Publications by authors named "Liza-Marie Johnson"

53 Publications

Opioid Management in the Dying Child With Addiction.

Pediatrics 2021 Feb 14;147(2). Epub 2021 Jan 14.

Cincinnati Children's Hospital, Cincinnati, Ohio.

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.
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http://dx.doi.org/10.1542/peds.2020-046219DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849194PMC
February 2021

Germline Gene Editing for Sickle Cell Disease.

Am J Bioeth 2020 08;20(8):46-49

St. Jude Children's Research Hospital.

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http://dx.doi.org/10.1080/15265161.2020.1781970DOI Listing
August 2020

Integrating Mental Health Care for Medically Complex Children.

Pediatrics 2020 08;146(2)

Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.

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http://dx.doi.org/10.1542/peds.2019-0898DOI Listing
August 2020

Outcomes and Disposition of Oncology Patients With Non-neutropenic Fever and Positive Blood Cultures.

J Pediatr Hematol Oncol 2021 03;43(2):47-51

Departments of Oncology.

Children with cancer and non-neutropenic fever (NNF) episodes are often treated as outpatients if they appear well. However, a small subset have bloodstream infections (BSIs) and must return for further evaluation. These patients may be directly admitted to inpatient units, whereas others are first evaluated in outpatient settings before admission. The best practice for securing care for patients discovered to have outpatient bacteremia are unclear. To determine outcomes and compare time to antibiotics between the 2 disposition, we retrospectively reviewed all NNF initially treated as outpatients and later had positive blood cultures from 2012 to 2016. Of 845 NNF cases initially treated in outpatient settings, 48 episodes (n=43 patients) had BSIs. Of those, 77.1% (n=37) were re-evaluated as outpatients and admitted; 14.6% (n=7) were direct admissions. The median time to antibiotic did not significantly differ between outpatient re-evaluations (119 min) and direct admissions (191 min), P=0.11. One patient met sepsis criteria upon return and required intensive care unit admission for vasopressor support. No patient died within 1 week of the febrile episode. Most patients with NNF and BSIs initially discharged are stable upon return. Institutions should evaluate their patient flows to ensure that patients receive timely care.
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http://dx.doi.org/10.1097/MPH.0000000000001878DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7762736PMC
March 2021

Should Poor Social Support Be an Exclusion Criterion in Bone Marrow Transplantation?

Am J Bioeth 2019 11;19(11):39-41

St. Jude Children's Research Hospital.

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http://dx.doi.org/10.1080/15265161.2019.1665736DOI Listing
November 2019

Speaking genomics to parents offered germline testing for cancer predisposition: Use of a 2-visit consent model.

Cancer 2019 07 22;125(14):2455-2464. Epub 2019 Mar 22.

Division of Cancer Predisposition, St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information.

Methods: Parents of children with cancer were offered the opportunity to have their children's tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2-visit informed consent model. Baseline genetic knowledge and self-reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered.

Results: As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one-third of the parents. No relation was identified between the change in the overall percentage of correct answers and self-reported literacy, numeracy, or demographics.

Conclusions: The use of a 2-visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding.
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http://dx.doi.org/10.1002/cncr.32071DOI Listing
July 2019

Impact of Race and Ethnicity on End-of-Life Experiences for Children With Cancer.

Am J Hosp Palliat Care 2019 Sep 13;36(9):767-774. Epub 2019 Mar 13.

1 Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.

Background: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.

Objective: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.

Methods: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.

Results: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, = .009) and underwent 3.136 (CI: 1.433-6.869, = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, = .042). The remainder of variables were not found to be significantly correlated with ethnicity.

Conclusions: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
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http://dx.doi.org/10.1177/1049909119836939DOI Listing
September 2019

Chemotherapy and Supportive Care Agents as Essential Medicines for Children With Cancer.

JAMA Pediatr 2019 05;173(5):477-484

Pediatric Hematology-Oncology, IWK Health Centre, Dalhousie University, Halifax, Nova Scotia, Canada.

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.
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http://dx.doi.org/10.1001/jamapediatrics.2019.0070DOI Listing
May 2019

Ethical issues in the care of adolescent and young adult oncology patients.

Pediatr Blood Cancer 2019 05 8;66(5):e27608. Epub 2019 Jan 8.

Division of Quality-of-Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.

The diagnosis and treatment of cancer leads to short-term and long-term challenges for every patient. This is especially true for adolescents and young adults (AYAs) with cancer who strive to gain independence, autonomy, confidence, and social status while developing into adulthood. In this article, we review prominent ethical issues in AYA oncology that are related to autonomy, shared decision-making, care refusal or abandonment, end-of-life care, truth telling, and fertility preservation. Clinicians should recognize that AYA patients develop at their own pace; the onus lies with clinicians to determine the patient's interests, values, maturity, and desire to participate in decision-making.
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http://dx.doi.org/10.1002/pbc.27608DOI Listing
May 2019

Are we meeting the informational needs of cancer patients and families? Perception of physician communication in pediatric oncology.

Cancer 2019 05 2;125(9):1518-1526. Epub 2019 Jan 2.

Division of Quality-of-life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care.

Method: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed.

Results: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test).

Conclusion: Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.
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http://dx.doi.org/10.1002/cncr.31937DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945977PMC
May 2019

A quality improvement project to improve pediatric medical provider sleep and communication during night shifts.

Int J Qual Health Care 2019 Oct;31(8):633-638

Department of Psychology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, MS-101, Memphis, TN, USA.

Quality Problem Or Issue: Night-shift medical providers frequently experience limited sleep resulting in fatigue, often because of paging activity. Streamlined medical-specific communication interventions are known to improve sleep and communication among these providers.

Initial Assessment: We found that non-urgent paging communication occurred frequently during night-shifts, leading to provider sleep disturbances within our institution. We tested a quality improvement (QI) intervention to improve paging practices and determined its effect on provider sleep.

Choice Of Solution: We used a Plan-Do-Study-Act QI model aimed at improving clinician sleep and paging communications.

Implementation: We initially conducted focus groups of nurses and physician trainees to inform the creation of a standardized paging intervention. We collected actigraphy and sleep log data from physicians, nurse practitioners, and physician trainees and performed electronic collection of paging frequency data.

Evaluation: Data were collected between December 2015 and March 2017 from pediatric residents, pediatric hematology/oncology (PHO) fellows, hospitalist medicine nocturnists and nurses working during night-shift hours in PHO inpatient units. We collected baseline data before implementation of the QI intervention and at 1 month post-implementation. Although objective measures and provider reports demonstrated improved medical-specific communication paging practices, provider sleep was not affected.

Lessons Learned: Provider-based standardization of paging communication was associated with improved medical-specific communication between nurses and providers; however, provider sleep was not affected. The strategies used in this intervention may be transferable to other clinics and institutions to streamline medical-specific communication.
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http://dx.doi.org/10.1093/intqhc/mzy221DOI Listing
October 2019

A Randomized Trial of Rapamycin to Increase Longevity and Healthspan in Companion Animals: Navigating the Boundary Between Protections for Animal Research and Human Subjects Research.

Am J Bioeth 2018 Oct;18(10):58-59

c Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, and University of Washington School of Medicine.

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http://dx.doi.org/10.1080/15265161.2018.1522166DOI Listing
October 2018

Ethical Considerations for Unblinding a Participant's Assignment to Interpret a Resolved Adverse Event.

Am J Bioeth 2018 Oct;18(10):66-67

b Johns Hopkins Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics.

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http://dx.doi.org/10.1080/15265161.2018.1522167DOI Listing
October 2018

The Work of ASBH's Clinical Ethics Consultation Affairs Committee: Development Processes Behind Our Educational Materials.

J Clin Ethics 2018 ;29(2):150-7

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.
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September 2018

Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service.

Oncologist 2018 12 4;23(12):1525-1532. Epub 2018 May 4.

St. Jude Children's Research Hospital, Memphis, Tennessee, USA.

Background: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored.

Materials And Methods: A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death.

Results: Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02;  = .002), hematologic malignancy (OR, 7.42;  < .0001), history of hematopoietic stem cell transplant (OR, 4.52;  < .0001), total number of PICU hospitalizations (OR, 1.98;  < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96;  = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7;  < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02;  < .0001) and documentation of advance directives at the time of death (OR, 0.37;  = .033).

Conclusion: Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.

Implications For Practice: Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.
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http://dx.doi.org/10.1634/theoncologist.2017-0650DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292533PMC
December 2018

An Extravagant Gift From a Grateful Patient.

Pediatrics 2018 06 4;141(6). Epub 2018 May 4.

Children's Mercy Bioethics Center, Children's Mercy Kansas City, Kansas City, Missouri

media-1vid110.1542/5787668327001PEDS-VA_2017-2837Gift giving is psychologically and culturally complex. In any context, a gift can have multiple meanings. In the context of the doctor-patient relationship, the giving of gifts and decisions about whether to accept gifts raise complex ethical issues. In this essay, a number of pediatric oncologists discuss the ethical considerations that should guide physicians as they decide how to respond to an extravagant gift from a family.
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http://dx.doi.org/10.1542/peds.2017-2837DOI Listing
June 2018