Clinical Assistant Professor, Pediatrics - Hematology & Oncology
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BACKGROUND: Adolescents and young adults (AYAs) experience treatment nonadherence rates as high as 60%, which can increase the risk of cancer relapse. Involvement of AYAs in treatment decisions might support adherence to medical treatment.OBJECTIVE: The aim of this study was to explore the involvement of AYAs, aged 15 to 20 years, in cancer treatment decision making (TDM).METHODS: Using interpretive focused ethnography, we conducted interviews with 16 AYAs (total of 31 interviews) receiving cancer treatment within 1 year of diagnosis. Participants reflected on a major recent TDM experience (eg, clinical trial, surgery) and other treatment decisions.RESULTS: Participants distinguished important major cancer treatment decisions from minor supportive care decisions. We identified 3 common dimensions related to AYAs' involvement in cancer TDM: (1) becoming experienced with cancer, (2) import of the decision, and (3) decision-making roles. The preferences of AYAs for participation in TDM varied over time and by type of decision. We have proposed a 3-dimensional model to illustrate how these dimensions might interact to portray TDM during the first year of cancer treatment for AYAs.CONCLUSIONS: As AYAs accumulate experience in making decisions, their TDM preferences might evolve at different rates depending on whether the decisions are perceived to be minor or major. Parents played a particularly important supportive role in TDM for AYA participants.IMPLICATIONS FOR PRACTICE: Clinicians should consider the AYAs' preferences and the role they want to assume in making different decisions in order to support and encourage involvement in their TDM and care.
View details for DOI 10.1097/NCC.0000000000000820
View details for PubMedID 33084293
In resource-rich countries, 5-year survival rates for children with cancer approach 85%. This impressive statistic is largely the result of integrating research with clinical care. At the core of this endeavor are multiagent combination chemotherapy and supportive care agents (CASCA). Most CASCAs belong to the class of sterile injectable drugs, which make up the backbone of many proven and life-saving pediatric oncology regimens. There are few if any alternative agents available to treat most life-threatening childhood cancers. In the United States, shortages of CASCAs are now commonplace. The consequences of drug shortages are far reaching. Beyond the economic costs, these shortages directly affect patients' lives, and this is especially true for children with cancer. Drug shortages in general and shortages of CASCAs specifically result in increased medication errors, delayed administration of life-saving therapy, inferior outcomes, and patient deaths. One way to mitigate drug shortages is to adopt an essential medicines list and ensure that these medications remain in adequate supply at all times. We argue for creation of a CASCA-specific essential medicines list for childhood cancer and provide ethical and policy-based reasoning for this approach. We recognize that such a call has implications beyond pediatric cancer, in that children with other serious disease should have an equal claim to access to guaranteed evidence-based medicines. We provide these arguments as an example of what should be claimed for medical indications that are deemed essential to preserve life and function.
View details for DOI 10.1001/jamapediatrics.2019.0070
View details for Web of Science ID 000467505200016
View details for PubMedID 30830204
PROBLEM IDENTIFICATION: Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs' TDM involvement.LITERATURE SEARCH: Integrative review focused on AYAs aged 15-21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE, PsycINFO, CINAHL, and Web of Science databases.DATA EVALUATION: 4,047 articles were identified; 21 met inclusion criteria.SYNTHESIS: Five factors were identified.IMPLICATIONS FOR RESEARCH: Research is needed to understand AYAs' preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.
View details for PubMedID 30547960
View details for Web of Science ID 000459359400510
Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so.Using descriptive qualitative research methods, we interviewed 20 children ages 9-17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, "Having a say, as I need at this time" ('Having a Say'), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed 'Having a Say' results.Children's contextually related 'Having a Say' preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age.The 'Having a Say' construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. 'Having a Say' is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.
View details for DOI 10.1002/pbc.26262
View details for PubMedID 28221731
Hemoglobinuria was observed after packed red blood cell transfusion in a series of patients at our pediatric treatment center. Laboratory testing was suggestive of intravascular hemolysis with no support for an immunohematologic process.We investigated these adverse events to define a quality improvement plan and to prevent future hemolytic adverse events. Multiple factors were investigated, and the only change identified was the implementation of a new infusion pump (Pump A) that replaced a previous model (Pump B).In vitro pump analyses, a retrospective review of urinalyses, and prospective urinalysis and nursing surveillances were also performed.In in vitro analysis of the pumps, irradiated units with higher hematocrit at a low flow rate through Pump A had a greater than thirty-fold increase in free hemoglobin from baseline compared to minimal free hemoglobin changes seen with Pump B. Irradiated units with a lower hematocrit had a minimal change in free hemoglobin from baseline with both Pumps A and B at either low or high flow rate. Subsequently, only units with lower hematocrits were issued for transfusion of pediatric patients, and Pump A was replaced by Pump B in the outpatient unit. Retrospective and prospective surveillances found no additional unexplained cases of gross hemoglobinuria associated with transfusion.The investigation determined that infusion of higher hematocrit units using a specific commercial pump was associated with mechanical hemolysis. The change to units with lower hematocrit through an alternative pump has been an effective corrective action to date.
View details for PubMedID 25887866
Secondary analysis of existing qualitative datasets offers an opportunity to efficiently use these difficult-to-collect data to generate hypotheses for future research and expand understanding of the phenomena under study. We conducted a retrospective interpretation of two qualitative datasets regarding childhood cancer treatment decision making to elaborate themes regarding parents' cancer communication (information sharing and involvement of their children in treatment decision making) that were not fully developed in the original analyses. We identified broad variability in parents' cancer communication that was not entirely dependent upon the age of their ill child. We were able to generate multiple hypotheses to help guide our future research.
View details for DOI 10.1177/0193945913507487
View details for Web of Science ID 000331971200006
View details for PubMedID 24159058
A formal Mentorship Program within the Children's Oncology Group (COG) was established to pair young investigators (mentees) with established COG members (mentors). Despite the American Academy of Pediatrics policy statement promoting mentorship programs, there are no publications describing and evaluating national mentorship programs in pediatric subspecialties. In this study, a series of internal program evaluations were performed using surveys of both mentors and mentees. Responses were deidentified and analyzed to determine the utility of the program by both participant satisfaction and self-reported academic productivity. Results indicated that mentees were generally satisfied with the program. Mentor-mentee pairs that met at least quarterly demonstrated greater academic productivity than pairings that met less frequently. This formal mentorship program appeared to have subjective and objective utility for the development of academic pediatric subspecialists.
View details for DOI 10.1097/MPH.0b013e31829eec33
View details for Web of Science ID 000323232400018
View details for PubMedID 23892351
View details for PubMedCentralID PMC3839621
Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM).The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer.Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions.Parents' determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child's surrogate in partnership with the child's medical team.Making the right decision for one's child under challenging conditions is an extension of the parental obligation to act in the child's best interest and a responsibility that parents claim as their own.The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.
View details for DOI 10.1097/NCC.0b013e3182431071
View details for Web of Science ID 000310568900010
View details for PubMedID 22293159