% CI, 1.08 to 1.58; P=0.006). Blood pressure changes during the star tracing task were not associated with subsequent CaC. Blood pressure changes during a video game predicted the presence of CaC 13 years later. To our knowledge, this is the first study that reports blood pressure reactivity to a stressor being related to calcification in the coronary arteries. Blood pressure reactivity may provide useful prognostic information about future risk beyond standard risk factors.

Impact of hemochromatosis screening in patients with indeterminate results: the hemochromatosis and iron overload screening study.

PURPOSE: Assess the quality of life impact of receiving indeterminate test results for hemochromatosis, a disorder involving HFE genetic mutations and/or elevated serum transferrin saturation and ferritin. METHODS: The study sample was from the Hemochromatosis and Iron Overload Screening Study, a large observational study of hemochromatosis among primary care patients in the US and Canada using HFE genotype and serum transferrin saturation and ferritin screening. Study subjects included 2,304 patients found with hemochromatosis risk of uncertain clinical significance. Assessed was SF-36 general health and emotional well-being before screening and six weeks after participants received their test results. Health worries were assessed after screening. RESULTS: Of the study subjects, 1,268 participants (51.5%) completed both assessments. Compared to normal controls, those with HFE mutations or elevated serum transferrin saturation and ferritin levels of uncertain significance were more likely to report diminished general health and mental well-being, and more health worries. These effects were associated with participants' belief of having tested positive for hemochromatosis or iron overload. CONCLUSION: Notification of indeterminate results from screening may be associated with mild negative effects on well-being, and might be a potential participant risk in screening programs for disorders with uncertain genotype-phenotype.

Perceptions and attitudes about HFE genotyping among college-age adults.

PURPOSE: Examine young adults' attitudes about HFE genotyping. METHODS: 121 college students read about hemochromatosis, transferrin saturation measurement (iron test), and HFE genotyping. Interest in testing and knowledge and attitudes about genetic testing were assessed. Participants were randomly assigned to predict either their response to a positive HFE genotype (genotype group) or a positive iron test (phenotype group). RESULTS: 71% preferred the iron test, but most would undergo either test. Learning risk and early detection/prevention were the most commonly perceived benefits; limited information about health and negative emotional consequences were the most commonly perceived disadvantages. The genotype and phenotype groups did not differ in expected worry, perceived severity, perceived risk, and preventability of organ damage. After reading the description provided, participants answered 78% of knowledge questions correctly. CONCLUSIONS: Young adults view HFE genotyping positively and report few disadvantages, but prefer the iron test for its information about current health. They appear to be receptive to public health screening for hemochromatosis.

Randomized pilot of a self-guided internet coping group for women with early-stage breast cancer.

BACKGROUND: Internet-based methods for provision of psychological support and intervention to cancer survivors hold promise for increasing the public impact of such treatments. PURPOSE: The goal of this controlled pilot study was to examine the effect and potential mechanisms of action of a self-guided, Internet-based coping-skills training group on quality of life outcomes in women with early-stage breast cancer. METHODS: Sixty-two women completed baseline evaluations and were randomized into either a small online coping group or a waiting-list control condition. RESULTS: No main effects for treatment were observed at the 12-week follow up. However, there was a significant interaction between baseline self-reported health status and treatment, such that women with poorer self-perceived health status showed greater improvement in perceived health over time when assigned to the treatment condition. Linguistic analyses revealed that positive changes across quality of life variables were associated with greater expression of negative emotions such as sadness and anxiety, greater cognitive processing, and lower expression of health-related concerns. CONCLUSIONS: These results demonstrate the potential efficacy of self-guided Internet coping groups while highlighting the limitations of such groups.

Patient acceptability of genotypic testing for hemochromatosis in primary care.

PURPOSE: Genetic screening can enable timely detection and treatment of hereditary hemochromatosis (HH). Little is known about patient acceptability of DNA testing as compared to conventional phenotypic testing. METHODS: Within the HEIRS Study, a large primary-care screening study of HH and iron overload, we randomly assigned participants to receive brief information on either HH genotypic or phenotypic testing, and assessed the willingness to accept this test. The study was designed to recruit an equal number of African Americans and Caucasians. RESULTS: A total of 2500 participants were recruited from waiting rooms of primary care practices; 2165 participants who self-identified as African Americans and Caucasians were included in the analyses. Overall, 56% had accepted a genotypic test versus 58% for a phenotypic test. Adjusting for Field Center (FC), age, gender, race, educational attainment, global health rating, and knowledge of the test, the odds ratio of accepting a genotypic versus phenotypic test was 0.85 (95% CI: 0.71, 1.02; P = 0.078). Characteristics associated with test acceptance were age 45-64 years, female gender, Caucasian race, self-rated health less than ''very good'', and knowledge of the test. Test acceptance was associated with interest in knowing more about health (81%) and in helping family members (71%). Refusal reasons included a need to talk with a doctor (44%), concern about privacy (32%), and dislike of blood drawing (29%). CONCLUSION: In this diverse sample of primary care patients, stated acceptance of genotypic testing for HH mutations was similar to phenotypic testing for blood iron. Patient education regarding the nature of test, importance of disease detection, and privacy protection appear to be essential for achieving high rates of screening participation.

Concerns in a primary care population about genetic discrimination by insurers.

PURPOSE: Fear of genetic discrimination might deter participation in research or therapy. This is a major impetus for laws limiting insurers' use of genetic information, yet there is little information about the extent of this fear in the general population and how it varies by social factors. METHODS: This study measures concern about insurance problems relating to genetic testing, as part of primary-care screening for hereditary hemochromatosis (iron overload). Data come from a multiethnic, primary care-based survey of 86,859 adults in five field centers in the United States (AL, CA, DC, HI, OR), and one in Canada (Ontario). Logistic regression was used to model the probability of agreeing to the question "Genetic testing is not a good idea because you might have trouble getting or keeping your insurance." RESULTS: Overall, 40.0% of participants agreed. Adjusting for other characteristics, African Americans and Asians were much less likely (OR = 0.52 and 0.39), and Hispanics were more likely (OR = 1.124), than Caucasians to express concern about insurance discrimination. Participants under 65 years old, US residents, and those without a high school diploma were substantially more likely to be concerned (ORs ranging from 1.4-1.6), as were participants with lower mental health scores. Education showed a nonlinear relationship, with significantly higher concern among both those with less than a high school education and those with a college degree, compared to high school graduates. CONCLUSIONS: Concern about genetic discrimination varies substantially by race and other demographic factors and by nationality. One possible explanation for lower concern about Canadians and by people over 64 is that both groups are covered by social insurance for health care (Medicare). However, US residents in states with some legal protections against genetic discrimination had more, not less, concern than either Canadians or US residents in states with no legal protections.

Patient compliance with phlebotomy therapy for iron overload associated with hemochromatosis.

OBJECTIVE: The aim of this study was to evaluate patient compliance with phlebotomy therapy of hemochromatosis-associated iron overload. METHODS: We reviewed medical records of white adults with hemochromatosis and iron overload diagnosed during medical care. We defined three elements of compliance: 1) achieving iron depletion (serum ferritin

Improving the effectiveness of adjuvant psychological treatment for women with breast cancer: the feasibility of providing online support.

Many well-designed studies have shown psychosocial treatments for cancer to be efficacious for improving patients' quality of life, but the actual impact of these treatments may be limited by low rates of participation. Web-based treatment formats could improve effectiveness by increasing availability and accessibility. Two phases of a feasibility study are reported in this article. In the first phase, we sought to assess internet access and perceived interest in online support among 136 women with breast cancer (June-October, 1999). Levels of interest in participating in an online psychosocial treatment were associated with age, outcome expectancy, and barriers to using the internet but not stage or time since diagnosis. In the second phase, we document accrual rates among several methods of recruitment during a randomized trial (February-December, 2001) and report changes over time in internet access. Recruitment rates were substantially higher when a study representative was available in clinic to provide information about the treatment than for all other methods of recruitment. Access to the internet increased between 1999 (63%) and 2001 (70%) and varied across age groups. These results suggest that internet-based psychosocial treatments, with notable limitations, are feasible for increasing the impact of psychosocial care.

Use of the internet for information and support: disclosure among persons with breast and prostate cancer.

The present study examined the feasibility of evaluating online communication of cancer patients using an automated content analysis program modified for application to cancer-related communication. Public messages posted to the Breast Cancer Discussion List and the Prostate Problems Mailing List were content analyzed uasing an augmented version of Linguistic Inquiry and Word Count to evaluate communication styles within these two cancer types. Breast cancer patients were more likely to submit multiple messages to the list and made greater use of words related to emotional disclosure and cognitive processing compared with prostate cancer patients. Prostate cancer patients were less likely to seek emotional support or repeated interaction with other patients, and more of their communication focused on cancer-related information. Use of cancer-specific word libraries significantly increased word identification within these samples. Content analysis of online communication appears to be a promising method for detecting communication differences among subgroups of cancer patients.

Treatment preferences in recurrent ovarian cancer.

OBJECTIVES: In the case of recurrent ovarian cancer, salvage therapy represents the potential to trade off between quality and quantity of life. Patient and physician face a choice between chemotherapy directed at slowing disease progression and supportive or palliative care that focuses on symptom management. To date, no studies have investigated the effects of best supportive care on ovarian cancer patients' quality of life and length of life as compared to salvage therapy. In other cancers, both quantity and quality of life considerations have been shown to affect treatment preferences. METHODS: Using a decision board, we assessed preferences for salvage therapy or palliative care in the case of recurrent ovarian cancer among 81 ovarian cancer patients receiving first-line chemotherapy and 75 Noncancer Controls. RESULTS: Compared to Noncancer Controls, ovarian cancer patients overwhelmingly preferred salvage therapy; quantity of life was of primary importance. In both groups, preference was not related to age, marital status, number of children, or employment status. On average, patients indicated they would switch from salvage therapy to palliative care when the median survival associated with salvage therapy was reduced to 5 months. Noncancer Controls would switch significantly sooner, when the median increment in survival period was reduced to 8 months. Switchpoint was not associated with life satisfaction, quality of life, or psychological or spiritual well-being in either group. CONCLUSIONS: The majority of women, independent of a cancer diagnosis, indicated a desire for continuing aggressive treatment, despite poor outcomes. Quality of life was of secondary importance, especially among ovarian cancer patients.