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1.
JMIR Form Res ; 7: e48581, 2023 Sep 05.
Article in English | MEDLINE | ID: mdl-37669087

ABSTRACT

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.

2.
Int J Geriatr Psychiatry ; 38(7): e5958, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37392094

ABSTRACT

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.


Subject(s)
Dementia , General Practitioners , Female , Humans , Male , Europe , France , Power, Psychological , Dementia/diagnosis , Dementia/therapy
3.
Patient Educ Couns ; 114: 107807, 2023 09.
Article in English | MEDLINE | ID: mdl-37236123

ABSTRACT

OBJECTIVES: To explore students' observations in the hidden curriculum of physicians' breaking bad news interactions and identify dimensions and patterns within them. METHODS: We qualitatively analyzed 156 written narrative descriptions of bad news encounters in the clinics written by senior medical students. RESULTS: 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. CONCLUSIONS: 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. PRACTICE IMPLICATIONS: 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.


Subject(s)
Physician-Patient Relations , Truth Disclosure , Humans , Communication , Curriculum , Narration
4.
J Autism Dev Disord ; 53(10): 4060-4075, 2023 Oct.
Article in English | MEDLINE | ID: mdl-35951204

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Child , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , Parents , Disclosure , Social Stigma
5.
Biopsychosoc Med ; 16(1): 18, 2022 Aug 20.
Article in English | MEDLINE | ID: mdl-35987775

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.

6.
Dementia (London) ; 21(3): 1050-1068, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35134305

ABSTRACT

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.


Subject(s)
Caregivers , Dementia , Dementia/diagnosis , Humans , Morals , Personal Autonomy , Truth Disclosure
7.
Mult Scler ; 28(2): 247-256, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34498517

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Anxiety/diagnosis , Anxiety/etiology , Disclosure , Humans , Multiple Sclerosis/diagnosis , Psychometrics , Surveys and Questionnaires
8.
J Autism Dev Disord ; 52(4): 1821-1840, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34036417

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Autistic Disorder/diagnosis , Autistic Disorder/therapy , Feedback , Humans
9.
Int J Clin Oncol ; 27(1): 245-252, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34599412

ABSTRACT

BACKGROUND: The practice of cancer diagnosis disclosure to children has been changed with the times. The regulations of clinical trials in the 2000s might change the practice in Japan. However, the perspective of this topic among children and adults has not been investigated in detail. METHODS: We studied changes in the practice of information sharing with children with cancer at pediatric cancer centers and the perspective of cancer diagnosis disclosure to children among school children, their parents and pediatric oncologists in the last 20 years by comparing the results of questionnaire surveys conducted in 1998, 2008 and 2018. RESULTS: This study revealed that the performing rate has increased with the times, but the institutions actively performing for children aged 7-9 years were 36.4% even in the 2018 survey. More than 70% of children wished diagnosis disclosure if they suffer from cancer in the series of surveys, while the ratio of parents who tell cancer diagnosis to their children hovered at 34.5 to 53.7% (p < 0.001 in all surveys). The ratio of pediatric oncologists having the policy to perform diagnosis disclosure proactively increased from 9.3 to 60.0%, while that of parents having the same policy stayed at 5.3% even in 2018. CONCLUSIONS: The performing rate of information sharing with children with cancer was significantly changed in the last 20 years. The opinion gaps were observed between parents and children and between parents and pediatric oncologists.


Subject(s)
Neoplasms , Oncologists , Adult , Child , Humans , Japan , Neoplasms/diagnosis , Surveys and Questionnaires , Truth Disclosure
10.
Am J Hosp Palliat Care ; 39(7): 779-784, 2022 Jul.
Article in English | MEDLINE | ID: mdl-34427118

ABSTRACT

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.


Subject(s)
Disclosure , Neoplasms , Caregivers , Cross-Sectional Studies , Egypt , Humans , Male , Neoplasms/diagnosis , Truth Disclosure
11.
Cureus ; 13(11): e19525, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34934547

ABSTRACT

Objective To explore the preference among the Saudi population regarding breaking bad news (BBN) for the participant cases and their relatives and to determine the associated sociodemographic factors. Method A cross-sectional study was conducted among patients and companions attending inpatient and outpatient clinics of a tertiary care hospital in Western Saudi Arabia from 15 Jan to 30 May 2015. A six-item scale was designed to assess preference regarding diagnosis disclosure in three hypothetical conditions including chronic disease, incurable disease, and cancer if the participant or a close relative is concerned, separately. A BBN preference score (BBN-PS) was computed (range=0-6), with a higher score indicating a greater preference to disclose the diagnosis. Eventual motivations for diagnosis disclosure or withholding were explored. Result Five hundred participants were included; 56.0% were females and 55.0% were aged between 18 and 25 years. Preference to be informed with one's diagnosis varied between 81.8% for incurable disease and 94.2% for chronic disease with complications. Preference to inform a relative with their diagnosis ranged between 69.0% for incurable disease and 86.8% for chronic disease with complications. Preference for diagnosis withholding was lower among participants of the younger age category (38.2% vs 51.2% or higher, p=0.002), with higher education (42.4% vs 60.8%, p=0.001), and working or studying in the medical field (39.7% vs 51.9%, p=0.006), compared to their counterparts, respectively. The most common motivations toward diagnosis disclosure preference were to enable the concerned person participate in their therapeutic decision (36.4%) and cope with the disease (27.4%); while preference toward diagnosis withholding was most commonly motivated by apprehensions regarding the psychological and social impact of the diagnosis (61.6%). Conclusion A non-negligible proportion of individuals prefer concealing a diagnosis of cancer or incurable disease to a relative, with an inter-generational disparity showing a shift to diagnosis disclosure in the young generations. There is an unmet need for evidence-based protocols for BBN based on a comprehensive assessment of patients' expectations and needs, considering their cultural and religious values as well as the specific sociodemographic and clinical factors.

12.
BMC Cancer ; 21(1): 739, 2021 Jun 27.
Article in English | MEDLINE | ID: mdl-34176477

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 < 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.


Subject(s)
Breast Neoplasms/diagnosis , Adult , Aged , Aged, 80 and over , Breast Neoplasms/mortality , Breast Neoplasms/pathology , Female , Follow-Up Studies , Humans , Middle Aged , Prognosis , Retrospective Studies , Survival Analysis
13.
J Gerontol B Psychol Sci Soc Sci ; 76(4): 745-755, 2021 03 14.
Article in English | MEDLINE | ID: mdl-31587074

ABSTRACT

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.


Subject(s)
Alcohol Drinking , Dementia , Healthy Aging/psychology , Neuropsychological Tests , Smoking Cessation , Smoking , Truth Disclosure , Aged , Alcohol Drinking/epidemiology , Alcohol Drinking/psychology , Dementia/diagnosis , Dementia/psychology , Demography , Female , Health Behavior , Humans , Life Style , Male , Patient Access to Records/psychology , Risk Reduction Behavior , Smoking/epidemiology , Smoking/psychology , Smoking Cessation/psychology , Smoking Cessation/statistics & numerical data , Socioeconomic Factors , United States/epidemiology
14.
BMC Cancer ; 20(1): 618, 2020 Jul 02.
Article in English | MEDLINE | ID: mdl-32615952

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 .


Subject(s)
Disclosure , Neoplasms/diagnosis , Quality of Life , Humans , Neoplasms/psychology
15.
Psychooncology ; 29(5): 878-885, 2020 05.
Article in English | MEDLINE | ID: mdl-32266740

ABSTRACT

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.


Subject(s)
Awareness , Early Detection of Cancer/psychology , Lung Neoplasms/mortality , Patient Acceptance of Health Care/psychology , Adult , Aged , Attitude to Health , Early Detection of Cancer/statistics & numerical data , Female , Humans , Lung Neoplasms/pathology , Lung Neoplasms/psychology , Male , Middle Aged , Patient Outcome Assessment , Proportional Hazards Models , Retrospective Studies , Survival Rate , Time Factors
16.
Am J Med Genet C Semin Med Genet ; 184(2): 404-413, 2020 06.
Article in English | MEDLINE | ID: mdl-32181570

ABSTRACT

The most common sex chromosome aneuploidies (SCA) (47, XXY; 47, XYY; 47, XXX) frequently result in a milder phenotype than autosomal aneuploidies. Nevertheless, these conditions are highly variable and more symptomatic phenotypes may require significant clinical involvement, including specialty care. While historically most individuals with mild phenotypes remained undiagnosed during their lifetime, the increasing use of genetic testing in clinical care has increased the prenatal and postnatal diagnosis of SCAs. These genetic tests are frequently ordered by nongenetic providers who are also responsible for delivering the diagnosis. We surveyed parents of children (n = 308) to evaluate their experience of receiving a diagnosis and their support needs. The majority (73.3%) received the diagnosis from a nongenetic medical provider. Following a prenatal diagnosis parents reported experiencing depression, anxiety, and less optimism than those receiving a postnatal diagnosis. Few parents reported receiving materials explaining their child's condition that they found to be up-to-date, accurate, and unbiased. The frequently negative reported experiences of parents at time of diagnosis suggests more educational opportunities should be provided for nongenetic providers in order to become more informed about these conditions and communicate the diagnosis in a way parents experience as supportive.


Subject(s)
Chromosome Disorders/epidemiology , Prenatal Diagnosis/psychology , Sex Chromosome Aberrations , Sex Chromosomes/genetics , Aneuploidy , Attitude , Child , Child, Preschool , Chromosome Disorders/diagnosis , Chromosome Disorders/pathology , Chromosome Disorders/psychology , Female , Genetic Testing , Humans , Male , Parents/psychology , Pregnancy , Sex Chromosomes/pathology , XYY Karyotype
17.
J Genet Couns ; 29(5): 828-837, 2020 10.
Article in English | MEDLINE | ID: mdl-31903687

ABSTRACT

Vascular Ehlers-Danlos syndrome (vEDS) is a rare inherited disorder leading to arterial, digestive, and uterine complications due to pathogenic COL3A1 variants. Identification of causal variants allows family screening, provided that relatives have previously been informed, according to a 2013 French Decree. The aims of our study were to assess the communication of genetic information to at-risk relatives, the impact of diagnosis disclosure and to highlight a possible link between the experience of vEDS patients and ability to communicate about genetic information. A total of n = 51 vEDS adult probands answered a questionnaire during a clinical visit. Communication to relatives was considered effective if the proband gave information to some or all first-degree relatives and considered easily achieved if it was disclosed to all relatives less than a month after the diagnosis and without difficulty. Personal and family vEDS experiences of probands were also assessed. Effective communication of information to relatives was remarkably high (98%). Siblings were the most frequently informed relatives (82%). Women informed their at-risk relatives of genetic family screening faster (p = .006) and easier (p = .004) than men. There was no difference in the disclosure of information to relatives before and after 2013 in our multidisciplinary clinic. Regarding the lived experience of vEDS patients, they felt anxious (78%) at diagnosis disclosure but also considered this diagnosis as an opportunity to start a medical follow-up (82%) putting an end to diagnosis delay. Our findings highlight for the first time that the ability to easily inform at-risk first-degree relatives is related to the relief felt during vEDS-positive diagnosis disclosure (p = .04). In order to improve the communication of genetic information to relatives, we believe that psychological support should systematically be part of the multidisciplinary monitoring, just as medical follow-up and genetic counseling.


Subject(s)
Communication , Ehlers-Danlos Syndrome/genetics , Family , Genetic Predisposition to Disease , Referral and Consultation , Adult , Collagen Type III/genetics , Female , France , Genetic Testing , Humans , Interdisciplinary Studies , Male , Middle Aged , Pilot Projects
18.
Healthcare (Basel) ; 7(4)2019 Dec 14.
Article in English | MEDLINE | ID: mdl-31847309

ABSTRACT

Informed consent and patient autonomy rights require an optimal cancer diagnosis disclosure strategy to be used to update the patients and caregivers with the bad news. However, a cancer diagnosis disclosure may arouse anxiety and distress which increase patients' and caregivers' psychological burden. This study aims to explore the influence of cancer diagnosis disclosure on the quality of life in elderly cancer patients and their caregivers, and to introduce an effective way to disclose cancer diagnosis. A total of 120 participants were randomly selected in the study. The Medical Coping Modes Questionnaire was used to select informed person. The SPIKES was used to guide the disclosure procedures. The informed patients' or caregivers' quality of life were evaluated by the Generic Quality of Life Inventory-74 or Caregiver Quality of Life Scale before and after the cancer diagnosis disclosure and at the discharge time. After cancer diagnosis disclosure, no significant change was found on the quality of life of the informed person. With multiple psychological interventions implemented, a significant increase was noticed on the quality of life of the informed person. Applying the cancer diagnosis disclosure strategies and psychological intervention were essential to improve cancer patients' and caregivers' quality of life.

19.
Clin J Oncol Nurs ; 23(6): 619-626, 2019 12 01.
Article in English | MEDLINE | ID: mdl-31730594

ABSTRACT

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.


Subject(s)
Breast Neoplasms/nursing , Disclosure , Nurse-Patient Relations , Patient Navigation , Breast Neoplasms/diagnosis , Female , Humans , Oncology Nursing , Patient Preference
20.
Psychooncology ; 28(12): 2415-2421, 2019 12.
Article in English | MEDLINE | ID: mdl-31702852

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Neoplasms/diagnosis , Nurse-Patient Relations , Oncology Nursing , Truth Disclosure , Adult , China , Female , Humans , Middle Aged , Qualitative Research , Young Adult
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