Quality of Life and General Health Perception in Women with Obesity

The purpose of this study was to determine the differences in general health status and quality of life between patients who present “non-normative eating behaviours” (namely, binge eating disorder, night eating syndrome, sweet /fat food cravings and continuous nibbling) and patients without these eating behaviour characteristics. A cohort of 168 women with obesity, all candidates to bariatric surgery, aged between 15 and 65 (M = 39.04; SD = 10.86), with a body mass index ranging between 30.37 and 80.65 (M = 48.79; SD = 8.37), was studied. Participants answered to a clinical interview, to SF-36 and to ORWELL-97, after their informed consent. Results suggest that women with obesity reporting binge eating disorder, night eating syndrome and continuous nibbling show poorer general health status and worst quality of life than those who do not present these “non-normative eating behaviours”. Moreover, the general health status and the quality of life of patients with sweet/fat food cravings do not differ from those who do not report this eating behaviour. Nevertheless, patients reporting the eating behaviours studied do not differ from the others regarding their body mass index.     

Sexual Consent in Heterosexual Relationships: Development of a New Measure

The extensive research on date rape attitudes and experiences has left sexual consent itself largely unexamined. The objective of this study was to develop a measure to assess women’s and men’s attitudes and behaviors regarding sexual consent. Using both focus groups (N = 18) and a mail survey (N = 514) of undergraduate students at a Canadian university, two scales of sexual consent were developed: (1) a Sexual Consent Attitudes Scale, and (2) a Sexual Consent Behaviors Scale. Preliminary psychometric evidence suggested good reliability and validity. As hypothesized, women, more than men, preferred a more cautious approach to sexual consent by stressing the need to obtain consent more explicitly. Multiple regression analyses supported a reciprocal relationship between sexual consent attitudes and sexual consent behaviors.     

Factors Influencing Perceptions of Breast Cancer Genetic Counseling among Women in an Urban Health Care System

The study assessed perceptions of breast cancer genetic counseling. Focus groups were conducted with twenty women (ages < = 50 years) in a Midwestern, urban health system identified as at above average risk of developing hereditary breast cancer and referred for breast cancer genetic counseling following mammography. All participants associated the words “breast cancer” with fear. African American women who received breast cancer genetic counseling may have channeled their fear into increased vigilance related to breast health. African American women who did not receive breast cancer genetic counseling were most knowledgeable about it. In contrast, Caucasian women who did not receive it reported uncertainty about the role of genetic counseling and testing in assessing breast cancer risk, mistrust in medical professionals, and lack of trust in the accuracy of genetic tests. The results could be used to help develop interventions to improve informed decision-making regarding breast cancer genetic counseling.     

纸质与视频补充材料对手术知情同意体验的影响：以腹腔镜胆囊切除手术为例

知情同意书在医患沟通中起着间接传递信息的重要作用。以159名大学生为被试,通过操纵不同的知情同意方式,考察了纸质或视频补充信息对患者知情同意满意度、理解程度以及患者信息需求的满足程度影响。结果发现,接受纸质补充知情同意或视频补充知情同意的被试对知情同意过程的满意度、对手术信息的理解程度与知情同意信息需求的满足程度显著高于接受普通知情同意的被试。同时,纸质补充知情同意使得“治疗信息需求的满足程度”最高。这表明,纸质补充知情同意更能满足患者对治疗信息的需求。     

Student Ratings of a Male and Female Professors’ Lecture on Sex Discrimination in the Workforce

Using an experimental design, male (n = 41) and female (n = 46) undergraduate students in the southeastern USA evaluated an identical written lecture by a male and female professor on pay disparities between men and women in the workforce suggesting sex discrimination. Regardless of the students’ sex, the male professor and his lecture was rated more positively and less sexist than the female professor. Moderated multiple regression analysis indicated that more traditional and gender stereotypical attitudes toward women in male students were related to greater sexism ratings of the female professor compared to the male professor whereas; no differences on ratings of sexism between the male and female professor were found for male students with more liberal attitudes.     

Assessing the Ethics of Medical Research in Emergency Settings: How Do International Regulations Work in Practice?

Different ethical principles conflict in research conducted in emergency research. Clinical care and its development should be based on research. Patients in critical clinical condition are in the greatest need of better medicines. The critical condition of the patient and the absence of a patient representative at the critical time period make it difficult and sometimes impossible to request an informed consent before the beginning of the trial. In an emergency, care decisions must be made in a short period of time, and the more time is wasted, the more the risk of death or severe tissue damage and incapacity increases. Consent requests take time, and so the time period before treatment might put the patient’s life in jeopardy. Not requesting consent before a trial is also contradictory. A person should not be forced to participate in a trial against his or her will. Due to the dark history of medical research previously, international declarations and conventions have set up ethical principles for medical research. They emphasize the autonomy of the research participant—or his or her legal representative—to give a free and informed consent prior to the initiation of research. In the case of a critical emergency, the unconscious state of the patient, the emotional stress of family members or the lack of time to start life-sustaining measures may often restrict the possibilities of communicating with the patient or his/her representative. Therefore, written informed consent is difficult to achieve, and its voluntariness in emergency situations is, at best, open to question. The mortality of patients is high without clinical interventions in emergency research. Random selection of patients is difficult and requires extra work from personnel in the emergency rooms. Recruitment, information and asking for consent may also take time, postpone the initiation of treatment and increase the risk of death and irreversible tissue and organ damage, and therefore be risky for the patient. It is therefore essential that the health care professionals recruiting suitable research participants are well motivated and well trained. Medical research in an emergency setting should always be regarded as an exceptional situation requiring special provisions. Only such research should be done as cannot be done in other conditions. An independent body must approve the research protocol and the ways in which the consent of the participant or proxy are to be sought. In addition, the trial must be expected to result in direct and significant benefit for the research participants. If research without prior consent is not approved, the development of emergency care is threatened. On the other hand, if prior consent is not required, a person could be recruited into a clinical trial against his or her will. Doing good and avoiding harm, and respecting the autonomy of the patient are in conflict in the context of emergency medical research. To develop better medicines for patients experiencing acute medical emergencies, research into such conditions should be allowed. Research participants should have the possibility to participate or refuse to participate in research that may benefit them and other patients. The risk of irreversible damage occurring as the consequence of time delays for seeking consent is unacceptable. A prior wish about participation in clinical trials should be respected, if known. The conditions under which medical research in emergencies can be considered acceptable can be determined and agreed upon nationally and internationally. An earlier version of this paper was presented at The 7th International Conference on Bioethics on “The Ethics of Research in Emergency Medicine”, held on June 2, 2006, Warsaw, Poland.     

Informed consent and the use of placebo in poland: Ethical and legal aspects

The concept of informed consent was one of the most fruitful ideas that deeply changed the relationships between physicians and their patients from paternalism to respect for the personal autonomy of subjects needing professional medical care. The great progress in medicine, also involving the pharmaceutical industry, has created an increasing need to perform different clinical and experimental trials. The evolution of clinical research in the last decades has influenced strongly the design of these studies. One of the most important changes in this field has been the use of placebo groups in double-blind controlled studies. The controversies have involved not only the use of placebo when standard or proven treatment was available, but also some specific problems concerning the procedure of obtaining informed consent in such trials. This paper briefly presents the evolution of informed consent in Poland as well as different ethical and legal problems concerning informed consent and the use of placebo controls in clinical trials. An earlier version of this paper was presented at an international conference, “Placebo: Its Action and Place in Health Research Today,” held in Warsaw, Poland on 12–13 April, 2003.     

Educational Needs of Primary Care Physicians Regarding Direct-to-Consumer Genetic Testing

To assess the educational needs of North Carolina primary care physicians (PCPs) about direct-to-consumer (DTC) genetic testing, surveys were mailed to 2,402 family and internal medicine providers in North Carolina. Out of 382 respondents, 323 (85%) felt unprepared to answer patient questions and 282 (74%) reported wanting to learn about DTC genetic testing. A total of 148 (39%) were aware of DTC genetic testing. Among these, 63 (43%) thought DTC genetic testing was clinically useful. PCPs who felt either unprepared to answer patient questions (OR = 0.354, p = 0.01) or that DTC genetic testing was clinically useful (OR = 5.783, p = 0.00) were more likely to want to learn about DTC genetic testing. PCPs are interested in learning about DTC genetic testing, but are mostly unaware of DTC testing and feel unprepared to help patients with DTC testing results. Familiar and trusted channels that provide the information and tools PCPs need to help answer patient’s questions and manage their care should be used when creating educational programs.     

Health Related Quality of Life After Percutaneous Coronary Revascularisation in Patients with Previous Coronary Artery Bypass Grafts: A Two-Year Follow Up Study

Percutaneous coronary revascularisation [PCR] improves angina and health related quality of life [HRQOL] compared to standard medical therapy. It is unknown whether PCR has the same benefits for patients with a history of CABG. Over a period of 5 years, we assessed HRQOL of patients undergoing PCR using Part 1 of the Nottingham Health Profile [NHP] at baseline 3, 12 and 24 months. We compared HRQOL after PCR in 255 patients with CABG to 2680 without. There were more males [81.1% v 69.6% p = 0.002] and older patients [mean age 60.1 years v. 58.0 p = 0.03] in CABG group. Perceived HRQOL improved at 24 months for pain, energy and emotional reaction but the improvement was less in the CABG group. However, mean NHP scores at 24 months for those with CABG had returned to baseline levels for sleep [34.9] and for physical function was worse than at baseline [22.0 vs 30.7]. This relationship persisted after adjustment for male sex, history of previous MI and coronary stent usage. Patients with previous CABG had less improvement in HRQOL after PCR. Further work is needed to assess the benefits and cost effectiveness of PCR in these patients.     

The Utility of Genetic Counseling Prior to Offering First Trimester Screening Options

In order to evaluate the utility of genetic counseling at the time of first trimester screening in patients with no previously identified genetic concerns, we reviewed family history data for 700 women seen for genetic counseling in Utah during 2005-2006. The mean maternal age was 35 years (Range: 16–47 years). The majority of patients seen were non-Jewish Caucasians (90.8%, 634/700). A three-generation pedigree was obtained from each woman by one of two certified genetic counselors and subsequently classified as “negative” (no birth defects/genetic disorders); “positive” (birth defect or genetic condition with a minimal/low risk of recurrence; additional evaluation/genetic testing during pregnancy not indicated); or “significant” (birth defect or genetic condition with an increased risk of recurrence; additional evaluation/genetic testing during the pregnancy indicated). About 72% (501/700) of the histories were negative, 19% (134/700) were positive, and about 9% (65/700) were significant. Among patients with significant family histories, 66% (n = 43) were women less than 35 years of age. We conclude that assessing a patient’s family history at the time of first trimester serum screening is a valuable resource for pregnancy management.     

Communication of Genetic Information by Other Health Professionals: The Role of the Genetic Counsellor in Specialist Clinics

Many children with chronic genetic diseases are followed by specialty clinics that provide genetic information as part of the care. Health services restrictions in the Republic of Ireland (ROI) can make the wait for an appointment with a genetic counsellor long. We examined whether genetic information was being adequately understood when presented by medical, but non-genetics staff to long term patients, using our national metabolic service as an example. The aim was to inform health professionals about the need or role of a genetic counsellor in a specialist setting. A questionnaire was used to assess knowledge among parents and patients affected by galactosaemia and Maple Syrup Urine Disease (MSUD). Twenty seven families with galactosemia and 10 with MSUD were interviewed in clinic. Comparative analysis showed significant differences in knowledge between parents of children with galactosemia and adult patients (p = 0.001) and between ethnicities (p > 0.05). While parents are well informed, the majority expressed a wish for more information about the condition and its transmission. Adult patients with galactosemia and parents from certain ethnic backgrounds could especially benefit from genetic counselling. This study highlights the need for a genetic counsellor in specialist clinics.     

Using Questions to Improve Informed Consent Form Reading Behavior in Students

Previous research shows that students often do not read informed consent forms to understand their rights (Pederson, Neighbors, Tidwell, & Lostutter, 2011). Four hundred fifty-eight students participated in an advertised temperament study that actually measured whether they noticed a manipulation within the consent form. Answering five questions about the form raised the percentage of students noticing the manipulation in multiple settings; however, overall rates were low. Fewer than 10% of ethnic minority students noticed the manipulation. If the goal of consent forms in higher education remains an informed decision, these results indicate the need for increased interaction within the consent process.     

美国与知情同意有关的一些问题

知情同意是医疗保健和医学研究的一个基本的伦理学要求。这两种情况中,当医学研究的知情同意标准比医疗保健要求更加严格时,知情同意包含了3种要素：（1）告知病人或受试者该研究的性质。包括益处,危险和其他有关内容;（2）确保病人受试者理解所提供的信息;（3）得到病人或受试者自愿的同意,没有能力参与知情同意的病人包括患痴呆和危重病等无决断 能力的病人,这些病人属弱势病人。如要获许对他们的疾病进行研究,我们必须制定保护弱势受试者有效的伦理政策,提出了关于对痴呆病人、危重病人,脑死亡病人研究的伦理学政策。     

Medical Students' Perceptions of and Willingness to Treat Patients Who Are HIV Infected1

The purpose of this study is to examine the independent and joint influences of a patient's mode of acquisition of illness (blood transfusion vs. multiple sexual partners), attributions of responsibility (self-blame vs. chance blame), and sexual orientation (homosexual vs. heterosexual) on female and male medical students' attitudes toward and willingness to treat a patient who is HIV infected. One hundred nineteen 1st through internship-year medical students were randomly assigned to read and respond to case vignettes. Greater consistency between attribution of blame and mode of acquisition was related to more positive perceptions. Furthermore, the patient's sexual orientation influenced the providers' willingness to offer treatment, particularly for male medical students. Implications concerning health practices and medical education are considered.     

Are Patient Rights to Information and Self-Determination in Diagnostic Genetic Testing Upheld? A Comparison Of Patients’ and Providers’ Perceptions

This study assessed how the patient’s right to receive information and the right to self-determination were followed during diagnostic testing, according to the perceptions of patients and parents of tested children (group 1, n = 106) and healthcare personnel (group 2, n = 162). Data were collected in three Finnish university hospitals using a questionnaire. Results revealed one between group difference: patients/parents agreed more strongly than did personnel that self-determination was followed before testing. Within groups included: patients/parents had stronger agreement that self-determination was followed before testing than after testing; personnel had stronger agreement about information received after testing than before testing, and they had weaker agreement about how well self-determination was followed before testing than after testing. Received information was experienced as similar both before and after testing and by patients/parents and by personnel. Providing adequate time to consider whether or not to be tested and giving more support to patients after testing would promote the rights of patients. Furthermore, assessment of personnel characteristics is needed to determine, for example, the kinds of value conflicts that exist between personnel’s own values and patients’ values.     

Genetic Risk Communication: Experiences of Adolescent Girls and Young Women from Families with Fragile X Syndrome

Little is known about how and what genetic risk information parents communicate to their children and even less is known about what children hear and remember. To address this void, we explored how genetic risk information was learned, what information was given and who primarily provided information to adolescent girls and young adult women in families with fragile X syndrome. We explored three levels of risk knowledge: learning that fragile X syndrome was an inherited disorder, that they could be a carrier, and for those who had been tested, actual carrier status. These data were collected as part of a study that also explored adolescent self concept and age preferences about when to inform about genetic risk. Those findings have been presented separately. The purpose of this paper is to present the communication data. Using a multi-group cross-sectional design this study focused on girls ages 14–25 years from families previously diagnosed with fragile X syndrome, 1) who knew they were carriers (n = 20), 2) noncarriers (n = 18), or 3) at-risk to be carriers (n = 15). For all three stages of information the majority of the study participants were informed by a family member. We identified three different communication styles: open, sought information, and indirect. The content of the remembered conversations varied based on the stage of genetic risk information being disclosed as well as the girls’ knowledge of her own carrier status. Girls who had been tested and knew their actual carrier status were more likely to report an open communication pattern than girls who knew only that they were at-risk.     

Genetic Testing Likelihood: The Impact of Abortion Views and Quality of Life Information on Women’s Decisions

Little is known about factors predicting the likelihood of choosing genetic testing in college aged women versus older women, including knowledge of quality of life (QOL) associated with a disorder. Using vignettes with female college students (Experiment 1: n = 257, mean age = 19.70 yrs) and female faculty/staff/alumni (Experiment 2: n _nulliparous = 83, mean age = 30.20 yrs; n _mothers = 53, mean age = 33.77 yrs), we examined the contribution of multiple factors to predicting genetic testing likelihood for cystic fibrosis. We investigated malleable situational factors (style of genetic risk presentation and providing QOL information including physical and social aspects) and stable dispositional factors (abortion views). Parity (i.e., prior births) was more influential in women’s genetic testing likelihood than was age. Greater acceptability of abortion for oneself and self-assessed knowledge following QOL information were predictors of higher testing likelihood for college students. Greater acceptability of abortion for another person was a predictor for nulliparous women. Abortion views moderated the effect of predictors for nulliparous women and mothers. Findings encourage genetic counselors to utilize QOL information to promote informed decision making through genetic testing.     

Validation of Iranian Version of FI-QOL Scale in Patients with Fecal Incontinence

Pelvic floor dysfunction is a general public health problem with great impact on quality of life. Inability to control the passage of stool can produce embarrassment and may limit daily activities. One of the most important indicators of effectiveness of therapy in patients with fecal incontinence (FI) can be patient’s quality of life. Therefore, a well-constructed questionnaires studying quality of life is necessary. The objective of this study was to assess the Iranian version of Fecal Incontinence Quality of Life Scale in a hospital-based study on patients with FI. Two hundred women were recruited in the study. One group included patients with FI (n = 100) and the control group (n = 100) included patients with any gastrointestinal (GI) problems except FI. The Persian version of fecal incontinence quality of life scale completed by two groups. The FI patients completed the SF-36 questionnaire too. Reliability and validity of questionnaire were evaluated by Cronbach’s alpha, test/retest using correlation analysis, Intraclass correlation coefficient, paired t-test, and analysis of variance. There was not any significant differences between two groups for age, marital status, education, and occupation. The mean age of FI patients and controls were 42.6 (±13.3) and 44.5 (±15.0) respectively. Cronbach’s-α for all domains ranged between 0.72 and 0.92. All scales showed significant correlation between the test and retest administration of questionnaire. The FI patients had lower scores than the controls for all domains adjusted for gender. All correlations between six selected domains of Sf-36 scales and FIQL scales were significant at P ≤ 0.05 levels. The Persian version of FIQL had a good validity and reliability and can be used for accurate measure of quality of life in FI patients.     

Physical Activity, Life Satisfaction, and Self-Rated Health of Middle School Students

Little research has examined the association between life satisfaction, self-rated health (SRH), and physical activity concurrently for middle school students. A convenience sample of 245 students in grades 7 and 8 was surveyed about physical activity, life satisfaction, and SRH using the U.S. Centers for Disease Control and Prevention (CDC) 2005 Middle School Youth Risk Behavior Survey. ANOVA analyses revealed significantly reduced life satisfaction for females who reported not engaging in vigorous physical activity during the past 7 days [p < .01, effect size (ES) = .75]. Significantly reduced life satisfaction was detected for both males (p < .001, ES = .66) and females (p < .0001, ES = .80) who reported not playing on sports teams. Additionally, logistic regression analyses showed the odds of reporting fair/poor SRH increased 5.4 times for males (CI = 1.30–22.39, p < .05) and 30.9 times for females (CI = 3.74–255.43, p < .001) who reported not playing on sports teams. Preliminary findings suggest physical activity and sports participation is associated with improved life satisfaction and SRH for middle school students. In addition, although some gender differences were observed, consistent findings for sports participation suggest sports participation may carry multiple social, mental, and physical benefits for youth.     

知情同意对危重病患者心理影响的现状研究

探讨知情同意对危重病患者的心理影响。根据知情同意实施现状,将患者分为患者知情组、家属知情组,采用问卷调查和访谈相结合的方法对两组知情同意前、后的心理状况进行评估和比较。采取自愿方式及适宜的告知方法由患者本人知情同意,患者的心理状况与选择家属知情同意的患者无明显区别。