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Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK.

ABSTRACT: OBJECTIVE:To explore communication and interaction between parents and clinicians following neonatal ultrasound (US) and MRI of the brain of babies born preterm. SETTING:This qualitative study was undertaken as part of a larger UK study of neonatal brain imaging. 511 infants were cared for in 14 London neonatal units with MR and cerebral US imaging in a specialist centre. PARTICIPANTS:Parents with infants born at <33?weeks gestation were randomised to receive prognostic information based on either MRI or US findings on their infants at term-corrected age. METHODS:Discussions between parents and clinicians about the MRI or US result were audio recorded. Parents were told about the findings and their baby's predicted outcome. A topic guide ensured essential aspects were covered. Recordings were fully transcribed. Discussion of the scan results, the content and style of the interaction and parental response were analysed qualitatively in 36 recordings using NVivo V.10. OUTCOMES:Key themes and subthemes were identified in the clinician-parent discussions. RESULTS:The overarching theme of 'the communication interface' was identified with three key themes: 'giving information', 'managing the conversation' and 'getting it right' and further subthemes. A range of approaches were used to facilitate parental understanding and engagement. There were differences in the exchanges when information about an abnormal scan was given. The overall structure of the discussions was largely similar, though the language used varied. In all of the discussions, the clinicians talked more than the parents. CONCLUSIONS:The discussions represent a difficult situation in which the challenge is to give and receive complex prognostic information in the context of considerable uncertainty. The study highlights the importance of being able to re-visit specific issues and any potential areas of misunderstanding, of making time to talk to parents appreciating their perspective and level of knowledge. TRIAL REGISTRATION NUMBER:EudraCT 2009-013888-19; Pre-results.

SUBMITTER: Harvey ME

PROVIDER: S-EPMC5051465 | biostudies-literature | 2016 Sep

REPOSITORIES: biostudies-literature

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Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK.

Harvey M E ME Redshaw M E ME

BMJ open 20160926 9

<h4>Objective</h4>To explore communication and interaction between parents and clinicians following neonatal ultrasound (US) and MRI of the brain of babies born preterm.<h4>Setting</h4>This qualitative study was undertaken as part of a larger UK study of neonatal brain imaging. 511 infants were cared for in 14 London neonatal units with MR and cerebral US imaging in a specialist centre.<h4>Participants</h4>Parents with infants born at <33 weeks gestation were randomised to receive prognostic inf ...[more]

PMID: 27678531

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Project description:ImportanceParents of children with cancer value strong therapeutic relationships with oncology clinicians, but not every relationship is positive.ObjectiveTo identify the prevalence of challenging parent-clinician relationships in pediatric oncology and factors associated with these challenges from parent and clinician perspectives.Design, setting, and participantsThis survey was conducted among parents and oncology clinicians of children with cancer within 3 months of diagnosis from November 2015 to July 2019 at Dana-Farber Cancer Institute/Boston Children's Hospital and Texas Children's Hospital. Participants were 400 parents of children with cancer and 80 clinicians (ie, oncology physicians and nurse practitioners). Parents completed surveys about relationships with 1 to 2 primary oncology clinicians; clinicians completed surveys about relationships with parents. Data were analyzed from July 2020 to August 2021.ExposuresAt least 3 previous clinical visits between parent and clinician.Main outcomes and measuresThe Relationship Challenges Scale Parent Version and Clinician Version were developed and used to measure threats to the therapeutic alliance. For the Relationship Challenges Scale-Parent version, relationships were considered challenging if a parent responded to any single question in the 2 lowest of 4 possible categories. For the Relationship Challenges Scale-Clinician version, challenges were considered to be present if a clinician reported responses in the 3 lowest of 6 possible response categories to any question.ResultsAmong 400 parents, there were 298 [74.5%] women, 25 Asian individuals (6.3%), 28 Black individuals (7.0%), 97 Hispanic individuals (24.3%), 223 White individuals (55.8%), and 10 individuals (2.4%) with other race or ethnicity; race and ethnicity data were missing for 17 (4.3%) individuals. Among 80 clinicians, there were 57 (71.3%) women, 38 attending physicians (47.5%), 32 fellows (40.0%), and 10 nurse practitioners (12.5%). Parents identified 676 unique relationships with clinicians, and clinician reports were available for 338 relationships. Among 338 relationships with paired parent and clinician surveys, 81 relationships (24.0%) were considered challenging by parents, 127 relationships (37.6%) were considered challenging by clinicians, and 33 relationships (9.8%) were considered challenging by parent and clinician. Parents with Asian or other race or ethnicity (odds ratio [OR] vs White parents, 3.62; 95% CI, 1.59-8.26) or who had lower educational attainment (OR for ≤high school vs >high school, 3.03; 95% CI, 1.56-5.90) were more likely to experience relationships as challenging. Clinicians used a variety of strategies more frequently in 127 relationships in which they perceived challenges vs 211 relationships in which they did not perceive challenges, such as holding regular family meetings (22 relationships [17.3%] vs 13 relationships [6.2%]; P = .009) and offering extra time and attention (66 relationships [52%] vs 60 relationships [28.4%]; P < .001). However, these strategies were not used with increased frequency when parents experienced relationships as challenging vs when parents did not experience this.Conclusions and relevanceThis survey study found that nearly one-quarter of parents of children with cancer reported challenges in the therapeutic relationship with their oncologist and that clinicians used strategies to improve relationships more frequently when they experienced the relationship as challenging. These findings suggest that new strategies are needed to improve experiences for parents and to help clinicians recognize and attend to parents whose experiences are suboptimal.

Project description:BACKGROUND:It is widely acceptable to involve parents in decision-making about the resuscitation of extremely preterm infants (EPIs) in the gray zone. However, there are different views about where the boundaries of the gray zone should lie. Our aim in this study was to compare the resuscitation thresholds for EPIs between neonatologists in the United Kingdom, Sweden, and the Netherlands. METHODS:We distributed an online survey to consultant neonatologists and neonatal registrars and fellows that included clinical scenarios in which parents requested resuscitation or nonresuscitation. Respondents were asked about the lowest gestational age and/or the worst prognosis at which they would provide resuscitation and the highest gestational age and/or the best prognosis at which they would withhold resuscitation. In additional scenarios, influence of the condition at birth or consideration of available health care resources was assessed. RESULTS:The survey was completed by 162 neonatologists (30% response rate). There was a significant difference between countries; the gray zone for most UK respondents was 23 + 0/7 to 23 + 6/7 or 24 weeks' gestation, compared with 22 + 0/7 to 22 + 6/7 or 23 weeks' gestation in Sweden and 24 + 0/7 to 25 + 6/7 or 26 weeks' gestation in the Netherlands. Resuscitation thresholds were higher if an infant was born in poor condition. There was wide variation in the prognosis that warranted resuscitation or nonresuscitation. Consideration of resource scarcity did not alter responses. CONCLUSIONS:In this survey, we found significant differences in approach to the resuscitation of EPIs, with a spectrum from most proactive (Sweden) to least proactive (Netherlands). Most survey respondents indicated shifts in decision-making that were associated with particular weeks' gestation. Despite the different approaches to decision-making in the 3 countries, there was relatively little difference between countries in neonatologists' prognostic thresholds for resuscitation.

Project description:To assess national expenditure associated with preterm-infant brain MRI and potential impact of reduction per Choosing Wisely campaign 2015 recommendation to "avoid routine screening term-equivalent or discharge brain MRIs in preterm-infants". Cross-sectional U.S. trend data from the Agency for Healthcare Research and Quality (AHRQ), Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) database (2006, 2009, 2012, 2016) was used to estimate overall national expenditure associated with brain MRI among infants with gestational age (GA) ≤36 weeks, and also when classified as 'not indicated' (NI-MRI) i.e., equivalent to routine use without clinical indications and regarded as low-value service (LVS). Associated cost was determined by querying CMS-database for physician-fee-schedules to find the highest global procedure-cost per cycle, then adjusting for inflation. Sensitivity-analyses were conducted to account for additional clinical charges associated with NI-MRI. 3,768 (0.26%) of 1,472,236 preterm-infants had brain MRI across all cycles (inflation-adjusted total $3,690,088). Overall proportion of brain MRIs increased across 2006-2012 from 0.25%-0.33% but decreased in 2016 to 0.16% (P<0.001). Inflation-adjusted overall expenditure by cycle was: 2006, $1,299,130 (95% CI: $987,505, $1,610,755); 2009, $1,194,208 (95% CI: $873,487, $1,516,154); 2012, $931,836 (95% CI: $666,114, $1,197,156); and 2016, $264,648 (95% CI: $172,061, $357,280). Prevalence for NI-MRI in 2006, 2009, 2012 and 2016 was 86% (n = 809), 88% (n = 940), 89% (n = 1028) and 50% (n = 299), respectively; and 70% were in infants 35-36 weeks GA. NI-MRI prevalence was not different over time by payer-type (Medicaid, private), sex or race/ethnicity (white, black, Hispanic); larger hospital size was significantly associated across 2006-2012 but this declined for all sizes in 2016, with most decline in larger hospitals (P for interaction <0.05). NI-MRI expenditure sensitivity-analysis with addition of cycle median total-admission-charge to inflation-adjusted CMS-fee was $1,190,919/$518,343, for 2012/2016 cycles respectively. National MRI prevalence in preterm infants (both overall and LVS) and associated expenditure decreased substantially post recommendation; however, annual savings are modest and unlikely to be >$1.2 million.

Dataset Information

Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK.

Publications

Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK.

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