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Objective: To provide guidance on informed consent to clinicians offering cancer susceptibility testing.Participants: The Task Force on Informed Consent is part of the Cancer Genetics Studies Consortium (CGSC), whose members were recipients of National Institutes of Health grants to assess the implications of cancer susceptibility testing. The 10 task force members represent a range of relevant backgrounds, including various medical specialties, social science, genetic counseling, and consumer advocacy.Evidence: The CGSC held 3 public meetings from 1994 to 1996. At its first meeting, the task force jointly established a list of topics. The cochairs (G.G. and J.R.B) then developed an outline and assigned each topic to an appropriate writer and reviewer. Writers summarized the literature on their topics and drafted recommendations, which were then revised by the reviewers. The cochairs compiled and edited the entire manuscript. All members were involved in writing this report.Consensus Process: The first draft was distributed to task force members, after which a meeting was held to discuss its content and organization. Consensus was reached by voting. A subsequent draft was presented to the entire CGSC at its third meeting, and comments were incorporated.Conclusions: The task force recommends that informed consent for cancer susceptibility testing be an ongoing process of education and counseling in which (1) providers elicit participant, family, and community values and disclose their own, (2) decision making is shared, (3) the style of information disclosure is individualized, and (4) specific content areas are discussed. [ABSTRACT FROM AUTHOR]

Geller G, Rushton CH, Francomano C, Kolodner K, Bernhardt BA. Genetics professionals' experiences with grief and loss: implications for support and training. This study was designed to determine the degree to which clinical genetics professionals are comfortable with grief and loss, whether discomfort with grief and loss is associated with clinician distress, and what factors predict comfort with grief and loss for the purpose of developing recommendations for support and training. We surveyed 300 clinical geneticists (MDs), genetic counselors (GCs) and genetic nurses randomly selected from their professional associations. Out of 225 eligible clinicians, 172 completed surveys (76% response rate). The vast majority of respondents have clinical interactions with patients and families who are experiencing grief, loss and/or death. However, nearly 20% of respondents reported that they did not feel ‘comfortable in the presence of grief and loss'. Twenty-nine percent of respondents disagree or strongly disagree that they ‘have been adequately trained to address issues of death, dying, grief/bereavement, and end of life care’. Reported discomfort with grief and loss was strongly correlated with clinician distress. Predictors of comfort with grief and loss included perceived adequacy of training, tolerance for uncertainty, significant personal experiences of loss and deriving meaning from patient care. In conclusion, as follows. A significant minority of clinical genetics professionals experience discomfort in the presence of grief and loss, and feel inadequately prepared for such experiences. Greater attention should be paid to training clinicians in how to deal with grief and loss, and supporting them through such difficult experiences in an effort to reduce their distress. [ABSTRACT FROM AUTHOR]

Objective: Burnout is high among clinicians and may relate to loss of "meaning" in patient care. We sought to develop and validate a measure of "personal meaning" that practitioners derive from patient care.Methods: As part of a larger study of well-being among genetics professionals, we conducted three focus groups of clinical genetics professionals: physicians, nurses and genetic counselors (N=29). Participants were asked: "What gives you meaning in patient care?" Eight themes were identified, converted into Likert items, and included in a questionnaire. Next, we mailed the questionnaire to clinical geneticists, genetic counselors and genetic nurses (N=480) randomly selected from mailing lists of their professional associations. Results were subjected to exploratory factor analysis. The survey also included validated scales of burnout and professional satisfaction, and a 1-item measure of gratitude, to assess predictive validity.Results: 214 eligible providers completed the survey out of an estimated 348 eligible (61% response rate). Factor analysis resulted in a unidimensional scale consisting of 6-items with an alpha of 0.82 and an eigen value of 3.2. Factor loadings ranged from 0.69-0.77. The mean total score was 18.1 (S.D. 3.7) out of a possible high score of 24. Higher meaning scores were associated with being female (p=0.044), a nurse (p<0.001), and in practice longer (p=0.006). Meaning scores were inversely correlated with burnout (p<0.001), and positively correlated with gratitude (p<0.001) and professional satisfaction (p<0.022).Conclusion: The 6-item "personal meaning in patient care" scale demonstrates high reliability and predictive validity in a select group of health professionals. Future research should validate this scale in a broader population of clinicians.Practice Implications: The scale could be useful in identifying providers at risk of burnout, and in evaluating interventions designed to counteract burnout, enhance meaning and improve communication and partnership between providers and patients. [ABSTRACT FROM AUTHOR]

Background: People with retinitis pigmentosa (RP) experience functional and psychological challenges as they adjust to progressive loss of visual function. The authors aimed to understand better the process of adjusting to RP in light of the emotional suffering associated with this process. Methods: Adults with RP were recruited from the Foundation Fighting Blindness and the Wilmer Eye Institute in Baltimore. Focus groups and semistructured interviews addressed the process of adjusting to RP and were audiotaped and transcribed. The transcripts were analysed qualitatively in order to generate a model of adjustment. Results: A total of 43 individuals participated. It was found that, on diagnosis, people with RP seek to understand its meaning in their lives. Mastering the progressive functional implications associated with RP is contingent upon shifting personal identity from a sighted to a visually impaired person. In this sample, six participants self identified as sighted, 10 self identified as in transition, and 27 self identified as visually impaired. This adjustment process can be understood in terms of a five stage model of behaviour change. Conclusions: The proposed model presents one way to understand the process of adjusting to RP and could assist ophthalmologists in meeting their moral obligation to lessen patients' suffering, which arises in the course of their adjustment to progressive loss of visual function. [ABSTRACT FROM AUTHOR]

PURPOSE/OBJECTIVES: To compare outcomes of pretest education about breast cancer susceptibility testing provided by nurses and genetic counselors. DESIGN: Two-group, post-test only evaluation of an educational intervention. SETTING: A tertiary care hospital. SAMPLE: 87 women who had a first-degree relative with premenopausal breast cancer; six specially-trained providers (four genetic counselors and two nurses). METHODS: Self-administered questionnaire completed immediately following education sessions. MAIN RESEARCH VARIABLES: Subjects' understanding of the limitations of testing, perceived autonomy in decision making, and satisfaction; partnership as perceived by subjects and providers. FINDINGS: After the sessions, 62% of subjects understood the limitations of testing, 98% reported a high degree of perceived autonomy in decision making, 81% were highly satisfied with the session, and 91% reported forming a partnership with their providers. Lower perceived partnership reported by genetic counselors was the only significant difference by provider type. CONCLUSIONS: With training and supervision, nurses and genetic counselors can be equally effective in providing education about genetic testing for breast cancer susceptibility in research settings. Additional research is needed to determine the outcomes of education provided in clinical settings. IMPLICATIONS FOR NURSING PRACTICE: As the demand for education about genetic testing for cancer susceptibility increases, nurses need to be educated and trained to provide this service. [ABSTRACT FROM AUTHOR]

Due to the increasing likelihood that new genetic tests will be incorporated into primary care, we investigated the preparedness of primary care physicians to offer such tests. As a follow-up to a national survey of physicians' knowledge and attitudes regarding genetics, we conducted five focus groups with a total of 39 survey respondents from 5 specialties and 4 states. Semistructured questions were used to generate and guide discussion about participants' perceptions of (a) ethical obligations regarding genetic decision making and (b) barriers to widespread genetic testing. This article describes those perceptions. Participants believed that the goals of full disclosure and nondirectiveness in genetic counseling were neither possible to achieve nor desirable in primary care. There were consistent gender differences, with female physicians reportedly deferring to patients in decision making more often than males. Participants seemed aware of the costs of genetic tests and the social risks to patients of disclosing confidential genetic information to insurance companies. Results have implications for the training of primary care providers. [ABSTRACT FROM AUTHOR]

Assesses the effect of an ethics education intervention for medical house officers on practices surrounding `Do Not Resuscitate' (DNR) orders. Also assesses the association of DNR care with patient diagnosis and demographic variables. Revision of The Johns Hopkins Hospital's policy concerning `Do Not Resuscitate' orders; House officer characteristics by firm; Sociodemographic characteristics of patients; More.

Objective: To assess (1) the effect of an ethics education intervention for medical house officers on practices surrounding "Do Not Resuscitate" (DNR) orders and (2) the association of DNR care with patient diagnosis and demographic variables.Design: A 1-year randomized, controlled trial.Setting: An urban, university teaching hospital.Participants: Eighty-eight internal medicine house officers.Intervention: House officers were arbitrarily assigned to four "firms." One firm was randomized to an extensive ethics education intervention (EI), one to a limited intervention, and two served as controls.Main Outcome Measures: Charts of patients with DNR orders were reviewed for compliance with the hospital's DNR policy, which instructs that when DNR orders are written there should be (1) an attending signature, (2) documentation of reasons, (3) appropriate consent, and (4) attention to 11 concurrent care concerns (CCCs) (eg, the appropriateness of intubation, tube feedings, hospice).Results: Thirty-nine charts were reviewed before the intervention and 57 after. The number of CCCs per DNR order fell among patients cared for by controls (1.9 to 1.0, P less than .05) and rose among patients cared for by the EI group (0.9 to 3.8, P less than .05). Compliance with the DNR policy varied among patients with differing diagnoses. "Do Not Resuscitate" orders were signed less frequently (P = .01) for patients with the acquired immunodeficiency syndrome (AIDS) (65%) compared with patients who had other diagnoses (85%) or malignancy (91%). Similarly, appropriate consent was recorded for 59% of patients with AIDS, 83% of others, and 85% of those with malignancy (P less than .05). The number of CCCs per DNR was 0.7 for AIDS, 1.4 for others, and 2.4 for malignancy (P less than .05). In multivariate regression analysis, house officer ethics education and patient diagnosis, but not patient gender, age, race, or insurance status, were predictors of the number of CCCs per DNR.Conclusions: (1) An extensive ethics education intervention can improve care for DNR patients, especially with respect to CCCs. (2) In this setting, quality of care for DNR patients varied systematically with diagnosis. These results have implications for the design and implementation of ethics education programs. [ABSTRACT FROM AUTHOR]

Cancer susceptibility testing is likely to become routine in medical practice, despite many limitations and unanswered questions. These uncertainties greatly complicate the process of informed consent, creating an excellent opportunity to reconsider exactly how it should be conducted. Research with women's reactions to the availability of genetic susceptibility testing for breast cancer dramatically underscores that informed consent ought to be highly individualized, taking care to discern what patients believe about the disease and its causes and what role they want their physician to play. [ABSTRACT FROM AUTHOR]

Soil surface temperatures in deserts can reach 70°C, far exceeding the high-temperature tolerance of most vascular plants of about 55°C. In this study a computer model indicated that the maximum temperatures of small spherical cacti would approach soil surface temperatures, in agreement with measurements on seedlings of Ferocactus acanthodes. Shortwave radiation was the most important environmental variable affecting maximum cactus temperatures: a 70% reduction in shortwave radiation by shading lowered both predicted and measured stem surface temperatures by 17°C for plants 2 cm in diameter. High-temperature tolerance, measured as the temperatures that halved the fraction of cells taking up a vital stain after a 1 h high-temperature treatment, could reach 60°C for the detached stems of Opuntia bigelovii, which appears crucial for its vegetative reproduction, and 70°C for O. ficus-indica, apparently the greatest high-temperature tolerance so far reported for higher vascular plants. Two-fold increases in shortwave absorptance from Epithelantha bokei to Mammillaria lasiacantha to Ariocarpus fissuratus led to a 5°C predicted increase in maximum temperature. However, compensatory differences in high-temperature tolerances occurred for these dwarf cacti, helping to explain their occurrence in the same open habitat in the Chihuahuan Desert. All six species showed acclimation of their high-temperature tolerance as ambient temperatures were increased, including acclimation by the roots of the dwarf cacti, where the greater sensitivity to high temperatures of roots would exclude them from the upper 2 cm of the soil. Using the model, the observed high-temperature acclimation, and the temperatures needed to reduced stain uptake to zero, the three dwarf cacti were predicted to be able to survive soil surface temperatures of up to 74°C. [ABSTRACT FROM AUTHOR]

Although alcoholism is prevalent in both general and inpatient populations, barriers to its timely diagnosis and effective treatment exist. These are often attributed to physicians' inadequate understanding and skill development and negative attitudes toward the disease. All Johns Hopkins' medical students and house staff, during 1986 through 1987, received a self-administered survey of their attitudes, skills, perceived role responsibility, knowledge, and reported practices with regard to alcoholism. Results indicate a strong relationship between perceived role responsibility, confidence in skills, and reported screening and referral practices among students and house staff. Knowledge levels strengthened the association between skills and practices for medical students. House staff perceived less of a responsibility for screening than medical students. There was a trend toward lower confidence and more negative attitudes among house staff than medical students. The results point to areas where educational interventions can be improved to enhance quality of care and outcomes for this major chronic disease. [ABSTRACT FROM AUTHOR]

Presents a viewpoint on the cultural differences seen between the United States and France on the issue of clinical recommendations which should be made to women with an increased risk of breast and ovarian cancer. The effect of societal views on the recommendations; Differences of opinion regarding self-examination of breasts; The role of autonomy on the issue.

Although recent scientific advances have enabled us to minimize disability and improve the quality of life for people with disabilities and their families, cure is still not possible for many rehabilitation patients. This inability to cure renders the field of rehabilitation medicine particularly well-suited to the philosophy of healing. In contrast to curing, which is aimed at removing or reversing a disease process, both rehabilitation and healing are meant to enhance all aspects of well-being, restore integrity to the person, and facilitate the creation of meaning. Pediatric rehabilitation represents the interface of rehabilitation medicine and pediatrics, and is associated with unique characteristics that provide a natural context for exploring the optimal healing environment. This paper describes those characteristics and argues for the systematic integration and evaluation of healing interventions among children with developmental disabilities and their caregivers (parents, health care practitioners, and teachers). The ultimate aim of these interventions would be to improve all levels of the children's functioning in their homes, schools, and community environments by reducing impairment and increasing activity and participation. The paper concludes with a discussion of research priorities and the challenges imposed by different research strategies. [ABSTRACT FROM AUTHOR]

There are now more than 15 years of experience with horizontal subsurface flow systems in the German speaking countries, covering the results of research projects and also that of practical daily maintenance. Till now some 50--100 horizontal flow systems with more than 50 pein the German speaking countries are built. Approximately half of these use sand as filter material. The results show that the purification efficiency of these systems is in the order of that of good working conventional sewage plants, not only for BOD5 and COD, but also for nitrogen and phosphorus. Very high elimination efficiences far better than 90% for BOD, COD and P are easily possible; similarly for elimination of N, when loading rates are below 20 rnm/d, or the area is larger than 10 m2/pe. Generally there seem to befew problems with winter time and with clogging. The operation of these systems is easy and inexpensive. In nearly all reed beds Phragmites was predominant after a few years. For the planting of Phragmites an easy method using halm-cuttings is given. The long term experiencewith the reported systems allows us to give recommendations for design, construction and maintenance. [ABSTRACT FROM AUTHOR]

Background The purpose of this study was to examine the efficacy and acceptability of an open-label conditioned placebo dose reduction (CPDR) treatment in 70 children with attention deficit hyperactivity disorder (ADHD). This paper focuses on the qualitative data from the study. Methods Following a double-blind, crossover dose finding procedure to determine each subject's optimal dose of stimulant medication, subjects were randomized to the CPDR treatment or one of two control groups. Outcome measures included parent and teacher ratings of ADHD behaviours and stimulant side effects. Qualitative assessments were based on open-ended interviews of children and parents. Positive responders to CPDR and controls were followed for 3 months to assess persistence of treatment benefits. Results Children randomized to CPDR showed an excellent treatment response, well maintained over time. Parents and children were generally accepting of the treatment. Most parents reported treatment benefits and 80% of the children found the placebo to be useful. Full disclosure of the placebo to parents and children did not appear to negate the placebo's effectiveness. Participation effects and changes in caregiver behaviour may have contributed to positive treatment outcomes. Conclusions Open-label use of placebos as part of CPDR treatment may represent an innovative, ethical way of harnessing the power of placebos in clinical therapeutics. [ABSTRACT FROM AUTHOR]

Background The purpose of this study was to examine the efficacy and acceptability of an open-label conditioned placebo dose reduction (CPDR) treatment in 70 children with attention deficit hyperactivity disorder (ADHD). This paper focuses on the qualitative data from the study. Methods Following a double-blind, crossover dose finding procedure to determine each subject's optimal dose of stimulant medication, subjects were randomized to the CPDR treatment or one of two control groups. Outcome measures included parent and teacher ratings of ADHD behaviours and stimulant side effects. Qualitative assessments were based on open-ended interviews of children and parents. Positive responders to CPDR and controls were followed for 3 months to assess persistence of treatment benefits. Results Children randomized to CPDR showed an excellent treatment response, well maintained over time. Parents and children were generally accepting of the treatment. Most parents reported treatment benefits and 80% of the children found the placebo to be useful. Full disclosure of the placebo to parents and children did not appear to negate the placebo's effectiveness. Participation effects and changes in caregiver behaviour may have contributed to positive treatment outcomes. Conclusions Open-label use of placebos as part of CPDR treatment may represent an innovative, ethical way of harnessing the power of placebos in clinical therapeutics. [ABSTRACT FROM AUTHOR]

More information is needed about the relative effectiveness of prophylactic surgery, chemoprevention, and surveillance in reducing breast and ovarian cancer risk in women with an inherited susceptibility mutation. We assessed practical and ethical barriers to conducting randomized clinical trials (RCTs) to compare preventive interventions for breast and ovarian cancer. Eighty-seven at-risk women who attended an education and counseling session about BRCA1/2 testing were asked about their willingness to participate in hypothetical research studies for breast and ovarian cancer risk reduction. In addition, 247 Maryland physicians from five specialties completed a mail survey including a question about their likelihood of recommending RCT participation to an at-risk woman. Nineteen percent of at-risk women reported willingness to participate in a hypothetical RCT for breast cancer risk reduction and 17% for ovarian cancer risk reduction. Women with children and women likely to have a prophylactic mastectomy if found to have a susceptibility mutation were significantly more willing to participate in an RCT. A majority of women would be willing to participate in nonrandomized trials or registries. Fifty-two percent of physicians responded that they would be likely to recommend RCT participation to a woman carrying a breast cancer susceptibility mutation. Oncologists were the most likely to recommend an RCT. Although the results of nonrandomized trials may be difficult to interpret because of such issues as selection bias. Greater feasibility combined with fewer ethical concerns make nonrandomized trials a more viable alternative to randomized trials for evaluation of preventive interventions for breast and ovarian cancer when prophylactic surgery is one of the treatments being evaluated. [ABSTRACT FROM AUTHOR]

As part of an institution-wide program to enhance the education of physicians in diagnosing and treating alcohol dependence and abuse, a comprehensive survey was conducted in which all new admissions to the adult inpatient services of The Johns Hopkins Hospital were screened for alcoholism. The prevalence of screen-positive alcoholism, by department, was as follows: medicine (25%), psychiatry (30%), neurology (19%), obstetrics-gynecology (12.5%), and surgery (23%). Detection rates by the house staff and faculty physicians caring for those patients who screened positively were less than 25% in surgery and obstetrics-gynecology, between 25% and 50% in neurology and medicine, and greater than 50% in psychiatry. However, physicians were less likely to identify as alcoholic those patients with higher incomes, higher education, or private medical insurance; women; and those who denied heavy alcohol intake. Physician-instituted treatment rates for those patients diagnosed by the physician as having nonrecovered alcoholism were less than 50% in surgery and obstetrics-gynecology, between 50% and 75% in medicine and neurology, and 100% in psychiatry. The extent to which the physicians intervened while the patient was hospitalized correlated with the patient's reported change in alcohol use after discharge. Recommendations based on these data are being incorporated into the medical education curriculum. [ABSTRACT FROM AUTHOR]

Background Although PD-1 antibodies (PD1 Ab) are the standard of care for advanced non-small-cell lung cancer (ansclc), most patients will progress. We compared survival outcomes for patients with ansclc who received systemic therapy (st) after progression and for those who did not. Additionally, clinical characteristics that predicted receipt of st after PD1 Ab failure were evaluated. Methods All patients with ansclc in British Columbia initiated on nivolumab or pembrolizumab between June 2015 and November 2017, with subsequent progression, were identified. Eligibility criteria for additional st included an Eastern Cooperative Oncology Group (ecog) performance status (ps) of 3 or less and survival for more than 30 days from the last PD1 Ab treatment. Post-progression survival (pps) was assessed by landmark analysis. Baseline characteristics associated with pps were identified by multivariable analysis. Results Of 94 patients meeting the eligibility criteria, 33 received st after progression. In 75.6%, a PD1 Ab was received as first- or second-line treatment. The most common sts were erlotinib (36.4%) and docetaxel (27.3%). No statistically significant difference in median pps was observed between patients who did and did not receive st within 30 days of their last PD1 Ab treatment (6.9 months vs. 3.6 months, log-rank p = 0.15.) In multivariable analysis, factors associated with increased pps included an ecog ps of 0 or 1 compared with 2 or 3 [hazard ratio (hr): 0.42; 95% confidence interval (ci): 0.24 to 0.73; p = 0.002] and any response compared with no response to PD1 Ab (hr: 0.54; 95% ci: 0.33 to 0.90; p = 0.02). Conclusions In this cohort, only 35.1% of patients eligible for post-PD1 Ab therapy received st. Post-progression survival was not significantly affected by receipt of post-progression therapy. Prospective trials are needed to clarify the benefit of post-PD1 Ab treatments. [ABSTRACT FROM AUTHOR]

This article discusses the development of a global observation system for the collection of data on biodiversity change as part of biodiversity conservation efforts established by the Parties to the United Nations (UN) Convention on Biological Diversity's (CBD) Aichi Targets. Topics include the establishment of internationally accepted Essential Biodiversity Variables (EBVs) to standardize biodiversity monitoring processes, the concerns posed by species populations and community compositions that could necessitate representative sampling across taxonomic groups, and the involvement of groups such as the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services (IPBES), nongovernmental organizations, and citizen-scientist communities in the process.