Child and family perceptions of satisfaction with neutropenia management in pediatric acute myeloid leukemia.

PURPOSE: Chemotherapy for pediatric acute myeloid leukemia (AML) is very intensive and many, but not all centers, require extended hospitalization until neutrophil recovery. Child and family preferences, beliefs, and experiences around hospitalization have not been systematically assessed. PATIENTS AND METHODS: We recruited children with AML and their parents from nine pediatric cancer centers across the United States for a qualitative interview about their experiences of neutropenia management. Interviews were analyzed using a conventional content analysis approach. RESULTS: Of 116 eligible individuals, 86 (74.1%) agreed to participate. Interviews were conducted with 32 children and 54 parents from 57 families. Of these 57 families, 39 were cared for as inpatients and 18 were managed as outpatients. A very high proportion of respondents in both groups reported satisfaction with the discharge management strategy recommended by the treating institution: 86% (57 individuals) of respondents who experienced inpatient management and 85% (17 individuals) of respondents who experienced outpatient management expressed satisfaction. Respondent perceptions associated with satisfaction related to safety (access to emergency interventions, infection risk, close monitoring) and psychosocial concerns (family separation, low morale, social support). Respondents believed it could not be assumed that all children would have the same experience due to varied life circumstances. CONCLUSION: Children with AML and their parents express a very high degree of satisfaction with the discharge strategy recommended by their treating institution. Respondents saw a nuanced tradeoff between patient safety and psychosocial concerns that was mediated by a child's life circumstances.

Factors that contribute to disparities in time to acute leukemia diagnosis in young people: an in depth qualitative interview study.

BACKGROUND: Racial and ethnic disparities in outcomes for Black and Hispanic children with acute leukemia have been well documented, however little is known about the determinants of diagnostic delays in pediatric leukemia in the United States. The primary objective of this study is to identify factors contributing to delays preceding a pediatric leukemia diagnosis. METHODS: This qualitative study utilized in-depth semi-structured interviews. Parents and/or patients within two years of receiving a new acute leukemia diagnosis were asked to reflect upon their family's experiences preceding the patient's diagnosis. Subjects were purposively sampled for maximum variation in race, ethnicity, income, and language. Interviews were analyzed using inductive theory-building and the constant comparative method to understand the process of diagnosis. Chart review was conducted to complement qualitative data. RESULTS: Thirty-two interviews were conducted with a diverse population of English and Spanish speaking participants from two tertiary care pediatric cancer centers. Parents reported feeling frustrated when their intuition conflicted with providers' management decisions. Many felt laboratory testing was not performed soon enough. Additional contributors to delays included misattribution of vague symptoms to more common diagnoses, difficulties in obtaining appointments, and financial disincentives to seek urgent or emergent care. Reports of difficulty obtaining timely appointments and financial concerns were disproportionately raised among low-income Black and Hispanic participants. Comparatively, parents with prior healthcare experiences felt better able to navigate the system and advocate for additional testing at symptom onset. CONCLUSIONS: While there are disease-related factors contributing to delays in diagnosis, it is important to recognize there are multiple non-disease-related factors that also contribute to delays. Evidence-based approaches to reduce outcome disparities in pediatric cancer likely need to start in the primary care setting where timeliness of diagnosis can be addressed.

Medical Outcomes, Quality of Life, and Family Perceptions for Outpatient vs Inpatient Neutropenia Management After Chemotherapy for Pediatric Acute Myeloid Leukemia.

Importance: Pediatric acute myeloid leukemia (AML) requires multiple courses of intensive chemotherapy that result in neutropenia, with significant risk for infectious complications. Supportive care guidelines recommend hospitalization until neutrophil recovery. However, there are little data to support inpatient over outpatient management. Objective: To evaluate outpatient vs inpatient neutropenia management for pediatric AML. Design, Setting, and Participants: This cohort study used qualitative and quantitative methods to compare medical outcomes, patient health-related quality of life (HRQOL), and patient and family perceptions between outpatient and inpatient neutropenia management. The study included patients from 17 US pediatric hospitals with frontline chemotherapy start dates ranging from January 2011 to July 2019, although the specific date ranges differed for the individual analyses by design and relative timing. Data were analyzed from August 2019 to February 2020. Exposures: Discharge to outpatient vs inpatient neutropenia management. Main Outcomes and Measures: The primary outcomes of interest were course-specific bacteremia incidence, times to next course, and patient HRQOL. Course-specific mortality was a secondary medical outcome. Results: Primary quantitative analyses included 554 patients (272 [49.1%] girls and 282 [50.9%] boys; mean [SD] age, 8.2 [6.1] years). Bacteremia incidence was not significantly different during outpatient vs inpatient management (67 courses [23.8%] vs 265 courses [29.0%]; adjusted rate ratio, 0.73; 95% CI, 0.56 to 1.06; P = .08). Outpatient management was not associated with delays to the next course compared with inpatient management (mean [SD] 30.7 [12.2] days vs 32.8 [9.7] days; adjusted mean difference, -2.2; 95% CI, -4.1 to -0.2, P = .03). Mortality during intensification II was higher for patients who received outpatient management compared with those who received inpatient management (3 patients [5.4%] vs 1 patient [0.5%]; P = .03), but comparable with inpatient management at other courses (eg, 0 patients vs 5 patients [1.3%] during induction I; P = .59). Among 97 patients evaluated for HRQOL, outcomes did not differ between outpatient and inpatient management (mean [SD] Pediatric Quality of Life Inventory total score, 70.1 [18.9] vs 68.7 [19.4]; adjusted mean difference, -2.8; 95% CI, -11.2 to 5.6). A total of 86 respondents (20 [23.3%] in outpatient management, 66 [76.7%] in inpatient management) completed qualitative interviews. Independent of management strategy received, 74 respondents (86.0%) expressed satisfaction with their experience. Concerns for hospital-associated infections among caregivers (6 of 7 caregiver respondents [85.7%] who were dissatisfied with inpatient management) and family separation (2 of 2 patient respondents [100%] who were dissatisfied with inpatient management) drove dissatisfaction with inpatient management. Stress of caring for a neutropenic child at home (3 of 3 respondents [100%] who were dissatisfied with outpatient management) drove dissatisfaction with outpatient management. Conclusions and Relevance: This cohort study found that outpatient neutropenia management was not associated with higher bacteremia incidence, treatment delays, or worse HRQOL compared with inpatient neutropenia management among pediatric patients with AML. While outpatient management may be safe for many patients, course-specific mortality differences suggest that outpatient management in intensification II should be approached with caution. Patient and family experiences varied, suggesting that outpatient management may be preferred by some but may not be feasible for all families. Further studies to refine and standardize safe outpatient management practices are warranted.

An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact.

CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.

Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer.

CONTEXT: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals. OBJECTIVES: To describe distinct meanings of the term "uncertainty" that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals. METHODS: We conducted a phenomenological qualitative analysis of "uncertainty" as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care. RESULTS: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care. CONCLUSION: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.

Nephrology in the Academic Intensive Care Unit: A Qualitative Study of Interdisciplinary Collaboration.

RATIONALE & OBJECTIVE: Collaboration between nephrology consultants and intensive care unit (ICU) teams is important in light of the high incidence of acute kidney injury in today's ICUs. Although there is considerable debate about how nephrology consultants and ICU teams should collaborate, communicative dynamics between the 2 parties remain poorly understood. This article describes interactions between nephrology consultants and ICU teams in the academic medical setting. STUDY DESIGN: Focused ethnography using semi-structured interviews and participant observation. SETTING & PARTICIPANTS: Purposive sampling was used to enroll nephrologists, nephrology fellows, and ICU practitioners across several roles collaborating in 3 ICUs (a medical ICU, a surgical ICU, and a cardiothoracic surgical ICU) of a large urban US academic medical center. Participant observation (150 hours) and semi-structured interviews (35) continued until theoretical saturation. ANALYTICAL APPROACH: Interview and fieldnote transcripts were coded in an iterative team-based process. Explanation was developed using an abductive approach. RESULTS: Nephrology consultants and surgical ICU teams exhibited discordant preferences about the aggressiveness of renal replacement therapy based on different understandings of physiology, goals of care, and acuity. Collaborative difficulties resulting from this discordance led to nephrology consultants often serving as dialysis proceduralists rather than diagnosticians in surgical ICUs and to consultants sometimes choosing not to express disagreements about clinical care because of the belief that doing so would not lead to changes in the course of care. LIMITATIONS: Aspects of this single-site study of an academic medical center may not be generalizable to other clinical settings and samples. Surgical team perspectives would provide further detail about nephrology consultation in surgical ICUs. The effects of findings on patient care were not examined. CONCLUSIONS: Differences in approach between internal medicine-trained nephrologists and anesthesia- and surgery-trained intensivists and surgeons led to collaborative difficulties in surgical ICUs. These findings stress the need for medical teamwork research and intervention to address issues stemming from disciplinary siloing rooted in long-term socialization to different disciplinary practices.

Infections after pediatric ambulatory surgery: Incidence and risk factors.

OBJECTIVE: To describe the epidemiology of surgical site infections (SSIs) after pediatric ambulatory surgery. DESIGN: Observational cohort study with 60 days follow-up after surgery. SETTING: The study took place in 3 ambulatory surgical facilities (ASFs) and 1 hospital-based facility in a single pediatric healthcare network.ParticipantsChildren <18 years undergoing ambulatory surgery were included in the study. Of 19,777 eligible surgical encounters, 8,502 patients were enrolled. METHODS: Data were collected through parental interviews and from chart reviews. We assessed 2 outcomes: (1) National Healthcare Safety Network (NHSN)-defined SSI and (2) evidence of possible infection using a definition developed for this study. RESULTS: We identified 21 NSHN SSIs for a rate of 2.5 SSIs per 1,000 surgical encounters: 2.9 per 1,000 at the hospital-based facility and 1.6 per 1,000 at the ASFs. After restricting the search to procedures completed at both facilities and adjustment for patient demographics, there was no difference in the risk of NHSN SSI between the 2 types of facilities (odds ratio, 0.7; 95% confidence interval, 0.2-2.3). Within 60 days after surgery, 404 surgical patients had some or strong evidence of possible infection obtained from parental interview and/or chart review (rate, 48 SSIs per 1,000 surgical encounters). Of 306 cases identified through parental interviews, 176 cases (57%) did not have chart documentation. In our multivariable analysis, older age and black race were associated with a reduced risk of possible infection. CONCLUSIONS: The rate of NHSN-defined SSI after pediatric ambulatory surgery was low, although a substantial additional burden of infectious morbidity related to surgery might not have been captured by standard surveillance strategies and definitions.

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology.

PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. METHODS: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration. RESULTS: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices. CONCLUSIONS: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.

Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor.

CONTEXT: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns. OBJECTIVES: To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation. METHODS: We conducted semistructured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach. RESULTS: We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation. CONCLUSION: The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.

Identifying patient- and family-centered outcomes relevant to inpatient versus at-home management of neutropenia in children with acute myeloid leukemia.

Efficacy of therapeutic strategies relative to patient- and family-centered outcomes in pediatric oncology must be assessed. We sought to identify outcomes important to children with acute myeloid leukemia and their families related to inpatient versus at-home management of neutropenia. We conducted qualitative interviews with 32 children ≥8 years old and 54 parents. Analysis revealed the impact of neutropenia management strategy on siblings, parent anxiety, and child sleep quality as being outcomes of concern across respondents. These themes were used to inform the design of a questionnaire that is currently being used in a prospective, multiinstitutional comparative effectiveness trial.

To leave or to lie? Are concerns about a shift-work mentality and eroding professionalism as a result of duty-hour rules justified?

CONTEXT: Medical educators worry that the 2003 Accreditation Council for Graduate Medical Education (ACGME) duty-hour rules (DHR) have encouraged a "shift work" mentality among residents and eroded their professionalism by forcing them either to abandon patients when they have worked for eighty hours or lie about the number of hours worked. In this qualitative study, we explore how medical and surgical residents perceive and respond to DHR by examining the "local" organizational culture in which their work is embedded. METHODS: In 2008, we conducted three months of ethnographic observation of internal medicine and general surgery residents as they went about their everyday work in two hospitals affiliated with the same training program, as well as in-depth interviews with seventeen residents. Field notes and interview transcripts were analyzed for perceptions and behaviors in regard to beginning and leaving work, reporting duty hours, and expressing opinions about DHR. FINDINGS: The respondents did not exhibit a "shift work" mentality in relation to their work. We found that residents: (1) occasionally stay in the hospital in order to complete patient care tasks even when, according to the clock, they are required to leave, because the organizational culture stresses performing work thoroughly, (2) do not blindly embrace noncompliance with DHR but are thoughtful about the tradeoffs inherent in the regulations, and (3) express nuanced and complex reasons for erroneously reporting duty hours, suggesting that reporting hours worked is not a simple issue of lying or truth telling. CONCLUSIONS: Concerns about DHR and the erosion of resident professionalism resulting from the development of a "shift work" mentality likely have been overstated. Instead, the influence of DHR on professionalism is more complex than the conventional wisdom suggests and requires additional assessment.