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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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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:IntroductionBetween 2015 and 2018, there were over 40 000 opioid-related overdose events and 4551 deaths among residents in British Columbia (BC). During this time the province mobilised a variety of policy levers to encourage physicians to expand access to opioid agonist treatment and the College of Physicians and Surgeons of British Columbia (CPSBC) released a practice standard establishing legally enforceable minimum thresholds of professional behaviour in the hopes of curtailing overdose events. Our goal is to conduct a comprehensive investigation of the intended and unintended consequences of these policy changes. Specifically, we aim to understand the effects of these measures on physician prescribing behaviours, identify physician characteristics associated with uptake of the new measures, and measure the effects of the policy changes on patients' access to quality primary care.Methods and analysisThis is a population-level, retrospective cohort study of all BC primary care physicians who prescribed any opioid medication for opioid-use disorder or chronic non-cancer pain during the study period, and their patients. The study period is 1 January 2013-31 December 2018, with a 1-year wash-in period (1 January 2012-31 December 2012) to exclude patients who initiated long-term opioid treatment prior to our study period or whose pain type (ie, 'chronic non-cancer', 'acute', 'cancer or palliative', or 'other') cannot be confirmed. The project combines five administrative health datasets under the authority of the BC Ministry of Health, with the CPSBC's Physician Registry, BC Cancer Agency's Cancer Registry and Vital Statistics' Mortality data. We will create measures of prescribing concordance, access, continuity, and comprehensiveness to assess primary care delivery and quality at both the physician and patient level. We will use generalised estimating equations, interrupted time series, mixed effects models, and funnel plots to identify factors related to changes in prescribing and evaluate the impact of the changes to prescribing policies. Results will be reported using appropriate Enhancing the QUAlity and Transparency Of health Research guidelines (eg, STrengthening the Reporting of OBservational studies in Epidemiology).Ethics and disseminationThis study has been approved by McGill University's Institutional Review Board (#A11-M55-19A), and the University of British Columbia's Research Ethics Board (#H19-03537). We will disseminate results via a combination of open access peer-reviewed journal publications, conferences, lay summaries and OpEds.

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

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