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Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology.

ABSTRACT: BACKGROUND:The majority of patients desire all available prognostic information, but some physicians hesitate to discuss prognosis. The objective of the current study was to examine outcomes of prognostic disclosure among the parents of children with cancer. METHODS:The authors surveyed 353 parents of children with newly diagnosed cancer at 2 tertiary cancer centers, and each child's oncologist. Using multivariable logistic regression, the authors assessed associations between parental report of elements of prognosis discussions with the oncologist (quality of information/communication and prognostic disclosure) and potential consequences of these discussions (trust, hope, peace of mind, prognostic understanding, depression, and anxiety). Analyses were stratified by oncologist-reported prognosis. RESULTS:Prognostic disclosure was not found to be associated with increased parental anxiety, depression, or decreased hope. Among the parents of children with less favorable prognoses (<75% chance of cure), the receipt of high-quality information from the oncologist was associated with greater peace of mind (odds ratio [OR], 5.23; 95% confidence interval [95% CI], 1.81-15.16) and communication-related hope (OR, 2.54; 95% CI, 1.00-6.40). High-quality oncologist communication style was associated with greater trust in the physician (OR, 2.45; 95% CI, 1.09-5.48) and hope (OR, 3.01; 95% CI, 1.26-7.19). Accurate prognostic understanding was less common among the parents of children with less favorable prognoses (OR, 0.39; 95% CI, 0.17-0.88). Receipt of high-quality information, high-quality communication, and prognostic disclosure were not found to be significantly associated with more accurate prognostic understanding. CONCLUSIONS:The results of the current study demonstrate no evidence that disclosure is associated with anxiety, depression, or decreased hope. Communication processes may increase peace of mind, trust, and hope. It remains unclear how best to enhance prognostic understanding. Cancer 2018;124:1232-41. © 2017 American Cancer Society.

SUBMITTER: Marron JM

PROVIDER: S-EPMC5839950 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology.

Marron Jonathan M JM Cronin Angel M AM Kang Tammy I TI Mack Jennifer W JW

Cancer 20171226 6

<h4>Background</h4>The majority of patients desire all available prognostic information, but some physicians hesitate to discuss prognosis. The objective of the current study was to examine outcomes of prognostic disclosure among the parents of children with cancer.<h4>Methods</h4>The authors surveyed 353 parents of children with newly diagnosed cancer at 2 tertiary cancer centers, and each child's oncologist. Using multivariable logistic regression, the authors assessed associations between par ...[more]

PMID: 29278434

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Project description:IntroductionScotland is the first country to carry out a national implementation of minimum unit pricing (MUP) for alcohol. MUP aims to reduce alcohol-related harms, which are high in Scotland compared with Western Europe, and to improve health equalities. MUP is a minimum retail price per unit of alcohol. That approach targets high-risk alcohol users. This work is key to a wider evaluation that will determine whether MUP continues. There are three study components.Methods and analysisComponent 1 sampled an estimated 2800 interviewees at a baseline and each of two follow-ups from four Emergency Departments in Scotland and Northern England. Research nurses administered a standardised survey to assess alcohol consumption and the proportion of attendances that were alcohol-related.Component 2 covered six Sexual Health Clinics with similar timings and country allocation. A self-completion survey gathered information on potential unintended effects of MUP on alcohol source and drug use.Using a natural experiment design and repeated cross-sectional audit, difference between Scotland (intervention) and North England (control) will be tested for outcomes using regression adjusting for differences at baseline. Differential impacts by age, gender and socioeconomic position will be investigated.Component 3 used focus groups with young people and heavy drinkers and interviews with stakeholders before and after MUP implementation. The focus groups will allow exploration of attitudes, experiences and behaviours and the potential mechanisms by which impacts arise. The interviews will help characterise the implementation process.Ethics and disseminationStudy components 1 and 2 have been ethically approved by the NHS, and component 3 by the University of Stirling. Dissemination plans include peer-reviewed journal articles, presentations, policy maker briefings and, in view of high public interest and the high political profile of this flagship policy, communication with the public via media engagement and plain language summaries.Trial registration numberISRCTN16039407; Pre-results.

Project description:BackgroundCommunication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication.MethodsThe authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology.ResultsThe authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers.ConclusionsNurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology.Lay summaryClinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.

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Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology.

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Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology.

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