Racial disparities in cancer genetic counseling encounters: study protocol for investigating patient-genetic counselor communication in the naturalistic clinical setting using a convergent mixed methods design.

BACKGROUND: Despite decades of effort to reduce racial cancer disparities, Black people continue to die at higher rates from cancer than any other U.S. racial group. Because prevention is a key to the cost-effective and long-term control of cancer, the potential for cancer genetic counseling to play a central role in reducing racial cancer disparities is high. However, the benefits of genetic counseling are not equitable across race. Only 2% of genetic counselors self-identify as Black/African American, so most genetic counseling encounters with Black patients are racially discordant. Patients in racially discordant medical interactions tend to have poorer quality patient-provider communication and receive suboptimal clinical recommendations. One major factor that contributes to these healthcare disparities is racial bias. Drawing on findings from prior research, we hypothesize that genetic counselor providers' implicit racial prejudice will be associated negatively with the quality of patient-provider communication, while providers' explicit negative racial stereotypes will be associated negatively with the comprehensiveness of clinical discussions of cancer risk and genetic testing for Black (vs. White) patients. METHODS: Using a convergent mixed methods research design, we will collect data from at least 15 genetic counseling providers, from two different institutions, and their 220 patients (approximately equal number of Black and White patients per provider) whose appointments are for a hereditary cancer condition. The data sources will include two provider surveys, two patient surveys, video- and/or audio-recordings of genetic counseling encounters, and medical chart reviews. The recorded cancer genetic counseling in-person and telehealth encounters will be analyzed both qualitatively and quantitatively to assess the quality of patient-provider communication and the comprehensiveness of clinical discussion. Those data will be linked to pre- and post-encounter survey data and data from medical chart reviews to test our hypotheses. DISCUSSION: Findings from this multi-site study will highlight specific aspects of cancer genetic counseling encounters (patient-provider communication and clinical recommendations) that are directly associated with patient-centered outcomes (e.g., satisfaction, trust, genetic testing completion). Patient-provider communication and clinical recommendations are modifiable factors that can be integrated into current genetic counseling training curricula and thus can have immediate impact on genetic counseling training and practice.

Structure and integration of specialty palliative care in three NCI-designated cancer centers: a mixed methods case study.

INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Preparing Patients to Communicate with Their Doctors About Clinical Trials as a Treatment Option: Impact of a Novel Video Intervention for Patients with a Blood Cancer and Their Caregivers.

Cancer clinical trials (CCTs) are imperative for advancing cancer treatment and providing treatment options for patients; however, many barriers exist to offering and enrolling interested and eligible patients. It is crucial to equip patients and caregivers with communication skills that help them initiate and navigate conversations about the option of receiving treatment within a CCT. The aim was to assess the acceptability and impact of a novel video training for patients and caregivers that models strategies for patient-provider communication using the PACES method of healthcare communication and provides information about CCTs. The three-module training was implemented among blood cancer patients and caregivers. Using a single-arm pre-post study design, self-report surveys assessed changes in knowledge, confidence in using the PACES method, and perceived importance of, confidence in, and behavioral intention related to talking with doctors about CCTs. The Patient Report of Communication Behavior (PRCB) scale was administered. Among 192 participants, post-intervention knowledge gains were evident (p < 0.001). Confidence, importance, and likelihood to communicate about CCTs and confidence about using PACES also increased (p < 0.001); females who had never previously spoken to a provider about CCTs demonstrated greater impact (p = 0.045) than other genders. PRCB mean scores increased among patients 65+ who had never spoken to a provider about CCTs, with greater change than patients <65 (p = 0.001). This educational intervention for patients and caregivers increased knowledge about CCTs, skills in communicating with doctors about care and CCTs, and readiness to initiate conversations about CCTs as a potential treatment option.

Nonverbal Synchrony: An Indicator of Clinical Communication Quality in Racially-Concordant and Racially-Discordant Oncology Interactions.

OBJECTIVES: The aim of this cross-sectional study was to apply a novel software to measure and compare levels of nonverbal synchrony, as a potential indicator of communication quality, in video recordings of racially-concordant and racially-discordant oncology interactions. Predictions include that the levels of nonverbal synchrony will be greater during racially-concordant interactions than racially-discordant interactions, and that levels of nonverbal synchrony will be associated with traditional measures of communication quality in both racially-concordant and racially-discordant interactions. DESIGN: This is a secondary observational analysis of video-recorded oncology treatment discussions collected from 2 previous studies. SETTING: Two National Cancer Institute-designated Comprehensive Cancer Centers and another large urban cancer center. PARTICIPANTS: Participants from Study 1 include 161 White patients with cancer and 11 White medical oncologists. Participants from Study 2 include 66 Black/African-American patients with cancer and 17 non-Black medical oncologists. In both studies inclusion criteria for patients was a recent cancer diagnosis; in Study 2 inclusion criteria was identifying as Black/African American. MAIN OUTCOME MEASURES: Nonverbal synchrony and communication quality. RESULTS: Greater levels of nonverbal synchrony were observed in racially-discordant interactions than in racially-concordant interactions. Levels of nonverbal synchrony were associated with indicators of communication quality, and these associations were more consistently found in racially-discordant interactions. CONCLUSION: This study advances clinical communication and disparities research by successfully applying a novel approach capturing the unconscious nature of communication, and revealing differences in communication in racially-discordant and racially-concordant oncology interactions. This study highlights the need for further exploration of nonverbal aspects relevant to patient-physician interactions.

Examining the dynamic nature of nonverbal communication between Black patients with cancer and their oncologists.

BACKGROUND: Although communication quality is associated with patient outcomes, racial disparities in communication exist, disproportionately burdening Black patients. However, most communication research focuses on verbal behaviors in predominantly White patient populations. We used a newly developed and theory-guided network analysis that examines the dynamic interplay and behavioral convergence and divergence between Black patients with cancer and their oncologists during cancer treatment discussions. METHODS: We applied a nonverbal behavioral coding system to thin slices of video recordings of Black patients and their oncologists discussing treatment. We then estimated 3 networks: 1) a temporal network to determine whether a nonverbal behavior predicts another nonverbal behavior at the next time point in an interaction, and how much each nonverbal behavior influences other nonverbal behaviors and is influenced by other nonverbal behaviors; 2) a contemporaneous network to determine whether a nonverbal behavior co-occurs with other nonverbal behaviors at the same time point in an interaction; and 3) a between-dyads network to examine the covariation between nonverbal behaviors across all dyads. RESULTS: Black patients (n = 74) and their non-Black physicians (n = 15) showed a mix of convergence and divergence in their nonverbal behaviors at the same points in time, from one time point to the next, and across dyads. Across analyses, convergence was most likely to occur when physicians matched their behaviors to their patients; especially with smiling, gaze, leaning, and laughter behaviors. CONCLUSION: Our findings reveal patterns of modifiable behaviors that can potentially inform interventions to reduce disparities in clinical communication and, in turn, treatment and mortality disparities.

Developing Machine Learning Models for Behavioral Coding.

OBJECTIVE: The goal of this research is to develop a machine learning supervised classification model to automatically code clinical encounter transcripts using a behavioral code scheme. METHODS: We first evaluated the efficacy of eight state-of-the-art machine learning classification models to recognize patient-provider communication behaviors operationalized by the motivational interviewing framework. Data were collected during the course of a single weight loss intervention session with 37 African American adolescents and their caregivers. We then tested the transferability of the model to a novel treatment context, 80 patient-provider interactions during routine human immunodeficiency virus (HIV) clinic visits. RESULTS: Of the eight models tested, the support vector machine model demonstrated the best performance, achieving a .680 F1-score (a function of model precision and recall) in adolescent and .639 in caregiver sessions. Adding semantic and contextual features improved accuracy with 75.1% of utterances in adolescent and 73.8% in caregiver sessions correctly coded. With no modification, the model correctly classified 72.0% of patient-provider utterances in HIV clinical encounters with reliability comparable to human coders (k = .639). CONCLUSIONS: The development of a validated approach for automatic behavioral coding offers an efficient alternative to traditional, resource-intensive methods with the potential to dramatically accelerate the pace of outcomes-oriented behavioral research. The knowledge gained from computer-driven behavioral research can inform clinical practice by providing clinicians with empirically supported communication strategies to tailor their conversations with patients. Lastly, automatic behavioral coding is a critical first step toward fully automated eHealth/mHealth (electronic/mobile Health) behavioral interventions.

Partnering around cancer clinical trials (PACCT): study protocol for a randomized trial of a patient and physician communication intervention to increase minority accrual to prostate cancer clinical trials.

BACKGROUND: Cancer clinical trials are essential for testing new treatments and represent state-of-the-art cancer treatment, but only a small percentage of patients ever enroll in a trial. Under-enrollment is an even greater problem among minorities, particularly African Americans, representing a racial/ethnic disparity in cancer care. One understudied cause is patient-physician communication, which is often of poor quality during clinical interactions between African-American patients and non-African-American physicians. Partnering Around Cancer Clinical Trials (PACCT) involves a transdisciplinary theoretical model proposing that patient and physician individual attitudes and beliefs and their interpersonal communication during racially discordant clinical interactions influence outcomes related to patients' decisions to participate in a trial. The overall goal of the study is to test a multilevel intervention designed to increase rates at which African-American and White men with prostate cancer make an informed decision to participate in a clinical trial. METHODS/DESIGN: Data collection will occur at two NCI-designated comprehensive cancer centers. Participants include physicians who treat men with prostate cancer and their African-American and White patients who are potentially eligible for a clinical trial. The study uses two distinct research designs to evaluate the effects of two behavioral interventions, one focused on patients and the other on physicians. The primary goal is to increase the number of patients who decide to enroll in a trial; secondary goals include increasing rates of physician trial offers, improving the quality of patient-physician communication during video recorded clinical interactions in which trials may be discussed, improving patients' understanding of trials offered, and increasing the number of patients who actually enroll. Aims are to 1) determine the independent and combined effects of the two interventions on outcomes; 2) compare the effects of the interventions on African-American versus White men; and 3) examine the extent to which patient-physician communication mediates the effect of the interventions on the outcomes. DISCUSSION: PACCT has the potential to identify ways to increase clinical trial rates in a diverse patient population. The research can also improve access to high quality clinical care for African American men bearing the disproportionate burden of disparities in prostate and other cancers. TRIAL REGISTRATION: Clinical Trials.gov registration number: NCT02906241 (September 8, 2016).

Active surveillance for low-risk localized prostate cancer: what do men and their partners think?

BACKGROUND: Active surveillance (AS) is recognized as a reasonable treatment option for low-risk localized prostate cancer (LPC) but continues to be chosen by a minority of men. To date, limited data are available regarding reasons why men with low-risk LPC adopt AS. PURPOSE: The aim of this study is to better understand conceptualizations, experiences and reasons why men with low-risk LPC and their partners adopt AS. METHODS: We conducted five focus groups (FGs), three among men with low-risk LPC who had chosen AS and two with their partners. FGs were video/audio recorded, transcribed and analysed using qualitative thematic analysis. RESULTS: A total of 12 men and 6 partners (all women) participated in FG discussions. The most common reasons for choosing AS were seeing the LPC as 'small' or 'low grade' without need for immediate treatment and trusting their physician's AS recommendation. The most common concerns about AS were perceived unreliability of prostate specific antigen, pain associated with prostate biopsies and potential cancer progression. Partners saw themselves as very involved in their husbands' treatment decision-making process, more than men acknowledged them to be. Multiple terms including 'watchful waiting' were used interchangeably with AS. There appeared to be a lack of understanding that AS is not simply 'doing nothing' but is actually a recognized management option for low-risk LPC. CONCLUSIONS: Emphasizing the low risk of a man's LPC and enhancing physician trust may increase acceptability of AS. Standardizing terminology and presenting AS as a reasonable and recognized management option may also help increase its adoption.

Discussing prognosis and treatment goals with patients with advanced cancer: A qualitative analysis of oncologists' language.

BACKGROUND: The National Academy of Medicine recommends that cancer patients be knowledgeable of their prognosis to enable them to make informed treatment decisions, but research suggests few patients receive this information. OBJECTIVE: This qualitative study describes oncologists' language during discussions of prognosis and treatment goals in clinical interactions with African American patients diagnosed with cancer. DESIGN: We analysed transcripts from video recordings of clinical interactions between patients with Stage III or IV cancer (n=26) and their oncologists (n=9). In-depth discourse analysis was conducted to describe and interpret oncologists' communication behaviours and common linguistic features in the interactions. SETTING AND PARTICIPANTS: Data were from a larger study of patient-provider communication between African Americans and oncologists at two cancer hospitals in Detroit. RESULTS: Prognosis was discussed in 73.1% (n=19) of the interactions; treatment goals were discussed in 92.3% (n=24). However, analysis revealed that oncologists' description of prognosis was vague (e.g. "prognosis is a bit worse in your case") and rarely included a survival estimate. Oncologists often used ambiguous terminology, including euphemisms and jargon, and emphasized uncertainty (e.g. "lesions are suspicious for the disease"). Conversation about prognosis was frequently brief, moving quickly to the urgency and details of treatment. DISCUSSION: This study demonstrates how oncologists' language may obscure discussion of prognosis and treatment goals. The identified behaviours may lead to missed opportunities in eliciting and discussing patients' knowledge about and preferences for their care. Patient-, provider- and system-oriented interventions are needed to improve clinical communication, especially among minority patients with advanced cancer.

Communication Among Melanoma Family Members.

Interventions to improve communication among family members may facilitate information flow about familial risk and preventive health behaviors. This is a secondary analysis of the effects of an interactive website intervention aimed at increasing communication frequency and agreement about health risk among melanoma families. Participants were family units, consisting of one family member with melanoma identified from a previous research study (the Case) and an additional first degree relative and a parent of a child 0-17. Family triads were randomized to receive access to the website intervention or to serve as control families. Family communication frequency and agreement about melanoma prevention behaviors and beliefs were measured at baseline and again at 1 year post randomization. Intervention participants of all three types significantly increased the frequency of communication to their first degree relatives (Parents, siblings, children; range = 14-18 percentage points; all p < .05). At baseline, approximately two-thirds of all three family members talked with at least some member of the family about cancer risk. Agreement between Cases and First Degree Relatives and between Cases and Parents increased from pre to post intervention in the intervention participants compared to the control participants (p < .05). These findings provide support for interventions to improve family communication about cancer risk.

Physician Racial Bias and Word Use during Racially Discordant Medical Interactions.

Physician racial bias can negatively affect Black patients' reactions to racially discordant medical interactions, suggesting that racial bias is manifested in physicians' communication with their Black patients. However, little is known about how physician racial bias actually influences their communication during these interactions. This study investigated how non-Black physicians' racial bias is related to their word use during medical interactions with Black patients. One hundred and seventeen video-recorded racially discordant medical interactions from a larger study were transcribed and analyzed using Linguistic Inquiry and Word Count (LIWC) software. Physicians with higher levels of implicit racial bias used first-person plural pronouns and anxiety-related words more frequently than physicians with lower levels of implicit bias. There was also a trend for physicians with higher levels of explicit racial bias to use first-person singular pronouns more frequently than physicians with lower levels of explicit bias. These findings suggest that non-Black physicians with higher levels of implicit racial bias may tend to use more words that reflect social dominance (i.e., first-person plural pronouns) and anxiety when interacting with Black patients.

Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients With Cancer.

BACKGROUND: Clinical trials that study cancer are essential for testing the safety and effectiveness of promising treatments, but most people with cancer never enroll in a clinical trial - a challenge exemplified in racial and ethnic minorities. Underenrollment of racial and ethnic minorities reduces the generalizability of research findings and represents a disparity in access to high-quality health care. METHODS: Using a multilevel model as a framework, potential barriers to trial enrollment of racial and ethnic minorities were identified at system, individual, and interpersonal levels. Exactly how each level directly or indirectly contributes to doctor-patient communication was also reviewed. Selected examples of implemented interventions are included to help address these barriers. We then propose our own evidence-based intervention addressing barriers at the individual and interpersonal levels. RESULTS: Barriers to enrolling a diverse population of patients in clinical trials are complex and multilevel. Interventions focused at each level have been relatively successful, but multilevel interventions have the greatest potential for success. CONCLUSION: To increase the enrollment of racial and ethnic minorities in clinical trials, future interventions should address barriers at multiple levels.

The effects of racial attitudes on affect and engagement in racially discordant medical interactions between non-Black physicians and Black patients.

The association between physicians' and patients' racial attitudes and poorer patient-physician communication in racially discordant medical interactions is well-documented. However, it is unclear how physicians' and patients' racial attitudes independently and jointly affect their behaviors during these interactions. In a secondary analysis of video-recorded medical interactions between non-Black physicians and Black patients, we examined how physicians' explicit and implicit racial bias and patients' perceived past discrimination influenced their own as well as one another's affect and level of engagement. Affect and engagement were assessed with a "thin slice" method. For physicians, the major findings were significant three-way interactions: physicians' affect and engagement were influenced by their implicit and explicit racial bias (i.e., aversive racism), but only when they interacted with patients who reported any incidence of prior discrimination. In contrast, patients' affect was influenced only by perceived discrimination. Theoretical and clinical implications of current findings are discussed.

A disparity of words: racial differences in oncologist-patient communication about clinical trials.

BACKGROUND: African Americans are consistently underrepresented in cancer clinical trials. Minority under-enrolment may be, in part, due to differences in the way clinical trials are discussed in oncology visits with African American vs. White patients. OBJECTIVE: To investigate differences in oncologist-patient communication during offers to participate in clinical trials in oncology visits with African American and White patients. METHODS: From an archive of video-recorded oncology visits, we selected all visits with African American patients that included a trial offer (n = 11) and a matched sample of visits with demographically/medically comparable White patients (n = 11). Using mixed qualitative-quantitative methods, we assessed differences by patient race in (i) word count of entire visits and (ii) frequency of mentions and word count of discussions of clinical trials and key elements of consent. RESULTS: Visits with African American patients, compared to visits with White patients, were shorter overall and included fewer mentions of and less discussion of clinical trials. Also, visits with African Americans included less discussion of the purpose and risks of trials offered, but more discussion of voluntary participation. DISCUSSION AND CONCLUSIONS: African American patients may make decisions about clinical trial participation based on less discussion with oncologists than do White patients. Possible explanations include a less active communication style of African Americans in medical visits, oncologists' concerns about patient mistrust, and/or oncologist racial bias. Findings suggest oncologists should pay more conscious attention to developing the topic of clinical trials with African American patients, particularly purpose and risks.

Patient- and Family-Centered Care as an approach to reducing disparities in asthma outcomes in urban African American children: A review of the literature.

We thank Cathy Eames (Director, Library Services, Detroit Medical Center) for valuable input and assistance with the search strategy. Funding for this research was supported by a grant from Children's Hospital of Michigan Research Foundation (Principal Investigator: Terrance L. Albrecht, Ph.D.). BACKGROUND: Patient- and family-centered care (PFCC) has the potential to address disparities in access and quality of healthcare for African American pediatric asthma patients by accommodating and responding to the individual needs of patients and families. STUDY OBJECTIVES: To identify and evaluate research on the impact of family-provider interventions that reflect elements of PFCC on reducing disparities in the provision, access, quality, and use of healthcare services for African American pediatric asthma patients. METHODS: Electronic searches were conducted using PubMed, CINAHL, and Psyclnfo databases. Inclusion criteria were peer-reviewed, English-language articles on family-provider interventions that (a) reflected one or more elements of PFCC and (b) addressed healthcare disparities in urban African American pediatric asthma patients (≤18years). RESULTS: Thirteen interventions or programs were identified and reviewed. Designs included randomized clinical trials, controlled clinical trials, pre- and post-interventions, and program evaluations. CONCLUSIONS: Few interventions were identified as explicitly providing PFCC in a pediatric asthma context, possibly because of a lack of consensus on what constitutes PFCC in practice. Some studies have demonstrated that PFCC improves satisfaction and communication during clinical interactions. More empirical research is needed to understand whether PFCC interventions reduce care disparities and improve the provision, access, and quality of asthma healthcare for urban African American children. ELECTRONIC DATABASES USED: PubMed, CINAHL, and Psyclnfo ABBREVIATIONS: AA-African American: CCT-Controlled clinical trial; ED-Emergency Department; ETS-Environmental tobacco smoke; FCC- Family Centered Care; PFCC-Patient and Family Centered Care; RCT- Randomized, controlled trial.

Language Analysis as a Window to Bereaved Parents' Emotions During a Parent-Physician Bereavement Meeting.

Parent-physician bereavement meetings may benefit parents by facilitating sense making, which is associated with healthy adjustment after a traumatic event. Prior research suggests a reciprocal relationship between sense making and positive emotions. We analyzed parents' use of emotion words during bereavement meetings to better understand parents' emotional reactions during the meeting and how their emotional reactions related to their appraisals of the meeting. Parents' use of positive emotion words increased, suggesting the meetings help parents make sense of the death. Parents' use of positive emotion words was negatively related to their own and/or their spouse's appraisals of the meeting, suggesting that parents who have a positive emotional experience during the meeting may also have a short-term negative reaction. Language analysis can be an effective tool to understand individuals' ongoing emotions and meaning making processes during interventions to reduce adverse consequences of a traumatic event, such as a child's death.

Feasibility and perceived benefits of a framework for physician-parent follow-up meetings after a child's death in the PICU.

OBJECTIVE: To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child's death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network. DESIGN: Prospective observational study. SETTING: Seven Collaborative Pediatric Critical Care Research Network-affiliated children's hospitals. SUBJECTS: Critical care attending physicians, bereaved parents, and meeting guests (i.e., parent support persons, other health professionals). INTERVENTIONS: Physician-parent follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework. MEASUREMENTS AND MAIN RESULTS: Forty-six critical care physicians were trained to conduct follow-up meetings using the framework. All meetings were video recorded. Videos were evaluated for the presence or absence of physician behaviors consistent with the framework. Present behaviors were evaluated for performance quality using a 5-point scale (1 = low, 5 = high). Participants completed meeting evaluation surveys. Parents of 194 deceased children were mailed an invitation to a follow-up meeting. Of these, one or both parents from 39 families (20%) agreed to participate, 80 (41%) refused, and 75 (39%) could not be contacted. Of 39 who initially agreed, three meetings were canceled due to conflicting schedules. Thirty-six meetings were conducted including 54 bereaved parents, 17 parent support persons, 23 critical care physicians, and 47 other health professionals. Physician adherence to the framework was high; 79% of behaviors consistent with the framework were rated as present with a quality score of 4.3 ± 0.2. Of 50 evaluation surveys completed by parents, 46 (92%) agreed or strongly agreed the meeting was helpful to them and 40 (89%) to others they brought with them. Of 36 evaluation surveys completed by critical care physicians (i.e., one per meeting), 33 (92%) agreed or strongly agreed the meeting was beneficial to parents and 31 (89%) to them. CONCLUSIONS: Follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework are feasible and viewed as beneficial by meeting participants. Future research should evaluate the effects of follow-up meetings on bereaved parents' health outcomes.

Barriers to cancer screening among Orthodox Jewish women.

The increased risk of genetic cancer mutations for Ashkenazi Jews is well known. However, little is known about the cancer-related health behaviors of a subset of Ashkenazi Jews, Orthodox Jews, who are a very religious and insular group. This study partnered with Rabbinical leadership and community members in an Orthodox Jewish community to investigate barriers to cancer screening in this community. Orthodox Jewish women were recruited to participate in focus groups designed to elicit their perspectives on barriers to cancer screening. A total of five focus groups were conducted, consisting of 3-5 members per group, stratified by age and family history of cancer. Focus groups were audio recorded and transcribed. Transcripts were coded using conventional content analysis. The resulting themes identified as barriers to cancer screening were: preservation of hidden miracles, fate, cost, competing priorities, lack of culturally relevant programming, lack of information, and fear. These results provide a unique perspective on barriers to cancer screening in a high risk but understudied population. Findings from this study may serve to inform culturally appropriate cancer education programs to overcome barriers to screening in this and other similar communities.

Conveying genomic recurrence risk estimates to patients with early-stage breast cancer: oncologist perspectives.

OBJECTIVE: The development and increased use of genomic profiling has led to refinement of breast cancer treatment. This study sought to examine medical and surgical oncologists' perceptions of factors related to the translation and integration of Oncotype DX® (Genomic Health, Inc., Redwood City, CA, USA) into routine clinical care. METHODS: Twenty oncologists (10 medical and 10 surgical oncologists) participated in qualitative interviews. Questions centered on the following themes: oncologists' perceptions about the clinical utility of testing, the impact of patient preferences on the decision to test and use results to inform treatment decisions, methods of communicating risk associated with test results to patients, and benefits of and barriers to incorporating testing into multidisciplinary care settings. RESULTS: Oncologists found Oncotype DX test results useful in their practice but had concerns as well. These included that some oncologists either used testing inappropriately or placed undue emphasis on the results at the expense of other clinical information. The use of intermediate test results, which have less clear clinical implications, incorporating results with patient treatment preferences, and the use of testing in multidisciplinary teams were noted as specific challenges. CONCLUSION: Oncologists noted several benefits of testing and also many challenges, despite wide dissemination and common use. Education for health providers should include specific training in how to interpret and communicate the uncertainty inherent in genomic tests while integrating patient preferences to inform treatment decision making.

Patient, companion, and oncologist agreement regarding information discussed during triadic oncology clinical interactions.

BACKGROUND: Although people with cancer want and need information from their oncologists, patients and oncologists often disagree about what information was discussed during clinical interactions. Most patients have companions present during oncology visits; we investigated whether companions process information more accurately than patients. Specifically, we examined whether patients and companions differed in agreement with oncologists about what was discussed. We also investigated the effect of topic on agreement and patient/companion self-reported understanding of discussions. METHODS: Patients with companions were invited to participate on first visits to a cancer center in Detroit, MI. Patients, companions, and oncologists independently completed questionnaires immediately following visits. Participants were asked whether five topics were discussed (diagnosis, prognosis, metastasis, treatment/treatment goals, and side effects) and, if discussed, what oncologists said. Participants were also asked to estimate their own and each other's understanding of discussions. RESULTS: A total of 66 patient-companion-oncologist triads participated. Agreement was higher regarding whether topics were discussed than what oncologists said. Agreement did not differ by dyad type. Patients, companions, and oncologists were equally likely to be the source of triadic disagreements. Agreement was high about diagnosis (>90%) but much lower about other topics, particularly side effects. Patients and companions reported greater understanding of discussions than oncologists estimated and more accurately estimated each other's understanding than did oncologists. CONCLUSIONS: Companions and patients showed similar levels of agreement with oncologists about what they discussed during visits. Interventions are needed to improve communication of information to both patients and companions, especially about particular topics.