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Background: There is a growing interest in exploring parents' views on the benefits of early diagnosis and awareness of sex chromosome trisomies. However, only a few studies focus specifically on the experience of parents of children with XYY syndrome. The present study aimed to assess, in parents of individuals with XYY, the perceived severity of their children's condition, their level of satisfaction with the disclosure process and their concerns about their children's present and future condition. Methods: A national online sample of 56 Italian parents of children and young adults diagnosed with XYY syndrome participated in the study. They filled out a specifically developed online survey that assessed their children's areas of concern, their experience with the disclosure process and their worries about their children's condition. Results: Seventy per cent of the parents received a prenatal diagnosis, whereas 30% received a postnatal diagnosis. High individual variability was found in the parent report of their child's condition. The most frequent areas of concern were attention regulation, emotion control and behaviour control. Individuals with a postnatal diagnosis showed more severe profiles. Parents were generally dissatisfied with the disclosure process, with no differences between prenatal and postnatal disclosure. However, more than 50% of the parents who received a prenatal disclosure reported that their child's condition was less severe than they had expected. In contrast, only 11% of the parents with postnatal disclosure reported this situation. Parents' concerns were negatively related to global satisfaction with the disclosure process and the correspondence between current and expected conditions but positively associated with the child's severity level. Conclusions: The results suggest that clear and realistic information during the disclosure process to parents is needed in both prenatal and postnatal communication and may alleviate parents' concerns. [ABSTRACT FROM AUTHOR]

The diagnosis of autism is often delivered solely to the parents, a practice that forces them to confront the dilemma of whether, when and how they should disclose it to the child. The present study seeks to probe deeper into the phenomenon of diagnosis disclosure and lead to a clearer understanding of the dilemmas parents? face. This article presents an analysis of a focus group and an online survey conducted with parents. The analysis produced a model that maps parents' dilemmas regarding diagnosis disclosure to their child. The dilemmas, found to be complex and interconnected, concern the invisible nature of autism, the word autism and stigma, time motif, child's environment, the act of disclosure itself, and the child's personal narrative. [ABSTRACT FROM AUTHOR]

Background: There is a well‐documented lack or delay of diagnosis of dementia in all countries, including in Europe. Most general practitioners (GPs) have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma. Objectives: To persuade GPs of their role in dementia detection, an Antistigma education intervention was designed, with teaching objectives focusing on "Why" and "How" to diagnosis and manage dementia, based on ethical and practical content, as opposed to classical training centered on teaching "What", with mainly academic content. Methods: During the European Joint Action "ACT ON DEMENTIA", the Antistigma education intervention was implemented in four Universities: Lyon and Limoges (France), Sofia (Bulgaria) and Lublin (Poland). General data, including information about training and experience in dementia, was collected. Specific scales measured Dementia Negative Stereotypes DNS and Dementia Clinical Confidence D‐CO before and after training. Results: 134 GPs and 58 residents R completed the training. The participants were mainly women (74%), and the mean age was 42.8 ± 13.2. Before training, participants expressed difficulties in defining GPs role and worries about inflicting Stigma, Risks of diagnosis, Lack of benefit and Communication difficulties. Participants' D‐CO was significantly higher for Diagnosis process (64%) than for other clinical situations. After training, total NS was reduced from 34.2% to 29.9% (p < 0.001), and stereotypes were improved: GPs' role (40.1% reduced to 35.9%; p < 0.001), Stigma (38.7% reduced to 35.5%; p < 0.001), Risks of diagnosis (39.0% reduced to 33.3%; p < 0.001), Lack of Benefit (29.3% reduced to 24.6%; p < 0.001) and Communication difficulties (19.9% reduced to 16.9%; p < 0.001). After training, D‐CO was significantly increased in all the clinical situations (p < 0.001), but stayed highest for Diagnosis Process. There was no significant difference between the universities. Participants who benefited best from the Antistigma education intervention were those without training in Geriatrics and those working in nursing homes (who reduced the most D‐NS), as well younger participants and those who managed less than five people living with dementia per week (who increased the most D‐CO). Conclusion: The Antistigma program is based on the idea that most often GPs and R have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma. These results outline the importance of addressing ethical issues and practical management situations in dementia education, to empower GPs in dementia care. Key points: Most general practitioners (GPs) have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma.Antistigma education intervention focuses on "Why" and "How" to diagnosis and manage dementia, based on ethical and practical content, as opposed to classical training centered on teaching "What", with mainly academic content.Antistigma education intervention significantly reduced GPs negative stereotypes and significantly increased GPs confidence in their clinical skills. [ABSTRACT FROM AUTHOR]

Abstract Background With a recent increase in the prevalence of autism spectrum disorder (ASD), an important issue has emerged in clinical practice regarding when and how patients themselves should be given explanations following a diagnosis of ASD. The clinical guidelines of the UK National Institute for Health and Care Excellence state that children diagnosed with ASD should receive an explanation about what ASD is and how it affects their development and functioning—“if appropriate”. However, the guidelines do not provide any specifics regarding what constitutes “appropriate” situations Methods We conducted an anonymous self-administered postal questionnaire survey targeting all members of the Japanese Society for Child and Adolescent Psychiatry (n=1,995). The analysis included only physicians who had newly diagnosed pediatric patients with ASD in the past year. We imposed a limit of one year because diagnoses further back than that are difficult to recall; in other words, this would enhance the recall bias Results The recovery rate was 30.8%, and the rate of diagnosis disclosure to patients themselves without intellectual disability was 15.3%. We asked 361 physicians who responded that “deciding on a case-by-case basis” was the ideal way to disclose an ASD diagnosis about 20 items prioritized by physicians at the time of diagnosis disclosure and extracted three factors through exploratory factor analysis. Multiple logistic regression analysis was performed with physician attributes, awareness of ASD as a disorder or personality, and the three extracted factors as explanatory variables; diagnosis disclosure was the dependent variable. The patient age group and only one of the three factors (i.e., “factor related to readiness to accept diagnosis”) showed a significant association with disclosure of the diagnosis to the individual. Items included in the “factor related to readiness to accept diagnosis” were as follows: the degree of parental understanding, relationship of the patient with their parents/physician, agreement in opinion between parents, parental consent, “sufficient” patient understanding, symptom stabilization, and a guarantee of sufficient time required to explain the diagnosis to the patient Conclusion In clinical settings, disclosing an ASD diagnosis with the consideration of patient/parent readiness toward accepting the diagnosis could help to guide physicians in determining an ideal timing for disclosure. Future studies are needed to establish detailed and concrete guidelines regarding disclosure of an ASD diagnosis to patients.

We conducted this study to reveal the historical changes of parents' perception of diagnosis disclosure of childhood cancer to children. Parents having school children were recruited for questionnaire surveys conducted in 1998, 2008 and 2018. They were questioned about their perception of cancer, cancer diagnosis disclosure to children and advantages and disadvantages of the diagnosis disclosure. The historical changes were analyzed by comparing the responses at each survey with a Chi-square test and a residual analysis. Parents perceiving “cancer is incurable” decreased from 40.0% (an adjusted standardized residual [ASR] = 12.002 P

With the increasing cancer incidence in Ghana especially breast cancer among women, its diagnosis and prognosis present enormous fear and worry for women and their families. Thus, breaking the news of breast cancer diagnosis to patients presents enormous difficulty to healthcare professionals. Aim: This study sought to explore the preferences of people living with breast cancer regarding the disclosure of their diagnosis. Methods: The study used an exploratory-descriptive qualitative design to recruit and interviewed 17 women diagnosed with breast cancer and receiving treatment in a National Radiotherapy and Nuclear Medicine Center of a major Teaching Hospital in Ghana. Data were analyzed using Braun and Clarke’s 2006 thematic analysis approach. Findings: Two major themes, six subthemes, and five sub-subthemes were generated from the data. The study found that patients preferred detailed information on the stage of their cancer diagnosis, treatment options, and the lifestyle necessary to enhance their health. The participants preferred that the news of their diagnosis be broken to them gradually in the form of a conversation with consolatory gestures, without any hidden information. From the study, clinicians do not follow any specific systematic method in the disclosure process, clinicians used a conversation approach involving consolation, encouragement, comic words, and pampering mostly in disclosing cancer diagnosis which was found relieving.In conclusion, People living with breast cancer prefer full gradual disclosure of diagnosis in a conducive environment in the presence of loved ones in a humane manner.

Abstract Background The health burden of breast cancer is rising in China. The effect of informed diagnosis on long-term survival is not fully understood. This retrospective cohort study aims to explore the association between early informed diagnosis and survival time in breast cancer patients. Methods A total of 12,327 breast cancer patients were enrolled between October 2002 and December 2016. Potential factors, including knowing the cancer diagnosis status, sex, age, clinical stage, surgery history, grade of reporting hospital and diagnostic year were, analyzed. We followed up all participants every 6 months until June 2017. Propensity score matching (PSM) was used to balance the clinicopathologic characteristics between patients who knew their diagnosis and those who did not. Results By June 2017, 18.04% of the participants died of breast cancer. Before PSM, both the 3-year and 5-year survival rates of patients who knew their cancer diagnosis were longer (P

Background: With a recent increase in the prevalence of autism spectrum disorder (ASD), an important issue has emerged in clinical practice regarding when and how patients themselves should be given explanations following a diagnosis of ASD. The clinical guidelines of the UK National Institute for Health and Care Excellence state that children diagnosed with ASD should receive an explanation about what ASD is and how it affects their development and functioning—"if appropriate". However, the guidelines do not provide any specifics regarding what constitutes "appropriate" situations Methods: We conducted an anonymous self-administered postal questionnaire survey targeting all members of the Japanese Society for Child and Adolescent Psychiatry (n=1,995). The analysis included only physicians who had newly diagnosed pediatric patients with ASD in the past year. We imposed a limit of one year because diagnoses further back than that are difficult to recall; in other words, this would enhance the recall bias Results: The recovery rate was 30.8%, and the rate of diagnosis disclosure to patients themselves without intellectual disability was 15.3%. We asked 361 physicians who responded that "deciding on a case-by-case basis" was the ideal way to disclose an ASD diagnosis about 20 items prioritized by physicians at the time of diagnosis disclosure and extracted three factors through exploratory factor analysis. Multiple logistic regression analysis was performed with physician attributes, awareness of ASD as a disorder or personality, and the three extracted factors as explanatory variables; diagnosis disclosure was the dependent variable. The patient age group and only one of the three factors (i.e., "factor related to readiness to accept diagnosis") showed a significant association with disclosure of the diagnosis to the individual. Items included in the "factor related to readiness to accept diagnosis" were as follows: the degree of parental understanding, relationship of the patient with their parents/physician, agreement in opinion between parents, parental consent, "sufficient" patient understanding, symptom stabilization, and a guarantee of sufficient time required to explain the diagnosis to the patient Conclusion: In clinical settings, disclosing an ASD diagnosis with the consideration of patient/parent readiness toward accepting the diagnosis could help to guide physicians in determining an ideal timing for disclosure. Future studies are needed to establish detailed and concrete guidelines regarding disclosure of an ASD diagnosis to patients. [ABSTRACT FROM AUTHOR]

Background: Although diagnosis disclosure to cancer patients has important roles in cancer care, it is not a routine practice in countries like Egypt. Respecting patients' autonomy and responding to their preferences are among the factors that should guide the practice of cancer diagnosis disclosure. Objectives: To assess the preferences of Egyptian cancer patients regarding the disclosure of cancer diagnosis and to determine factors that may affect their preferences. Methods: The study included 295 patients aware of their cancer diagnosis from 3 cancer care facilities in Egypt. Patients were asked if they would have preferred to be informed of the diagnosis or not, whom they would have preferred to receive the diagnosis information from, and if they would have preferred to tell their families or not. Results: The vast majority (91%) of the included patients preferred to be informed about their diagnosis, 59% preferred to disclose the diagnosis to their families and 66% preferred to receive the diagnosis information from a physician. In univariate analysis, male gender, higher education level and employment were significantly associated with the preference for disclosure. None of the studied variables associated significantly with the preferences in multivariate analysis. Conclusion: The majority of Egyptian cancer patients in our study preferred to be informed about their diagnosis, which should be respected. The results may help in changing the diagnosis disclosure practice of health care professionals and refuting the misconception of family caregivers about cancer diagnosis disclosure in Egypt and countries with similar culture. [ABSTRACT FROM AUTHOR]

The medical diagnosis of autism, held during childhood and adolescence, is often presented only to the parents. Therefore, they face the dilemma of when, whether and how they should disclose it to their child. While the prevalence of the diagnosis of children and adults with autism has been increasing in recent years, there is still no therapeutic approach that addresses the coping of parents, children, teenagers, and young adults, with the issue. The present study depicts a qualitative inquiry based on a two-sessions focus group with parents confronting this dilemma who have not yet disclosed the diagnosis to their child. The article presents a model of five complex and interconnected dilemmas with which parents must cope. The first concerns the invisibility of autism and the fact that it can be concealed. The second addresses the stigma related to the diagnosis and the difficulty facing the word itself. The third dilemma addresses the time motive and the concerns related to the child's reaction to the diagnosis. The fourth focuses on the child's surroundings who are aware or unaware of the diagnosis, and the last dilemma addresses the child's personal narrative and the practice of disclosure. The article's conclusion contains initial recommendations that can be used as a basis for the further development of a detailed intervention program that can assist parents throughout the diagnostic process. [ABSTRACT FROM AUTHOR]

This review aimed to assess the quality and content of recommendations for delivering an autism diagnosis, published internationally within clinical practice guidelines. Seventeen relevant guidelines were identified. When methodological information was provided, recommendations for feedback were predominantly formed through consensus. Recommendations consistently included who should attend feedback, the timing and mode of delivery, the clinician's manner, and what should be discussed and/or included in an accompanying report. Specific recommendations were not consistent however, and a number of gaps were identified, such as the inclusion of educators and educational specific recommendations. Although individual variation is necessary for autism diagnosis disclosure, agreement on minimum standards of practice is warranted. Further investigation is required to establish best practice. [ABSTRACT FROM AUTHOR]

This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure. [ABSTRACT FROM AUTHOR]

Abstract Background The aim of this study was to assess the impact on quality of life from informing patients with cancer of their diagnosis and disease status. Method We searched the follow databases, PubMed, CENTRAL (Cochrane Central Register of Controlled Trials), PsycINFO, WEB OF SCIENCE, Embase, CBM (Chinese Biomedical Literature database), WANFANG database (Chinese Medicine Premier), and CNKI (China National Knowledge Infrastructure), using the following terms: neoplasm, cancer, tumor, tumor, carcinoma, disclosure, truth telling, breaking bad news, knowledge, knowing, awareness, quality of life, QOL. Pairs of reviewers independently screened documents and extracted the data, and the meta-analysis was performed using Revman 5.0 software. Results Eleven thousand seven hundred forty records retrieved from the databases and 23 studies were included in the final analysis. A meta-analysis revealed that there were no differences in either the general quality of life and symptoms of fatigue, pain, dyspnea, insomnia, appetite loss, and diarrhea, between informed and uniformed cancer patients (P > 0.05). There were also no differences found between the patient groups in physical function, role function, cognitive activity, and emotional function (P > 0.05). In terms of vitality, patients who were completely informed about their diagnosis showed higher vitality than uniformed patients. Uninformed patients seemed to have lower social function scores. Between partly informed and uninformed cancer patients, no differences were found in their general quality of life, function domains, and disease-related symptoms (P > 0.05). Conclusion Informing cancer patients of their diagnosis may not have a detrimental effect on their quality of life. Trial registration CRD42017060073 .

Background: Individuals with multiple sclerosis (MS) regularly report making strategic decisions about whether to share their diagnosis or keep it a secret; for many, this represents a key stressor. Surprisingly, the impact of disclosure and concealment are understudied in MS and a formal measurement instrument is lacking. We developed the Diagnosis Disclosure and Concealment in MS (DISCO-MS) survey, a self-assessment tool evaluating (1) frequency of concealment behaviors and (2) expected consequences of diagnosis disclosure in persons with MS. Methods: A systematic mixed-methods process was used for the design and initial validation of the DISCO-MS. Associations of DISCO-MS responses to demographics, clinical variables, and mood were examined in 204 participants with MS. Results: The 39-item DISCO-MS shows good psychometric characteristics. Approximately 25% of respondents conceal their diagnosis, particularly in professional settings. Higher concealment behaviors were associated with younger age, shorter disease duration, and lower physical disability. Nearly 50% of respondents believed that talking openly about their diagnosis might have undesirable professional and interpersonal consequences. Younger age, higher depression, and higher anxiety were associated with greater expectations of negative consequences. Conclusion: Development and validation of the DISCO-MS presents the first step toward systematic study of the impact of DISCO on people with MS. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To refresh your knowledge of the genetics of Huntington's disease • To enhance your awareness of the implications of pre-symptomatic genetic testing for Huntington's disease • To reflect on situations that require special consideration before genetic testing is conducted Huntington's disease is a fatal and progressive neurodegenerative disease characterised by a shrinkage of the brain, movement abnormalities and cognitive decline. It is an autosomal dominant disease caused by a DNA mutation in the huntingtin gene located on chromosome 4. Children with one parent affected by Huntington's disease have a 50% risk of inheriting the faulty gene. Genetic testing for Huntington's disease has been available for more than 20 years and can be used for pre-symptomatic or confirmatory testing. Healthcare professionals across a variety of specialties and settings, including primary care, may encounter patients who ask to be genetically tested for Huntington's disease. This article explains the genetics of Huntington's disease, describes its clinical diagnosis, identifies some of the implications of pre-symptomatic genetic testing and discusses situations that require special consideration before the decision to conduct genetic testing is made. The article is written from a US perspective, but the implications and challenges discussed are highly relevant in the UK. [ABSTRACT FROM AUTHOR]

The study investigates the experience of the parents of 48 children who have prenatally diagnosed with Klinefelter syndrome [KS] using a specifically developed questionnaire. Fifty percent of the participants were satisfied with the disclosure process, particularly those who received the diagnosis by an experienced geneticist. One of the aims of genetic and psychological counseling should be showing the advantages of a gradual and early disclosure with their child and underlining the possible advantages and disadvantages of spreading the diagnosis with other people to optimize support and minimize stigmatization. [ABSTRACT FROM AUTHOR]

Background: The health burden of breast cancer is rising in China. The effect of informed diagnosis on long-term survival is not fully understood. This retrospective cohort study aims to explore the association between early informed diagnosis and survival time in breast cancer patients.Methods: A total of 12,327 breast cancer patients were enrolled between October 2002 and December 2016. Potential factors, including knowing the cancer diagnosis status, sex, age, clinical stage, surgery history, grade of reporting hospital and diagnostic year were, analyzed. We followed up all participants every 6 months until June 2017. Propensity score matching (PSM) was used to balance the clinicopathologic characteristics between patients who knew their diagnosis and those who did not.Results: By June 2017, 18.04% of the participants died of breast cancer. Before PSM, both the 3-year and 5-year survival rates of patients who knew their cancer diagnosis were longer (P < 0.001). After PSM, the above conclusion was still established. By stratified analysis, except for the subgroups of male patients and stage III patients, patients who knew their diagnosis showed a better prognosis in all the other subgroups (P < 0.05). Cox regression analysis showed that knowing a cancer diagnosis was an independent risk factor for survival in breast cancer patients (P < 0.001).Conclusions: Being aware of their cancer diagnosis plays a protective role in extending the survival time of breast cancer patients, which suggests that medical staff and patients' families should disclose the cancer diagnosis to patients in a timely manner. Further prospective studies need to be made to validate our findings. [ABSTRACT FROM AUTHOR]

Objectives Despite extensive research on lifestyle factors that influence the risk of developing dementia, limited evidence exists on whether older adults adopt healthier habits post-diagnosis in the hope of preserving their quality of life. Method Using panel data (1998–2014) from the Health and Retirement Study, this study investigated whether individuals who received a new dementia diagnosis were more likely to modify smoking and drinking behaviors than those without such a diagnosis. Propensity score weighting was used to adjust for observable differences between groups. Results Older adults with a new dementia diagnosis were 2.8 times more likely to reduce alcohol consumption than those without such a diagnosis. This result was mainly attributable to "light" drinkers at baseline and appeared to fade over time. We found no statistically significant effect of a dementia diagnosis on smoking cessation or on reduction in the number of cigarettes smoked. These results were robust to multiple sensitivity tests, including the use of cognition scores to indicate dementia onset instead of self-reported physician diagnosis. Discussion A new dementia diagnosis can serve as a window of opportunity that prompts some older adults to change habits related to alcohol consumption. This has important implications for clinical practice surrounding dementia diagnosis disclosure, the rates of which are currently much lower than other medical conditions. [ABSTRACT FROM AUTHOR]

Abstract Background Recently the dementia field has shifted focus away from the early diagnosis debate in favour of ‘timely’ diagnosis. ‘Timely’ diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. Determining when diagnosis disclosure is ‘timely’ may be particularly complex if there are differing views between the individual, their family, and their health care providers regarding disclosure. This study explores the preferences of consumers regarding when a diagnosis of dementia should be communicated. Methods A cross-sectional survey was conducted with English-speaking adults attending outpatient clinics at an Australian hospital. Participants were recruited by a research assistant in the clinic waiting room and invited to complete the survey on a web-connected iPad. The survey included questions examining socio-demographics and experience with dementia. Two scenarios were used to explore preferences for timing of diagnosis disclosure. Results Of 446 participants, 92% preferred a diagnosis of dementia to be disclosed as soon as possible. Preferences were not associated with socio-demographics or previous dementia experience. Most participants also preferred disclosure to occur as soon as possible if their spouse or partner was diagnosed with dementia (88%). There was strong correlation between preferences for self and preferences for spouse (0.91). Conclusions These findings provide guidance to health care providers about preferences for disclosure of a dementia diagnosis, and may help to overcome potential barriers to timely diagnosis. As the prevalence of dementia increases, consumers’ preference for diagnosis to occur as soon as possible has important implications for the health system.

Yuxiu Liu,1,2 Jinhong Yang,3 Da Huo,3 Honghua Fan,3 Yufang Gao4 1Post-Doctoral Station of Clinical Medicine, The Affiliated Hospital of Qingdao University, Qingdao, China; 2Department of Community Nursing, School of Nursing, Weifang Medical University, Weifang, China; 3Department of Oncology, Weifang People’s Hospital, Weifang, China; 4Department of Nursing, The Affiliated Hospital of Qingdao University, Qingdao, China Purpose: The purpose of this study was to investigate the disclosure incidence of cancer diagnosis to patients before chemotherapy, to survey the attitudes of the patients and their families and related influencing factors toward disclosure of cancer diagnosis, and to compare the anxiety and depression levels between the disclosure and non-disclosure patients.Participants and methods: A prospective cohort study was conducted at a tertiary hospital in China. A consecutive series of patients who had been diagnosed with malignancy by pathology and their family member were included in our study from March 2017 to December 2017. Patients’ situation, preferences, and their family members’ preferences were investigated by a self-designed questionnaire following a semi-structured interview. The Chinese version of HADS for anxiety and depression was used to test the patients’ psychological distress. Binary logistic regression was used to analyze the related influencing factors of patients’ disclosure of their diagnosis.Results: A total of 124 pairs of patients and their family members were analyzed. Of the 124 patients, 47 (37.90%) patients knew about their cancer diagnosis and 77 (62.10%) patients did not know about their cancer diagnosis before chemotherapy. There were more patients than family members who wanted the patients to be informed about the diagnosis of terminal illness (91.9% vs 53.2%, P0.05). Conclusion: More than half of the patients did not know their exact diagnosis before chemotherapy in China. Educational level and economic status may be influencing factors for the disclosure of cancer diagnosis. Patients and their family members had different preferences toward diagnosis disclosure. Keywords: cancer, diagnosis disclosure, China, patient, family member

Epilepsy is a disease creating multiple obstacles for patients in terms of their social rights as well as for their associates. The level of physician’s legal literacy can both improve the life of a patient with epilepsy and significantly complicate it for many years. Despite the existing normative legal acts regulating the admission of patients with epilepsy and epileptic syndrome to various types of work, military service, weapon possession, and driving, there are still many questions, which is a significant defect in medical service. First of all, we should take into account that people with long-term remission (with or without pharmacotherapy) have the same legal restrictions as patients with incurable epilepsy. Therefore, accurate initial diagnostics in patients with symptoms similar to epilepsy is very important.This article describes the main legislative rules regulating social rights of people with epilepsy and draws attention of the medical community to the problems of these patients.

Existing literature has indicated that there may be a relationship between diagnosis disclosure and gender as it has been asserted that men and women perceive the diagnosis of a mental health disorder differently. Specifically, men report higher levels of perceived stigma when considering a mental health diagnosis and women report a higher likelihood of disclosing a mental health diagnosis to others. The purpose of this current study was to investigate how individuals perceive an illness diagnosis disclosure via an online survey as it was hypothesized that men would be less likely than women to disclose any illness and that all participants would practice selective disclosure. Participants were randomly assigned to read about receiving a diagnosis, which was experimentally manipulated to describe either a mental or physical illness. Results indicated that although there was no significant effect on the intent to disclose their diagnosis, male and female participants responded differently to the type of diagnosis in their concern about the negative impact of the diagnosis and being stigmatized by others. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to assess the impact on quality of life from informing patients with cancer of their diagnosis and disease status.Method: We searched the follow databases, PubMed, CENTRAL (Cochrane Central Register of Controlled Trials), PsycINFO, WEB OF SCIENCE, Embase, CBM (Chinese Biomedical Literature database), WANFANG database (Chinese Medicine Premier), and CNKI (China National Knowledge Infrastructure), using the following terms: neoplasm, cancer, tumor, tumor, carcinoma, disclosure, truth telling, breaking bad news, knowledge, knowing, awareness, quality of life, QOL. Pairs of reviewers independently screened documents and extracted the data, and the meta-analysis was performed using Revman 5.0 software.Results: Eleven thousand seven hundred forty records retrieved from the databases and 23 studies were included in the final analysis. A meta-analysis revealed that there were no differences in either the general quality of life and symptoms of fatigue, pain, dyspnea, insomnia, appetite loss, and diarrhea, between informed and uniformed cancer patients (P > 0.05). There were also no differences found between the patient groups in physical function, role function, cognitive activity, and emotional function (P > 0.05). In terms of vitality, patients who were completely informed about their diagnosis showed higher vitality than uniformed patients. Uninformed patients seemed to have lower social function scores. Between partly informed and uninformed cancer patients, no differences were found in their general quality of life, function domains, and disease-related symptoms (P > 0.05).Conclusion: Informing cancer patients of their diagnosis may not have a detrimental effect on their quality of life.Trial Registration: CRD42017060073 . [ABSTRACT FROM AUTHOR]

AUTH Why you should read this article: • To be aware of the benefits of timely diagnosis and disclosure of dementia for patients and their families • To gain knowledge of the enablers and barriers to timely diagnosis of dementia in primary care • To understand the expanding role of nurses practising in primary care and community mental health services in the care, diagnosis and management of patients with dementia Background: Timely diagnosis involves making and sharing a diagnosis at a time and in a way that are most appropriate for the physical, emotional, medical and other needs of the patient and their family. GPs are often the first point of contact for people who are concerned that they may have dementia and, therefore, have an essential role in the timely diagnosis and disclosure of this condition. Aim: To explore the views of GPs in relation to the timely diagnosis and disclosure of dementia for patients and their families in primary care. Method: This was a small-scale qualitative study in which a survey questionnaire was sent to GPs practising in one health service executive locality in the west of Ireland. A total of ten GPs completed the questionnaire, and descriptive content analysis was used to explore their responses. Findings: Enablers of timely diagnosis and disclosure of dementia included: patient and family awareness of dementia; access to diagnostic resources and multidisciplinary assessments; having sufficient time to disclose the diagnosis sensitively; and the availability of community-based, dementia-specific support. Barriers to timely diagnosis and disclosure of dementia included: diagnostic uncertainty; concerns about misdiagnosing patients; and concerns about the stigma associated with dementia and how patients and their families might react to disclosure of such a diagnosis. There was widespread agreement among the GPs that timely diagnosis and disclosure benefit patients and their families, but also some scepticism regarding the efficacy of diagnosis and treatment for dementia (therapeutic nihilism). Conclusion: The diagnosis and disclosure of dementia in primary care could be enhanced by improving GPs' access to resources such as multidisciplinary assessments, memory clinics and community-based support schemes. Primary care and community mental health nurses have an important role in providing expertise to GPs and support to patients and their families. [ABSTRACT FROM AUTHOR]

Objective: As a malignant tumor with high mortality, lung cancer (LC) often causes great trauma to patients, and a series of negative emotions and a heavy psychological burden accompanies poor prognosis. Whether or not to inform the patients of their condition has always been a controversial topic in the medical community. This retrospective cohort study investigated the association between early informed diagnosis and survival time in patients with LC.Methods: A total of 29 825 patients with LC were enrolled between October 2002 and December 2016. The potential factors influencing LC survival were registered, including knowing their cancer diagnosis status, age, gender, pathological type, clinical stage, surgical history, hospital grade, and patient occupation. All participants were followed up every 6 months until June 2017.Results: In June 2017, 23.1% of the participants still survived. Their median survival time (MST) was 11.20 months (95% confidence interval [CI], 10.98-11.43). Generally, patients that knew their cancer diagnosis had longer MST than those who did not (18.33 months vs 8.77 months, P < .001). By stratified analysis, patients that knew their cancer diagnosis had longer survival time in each subgroup (P < .001, all subgroups). Cox regression analysis showed that knowing their cancer diagnosis was an independent influencing factor for survival in patients with LC (hazard ratio, 0.826; 95% CI, 0.802-0.851; P < .001).Conclusions: Knowing their cancer diagnosis contributed to longer survival time in patients with LC, providing clear evidence that medical staff and patients' families should fully disclose cancer diagnoses to patients. [ABSTRACT FROM AUTHOR]

Objective: To qualitatively investigate and explore oncology nurses' perceptions of cancer diagnosis disclosure (CDD) for cancer patients.Methods: Purposive sampling led to the inclusion of 25 nurses with diverse characteristics from four inpatient oncology nursing wards in two tertiary hospitals. Semistructured, one-on-one, in-depth interviews were conducted. Colaizzi's analysis method was performed with NVivo software to develop categories and themes.Results: Four themes were identified: (a) impact of CDD, including advantages and disadvantages for patients and nurse distress; (b) barriers to CDD, including requests from family members, patients themselves, and communication skills; (c) strategies for CDD, including communication with family members, physician-nurse collaboration, and patient education; and (d) nurses' roles in CDD, including active participants and promoters and advocates.Conclusions: More channels of information and education on cancer, cancer diagnosis, life, and death will be needed in the future. Nurses should actively participate in cancer diagnosis delivery, and more collaboration between nurses and physicians must occur. [ABSTRACT FROM AUTHOR]

BACKGROUND: Receiving a breast cancer diagnosis can be traumatic and anxiety-producing. The way the diagnosis is disclosed to patients can affect their experience. OBJECTIVES: The aim of this article is to determine patient preferences for being informed of a breast cancer diagnosis and the breast nurse navigator (BNN) role during the diagnostic experience. METHODS: A survey was mailed to 517 patients with breast cancer. Summary statistics were performed on 199 completed surveys. FINDINGS: Patients preferred to hear their diagnosis in person. BNNs were more likely to provide the right amount of support and resources compared to other providers. Patients described the following preferences: knowing results as soon as possible, having a personal touch/emotional support, receiving the information from an expert, and getting information about their disease and next steps. [ABSTRACT FROM AUTHOR]

It is increasingly recognised that there are challenges affecting the current delivery of dementia diagnoses. Steps are required to address this. Current good practice guidelines provide insufficient direction and interventions from other healthcare settings do not appear to fully translate to dementia care settings. This project has taken a sequential two-phase design to developing a tool specific to dementia diagnostic delivery. Interviews with 14 participants explored good diagnostic delivery. Thematic analysis produced key themes (overcoming barriers, navigation of multiple journeys and completing overt and covert tasks) that were used to inform the design of a tool for use by clinicians, patients and companions. The tool was evaluated for acceptability in focused group discussions with 13 participants, which indicated a desire to use the tool and that it could encourage good practice. Adaptations were highlighted and incorporated to improve acceptability. Future research is now required to further evaluate the tool. [ABSTRACT FROM AUTHOR]

Background: Relatively little is known about preoperative anxiety and its associated factors with colorectal cancer, which is one of the most prevalent cancers. We aimed to investigate preoperative anxiety and its associated social, psychological and coping factors based on the disclosure/nondisclosure of cancer diagnosis.Methods: A cross-sectional study was conducted in consecutive colorectal cancer inpatients (N = 434), whose anxiety was assessed based on semi-structured interview, demographic-clinical variables, social support, self-esteem and coping styles (acceptance-resignation, confrontation, avoidance). Hierarchical regression analyses were conducted to explore the relationships between social, psychological, coping factors and preoperative anxiety.Results: There was no significant difference in preoperative anxiety (χ2 = 1.031, p = .31) between the disclosure and nondisclosure groups. Social, psychological and coping factors together accounted for an additional variance of preoperative anxiety (disclosure: 22%; nondisclosure: 20.8%). Social support (β = -0.17, p = .004), self-esteem (β = -0.22, p = .001) and coping styles (acceptance-resignation: β = 0.32, p < .001; confrontation: β = 0.13, p = .06; avoidance: β = -0.17, p = .04) were associated with preoperative anxiety in the nondisclosure group. For the disclosure group, acceptance-resignation was the only significantly associated factor of preoperative anxiety (β = 0.37, p < .001).Conclusions: Coping styles, such as acceptance-resignation and confrontation, could aggravate preoperative anxiety. Avoidance, social support and self-esteem might be helpful in preventing preoperative anxiety. These findings highlight the importance of providing psychological interventions for cancer patients by integrating social support, self-esteem and coping styles when disclosing a cancer diagnosis. [ABSTRACT FROM AUTHOR]

To explore students' observations in the hidden curriculum of physicians' breaking bad news interactions and identify dimensions and patterns within them. We qualitatively analyzed 156 written narrative descriptions of bad news encounters in the clinics written by senior medical students. The analysis identified three dimensions within the encounters: providing information, dealing with emotions, and discussing treatment plans. These dimensions were observed in different proportions, identifying four communication patterns. Half of the encounters focused solely on presenting a treatment plan. Within them, the news was communicated abruptly while neglecting to share information or address emotions. Compared to the main literature on breaking bad news that focuses on two dimensions—the present study identified a third, prominent dimension—discussing the treatment plan. Half of the hidden curriculum experiences contradict the taught protocol, paying little/no attention to emotion and information. When teaching breaking bad news, it is essential to address the day-to-day practices students' observe. Students exposed to these encounters might misinterpret the physician's reliance on a single dimension as best practice. To mitigate this and help recognize their and others' tendency to focus primarily or solely on one dimension, we suggest a simple reflective prompt. • Day-to-day "hidden curriculum" experiences influence students' learning of norms of behavior, communication, and practices. • 50% of the hidden curriculum encounters focused on the treatment plan, neglecting emotions and information. • Failure to address emotional or informational needs is concerning for patient care and inhibits learning of best practices. • Educators should help students and faculty critically assess breaking bad news communication observed in the hidden curriculum. • Assessment should include identifying others and their tendency to focus primarily on one dimension at the expense of others. [ABSTRACT FROM AUTHOR]

Purpose - Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients. Methodology/approach -- Using gender structure theory as a model. 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional and institutional contexts. Findings -- Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared and they are open about their diagnosis with their non-intersex peers and teachers. They alsofind peer support valuable. Research linritations/implications - Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks. Practical implications--These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth. Social implications -- Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues. Originality/value -- Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives. [ABSTRACT FROM AUTHOR]

Objective: Family caregivers (FCs) of cancer patients are frequently seen as a barrier to honest communication with patients in Egypt. This study was conducted to investigate the attitude of FCs of cancer patients toward cancer diagnosis disclosure (CDD) and its determinants.Methods: A structured interview was used to assess the preferences of 288 FCs regarding CDD.Results: According to the FCs, 85% of patients were aware of their diagnosis. The majority (81%) of FCs preferred CDD to patients. In case they developed cancer, 92% of FCs wanted to know their diagnosis and 88% wanted to inform their families. In a univariate analysis, factors associated with FCs' negative attitude toward CDD to patients were as follows: patient's lower level of education (P = .001), patient's rural residence (P < .001), hematological malignancies (P < .001), FC's belief that the patient is unaware of diagnosis (P < .001), FC's unwillingness to know his/her own cancer diagnosis (P < .001), and FC's unwillingness to inform his/her family about his/her cancer diagnosis (P < .001). Only 2 factors predicted independently the negative attitude of FCs toward CDD, the FC's belief that the patient is unaware of diagnosis (P < .001), and the FC's unwillingness to know his/her own cancer diagnosis (P = .049).Conclusions: The results suggest that the majority of FCs of Egyptian cancer patients prefer CDD to patients. The finding that the vast majority of FCs of aware patients preferred CDD suggests that the reaction of Egyptian patients to CDD is acceptable by FCs. Family caregivers with a negative attitude toward CDD may be reflecting their own fears. [ABSTRACT FROM AUTHOR]

Purpose - Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients. Methodology/approach - Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts. Findings - Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable. Research limitations/implications - Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks.Practical implications - These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth. Social implications - Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues. Originality/value - Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives. [ABSTRACT FROM AUTHOR]

Diagnosis disclosure in dementia is a complex area that results in positive and negative outcomes for both clinicians and patients. Eight clinicians and seven patients were interviewed about their recent experience of either giving or receiving a diagnosis of dementia. Interview transcripts were analysed using interpretative phenomenological analysis. The analysis revealed two higher order themes: Hiding from the Truth and The Social Environment: Help or Hindrance? Both clinicians and patients experience avoidance in relation to the diagnosis. The results support a psychosocial model of dementia and highlight the need for flexible follow up interventions that both recognise patients' use of avoidance and denial as coping strategies and facilitate social support. The social environment can also assist and hamper clinicians' efforts to help their patients. Future research is needed to elucidate optimal conditions for facilitating patients' uptake of positive coping strategies. [ABSTRACT FROM AUTHOR]

Background: Research examining online health communities suggests that individuals affected by chronic health conditions can obtain valuable information and social support through participation in peer-to-peer web-based information exchanges, including information sharing and seeking behaviors. The risks and rewards of these same behaviors in the case of acute illnesses, such as COVID-19, are less well understood, though there is reason to believe that individuals with COVID-19 and other acute illnesses may accrue similar benefits., Objective: This study examines the propensity of American adults to disclose and discuss their COVID-19 diagnosis and symptoms on social media while actively infected with the SARS-CoV-2 virus, as well as to engage in peer-to-peer information seeking in order to better understand the illness that they are experiencing. Additionally, this study seeks to identify the motivations for these behaviors as well as their subsequent impacts on perceived social connectedness and health anxiety in patients with COVID-19., Methods: We conducted a representative survey of 2500 US-based adults using a sample purchased through an industry-leading market research provider. Participants were selected through a stratified quota sampling approach to ensure a representative sample of the US population. Balanced quotas were determined (by region of the country) for gender, age, race, ethnicity, and political affiliation. Responses were analyzed from 946 participants who reported having an active social media account and testing positive for COVID-19 at least once since the start of the pandemic., Results: The results show that only a small portion of social media users (166/946, 18%) chose to disclose and discuss their COVID-19 diagnosis while infected with the virus. However, among those who did, an overwhelming majority (206/251, 82%) said that doing so helped them feel more connected and supported while infected with the virus. A larger percentage of the 946 respondents (n=319, 34%) engaged in peer-to-peer information seeking while infected with COVID-19. Among those who did, a large majority (301/319, 94%) said that doing so was "helpful," but more than one-third (115/319, 36%) said that reading about other people's experiences made them "more worried" about having COVID-19, while 33% (108/319) said that it made them "less worried." Illness severity and political affiliation were significant predictors of both information sharing and seeking., Conclusions: The findings suggest that the benefits (and risks) associated with online health communities are germane to patients with acute illnesses such as COVID-19. It is recommended that public health officials and health care providers take a proactive approach to cultivating professionally moderated forums supporting peer-to-peer engagement during future outbreaks of COVID-19 and other acute illnesses in order to improve patient outcomes and promote social support and connectedness among infected patients., (©Stephen Neely, Feng Hao. Originally published in JMIR Formative Research (https://formative.jmir.org), 05.09.2023.)

Background and Objective: Disclosure of cancer is one the main challenges in caring of patients with cancer, since it may have adverse effects on the patients quality of life. This study was done to determine life quality of cancer patient with or without self awareness. Materials and Methods: This case – control study was conducted on 300 cancer patients in Shahid Ghazi-Tabatabaei hospital in Tabriz, Iran during 2009. The cancer patients included 150 subjects aware of their cancer diagnosis as cases and 150 unaware patients as controls. The patient's quality of life was assessed Using EORTC QLQ-C30 questionnaire. Data were analyzed using SPSS-17 and student’s t-test. Results: The mean±SD of quality of life among aware and unaware patients were 64.18±18.85 and 65.16±19.02, respectively. There was no significant difference of quality of life between two groups. Life social dimension in unaware patients significantly was more than aware patients (P

New criteria for the diagnosis of Alzheimer’s disease (AD) based on biomarker results have recently been developed and are currently undergoing extensive validation. The next few years may represent a time window where the diagnostic validity of biomarkers will be studied in highly specialised research settings. Biomarkers results will be used to direct clinical diagnosis and, whenever appropriate, therapy and management. This piece aims to stimulate discussion by identifying the ethical challenges involved in the use of biomarkers to make a diagnosis of mild cognitive impairment due to AD and disclose it to patients. At the individual level, these challenges are related to i) the ethical appropriateness of implementing an ecological diagnostic research protocol, ii) the related informed consent process, and iii) the diagnostic disclosure. We justify the ethical legitimacy of implementing a research diagnostic protocol by referring to the respect of patients’ subjectivity and autonomy, and we suggest guidelines for informed consent development and diagnostic disclosure. All of the above points are discussed in light of the unique features of AD, currently scanty treatment options, and knowledge and uncertainties regarding the diag

Objectives Disclosure of a concealable stigmatized identity, such as epilepsy, to those external to the nuclear family can be complex. Among children living with epilepsy (CWE), diagnosis disclosure has been identified as a quality-of-life issue and a source of psychosocial distress. Despite this, limited empirical evidence exists regarding the disclosure experiences of CWE. This study aimed to identify the contextual factors that act as challenges for CWE when disclosing their epilepsy diagnosis to others external to the nuclear family. Method This qualitative exploratory study consisted of individual interviews with 29 CWE (aged 6–16 years; mean age = 11.17 years; S . D . = 2.85). Participants were recruited from a tertiary referral unit in the neurology department of a pediatric hospital and through a national epilepsy association. Interviews were audiotaped and transcribed verbatim. Data were thematically analyzed. Findings The five main challenges to epilepsy diagnosis disclosure for children were: 1) CWE's desire for normalcy, 2) out of sight but in the mind, 3) contending with negative responses to disclosure, 4) the complexity of epilepsy, and 5) self and others' perceptions of epilepsy. Discussion These findings provide valuable insight into the factors that present difficulties and impede epilepsy diagnosis disclosure among CWE. Such knowledge is important in informing engagements between health-care professionals (HCPs) and CWE. In particular, HCPs should remain cognisant of the challenges CWE face as they: (i) strive for normalcy and (ii) grapple with comprehending their complex neurological condition. Tackling such disclosure challenges could serve to enhance life quality, improve CWE's openness with others about epilepsy, and consequently work toward reducing epilepsy-related misconceptions and stigma. [ABSTRACT FROM AUTHOR]

Disclosing an epilepsy diagnosis to others is complex due to the condition's largely invisible nature and associated stigma. Despite this, little has been documented in terms of what this process involves for children living with epilepsy (CWE) and their parents. A systematic review was conducted to examine and synthesize evidence pertaining to: (i) the disclosure practices of CWE and their parents, (ii) enablers and barriers for disclosure, (iii) the impact of disclosure practices, and (iv) the relationship between disclosure management and other variables. The electronic databases PsycINFO, PubMed, MEDLINE, CINAHL, Scopus, and Web of Science were searched systematically. Any empirical, peer-reviewed journal articles with findings reported regarding the self- or proxy-reported disclosure practices of children aged 0–18 years with any type of epilepsy and/or their parents were deemed eligible for inclusion. Two review authors completed all stages of screening, data extraction, and quality assessment independently with two additional review authors resolving any discrepancies. A total of 32 articles were included in the review. Only one dated study examined disclosure as a primary focus; in the remaining studies, disclosure was a subfocus of larger studies or pertinent qualitative themes/subthemes incidentally emerged. The limited evidence suggests that: 1) CWE and parents adopt varying disclosure management strategies — from concealment to voluntary disclosure; 2) disclosure decisions are challenging for CWE and parents; 3) many barriers to disclosure exist (e.g., fear of stigmatization and rejection); 4) only a limited number of factors that enable disclosure are known (e.g., openness by others to engage with and learn about epilepsy); 5) disclosure management is significantly related to a number of variables (e.g., child/maternal perceived stigma and seizure control); and 6) there are varying outcomes for CWE and/or their parents in accordance with the adoption of specific disclosure management strategies (e.g., disclosure resulting in greater acceptance and the receipt of support or evoking anxiety/fear in others; and concealment resulting in misunderstandings, embarrassment, and stigma-coaching), but the evidence remains inconclusive in terms of which disclosure management strategy is optimal. While some preliminary work has been conducted, disclosure of epilepsy is a topic that has been largely neglected to date. This is despite the fact that disclosure is a significant source of concern for CWE and parent populations. Future studies should focus on elucidating the unique contextual factors that inform disclosure decisions in order to develop a theoretical framework that can explain the epilepsy disclosure decision-making process. [ABSTRACT FROM AUTHOR]

The present study aimed to explore previous experiences of Portuguese elderly couples in receiving the diagnosis of their children with Trisomy 21. It was developed using the oral history method, with the participation of fourteen couples. Data was collected through semi-structured interviews and analyzed based on content analysis. The results revealed that the diagnosis disclosure was a complex and difficult experience for couples to live through, accompanied by insufficient information about the syndrome, the childcare and the support network. The reactions of parents, families and friends to the diagnosis were, initially, hard-hitting, but ultimately they accepted and supported the children, without discrimination. [ABSTRACT FROM AUTHOR]

To date, the disclosure of a sex chromosome aneuploidy (SCA) diagnosis to an affected individual has not been explored. This study aimed to assess the timing and content revealed to an affected child by his or her parent(s), resources accessed in preparation, parental feelings of preparedness, common parental concerns, and recommendations for disclosure approaches. Two online surveys were created: 1) for parents of a child with a diagnosis and 2) for individuals with a diagnosis. One-hundred thirty-nine parent surveys (XXY n = 68, XXX n = 21, XYY n = 9, other SCAs n = 41) and 67 individual surveys (XXY n = 58, XXX n = 9) were analyzed. Parents most frequently discussed the topics of learning disabilities (47 %) and genetics (45 %) with their child during the initial disclosure. A significantly greater proportion of parent respondents reported feeling prepared vs. unprepared for disclosure, regardless of their child's diagnosis (z-test of proportions, all p's < 0.001). Both prepared and unprepared parents most frequently accessed resources such as websites, support groups, and discussion with the child's physician prior to disclosure, with unprepared parents accessing fewer resources ( M = 2.0 ± 1.41) than prepared parents [ M = 2. ± 1.56; t(101) =−2.02, p < 0.05]. Common parental concerns included making the conversation age-appropriate, discussing infertility, and possible impact on the child's self-esteem. Both parent and individual respondents endorsed being honest with the child, disclosing the diagnosis early and before puberty, and discussing the diagnosis gradually over time. These results provide recommendations for parents, and suggest benefits from additional resources and supports to alleviate concerns when approaching diagnosis disclosure. [ABSTRACT FROM AUTHOR]

Background and aims: In current Alzheimer disease (AD) research there is growing asymmetry between the modest benefits of the currently available treatments, in contrast to the possibility to diagnose AD early in its natural history. This complex situation brings along a number of important ethical issues about diagnosis disclosure and end-of-life decisions that need to be addressed. The principal aim of the study was to investigate the attitudes towards disclosure of a diagnosis of AD and disposition towards completion of advance care planning, in a sample of Italian citizens. Methods: A convenience sample of 1,111 Italian citizens recruited from a community hospital in Brescia were interviewed using a structured questionnaire with both yes/no and multiple choice format questions about AD. Results: The majority of the sample (83 %) wanted disclosure for themselves. Women and caregivers were significantly less likely to agree that their hypothetically afflicted relative should be informed of a diagnosis of AD. The majority of the sample (81 %) was in favor of advance care planning completion, most of all younger participants and non-caregivers. Less than a third of the sample (24 %) was aware of the existence a judicially appointed guardian for patients affected by dementia. Conclusion: The majority of the participants wanted a potential diagnosis of AD to be disclosed to them and to their relatives if they were to be afflicted. The utility of completion of advance care planning and designation of a judicially appointed guardian is frequently endorsed by the sample. [ABSTRACT FROM AUTHOR]

Objectives: There is still contradictory evidence on disclosure preferences regarding cancer diagnosis. The aim of this study was to evaluate the preference of cancer patients for knowing the truth about their disease, as well as the factors that might have an impact on these preferences. Method: This study was conducted in 11 cancer centers in Iran. A questionnaire was used to collect data, and all patients above 15 years of age who were willing to participate were included in the study. The patients were asked if they were aware of the malignant nature of their disease, and if they came to know about their disease at the time of initial diagnosis, or later. The patients were then asked about the way they looked upon their disease. In the final part of the questionnaire, the participants were asked the level of involvement they prefer to have in making treatment decisions. Results: In total, 1226 patients were enrolled in this study, only 565 (46.7%) of whom were aware of their disease at the time of diagnosis, and 878 (72.7%) at the time of interview, while 980 (85.2%) were willing to receive information about their disease. Patients' awareness was significantly associated with age under 50 years, female gender, having breast, skin or head and neck cancer, and having medical care in Shiraz or Hamadan while it was not associated with the stage or accompanying illness. Conclusion: While the majority of Iranian cancer patients prefer to be aware of the nature of their disease and have an active role in treatment decision making, they do not receive this information. [ABSTRACT FROM AUTHOR]

[english] In the model medical curriculum HannibaL at Hannover Medical School (MHH, Hannover, Germany), communication skills in taking case histories and disclosing diagnoses (breaking bad news) are assessed through an objective structured clinical examination (OSCE). This is part of the examinations which at the MHH represent the equivalent to the First Part of the Medical Examinations. The second year doctor-patient communication course preparing for these examinations was evaluated during the 2009/10 academic year.Using questionnaires specific to the learning objectives, learning needs were assessed, pre-post comparisons of self-assessed competencies were performed and key teaching methods were evaluated (5-point Likert scales, “5”=fully agree). At T0 (start of the course) 267 students participated (response rate: 93.7%), of which 180 filled out the T1 questionnaire during the last session of the course (67.4%). Within-subject analyses of variance and paired t-tests were conducted.The highest learning needs were found for the “to show how”-items regarding history taking and disclosing diagnoses (M=4.4). The T1-T0 comparisons showed the greatest improvements for history taking (“to know how”: mean difference = +1.7, “to show how”: +1.8, p[german] Im MHH-Modellstudiengang HannibaL werden Gesprächsführungskompetenzen für Anamneseerhebung und Diagnosemitteilung durch eine Objective Structured Clinical Examination (OSCE) geprüft, die Teil der dem Ersten Abschnitt der Ärztlichen Prüfung äquivalenten Prüfungen sind. Das vorbereitende Gesprächsführungspraktikum im 2. Studienjahr wurde 2009/10 evaluiert.Mittels lernzielspezifischer Fragebogen wurden der Lernbedarf erhoben, Vorher-Nachher-Vergleiche der selbsteingeschätzten Kompetenzen durchgeführt und zentrale Lehrmethoden bewertet (5-Punkt-Likertskalen, „5“=hohe Ausprägung). Zu T0 (Beginn des Praktikums) nahmen 267 Studierende teil (Teilnahmerate: 93,7%), von denen 180 den T1-Fragebogen beim letzten Praktikumstermin ausfüllten (67,4%). Es wurden Varianzanalysen mit Messwiederholungsfaktor und T-Tests für verbundene Stichproben durchgeführt. Die höchsten Lernbedarfe zeigten sich bei den „to show how“-Items zu Anamneseerhebung und Diagnosemitteilung (M=4,4). Die T1-T0-Vergleiche zeigten die größten Verbesserungen bei den anamnesespezifischen Items („to know how“: Mittelwertsdifferenz=+1,7, „to show how“:+1,8, p

In Japan, the practice of disclosing the diagnosis of cancer to young people varies between hospitals. Some hospitals respect parent’s wishes and do not to tell young people about their diagnoses whereas others encourage parents to adopt their policy of informing patients. Unfortunately, there is no research about parents’ adjustment to either course of action. This study examines parents’ perspectives regarding this decision. Parents (55) and grand-parents (3) were interviewed about their experience of sharing or not sharing the diagnosis with their children. Analysis of the interviews reveals a complex picture in which parents struggle to balance their emotions, their representation of ‘cancer as death’, their views of their children’s level of understanding as well as the positive and negative effects of disclosure on their children. We suggest that knowledge of parents’ perspectives can be useful to health professionals who support parents living with this dilemma. [ABSTRACT FROM PUBLISHER]