Pediatricians' Experience with Clinical Ethics Consultation: A National Survey.

2015

919-924.e1

2015 Oct

1097-6833

OBJECTIVE: To conduct a national survey of pediatricians' access to and experience with clinical ethics consultation.

STUDY DESIGN: We surveyed a randomly selected sample of 3687 physician members of the American Academy of Pediatrics. We asked about their experiences with ethics consultation, the helpfulness of and barriers to consultation, and ethics education. Using a discrete choice experiment with maximum difference scaling, we evaluated which traits of ethics consultants were most valuable.

RESULTS: Of the total sample of 3687 physicians, 659 (18%) responded to the survey. One-third of the respondents had no experience with clinical ethics consultation, and 16% reported no access to consultation. General pediatricians were less likely to have access. The vast majority (90%) who had experience with consultation had found it helpful. Those with fewer years in practice were more likely to have training in ethics. The most frequently reported issues leading to consultation concerned end-of-life care and conflicts with patients/families or among the team. Intensive care unit physicians were more likely to have requested consultation. Mediation skills and ethics knowledge were the most highly valued consultant characteristics, and representing the official position of the hospital was the least-valued characteristic.

CONCLUSION: There is variability in pediatricians' access to ethics consultation. Most respondents reported that consultation had been helpful in the past. Determining ethically appropriate end-of-life care and mediation of disagreements are common reasons that pediatricians request consultation.

10.1016/j.jpeds.2015.06.047

J. Pediatr.

26210945

Daily text message assessments of 6-mercaptopurine adherence and its proximal contexts in adolescents and young adults with leukemia: A pilot study.

2020

e28767

2020 Oct 18

1545-5017

<p><strong>BACKGROUND: </strong>This pilot study explored the feasibility and acceptability of implementing text-based assessments of oral chemotherapy adherence in adolescents and young adults (AYA) with leukemia.</p>

<p><strong>METHODS: </strong>AYA prescribed maintenance 6-mercaptopurine (6MP) received daily text message surveys and utilized an electronic pill bottle for 28&nbsp;days. Text surveys assessed 6MP adherence and contextual associates (eg, mood). Feasibility was defined by recruitment/retention rates, survey completion rates, cost, and technical issues. After the 28-day period, AYA completed an acceptability survey. Secondary analyses compared text survey and electronic pill bottle adherence rates, and explored the daily associations between contextual factors and 6MP nonadherence.</p>

<p><strong>RESULTS: </strong>Eighteen AYA enrolled (M age&nbsp;=&nbsp;18, range 15-22) and completed study procedures (100% recruitment and retention rates). Adherence survey completion rates were high (M&nbsp;=&nbsp;88.9%), the technology cost was $204.00, and there were few technical issues. AYA reported high satisfaction with the surveys and perceived them as a helpful medication reminder. While not significantly correlated, survey and electronic pill bottle adherence data converged on the majority of days (&gt;90%). Exploratory analyses showed that AYA were more likely to miss a dose of 6MP on weekends (OR&nbsp;=&nbsp;2.33, P&nbsp;=&nbsp;.048) and on days when their adherence motivation (OR&nbsp;=&nbsp;0.28, P&nbsp;=&nbsp;.047) and negative effect (OR&nbsp;=&nbsp;3.92, P&nbsp;=&nbsp;.02) worsened from their own typical functioning.</p>

<p><strong>CONCLUSIONS: </strong>For AYA with leukemia, daily text-based surveys are a feasible and acceptable method for delivering medication adherence assessments, and may operate as a short-term intervention. To develop personalized mobile health interventions, findings also highlighted the need to study time-varying predictors of 6MP nonadherence.</p>

10.1002/pbc.28767

Pediatr Blood Cancer

33073479

Adherence to Multiple Treatment Recommendations in Adolescents and Young Adults with Cancer: A Mixed Methods, Multi-Informant Investigation.

2020

2020 May 11

2156-535X

<p>This mixed methods study sought to assess adolescent and young adult (AYA) adherence to three cancer treatment recommendations (medications, diet, physical activity), and determine the individual, family, and health system factors associated with suboptimal adherence. In Stage 1, 72 AYA-caregiver dyads completed a validated adherence interview and surveys about individual and family functioning. Matched providers ( = 34 who reported on 61 AYAs) completed global adherence ratings through survey. In Stage 2, a subset ( = 31) completed qualitative interviews. Medication adherence was higher ( = 94.8%) than diet ( = 73.9%) and physical activity ( = 55.4%), although ≥50% demonstrated "Imperfect Adherence" for each subtask. Univariately, AYAs who missed a medication had more depressive symptoms, worse health-related quality of life (HRQOL), and more medication barriers; their families had more financial stress, worse family functioning, and lower self-efficacy. The odds of adhering to medications were lower with worse HRQOL (odds ratio [OR] = 1.08; 95% confidence interval [CI], 1.02-1.15) and family functioning (OR = 0.18; 95% CI, 0.04-0.91). The odds of adhering to physical activity and diet were lower with worse family functioning (OR = 0.09; 95% CI, 0.01-0.91) and more barriers (OR = 0.24, CI: 0.10-0.61), respectively. Qualitative themes further supported multilevel influences on AYA adherence. Adherence challenges were identified across medications, diet, and physical activity. Multilevel contextual factors were associated with suboptimal adherence, including poorer HRQOL and family functioning. Findings support the need to improve clinical adherence assessment and develop contextually tailored interventions.</p>

10.1089/jayao.2020.0013

J Adolesc Young Adult Oncol

32392434

Feasibility and Acceptability of a Pilot Tailored Text Messaging Intervention for Adolescents and Young Adults Completing Cancer Treatment.

2019

2019 Nov 11

1099-1611

<p><strong>PURPOSE: </strong>Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors.</p>

<p><strong>METHODS: </strong>Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n=31) or an AYA survivor handbook (n=30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received 1-2 health-related text messages per day over 16 weeks.</p>

<p><strong>RESULTS: </strong>THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability.</p>

<p><strong>CONCLUSIONS: </strong>Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.</p>

10.1002/pon.5287

Psychooncology

31713265

Mucosal Barrier Injury Central-Line-Associated Bloodstream Infections: What is the Impact of Standard Prevention Bundles?

2017

1-2

2017 Sep 06

1559-6834

10.1017/ice.2017.188

Infect Control Hosp Epidemiol

28874212

CLL/SLL diagnosed in an adolescent.

2014

1107-10

2014 Jun

1545-5017

<p>Chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) is a disease of older adults. Pediatric CLL/SLL is vanishingly rare in the literature. We present a case of CLL/SLL diagnosed in a 17-year-old male. The pathologic findings of this case were those of classic CLL/SLL with an ATM deletion, a characteristic genetic abnormality in CLL/SLL. Management guidelines for CLL/SLL are tailored to older adults making determination of the optimal therapy for this patient a unique challenge.</p>

10.1002/pbc.24884

Pediatr Blood Cancer

24281971

Patient and hospital factors associated with induction mortality in acute lymphoblastic leukemia.

2014

846-52

2014 May

1545-5017

<p><strong>BACKGROUND: </strong>Deaths during induction chemotherapy for pediatric acute lymphoblastic leukemia (ALL) account for one-tenth of ALL-associated mortality and half of ALL treatment-related mortality. We sought to ascertain patient- and hospital-level factors associated with induction mortality.</p>

<p><strong>PROCEDURE: </strong>We performed a retrospective cohort analysis of 8,516 children ages 0 to &lt;19 years with newly diagnosed ALL admitted to freestanding US children's hospitals from 1999 to 2009 using the Pediatric Health Information System database. Induction mortality risk was modeled accounting for demographics, intensive care unit-level interventions, and socioeconomic status (SES) using Cox regression. The association of ALL induction mortality with hospital-level factors including volume, hospital-wide mortality and payer mix was analyzed with multiple linear regression.</p>

<p><strong>RESULTS: </strong>ALL induction mortality was 1.12%. Race and patient-level SES factors were not associated with induction mortality. Patients receiving both mechanical ventilation and vasoactive infusions experienced nearly 50% mortality (hazard ratio 122.30, 95% CI 66.56-224.80). Institutions in the highest induction mortality quartile contributed 27% of all patients but nearly half of all deaths (47 of 95). Hospital payer mix was associated with ALL induction mortality after adjustment for other hospital-level factors (P = 0.046).</p>

<p><strong>CONCLUSIONS: </strong>The overall risk of induction death is low but substantially increased in patients with cardio-respiratory and other organ failures. Induction mortality varies up to three-fold across hospitals and is correlated with hospital payer mix. Further work is needed to improve induction outcomes in hospitals with higher mortality. These data suggest an induction mortality rate of less than 1% may be an attainable national benchmark.</p>

10.1002/pbc.24855

Pediatr Blood Cancer

24249480

Establishment of an 11-year cohort of 8733 pediatric patients hospitalized at United States free-standing children's hospitals with de novo acute lymphoblastic leukemia from health care administrative data.

2014

e1-6

2014 Jan

1537-1948

<p><strong>BACKGROUND: </strong>Acute lymphoblastic leukemia (ALL) accounts for almost one quarter of pediatric cancer in the United States. Despite cooperative group therapeutic trials, there remains a paucity of large cohort data on which to conduct epidemiology and comparative effectiveness research studies.</p>

<p><strong>RESEARCH DESIGN: </strong>We designed a 3-step process utilizing International Classification of Diseases-9 Clinical Modification (ICD-9) discharge diagnoses codes and chemotherapy exposure data contained in the Pediatric Health Information System administrative database to establish a cohort of children with de novo ALL. This process was validated by chart review at 1 of the pediatric centers.</p>

<p><strong>RESULTS: </strong>An ALL cohort of 8733 patients was identified with a sensitivity of 88% [95% confidence interval (CI), 83%-92%] and a positive predictive value of 93% (95% CI, 89%-96%). The 30-day all cause inpatient case fatality rate using this 3-step process was 0.80% (95% CI, 0.63%-1.01%), which was significantly different than the case fatality rate of 1.40% (95% CI, 1.23%-1.60%) when ICD-9 codes alone were used.</p>

<p><strong>CONCLUSIONS: </strong>This is the first report of assembly and validation of a cohort of de novo ALL patients from a database representative of free-standing children's hospitals across the United States. Our data demonstrate that the use of ICD-9 codes alone to establish cohorts will lead to substantial patient misclassification and result in biased outcome estimates. Systematic methods beyond the use of just ICD-9 codes must be used before analysis to establish accurate cohorts of patients with malignancy. A similar approach should be followed when establishing future cohorts from administrative data.</p>

10.1097/MLR.0b013e31824deff9

Med Care

22410405

A prospective study of chemotherapy immunologic effects and predictors of humoral influenza vaccine responses in a pediatric oncology cohort.

2013

1158-67

2013 Nov

1750-2659

<p><strong>BACKGROUND: </strong>Pediatric oncology patients represent a cohort of individuals uniquely at risk of complications from influenza, yet less likely to respond to the vaccine. It is not yet clear how to best protect this vulnerable population.</p>

<p><strong>METHODS: </strong>We performed a prospective analysis of 177 pediatric oncology patients to define the predictors of influenza vaccine responses. Each variable was examined over three time points and a repeated measure analysis was performed.</p>

<p><strong>RESULTS: </strong>Patients with ALL vaccinated during induction phase had superior influenza vaccine responses than those subjects vaccinated during post-induction or maintenance phases (P=0·0237). Higher aggregate HAI titer responses were associated with a higher baseline B-cell count (P=0·0240), and higher CD4 and CD8 influenza-specific T-cell responses, suggesting prior antigen exposure is a significant contributor. The solid tumor cohort had equivalent responses during all time frames of chemotherapy.</p>

<p><strong>DISCUSSION: </strong>The optimal protection from influenza of pediatric patients on chemotherapy should include vaccination, but it is clear that not all patients produce high titers of antibodies after vaccination. This study identified biomarkers that could be used to individualize vaccine approaches. Immunologic predictors might have a role in targeting resources, as B-cell counts predicted of vaccine responses among the patients with ALL.</p>

10.1111/irv.12058

Influenza Other Respir Viruses

23199016

Protecting pediatric oncology patients from influenza.

2013

204-11

2013 Feb

1549-490X

<p>Influenza is a common respiratory pathogen. Its severity can be unpredictable, but people with chronic illness are at increased risk of severe infection, complications, and death from influenza. This review examines evidence to support various strategies to protect pediatric oncology patients from influenza-related morbidity. Influenza vaccination should be considered standard. Additional evidence-supported measures include antiviral treatment, antiviral prophylaxis, cohorting of patients, and hospital infection control measures. Data from other high-risk populations support the vaccination of family members, double-dose or high-dose vaccination, and the use of barrier methods. These measures have the potential to optimize patient outcomes because there will be fewer treatment interruptions for acute illness. These strategies can also protect patients from prolonged hospitalizations and morbidity related to influenza.</p>

10.1634/theoncologist.2012-0401

Oncologist

23370325