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PubMed1997

Use of National Practitioner Data Bank disclosure information for decision making.

Hospital, state licensing boards, and managed care organizations query the National Practitioner Data Bank to receive malpractice payment and adverse licensure or clinical privileges reports concerning licensed health care practitioners. The results of a national survey of queriers strongly suggest that Data Bank reports impart valuable information that affects licensing and credentialing decisions. Thus, the Data Bank is fulfilling the role lawmakers intended in improving the quality of health care.

Data Collection↗

PubMed1999

Regulating through information: disclosure laws and American health care.

Efforts to reform the American health care system through direct government action have failed repeatedly. Nonetheless, an alternative strategy has emerged from these experiences: requiring insurance organizations and health care providers to disclose information to the public. In this Article, Professor Sage assesses the justifications for this type of regulation and its prospects. In particular, he identifies and analyzes four distinct rationales for disclosure. He finds that the most commonly articulated goal of mandatory disclosure laws--improving the efficiency of private purchasing decisions by giving purchasers complete information about price and quality--is the most complicated operationally. The other justifications--which he respectively terms the agency, performance, and democratic rationales--hold greater promise, but make different, sometimes conflicting assumptions about the sources and uses of information. These insights have implications not only for health care, but also for other regulated practices and industries.

Decision Making↗

PubMedDate not supplied

Three approaches to better disclosure.

Spurred by growing investor demands, numerous nonprofit health systems are expanding investor relations efforts - not creating new departments like their for-profit counterparts, but working harder to account for themselves to the bond market. "The more sophisticated players realize (greater disclosure) is coming, and they figure they might as well do it and do a great job at it and get ahead of the wave," says Martin Arrick, director of Standard & Poor's health care group. Here are case studies of three that are pushing ahead in that much-watched area--reporting more often, keeping in closer contact with their audiences than before, and , in at least one case, posting financials on the Web.

Capital Financing↗

PubMed2004

Brief report: total pelvic exenteration--A retrospective clinical needs assessment.

This clinical needs assessment retrospectively identified 11 women with a history of gynecologic cancer who had undergone pelvic exenteration within the last 4 years, of whom six were available for interview. All patients agreed to telephone interviews, which lasted approximately 45-60 min and addressed their surgical experience. Seven themes emerged from the interviews: concerns about recovery, complications, ostomies, social support, sexuality, disclosure, and fear. The findings of our needs assessment concur with the existing literature noting decreased sexual interest/activity and difficulties with body image. An improvement in mood and an increase in activities over time postoperatively were noted. We also found reluctance by participants to disclose information about their exenterative procedure.

Adult↗

PubMed2001

When the treatment goal is not cure: are patients informed adequately?

We determined the extent to which Australian patients with incurable cancer are informed of their prognosis and treatment options by their oncologists and are encouraged to participate in treatment decisions. To this end, 118 patients with incurable cancer presenting for an initial consultation with one of nine oncologists in two Sydney teaching hospitals were enrolled in the study. Consultations were audio-taped. We developed a coding system to assess the disclosure of information considered necessary to equip patients to make informed decisions and to evaluate doctor encouragement of patient participation in treatment decision-making. Patient recall, satisfaction, and anxiety and their perceptions of the decision-making process were assessed. Most patients were informed about the aim of cancer treatment (84.7%), that their disease was incurable (74.6%) and about life expectancy (57.6%); 44.1% were presented with an alternative to cancer treatments, such as supportive care, 36.3% were informed how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Patient understanding was checked in only 10% of consultations. While greater information disclosure did not appear to elevate anxiety levels, greater patient participation in the decision making process was associated with increased anxiety levels ( P=0.0005), which persisted over a 2-week time span. Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to cancer treatment.

Adult↗

PubMedDate not supplied

Sexual abuse of children in day care centers.

Sexual abuse of children in day care center settings has received considerable attention in the past decade. The nature and extent of allegations of sexual abuse in day care poses unique challenges to clinicians. Cases of sexual abuse in day care typically involve multiple victims and multiple perpetrators, and use of extreme threats to prevent disclosure. This article reviews the available research findings on the types of abuse known to occur in day care, the dynamics involved including the types of threats used to silence young victims, and patterns of disclosure. The impact of sexual victimization in day care on children and parents is discussed. Implications for the clinical evaluation of preschool-aged children in cases of suspected abuse in day care settings are presented. Developmental considerations related to psychosexual development and the development of memory and language are reviewed. Psychological defenses in repetitive trauma are discussed.

Child↗

PubMed2002

A system of medical error disclosure.

External mandates for medical error disclosure are often justified by potential cost savings, the belief in individual moral obligations in health care, and the concept that patients have rights and providers have responsibilities. Such an approach does not recognise the systems nature of error and outcomes and the important quality role disclosure can play in a system of medical error disclosure. Systems concepts, the patient-provider partnership, and overall quality of care can be enhanced using a system of disclosure that provides for education about the systems nature of error, fulfills the delivery system philosophy of mutual respect, and integrates the patient and his/her family as a partner in the error reduction enterprise. Such a system can result using clear disclosure policies and procedures sensitive to patient and family needs, open communications with concerned, committed, and compassionate system representatives, and use of mediation methods that foster communication, allow for venting, and are flexible in their approach to resolving conflict, including using apology. Although a system may also result in conflict resolution costs, more importantly it may foster and solidify a team approach to reducing errors and promoting patient safety.

Humans↗

PubMed1996

Anaesthesia information--what patients want to know.

We developed and introduced into clinical practice a leaflet to improve the delivery of information to patients before obtaining their consent to anaesthesia. The amount of information needs to be what a "reasonable" patient thinks appropriate; therefore we tested patients' responses to three levels of information: "full" disclosure, "standard" disclosure (as contained in our leaflet) and "minimal" disclosure. Forty-five patients scheduled to undergo cardiac surgery were enrolled in the study. None of the information sheets caused a significant change in state anxiety score and only the "full" disclosure significantly increased knowledge about anaesthesia (P = 0.016). All leaflets were easy to understand. When only one leaflet was provided 64-73% of patients thought the content was "just right", whereas when all three leaflets were viewed together, 63% of patients thought the "minimal" leaflet withheld too much information.

Analysis of Variance↗

PubMed1995

Memory presentations of childhood sexual abuse.

Questions are continually raised about the accuracy and validity of very young children's memories of traumatic events. Out of 19 children, where the median age was 2 1/2 at time of disclosure, 11 had full verbal memory, five had fragmented verbal memory traces, and three had no memory 5 to 10 years following day care sexual abuse. Data from this clinical study suggest the nature of children's memory is four-dimensional: somatic, behavioral, verbal, and visual. Efforts need to continue to document the nonverbal components for assessment and treatment purposes.

Age Factors↗

PubMedDate not supplied

Disclosure of mistakes.

In the course of professional practice, errors will occur and patients may be harmed because of them. The ethical obligation to respect patients' autonomy requires that dentists reveal mistakes to patients if the mistake significantly affects the patient's health and well-being. Answering the question, "would most people think they have a right to know of this type of mistake if it happened to them?" may be helpful in determining the significance of an error. An open disclosure and examination of professional mistakes will be beneficial to patients, doctors, and the practice. Fear of legal reprisals or thoughts that the mistake could be effectively concealed from the patient cannot justify failing to inform the patient of an error and may put the dentist in greater legal peril. Dentists who attempt to hide errors from patients violate the patient's autonomy and risk implicating the profession as one which cannot be trusted.

Ethics, Dental↗

PubMed2005

Good communication with patients receiving bad news about cancer in Japan.

PURPOSE: Despite a recent increase in the attention given to improving communication when disclosing bad news to cancer patients, understanding of good patient-physician communication is still lacking in Japan. The aim of the present study is to describe attributes of good communication with patients receiving bad news about cancer in Japan. METHODS: Forty-nine participants, including 42 cancer patients and seven oncologists, were requested to undergo an in-depth interview, and the data obtained were qualitatively analyzed. RESULTS: Seventy-one attributes of good communication with patients receiving bad news about cancer were obtained from 619 opinions, and classified into four domains. (1) SETTING: a private room and sufficient time. (2) Information given: impact on daily activities and alternative therapy. (3) Method of disclosure: facilitation of patient understanding. (4) Emotional support: encouragement and allowing expression of emotions. CONCLUSIONS: The four domains of good patient-physician communication in Japan are apparently similar to those in Western countries. The domain involving information given and method of disclosure in previous Western studies was further divided into two domains in the present study. Japanese physicians should perhaps pay careful attention to these issues when disclosing bad news about cancer. There are some cultural differences related to the details of communication attributes (e.g. using euphemisms and showing consideration for the patient's family).

Adult↗

PubMed1999

Disclosure, stress, and psychological adjustment among mothers affected by HIV.

This study examined patterns of disclosure and psychological adjustment among mothers infected or affected by HIV. All participants were followed through a family AIDS clinic at a midwestern children's hospital. With respect to disclosure, results indicated that high perceived stress (r = 0.50, p = 0.001) and low efficacy related to managing parenting demands (r = -0.42, p = 0.01) were significantly associated with disclosure of seropositive status. Neither time since diagnosis, psychological adjustment, AIDS knowledge, nor health status as indicated by CD4 count were related to disclosure. Results also indicated that 51% of the mothers met DSM-IV diagnostic criteria for a psychological disorder in the preceding year. The most common diagnoses included posttraumatic stress disorder and major depression. Analyses suggested that perceived stress accounted for a significant 43% of the variance in psychological adjustment. Neither disclosure, time since diagnosis, nor CD4 count were related to adjustment. Findings are discussed in terms of mothers' mental health needs and provision of services to families affected by HIV/AIDS. Although the results of this study must be considered preliminary due to a limited number of participants and correlational analyses, they point to several avenues for future research.

Adaptation, Psychological↗

PubMed1993

Attitudes of Dutch general practitioners towards presymptomatic DNA-testing for Huntington disease.

The attitudes of 1020 Dutch GP's towards presymptomatic and prenatal testing for Huntington disease (HD) were studied by means of a postal questionnaire. The questionnaire contained questions about: approval of presymptomatic DNA-testing, informing individuals at-risk who do not request predictive testing, referral to a clinical genetics center, and opinions about different strategies of informing and supporting individuals at-risk. The response rate was 62%. More than two-thirds of the GP's considered post-test counselling and support as their responsibility. Twenty-six per cent were of the opinion that the test results should be disclosed by the GP. Fifty-nine per cent of GP's who had an individual at-risk in their practice were familiar with the test. The attitudes of GP's towards giving support and giving test results were independent of familiarity with the test and the incidence of HD-patients or at-risk individuals in the practice. Although GP's were willing to play an important role in presymptomatic DNA-testing procedures, there is a risk that they might underestimate the difficulties in communicating genetic information and the psychosocial effects of DNA-testing. Hence, we favor the premise that extensive pretest counselling and test disclosure should remain the prime responsibility of the clinical geneticist. Increasing involvement of GP's should, however, be encouraged and combined with appropriate postgraduate education about predictive DNA-testing in general.

Adult↗

PubMed2004

Disclosure of cancer diagnosis and prognosis: a survey of the general public's attitudes toward doctors and family holding discretionary powers.

BACKGROUND: This study aimed to ask a sample of the general population about their preferences regarding doctors holding discretionary powers in relation to disclosing cancer diagnosis and prognosis. METHODS: The researchers mailed 443 questionnaires to registered voters in a ward of Tokyo which had a socio-demographic profile similar to greater Tokyo's average and received 246 responses (response rate 55.5%). We describe and analysed respondents' attitudes toward doctors and family members holding discretionary powers in relation to cancer diagnoses disclose. RESULTS: Amongst respondents who wanted full disclosure about the diagnosis without delay, 117 (69.6 %) respondents agreed to follow the doctor's discretion, whilst 111 (66.1 %) respondents agreed to follow the family member's decision. For respondents who preferred to have the diagnosis and prognosis withheld, 59 (26.5 %) agreed to follow the doctor's decision, and 79 (35.3 %) of respondents agreed with following family member's wishes. CONCLUSIONS: The greater proportion of respondents wants or permits disclosure of cancer diagnosis and prognosis. In patients who reveal negative attitudes toward being given a cancer disclosure directly, alternative options exist such as telling the family ahead of the patient or having a discussion of the cancer diagnosis with the patient together with the family. It is recommended that health professionals become more aware about the need to provide patients with their cancer diagnosis and prognosis in a variety of ways.

Adult↗

PubMed2004

Patient safety culture and leadership within Canada's Academic Health Science Centres: towards the development of a collaborative position paper.

Currently, the Academy of Canadian Executive Nurses (ACEN) is working with the Association of Canadian Academic Healthcare Organizations (ACAHO) to develop a joint position paper on patient safety cultures and leadership within Academic Health Science Centres (AHSCs). Pressures to improve patient safety within our healthcare system are gaining momentum daily. Because AHSCs in Canada are the key organizations that are positioned regionally and nationally, where service delivery is the platform for the education of future healthcare providers, and where the development of new knowledge and innovation through research occurs, leadership for patient safety logically must emanate from them. As a primer, ACEN provides an overview of current patient safety initiatives in AHSCs to date. In addition, the following six key areas for action are identified to ensure that AHSCs continue to be leaders in delivering quality, safe healthcare in Canada. These include: (1) strategic orientation to safety culture and quality improvement, (2) open and transparent disclosure policies, (3) health human resources integral to ensuring patient safety practices, (4) effective linkages between AHSCs and academic institutions, (5) national patient safety accountability initiatives and (6) collaborative team practice.

Academic Medical Centers↗

PubMed1998

Cancer disclosure in Japan: historical comparisons, current practices.

Although Japanese physicians historically have not disclosed cancer diagnoses to patients, pressures upon physicians to disclose have increased in recent years. We questioned physicians practicing at a private medical hospital in rural Japan about their current approach to cancer disclosure. We compared their responses with responses of physicians in a 1991 study conducted in Japan, and two studies conducted in the United States, in 1961 and in 1977. Seventy-seven clinically active physicians with experience treating cancer patients responded (73% response rate). Forty percent of respondents reported usually telling patients of a cancer diagnosis, over three times more than the 13% who reported such a policy in Japan in 1991. Physicians were significantly more likely (P < 0.001) to make exceptions than physicians in the previous Japanese study, and physicians in the previous U.S. studies. Respondents reported considering more factors in deciding whether to tell than participants in the 1977 U.S. study. Factors predicting an increased probability of disclosure included age (in a hyperbolic relationship), improved prognosis, breast or cervical cancer, and social status and religion (by a minority of respondents). Increase in a substitute decision maker's age was predictive for physicians not to involve the person in decision-making. Most respondents reported their disclosure policy is based on clinical experience. More respondents indicated a likelihood of changing in the future than respondents in the previous U.S. studies. These data suggest Japanese physicians are moving away from a rigid policy of nondisclosure to a policy of selective disclosure, but they have not adopted universal cancer disclosure as practiced in many Western countries. Since young age and advanced age predicted self-reports of not disclosing cancer diagnoses, these data raise the question of whether nondisclosure by age groups represents age discrimination or compassionate medical care tailored to individual patient needs.

Academic Medical Centers↗

PubMed1999

Disclosure obligations of the newly public healthcare company: practical strategies for the company and its counsel.

Founders of healthcare companies, like entrepreneurs in general, dream of the opportunity to take their companies public. The benefits flowing from access to the public markets, however, carry with them additional responsibilities that are enforceable both by the regulatory authorities and the well-organized plaintiffs' securities bar. The authors of this Article provide the newly public company and its counsel extensive guidance for the navigation of this regulatory maze.

Annual Reports as Topic↗

PubMedDate not supplied

Do children know their parent's HIV status? Parental reports of child awareness in a nationally representative sample.

OBJECTIVE: To determine the rates and predictors of child awareness of parental human immunodeficiency virus (HIV) status and the effect of that knowledge on children. METHODS: Interviews were conducted with 274 parents from a nationally representative sample of HIV-infected adults receiving health care for HIV. The outcome measures were parental report of child's awareness of parental HIV status, how others reacted to child's parent having HIV, and reasons for nondisclosure. RESULTS: HIV-infected parents reported that 44% of their children (5-17 years old) were aware of their parent's HIV status, and parents had discussed with 90% of those children the possibility that HIV or acquired immunodeficiency syndrome (AIDS) might lead to their parent's death. Multivariate analyses revealed that parents with higher income, with an HIV risk group of heterosexual intercourse, with higher CD4 counts, with greater social isolation, and with younger children were less likely than others to report that their child knew the parent was HIV positive. Parents reported that 11% of children worried they could catch HIV from their parent. Reasons children did not know their parent's HIV status included that the parent was worried about the emotional consequences of disclosure (67%), was worried the child would tell other people (36%), and did not know how to tell their child (28%). CONCLUSIONS: HIV-infected parents often worry about the emotional consequences of disclosure to their children and that their children may tell others. More than a quarter of parents reported not knowing how to tell their children. Clinicians may be able to support and guide HIV-infected parents in deciding whether, when, and how to disclose their infection to their children.

Adolescent↗