Increasing COVID-19 Vaccination Rates for Children With Sickle Cell Disease.

BACKGROUND: The COVID-19 vaccine is important for children with sickle cell disease (SCD). This quality improvement project's objective was to increase the proportion of children with SCD receiving ≥2 COVID-19 vaccine doses to ≥70% by June 2022. METHODS: We used the Model for Improvement framework. We assessed COVID-19 vaccination rates biweekly. Three plan-do-study-act cycles focusing on patient education, provider awareness, and access were performed. Process measures included the outcome of outreach calls and educational video views. Missed clinic appointments was our balancing measure. Line graphs and statistical process control charts were used to track changes. Interrupted time series was used to model implementation rates while accounting for preexisting trends. RESULTS: A total of 243 patients were included. During the preintervention (September 2021-January 2022) and intervention periods (February 2022-June 2022), overall vaccination rates increased from 33% to 41% and 41% to 64%, respectively. Mean vaccination rate in eligible children in each 2-week period increased from 2.1% to 7.2%. The achieved vaccination rate was 11% greater than predicted for patients with SCD. For the general population the achieved vaccination rate was 23% lower than predicted. The proportion of missed visits did not change (9.0% vs. 9.6%). During outreach calls, 10 patients (13.5%) booked a vaccine. Forty percent of patients watched the promotional video. CONCLUSIONS: A significant number of patients with SCD are not vaccinated against COVID-19. Targeting misinformation and improving vaccine access aided in increasing vaccination. Additional interventions are needed as a large number of patients remain unvaccinated.

Use of the osmolal gap in diagnosing mixed physiology hyponatremia in a child with B-cell acute lymphoblastic leukemia.

Hyponatremia is common among children undergoing treatment for hematologic malignancies and may be attributed to multiple underlying causes. In cases of hyponatremia due to mixed physiology, the osmolal gap, can identify pseudohyponatremia that may be masked by other causes.

Health Literacy and Clinical Outcomes Following Hematopoietic Stem-Cell Transplantation.

PURPOSE: To test associations between health literacy and clinical outcomes in patients undergoing hematopoietic stem-cell transplantation (HSCT). METHODS: English- and Spanish-speaking patients age ≥ 18 years were recruited while admitted for first allogeneic HSCT. Associations between low health literacy (Newest Vital Sign ≤ 3 or Short Test of Functional Health Literacy in Adults ≤ 22) and HSCT outcomes were evaluated. RESULTS: Twenty-eight percent of 177 participants had low health literacy by Newest Vital Sign. None had low health literacy by Short Test of Functional Health Literacy in Adults. There was no statistically significant difference between patients with low and adequate health literacy in hospital readmissions (60% v 54%, P = .4), 2-year overall survival (58% v 66%, P = .19), 2-year cumulative incidence of nonrelapse death (16% v 10%, P = .35), and acute graft-versus-host disease (53% v 44%, P = .3). In multivariable analyses, there were no significant associations between health literacy and clinical outcomes. CONCLUSION: In this cohort of patients undergoing HSCT, we did not identify a relationship between health literacy and clinical outcomes. Although we did not find statistically significant associations between health literacy and HSCT outcomes, interventions to address health literacy should be considered, given complex outpatient care and evidence for adverse outcomes associated with health literacy in similar diseases.

Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research.

Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects:Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Measurements: Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Results: Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; p = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.

The relationship between household income and patient-reported symptom distress and quality of life in children with advanced cancer: A report from the PediQUEST study.

BACKGROUND: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. METHODS: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [≥$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. RESULTS: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (ßlow-high =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (ß=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (ß=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (ß=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (ß=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (ß=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (ß=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (ß=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. CONCLUSIONS: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.

Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity.

BACKGROUND: Most parents of children with cancer say they want detailed information about their child's prognosis. However, prior work has been conducted in populations of limited diversity. The authors sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences among parents of children with cancer. METHODS: In total, 357 parents of children with cancer and the children's physicians were surveyed at Dana-Farber Cancer Institute/Boston Children's Hospital and Children's Hospital of Philadelphia. Outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes, and communication outcomes. Associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering. RESULTS: Two hundred eighty-one parents (79%) were white, 23 (6%) were black, 29 (8%) were Hispanic, and 24 (7%) were Asian/other. Eighty-seven percent of parents wanted as much detail as possible about their child's prognosis, with no significant differences by race/ethnicity (P = .75). However, physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity, with physicians considering black and Hispanic parents less interested in details about prognosis than whites (P = .003). Accurate understanding of a less favorable prognosis was greater among white (49%) versus nonwhite parents (range, 20%-29%), although this difference was not statistically significant (P = .14). CONCLUSIONS: Most parents, regardless of racial and ethnic background, want detailed prognostic information about their child's cancer. However, physicians underestimate the information needs of black and Hispanic parents. To meet parents' information needs, physicians should ask about parents' information preferences before prognosis discussions. Cancer 2017;123:3995-4003. © 2017 American Cancer Society.

Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives.

BACKGROUND: Previous work on difficult relationships between patients and physicians has largely focused on the adult primary care setting and has typically held patients responsible for challenges. Little is known about experiences in pediatrics and more serious illness; therefore, we examined difficult relationships between parents and physicians of children with cancer. METHODS: This was a cross-sectional, semistructured interview study of parents and physicians of children with cancer at the Dana-Farber Cancer Institute and Boston Children's Hospital (Boston, Mass) in longitudinal primary oncology relationships in which the parent, physician, or both considered the relationship difficult. Interviews were audiotaped, transcribed, and subjected to a content analysis. RESULTS: Dyadic parent and physician interviews were performed for 29 relationships. Twenty were experienced as difficult by both parents and physicians; 1 was experienced as difficult by the parent only; and 8 were experienced as difficult by the physician only. Parent experiences of difficult relationships were characterized by an impaired therapeutic alliance with physicians; physicians experienced difficult relationships as demanding. Core underlying issues included problems of connection and understanding (n = 8), confrontational parental advocacy (n = 16), mental health issues (n = 2), and structural challenges to care (n = 3). Although problems of connection and understanding often improved over time, problems of confrontational advocacy tended to solidify. Parents and physicians both experienced difficult relationships as highly distressing. CONCLUSIONS: Although prior conceptions of difficult relationships have held patients responsible for challenges, this study has found that difficult relationships follow several patterns. Some challenges, such as problems of connection and understanding, offer an opportunity for healing. However, confrontational advocacy appears especially refractory to repair; special consideration of these relationships and avenues for repairing them are needed. Cancer 2017;123:675-681. © 2016 American Cancer Society.