Prevalence and Tolerance of Prognostic Uncertainty Among Thoracic Oncologists.

We undertook a cross-sectional survey of a random sample of thoracic oncologists from the American Society of Clinical Oncology clinical directory to characterize whether prognostic uncertainty has increased and if tolerance of uncertainty is associated with prognostic discussion practices. We also assessed the Physicians' Reactions to Uncertainty Scale and presented a vignette about an incurable patient with uncertain life expectancy. One hundred and ninety-two of 438 surveys (43.8%) were received. Of the respondents, 52.1% agreed "there is more prognostic uncertainty in the management of lung cancer now than 10 years ago," and 37.4% noted difficulty "staying up-to-date." In multivariable analyses, physician-reported anxiety about uncertainty (p = .05) and reluctance to disclose uncertainty (p = .04) were inversely associated with reporting having prognostic discussions with most patients. For the vignette, 92.1% reported they would discuss incurability, but only 76.3% said they would discuss the patient's life expectancy. Our data suggest prognostic uncertainty has increased in thoracic oncology and oncologists' tolerance of uncertainty may affect discussion practices.

Peri-transfusion quality-of-life assessment for patients with myelodysplastic syndromes.

BACKGROUND: Many patients with myelodysplastic syndromes (MDS) receive red cell transfusions to relieve symptoms associated with anemia, with transfusions triggered by hemoglobin level. It is not known if patients' quality of life (QOL) improves after transfusion, nor if peri-transfusion QOL assessment (PTQA) can guide future transfusion decisions. STUDY DESIGN AND METHODS: We conducted a prospective pilot study of adults with MDS at three centers. Participants, who had to have hemoglobin ≥7.5, completed an MDS-specific measure of QOL (the Quality of Life in Myelodysplasia Scale, [QUALMS]) 1 day before and 7 days after red cell transfusion. A report was sent to each patient and provider before the next transfusion opportunity, indicating whether there were clinically significant changes in QOL. We assessed the proportion of patients experiencing changes in QOL, and with a follow-up questionnaire, whether they perceived their PTQA data were used for future transfusion decisions. RESULTS: From 2018 to 2020, 62 patients enrolled (mean age 73 years) and 37 completed both pre- and post-transfusion QOL assessments. Of these, 35% experienced a clinically significant increase in QUALMS score 7 days after transfusion; 46% no change; and 19% a decrease. Among those completing the follow-up questionnaire, 23% reported that PTQA results were discussed by their provider when considering repeat transfusion. CONCLUSIONS: These data suggest PTQA is feasible for patients with MDS. Moreover, while helpful for some, for many others, red cell transfusion may not achieve its intended goal of improving QOL. PTQA offers a strategy to inform shared decision-making regarding red cell transfusion.

Embedding a genetic counselor into oncology clinics improves testing rates and timeliness for women with ovarian cancer.

OBJECTIVE: Germline genetic testing is crucial to the care of ovarian cancer patients, and as part of the guideline-based care for ovarian cancer patient's adherence to this recommendation has been low. We sought to determine whether embedding a genetic counselor (GC) within a medical and gynecologic oncology clinic would increase testing rates and improve the timeliness of testing. METHODS: Prospective cohort study of 358 ovarian cancer patients seen by medical and gynecologic oncologists between 2013 and 2015. Rates of referrals, completion of counseling, and genetic testing and timeliness of counseling were abstracted before and after a GC was embedded in the clinic in 2014. An additional year of data (2015) was collected to evaluate sustainability of the intervention. RESULTS: Between 2013 and 2015, 88-92% of women were referred for genetic testing, but in 2013 only 66% completed counseling and 61% were tested. After a GC was embedded in the clinic in 2014, more than 80% of referred women completed counseling and germline genetic testing. Time to genetic counseling also decreased from a median of 107 to 40 days, irrespective of age and cancer family history (p < 0.01). CONCLUSIONS: Embedding a GC into the workflow for ovarian cancer patients is an effective way of improving access to genetic counseling, testing rates, and the timeliness of testing.

Change in the Parent-Clinician Relationship Throughout the First Year of Treatment in Pediatric Oncology.

Importance: Challenges in the therapeutic relationship between clinicians and parents of children with cancer have been shown to emerge immediately after diagnosis, but little is known about whether such relationships improve over time. Objective: To better understand the potential evolution of parent-clinician relationships over the first year after diagnosis of pediatric cancer. Design, Setting, and Participants: This survey study was conducted from November 2015 to September 2020 at Dana-Farber Cancer Institute/Boston Children's Hospital and Texas Children's Hospital. Participants were oncology clinicians (attending physicians and fellows or nurse practitioners) and parents of children (aged <18 years) with a cancer diagnosis. Surveys were completed at study enrollment (soon after diagnosis [baseline]) and at the 3-month and 12-month follow-up. Exposures: Children had to have had at least 3 previous clinical visits with a primary oncology clinician. Main Outcomes and Measures: Survey instruments included the parent and clinician versions of the Relationship Challenges Scale, and factors associated with changes in relationships, including parental, clinician, and health care system attributes, were measured. Results: Survey participants included 150 parents (118 women [78.7%]; 98 with White race and ethnicity [65.3%]) and 49 clinicians (39 [79.6%] women; 39 with White race and ethnicity [79.6%]). Parents reported on 175 relationships with clinicians, and clinicians reported on 98 relationships with parents at all 3 time points (baseline, 3-month follow-up, and 12-month follow-up). Of the 175 relationships, 33 (18.9%) were considered to be challenging by parents at baseline, 27 (15.4%) were considered to be challenging at the 3-month follow-up, and 32 (18.3%) were considered to be challenging at the 12-month follow-up. Of the 33 challenging relationships at baseline, 20 (60.6%) resolved at the 12-month follow-up, whereas 13 (39.4%) had persistent challenges. However, 19 relationships that were not challenging at baseline had new challenges at the 12-month follow-up, corresponding to 59.4% of all challenges at the 12-month follow-up. No clinician behaviors were associated with improvement. Strategies used frequently (≥50%) by clinicians in their relationships that were associated with improvement included holding family meetings, apologizing, adapting to the parent's communication style, and devoting extra time and attention. Conclusions and Relevance: Results of this study showed that some parents experienced challenging relationships with their child's oncology clinicians beginning at diagnosis and throughout the first year after diagnosis. Although many such relationships improved, others worsened, reflecting the vulnerable and stressful nature of parent-clinician relationships.

Precancer and cancer-associated depression and anxiety among older adults with blood cancers in the United States.

For patients with blood cancers, comorbid mental health disorders at diagnosis likely affect the entire disease trajectory, as they can interfere with disease information processing, lead to poor coping, and even cause delays in care. We aimed to characterize the prevalence of depression and anxiety in patients with blood cancers. Using the Surveillance, Epidemiology, and End Results-Medicare database, we identified patients ≥67 years old diagnosed with lymphoma, myeloma, leukemia, or myelodysplastic syndromes between 2000 and 2015. We determined the prevalence of precancer depression and anxiety and cancer-associated (CA) depression and anxiety using claims data. We identified factors associated with CA-depression and CA-anxiety in multivariate analyses. Among 75 691 patients, 18.6% had at least 1 diagnosis of depression or anxiety. Of the total cohort, 13.7% had precancer depression and/or precancer anxiety, while 4.9% had CA-depression or CA-anxiety. Compared with patients without precancer anxiety, those with precancer anxiety were more likely to have subsequent claims for CA-depression (odds ratio [OR] 2.98; 95% CI 2.61-3.41). Other factors associated with a higher risk of CA- depression included female sex, nonmarried status, higher comorbidity, and myeloma diagnosis. Patients with precancer depression were significantly more likely to have subsequent claims for CA-anxiety compared with patients without precancer depression (OR 3.01; 95% CI 2.63-3.44). Female sex and myeloma diagnosis were also associated with CA-anxiety. In this large cohort of older patients with newly diagnosed blood cancers, almost 1 in 5 suffered from depression or anxiety, highlighting a critical need for systematic mental health screening and management for this population.

Developing and Field Testing BOLSTER: A Nurse-Led Care Management Intervention to Support Patients and Caregivers following Hospitalization for Gynecologic Cancer-Associated Peritoneal Carcinomatosis.

Introduction: Peritoneal carcinomatosis (PC) afflicts women with advanced gynecologic cancers. Patients with PC often require ostomies, gastric tubes, or catheters to palliate symptoms, yet patients and caregivers report feeling unprepared to manage these devices. The purpose of this study was to develop and field test the Building Out Lifelines for Safety, Trust, Empowerment, and Renewal (BOLSTER) intervention to support patients and their caregivers after hospitalization for PC. Materials and Methods: We adapted components of the Standard Nursing Intervention Protocol with stakeholders and topical experts. We developed educational content; built a smartphone application to assess patients' symptoms; and assessed preliminary feasibility and acceptability in two single-arm prepilot studies. Eligible participants were English-speaking adults hospitalized for gynecologic cancer-associated PC and their caregivers. Feasibility criteria were a ≥50% consent-to-approach ratio and ≥80% outcome measure completion. The acceptability criterion was ≥70% of participants recommending BOLSTER. Results: During the first prepilot, BOLSTER was a 10-week intervention. While 7/8 (87.5%) approached patients consented, we experienced high attrition to hospice. Less than half of patients (3/7) and caregivers (3/7) completed outcome measures. For the second prepilot, BOLSTER was a four-week intervention. All (7/7) approached patients consented. Two withdrew before participating in any study activity because they were "too overwhelmed." We excluded data from one caregiver who completed baseline measures with the patient's assistance. All remaining patients (5/5) and caregivers (4/4) completed outcome measures and recommended BOLSTER. Conclusion: BOLSTER is a technology-enhanced, nurse-led intervention that is feasible and acceptable to patients with gynecologic cancer-associated PC and their caregivers.

Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology.

Importance: Parents of children with cancer value strong therapeutic relationships with oncology clinicians, but not every relationship is positive. Objective: To 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 Participants: This 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. Exposures: At least 3 previous clinical visits between parent and clinician. Main Outcomes and Measures: The 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. Results: Among 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 Relevance: This 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.