Understanding technology adoption by orthodontists: A quantitative study.

INTRODUCTION: Digital scanning, treatment planning, 3-dimensional imaging, and printing are changing the practice of orthodontics. These tools are adopted with the hope that treatment becomes more predictable, efficient, and effective while reducing adverse outcomes. Digital tools are impacting care, but knowledge of nationwide adoption trends and motivators is incomplete. METHODS: We aimed to identify adoption decision-makers, information sources, incentives, and barriers through the first nationwide survey of American Association of Orthodontics members on their technology adoption habits, needs, and outcomes. Data were assessed using descriptive and bivariate analyses. The survey was developed from a comprehensive qualitative interview phase as part of a mixed methodology study. RESULTS: Responses (n = 343) revealed orthodontists make adoption decisions on the basis of advice from other dentists and company representatives while rarely consulting staff or research literature. Continuing education and meetings are most effective at disseminating information to practicing doctors, whereas journals generate less impact. Key adoption incentives include added capabilities, practice efficiency, ease of implementation, and performance, whereas cost is the main barrier to purchase. Early adopters with larger practices charge higher fees than other adopters to support the costs of technologies. Treatment outcome is not a primary adoption incentive for specific technologies. CONCLUSIONS: Orthodontists positively perceive the influence of intraoral scanning, cone-beam computed tomography imaging, 3-dimensional printing, computer-aided design-computer-aided manufacturing archwires, and clear aligner therapy on their practice and patient care. The orthodontic technological transformation is underway, and knowledge of adoption can guide our transition into modern practice, in which digital tools are effective adjuncts to the specialists' expertise.

Material and psychological financial hardship related to employment disruption among female adolescent and young adult cancer survivors.

BACKGROUND: The importance of addressing adverse financial effects of cancer among adolescents and young adults (AYAs) is paramount as survival improves. In the current study, the authors examined whether cancer-related employment disruption was associated with financial hardship among female AYA cancer survivors in North Carolina and California. METHODS: AYA cancer survivors identified through the North Carolina Central Cancer Registry and the Kaiser Permanente Northern/Southern California tumor registries responded to an online survey. Disrupted employment was defined as reducing hours, taking temporary leave, or stopping work completely because of cancer. Financial hardship was defined as material conditions or psychological distress related to cancer. Descriptive statistics and chi-square tests were used to characterize the invited sample and survey respondents. Marginal structural binomial regression models were used to estimate prevalence differences (PDs) and 95% confidence intervals (95% CIs). RESULTS: Among 1328 women employed at the time of their diagnosis, women were a median age of 34 years at the time of diagnosis and 7 years from diagnosis at the time of the survey and approximately 32% experienced employment disruption. A substantial percentage reported financial hardship related to material conditions (27%) or psychological distress (50%). In adjusted analyses, women with disrupted employment had a 17% higher burden of material conditions (95% CI, 10%-23%) and an 8% higher burden of psychological distress (95% CI, 1%-16%) compared with those without disruption. CONCLUSIONS: Financial hardship related to employment disruption among female AYA cancer survivors can be substantial. Interventions to promote job maintenance and transition back to the workforce after treatment, as well as improved workplace accommodations and benefits, present an opportunity to improve cancer survivorship.

Parenting through grief: A cross-sectional study of recently bereaved adults with minor children.

BACKGROUND: Grieving adults raising parentally-bereaved minor children experience persistently elevated symptoms of depression and grief. However, the factors associated with their mental health outcomes are not well understood. AIM: To investigate the psychosocial and demographic characteristics associated with grief distress and depressive symptom severity in bereaved adults with minor children. DESIGN: Cross-sectional, web-based survey. SETTING/PARTICIPANTS: Eight hundred forty-five bereaved adults raising minor (age <18 years) children who had experienced the death of a co-parent. Primary outcomes were grief distress (Prolonged Grief Disorder-13), depressive symptoms (Patient-Reported Outcomes Measurement Information System-Depression), and widowed parenting self-efficacy (WPSES). RESULTS: Mean grief scores were 33.5; mean depression scores were 58.3. Among the 690 individuals more than 6 months bereaved, 132 (19.3%) met criteria for prolonged grief disorder. In adjusted models, participants reporting higher grief scores were more recently bereaved, identified as mothers, non-Caucasian, had lower education and income, and had not anticipated their co-parent's death. The statistical modeling results for depression scores were similar to grief scores except that depression was not associated with anticipation of co-parent death. Parents reporting lower WPSES scores had higher grief and depression scores. Retrospective assessments of more intense parenting worries at the time of co-parent death were also associated with higher grief and depression scores. CONCLUSIONS: For bereaved adults with minor children, unanticipated co-parent death was linked with higher grief distress but not symptoms of depression. Addressing parenting concerns may represent a common pathway for improving the mental health of parentally-bereaved families.

Understanding health-related quality of life in adult women with metastatic cancer who have dependent children.

BACKGROUND: Cancer is a leading cause of death among women of parenting age in the United States. Women living with advanced or incurable cancer who have dependent children experience high rates of depression and anxiety as well as unique parenting challenges. To the authors' knowledge, few studies to date have examined the parenting factors associated with health-related quality of life (HRQOL) in women with advanced cancer. METHODS: The authors conducted a cross-sectional, Web-based survey of the psychosocial concerns of 224 women with a tumor-node-metastasis staging system of the AJCC stage IV solid tumor malignancy who had at least 1 child aged <18 years. Participants completed validated measures of HRQOL (Functional Assessment of Cancer Therapy-General [FACT-G]); depression and anxiety symptom severity; functional status; parenting concerns; and investigator-designed questions to assess demographic, communication, and parenting characteristics. Multiple linear regression models were estimated to identify factors associated with FACT-G total and subscale scores. RESULTS: The mean FACT-G score was 66 (standard deviation, 16). The mean Emotional Well-Being subscale scores were particularly low (13; standard deviation, 5). In multivariable linear regression models, parenting variables explained nearly 40% of the HRQOL model variance. In the fully adjusted model, parenting concerns and the absence of parental prognostic communication with children both were found to be significantly associated with HRQOL scores. For each 1-point increase in parenting concern severity, FACT-G scores decreased by 4 points (P = .003). CONCLUSIONS: Women with metastatic cancer who are parents of dependent children are at risk of high psychological distress and low HRQOL. Parenting factors may have a negative influence on HRQOL in this patient population. Cancer 2018;124:2629-36. © 2018 American Cancer Society.

Widowed parenting self-efficacy scale: A new measure.

The authors developed and tested a novel measure of parenting self-efficacy specifically for recently widowed parents of dependent-age children. They tested the scale among 244 recently widowed fathers via an open-access web survey. Exploratory factor analysis identified 3 factors: perception of meeting parenting expectations (α = .88), provision of effective discipline (α = .69), and sense of parental burden (α = .69). Scores on the new scale correlated positively with Kansas Parenting Satisfaction and Psychological Adaptation Scale scores, and negatively with CES-D (depression) and TRIG (grief) scale scores. The resulting 9-item Widowed Parenting Self Efficacy Scale is a promising measure for use in research and clinical settings.

Suboptimal surveillance for and knowledge of hepatocellular carcinoma among primary care providers.

BACKGROUND & AIMS: A large proportion of patients with cirrhosis are seen only by their primary care provider (PCP). Surveillance for hepatocellular carcinoma (HCC) therefore depends on PCPs in these cases. We aimed to assess PCP knowledge and practice of HCC surveillance. METHODS: We contacted a random sample of 1000 North Carolina PCPs by mail. All PCPs contacted received an introductory letter followed by a 12-item questionnaire addressing HCC surveillance knowledge and practice. RESULTS: A total of 391 PCPs (39%) completed the survey; 89% saw patients with cirrhosis in their practice, but only 45% screened for HCC. Among PCPs who screened for HCC, the most common methods were ultrasound analysis and measurement of α-fetoprotein level (66%). Reasons for surveillance included supported by evidence (72%), recommended by medical societies (42%), and malpractice liability for not performing surveillance (26%). Of PCPs who did not screen, 84% referred to gastroenterologists for surveillance decisions, 24% were unaware of recommendations, 8% were uncertain of the benefits, and 8% were concerned about cost. Hepatic resection and liver transplantation were identified as effective therapies by 67% and 56% of PCPs, respectively, but all other effective therapies were identified by less than half (transarterial chemoembolization by 42%, radiofrequency ablation by 35%, and sorafenib by 26%). The ability to identify at least 1 effective therapy was associated independently with surveillance (odds ratio, 2.1; 95% confidence interval, 1.1-4.0). CONCLUSIONS: Most PCPs see patients with cirrhosis, but only a minority screen for HCC. PCP knowledge of effective HCC therapy options is suboptimal. Efforts to enlist PCPs in HCC surveillance may be best served by increasing their knowledge of effective therapies.

An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer.

OBJECTIVE: Effective physician communication about prognosis is a critical aspect of quality care for families affected by terminal illness. This is particularly important for spousal caregivers of terminally ill parents of dependent children, who may have unique needs for communication about anticipated death. The objective of this study was to explore end-of-life prognostic communication experiences reported by bereaved fathers whose wives died from cancer. METHODS: From October 2012 to November 2013 we surveyed widowed fathers whose wives died from cancer through an open-access educational website. The survey included the following open-ended questions regarding prognostic communication: 'What is the most important thing you would like us to know about whether/how your wife's doctors communicated with you about her anticipated death? What do you wish had been different, if anything?' We performed traditional content analysis of responses. Two researchers coded and categorized the data. RESULTS: Two hundred forty-four men responded to the survey questions on prognostic communication. Major themes addressed by respondents were the importance of clear and honest communication and physician bedside manner. They also identified unmet information needs, including wanting to know prognosis sooner. Relevant sub-themes included death coming as a surprise, avoidance, and caregiver regret. CONCLUSIONS: Surviving spouses due to cancer can provide important insights for health care providers about optimum prognostic communication at the end of life. Increased physician attention to the communication preferences of both patients and their partners may improve bereavement outcomes for family members.

Overlooked and underserved: Widowed fathers with dependent-age children.

OBJECTIVE: Widowed fathers and their children are at heightened risk for poor coping and maladaptive psychosocial outcomes. This exploratory study is the first to explicitly examine the psychological characteristics of this population of fathers. METHOD: Some 259 fathers (mean age = 46.81; 90% Caucasian) with dependent-age children and whose wives had died from cancer within the previous five years completed a web-based survey that consisted of demographic questions, the Center for Epidemiologic Studies Depression Scale (CES-D), the Texas Inventory of Grief-Revised (TRIG-R), the Psychological Adaptation Scale (PAS), the Kansas Parental Satisfaction Scale (KPSS), and items assessing perceived parental efficacy. RESULTS: Fathers were found to have elevated depressive (CES-D mean = 22.6) and grief (TRIG-R mean = 70.3) symptomatology, low adaptation (PAS mean = 3.2), and high levels of stress related to their parenting role. They reported being satisfied with their parenting (KPSS mean = 15.8) and having met their own parental expectations. Multivariate analyses revealed an association between father's age and depression (p = <0.01), with younger fathers reporting greater depressive symptoms. Psychological adaptation was positively correlated with being in a romantic relationship (p = 0.02) and age of oldest child (p = 0.02). SIGNIFICANCE OF RESULTS: The results of our exploratory study suggest that, while widowed fathers perceive themselves as meeting their parental responsibilities, it comes at a substantial psychological cost, with particularly high stress related to being a sole parent. These findings may help guide interventions for this neglected population and underscore the importance of developing targeted therapies and research protocols to address their needs.

Use of the National Cancer Institute Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events to assess treatment tolerability in pulmonary arterial hypertension: qualitative patient research findings in current and former users of oral selexipag.

BACKGROUND: Understanding patients' perspectives regarding drug tolerability, in addition to effectiveness, provides a complete picture of the patient experience and supports more informed therapeutic decision-making. The item library of the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed to measure patient-reported frequency, severity, and interference of adverse events (AEs) associated with cancer therapies. This qualitative interview study assessed the suitability of items selected from the PRO-CTCAE library for assessing tolerability of selexipag, a medication targeting the prostacyclin pathway for patients with pulmonary arterial hypertension (PAH). METHODS: Two rounds of 10 qualitative, web-assisted telephone interviews following a semi-structured guide were conducted in individuals with recent experience taking oral selexipag for PAH. Each interview included concept elicitation to gather participants' perspectives on symptomatic AEs (type, frequency, severity, and interference) and cognitive debriefing of PRO-CTCAE items addressing the most frequently reported AEs of oral selexipag. RESULTS: Interviews were conducted with 20 participants with PAH (mean [range] age 50 [24-68] years; 75% female; 85% in World Health Organization Functional Class II-III), comprising different races/ethnicities, levels of education, and employment status. Fifteen participants were currently treated with selexipag; five had taken selexipag for ≥ 6 months before discontinuing. The most frequently reported AEs included headache, jaw pain, and nausea (n = 15, 12, and 10 participants, respectively). Diarrhea and headache were identified as the most bothersome AEs by 5 and 4 participants, respectively. Some AEs were transitory (e.g., jaw pain); others were long-lasting (e.g., muscle pain). Based on findings from Round 1 interviews, a flushing item was added and the PRO-CTCAE general pain item was modified to be specific to jaw pain for testing in Round 2. Interview findings identified the following AEs as relevant to assess in a PAH clinical trial: nausea, vomiting, diarrhea, flushing, jaw pain, headache, aching muscles, and aching joints. CONCLUSIONS: The PRO-CTCAE items selected in this study and the additional symptomatic AEs identified as patient-relevant have the potential to be included in assessments capturing the patient perspective on tolerability in future studies of selexipag and possibly other PAH therapies.

Use of global coronary heart disease risk assessment in practice: a cross-sectional survey of a sample of U.S. physicians.

BACKGROUND: Global coronary heart disease (CHD) risk assessment is recommended to guide primary preventive pharmacotherapy. However, little is known about physicians' understanding and use of global CHD risk assessment. Our objective was to examine US physicians' awareness, use, and attitudes regarding global CHD risk assessment in clinical practice, and how these vary by provider specialty. METHODS: Using a web-based survey of US family physicians, general internists, and cardiologists, we examined awareness of tools available to calculate CHD risk, method and use of CHD risk assessment, attitudes towards CHD risk assessment, and frequency of using CHD risk assessment to guide recommendations of aspirin, lipid-lowering and blood pressure (BP) lowering therapies for primary prevention. Characteristics of physicians indicating they use CHD risk assessments were compared in unadjusted and adjusted analyses. RESULTS: A total of 952 physicians completed the questionnaire, with 92% reporting awareness of tools available to calculate CHD global risk. Among those aware of such tools, over 80% agreed that CHD risk calculation is useful, improves patient care, and leads to better decisions about recommending preventive therapies. However, only 41% use CHD risk assessment in practice. The most commonly reported barrier to CHD risk assessment is that it is too time consuming. Among respondents who calculate global CHD risk, 69% indicated they use it to guide lipid lowering therapy recommendations; 54% use it to guide aspirin therapy recommendations; and 48% use it to guide BP lowering therapy. Only 40% of respondents who use global CHD risk routinely tell patients their risk. Use of a personal digital assistant or smart phone was associated with reported use of CHD risk assessment (adjusted OR 1.58; 95% CI 1.17-2.12). CONCLUSIONS: Reported awareness of tools to calculate global CHD risk appears high, but the majority of physicians in this sample do not use CHD risk assessments in practice. A minority of physicians in this sample use global CHD risk to guide prescription decisions or to motivate patients. Educational interventions and system improvements to improve physicians' effective use of global CHD risk assessment should be developed and tested.

Adaptation and Psychometric Evaluation of the Parenting Concerns Questionnaire-Advanced Disease.

PURPOSE: When patients with advanced cancer have minor children (age < 18), their health-related quality of life is closely linked to their concerns about the impact of progressive illness and death on their children. The Parenting Concerns Questionnaire (PCQ), a validated measure for parents with cancer, does not capture the full range of concerns in advanced cancer. The aim of this was study was to adapt and establish psychometrics for the PCQ for advanced disease (PCQ-AD). METHODS: After generating an initial item-bank, we conducted concept elicitation interviews with clinicians (n = 8) and cognitive interviews with patients (n = 23) for face validity. New items addressed concerns about impact of parental death, making every moment count, communication, and financial impact of cancer on children. We administered 21 candidate items to 151 parents with advanced cancer. We conducted confirmatory factor analysis (CFA), calculated internal consistency, and assessed convergent and known-groups validity. RESULTS: We removed 8 redundant items due to residual covariation between items. CFA of the 13-item PCQ-AD demonstrated satisfactory fit (CFI = 0.971, TLI = 0.966, RMSEA = 0.081) and high internal consistency (Cronbach's alpha = 0.94, composite reliability = 0.95). The PCQ-AD demonstrated convergent validity and known-groups validity; patients with poor functional status reported higher scores than patients with better functional status (Cohen's d = 0.56, p = 0.002). CONCLUSION: Adaptation of the PCQ yielded the addition of constructs important in advanced cancer. The PCQ-AD appears to be a reliable and valid measure of parenting concerns in advanced cancer, but future studies are needed to examine measure performance in diverse populations and responsiveness of the PCQ-AD to interventions.

Acceptance of a Polypill approach to prevent cardiovascular disease among a sample of U.S. physicians.

OBJECTIVE: To examine US physicians' self-reported knowledge about the Polypill, factors considered in deciding whether to prescribe it, and acceptance of prescribing it for cardiovascular disease (CVD) prevention. METHODS: Numerical scales of 0 (lowest) to 5 (highest) were used to assess self-reported knowledge and importance of factors relevant to making a decision to prescribe a Polypill. Characteristics of physicians indicating they would prescribe a Polypill were compared. RESULTS: Among 952 physicians surveyed February through March 2010, mean self-rated knowledge about the Polypill was 2.0±1.5. Importance of degree of CVD event reduction, cost, and side effects were rated with means of 4.4, 4.3, and 4.3, respectively. 83% of respondents indicated they would "definitely" or "probably" prescribe it for high-risk patients; 62% would do so for moderate risk patients. Physicians with self-rated knowledge at ≥75th percentile were more likely to indicate they would prescribe a Polypill for moderate risk (adjusted OR 2.16; 95% CI 1.60-2.93) and high-risk (adjusted OR 1.57; 95% CI 1.07-2.32) patients. CONCLUSION: Among this sample of physicians, there is relatively high acceptance of prescribing a Polypill for CVD prevention despite relatively modest knowledge about it.

The View from the Benches: Scientists' Perspectives on the Uses and Governance of Human Gene-Editing Research.

The advent of human gene editing has stimulated international interest in how best to govern this research. However, research on stakeholder views has neglected scientists themselves. We surveyed 212 scientists who use gene editing in their work. Questions captured views on oversight and use of somatic and germline human gene editing for treatment, prevention, and enhancement. More respondents were supportive of somatic than germline editing, and more supported gene editing for treatment compared to prevention. Few supported its use for enhancement. When presented with specific conditions, levels of support for somatic editing differed by type of condition. Almost all respondents said scientists and national government representatives should be involved in oversight, but only 28% said scientists are best positioned to oversee gene-editing research. These results can inform the development of sound approaches to research governance, demonstrating the importance of identifying specific gene-editing uses when considering oversight.

Development and validation of a measure of comprehension of genomic screening-negative results (CoG-NR).

To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.

Patient/Provider Discussions About Clinical Trial Participation and Reasons for Nonparticipation Among Adolescent and Young Adult Women with Cancer.

Purpose: Clinical trial enrollment is low among adolescents and young adults (AYAs) with cancer and may contribute to inferior survival gains in recent years in this population compared with other age groups. We investigated clinical trial participation among AYA women with cancer, and examined whether patients discussed clinical trial participation with their doctor and reasons for nonparticipation. Methods: Women with a diagnosis of breast cancer, thyroid cancer, melanoma, lymphoma, or gynecologic cancer at ages 15-39 years during 2004-2016 were identified from the North Carolina Central Cancer Registry and the Kaiser Permanente Southern California health system. During 2018-2019, a total of 1264 eligible women completed an online survey (response = 13%), which examined survivorship issues among AYAs. Results: Overall, 5% of participants reported that they had participated in a clinical trial. Most women reported that they had not discussed clinical trial participation with a medical provider (76%) and that they did not know whether a relevant trial was available for their cancer (73%). Among those who knew that a trial was available but did not participate, the most commonly reported reasons for nonparticipation included concerns about side effects of the treatment in the trial and concerns that the treatment had not been sufficiently tested. Conclusion: Only a small proportion of AYA women with cancer in our cohort reported discussing a clinical trial with a provider or knowing whether a relevant trial was available. Our findings point to opportunities to improve patient/provider communication to increase clinical trial enrollment among AYAs with cancer.

Psychological and parental functioning of widowed fathers: The first two years.

Widowed parents play a critical role in promoting family adaptation and facilitating their children's adjustment to the loss of a parent; yet the psychological wellbeing of these parents has received scant attention. In this study we examined depressive symptoms and grief intensity in 252 spousally bereaved men with dependent-age children. Participants learned of the study and completed initial surveys at variable time points during their first 2 years of bereavement. Depressive and grief symptoms remained persistently high, with 45% of the sample exceeding screening thresholds for clinically significant depressive symptoms two years after the death of their spouses. In linear regression models, higher intensity or frequency of depression and grief symptoms were associated with poorer psychological adaptation, lower parenting self-efficacy, and lower parenting satisfaction scores. Relationships between fathers' distress and potentially modifiable end-of-life variables regarding their spouses were examined. Notably, those who reported that their wives were at peace with dying had lower depressive and grief scores at various intervals. Overall, the magnitude and duration of the depressive and grief symptoms suggests that widowed fathers' psychological distress does not quickly abate over the first 2 years of bereavement, which may be attributable to the unique set of bereavement challenges facing widowed parents such as facilitating their children's grief, assuming sole parenting responsibilities, and managing a household on their own. The findings underscore the need to further examine emotional distress in widowed parents and how their wellbeing impacts family functioning. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Psychometric Analysis of the Parenting Concerns Questionnaire in Women With Metastatic Cancer.

CONTEXT: Parenting concerns are a major source of distress for patients with advanced cancer. However, validated tools to measure this construct in advanced cancer patients are lacking. OBJECTIVES: The Parenting Concerns Questionnaire (PCQ) is the only tool available to assess parenting concerns in cancer patients, yet its psychometric properties have not been fully evaluated. METHODS: This cross-sectional Web-based survey of the psychosocial concerns included 211 women with Stage IV solid tumor malignancy who had at least one minor child in the home. Participants completed a battery of questionnaires assessing parenting concerns, health-related quality of life (HRQOL), depression and anxiety symptoms, and sociodemographic and clinical characteristics. Internal consistency was assessed by computing Cronbach's alpha. Convergent validity was evaluated using correlations of the PCQ with anxiety and depression symptom severity and HRQOL. We examined the PCQ's underlying dimensions with confirmatory factor analysis. RESULTS: The mean total PCQ score for the sample was 2.2 (SD, 0.7), corresponding to "a little bit concerned." Internal consistency was 0.82. The PCQ demonstrated adequate convergent validity with expected correlations with anxiety (r = 0.49) and depression (r = 0.56) symptom severity, and HRQOL (r = -0.61). The original three-factor structure was not fully supported by confirmatory factor analysis. CONCLUSION: The PCQ assesses a unique aspect of psychological distress in cancer patients. It demonstrated adequate reliability and convergent validity, but its original three-factor structure was not supported in a population of patients with metastatic cancer. The PCQ would benefit from further testing and refinement to enhance its representation of parenting concerns in metastatic cancer.

Assessing racial and ethnic differences in medical student knowledge, attitudes and behaviors regarding organ donation.

OBJECTIVES: Previous studies have demonstrated that informed healthcare providers could increase patient willingness to donate. We assessed medical students' knowledge and attitudes to determine their preparedness to encourage organ donation. METHODS: 500 first- and second-year students attending one of three Ohio medical schools completed the 41-item questionnaire (93% cooperation rate). The questions evaluated students' donation knowledge, training, exposure and perceived barriers as well as their willingness to donate. RESULTS: On univariate analysis, Asians (OR: 0.5, 95% CI: 0.2-0.9) and blacks (OR: 0.1, 95% CI: 0.1-0.2) were less willing than whites to donate. On multivariate analysis, race was no longer significantly associated with willingness to donate,Three factors were associated with a decreased donation willingness: wanting burial with organs intact (OR: 0.1, 95%CI: 0.1-0.2), having personal conflicts with donation (OR: 0.2, 95%Cl: 0.1-0.6), and concern that carrying a donor card will lead to insufficient medical care (OR: 0.2, 95% Cl: 0.1-0.4). Of note, knowledge was not associated with willingness to donate. CONCLUSION: In this medical student cohort, minorities were less willing to donate. Three factors were associated with a decreased willingness to donate regardless of student race. Addressing these barriers may increase student donation willingness, and physicians should encourage donation discussions with their patients.

"Forward-Thinking" in U.S. Biobanking.

AIMS: Do biobanks enact policies and plans that allow them to anticipate and respond to potential challenges? If a biobank has one such policy or plan, is it likely to have more? Using survey data from 456 U.S. biobanks, we assess four possible indicators of such "forward-thinking." METHODS: We present response frequencies and cross-tabulations regarding policies for return of results and ownership of specimens, and for having a formal business plan and a plan for what happens to specimens if the biobank closes. We analyze the relationships among these indicators, using chi-square for tests of statistical significance. RESULTS: Policies-Sixty-two percent of biobanks have a policy about returning individual research results; 70% have a policy designating ownership of specimens and/or technology. Having these two policies is significantly related (p < 0.001). Plans-34% of biobanks have a formal business plan; 26% have a written plan for what will happen to the specimens if the biobank closes. Having these two plans is significantly related (p < 0.001). Relationships among indicators-only 7% of biobanks are forward-thinking across all four indicators; 12% are forward-thinking across none. DISCUSSION: The two policies we examined tend to occur together, as do the two plans. These policies and plans seem to tap different aspects of accountability and responsiveness. Specifically, the policies reflect issues most commonly raised in the ethical and legal literature on biobanking, while the plans are indicators of sustainability, a separate area of concern in biobanking.