Biomedical subjects

Jennifer W Mack

Publications and source records attributed to Jennifer W Mack.

8 recordsLinked to original sources

PubMed2025

Optimizing participant and community engagement in cancer genomic sequencing research.

PURPOSE: We describe strategies implemented across research centers of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network to optimize engagement of participants and communities in cancer genomics research. We also present consensus definitions of engagement and engagement optimization, informed by our shared experiences in the Network. METHODS: Key informant interviews and a document review identified engagement and optimization strategies across PE-CGS research centers. Findings were synthesized using qualitative content analysis. Consensus on definitions of engagement and optimization were developed through iterative review by PE-CGS members. RESULTS: PE-CGS research centers adopted tailored strategies based on community needs and scientific gaps. Engagement strategies included community-based efforts (eg, advisory boards and newsletters) and participant-focused approaches (eg, enhanced informed consent and decision support tools). Optimization strategies leveraged scientific methods (eg, randomized controlled trials and surveys) to evaluate engagement. Engagement was described as the sustained and meaningful interactions between researchers, participants, and communities. Optimization was described as the application of scientific methods to refine and improve engagement and research processes and outcomes. CONCLUSION: Engagement and optimization strategies have informed research planning, conduct, and dissemination across PE-CGS. These approaches and definitions provide a foundation for developing evidence-based practices to strengthen participant and community involvement in cancer genomics research.

Humans↗

PubMed2006

Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information.

PURPOSE: Concerns about the harms of prognostic information, including distress and loss of hope, cause some physicians to avoid frank disclosure. We aimed to determine parent preferences for prognostic information about their children with cancer and the results of receiving such information. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. Our main outcome measure was parent rating of prognostic information as extremely or very upsetting. RESULTS: The majority of parents desired as much information about prognosis as possible (87%) and wanted it expressed numerically (85%). Although 36% of parents found information about prognosis to be extremely or very upsetting, those parents were more likely to want additional information about prognosis than those who were less upset (P = .01). Parents who found information upsetting were no less likely to say that knowing prognosis was important (P = .39), that knowing prognosis helped in decision making (P = .40), or that hope for a cure kept them going (P = .72). CONCLUSION: Although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents' desire for such information, its importance to decision making, or parents' sense of hope.

Adolescent↗

PubMed2006

Mucoepidermoid carcinoma of the parotid gland in children: A 10-year experience.

OBJECTIVE: To determine the presentation, pathologic features, treatment outcome, and prognosis of mucoepidermoid carcinoma of the parotid gland in children. DESIGN: Retrospective clinical and histopathologic study with institutional review board approval. SETTING: Tertiary pediatric medical center. PATIENTS: Seven children (4 girls and 3 boys) presented with mucoepidermoid carcinoma of the parotid gland between 1994 and 2004. MAIN OUTCOME MEASURES: Clinical presentation, pathologic features, treatment outcome, complications, local recurrence, distant metastasis, and overall survival. RESULTS: All patients presented with an asymptomatic parotid mass. Initial treatment in 7 patients included total parotidectomy (n = 3), superficial parotidectomy (n = 3), transoral enucleation (n = 1), and supraomohyoid neck dissection (n = 1). Four patients required additional surgical procedures because of a close and/or positive margin, including revision parotidectomy (n = 2), total parotidectomy (n = 1), superficial parotidectomy (n = 1), and supraomohyoid neck dissection (n = 1). One patient required postoperative radiation therapy. No evidence of local recurrence or distant metastasis was noted with a mean follow-up of 3.4 years. CONCLUSIONS: Mucoepidermoid carcinoma of the parotid gland is very rare in children. Clinical stage and histologic grade are the main prognostic factors. Complete excision (superficial or total parotidectomy) with preservation of facial nerve is the treatment of choice. Neck dissection should be considered when there is clinical evidence of regional metastasis, high TNM stage, high histologic grade, and involvement of regional nodes. Because of the possibility of long-term adverse effects in pediatric patients, radiotherapy should be used only in selected cases. Long-term follow-up is essential to rule out late recurrence.

Adolescent↗

PubMed2006

Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis.

PURPOSE OF REVIEW: Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these children. RECENT FINDINGS: Invasive and life-sustaining measures continue to be part of care for many children with life-threatening illnesses, even at the end of life. While these measures may seem reasonable when recovery is possible, they may not fit with a family's preferences for end-of-life care. One possible cause of the prevalence of invasive measures in children at the end of life is that complex illness trajectories in children make it difficult to predict the timing of death. Inadequate communication by clinicians can also lead to poor preparation for the end-of-life period. Early integration of palliative care allows for improved symptom management, parental adjustment, and preparation for the end-of-life care period. Families who have the opportunity to prepare for the end-of-life period, including learning what to expect, are more likely to feel that their care has been of high quality. Bereaved parents also recognize the value of talking about death with their children. SUMMARY: Early integration of palliative care can allow children and families to make decisions about care that fit with their values, and should become a standard of care for all children with life-threatening illnesses.

Bereavement↗

PubMed2005

Parent and physician perspectives on quality of care at the end of life in children with cancer.

PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted between 1997 and 2001 of 144 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) or Children's Hospitals and Clinics of St Paul and Minneapolis, MN, between 1990 and 1999 (65% of those located and eligible) and 52 pediatric oncologists. RESULTS: In multivariable models, higher parent ratings of physician care were associated with physicians giving clear information about what to expect in the end-of-life period (odds ratio [OR] = 19.90, P = .02), communicating with care and sensitivity (OR = 7.67, P < .01), communicating directly with the child when appropriate (OR = 11.18, P < .01), and preparing the parent for circumstances surrounding the child's death (OR = 4.84, P = .03). Parent reports of the child's pain and suffering were not significant correlates of parental ratings of care (P = .93 and .35, respectively). Oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR = 0.15, P = .01) and more than 10 hospital days in the last month of life (OR = 0.24, P < .01). Parent-rated communication factors were not correlates of oncologist-rated care. No association was found between parent and physician care ratings (P = .88). CONCLUSION: For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.

Adolescent↗

PubMed2004

The Day One Talk.

Explore the source record for details and available documents.

Attitude to Death↗

PubMed2003

Iatrogenic pleuropulmonary charcoal instillation in a teenager.

Activated charcoal given through a nasogastric tube is a standard intervention for many types of toxic ingestions in the emergency department. This case study describes a teenage girl whose multidrug overdose was complicated by accidental charcoal instillation into her left lung and pleural space through a misplaced nasogastric tube. The ensuing empyema did not respond to antibiotic therapy alone, probably due to the inherent properties of charcoal, and required a chest tube placement with continuous irrigation. Unlike previously reported cases, this patient did well clinically, without long-term morbidity.

Adolescent↗

PubMedDate not supplied

Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved?

Over twelve thousand children are diagnosed each year with cancer, and approximately 2200 children die each year from the disease. A percentage of these patients experiences escalating and intractable distress with symptoms that include pain, dyspnea, and agitation. These symptoms may continue for hours to days. Intractable symptoms of pain, agitation, and dyspnea can be very distressing to the patient, family, and staff and often a challenge for the physicians and nursing staff to treat. To meet this challenge, The Dana-Farber Cancer Institute/Children's Hospital Cancer Care Program has made it a priority to create a process of care that includes identifying barriers to care and the development of an end-of-life (EOL) rapid response model that includes guidelines and physician-templated orders for rapid escalation of opioids. The goal of this quality-improvement initiative was to develop a model of care that would enable the caregivers to provide effective comfort care to any patient experiencing symptoms of rapid escalation of pain, dyspnea, and agitation. A model of care was created to overcome barriers to care. The model includes role clarification, "Guidelines for the Management of Escalating Pain/Dyspnea/Agitation at the End of Life," and "Rapid Titration-Templated Physician Orders." Staff feedback was solicited relative to the content, format, and usability of the guidelines and templated orders. The physician and nursing staff reported that they found the templated orders and guidelines very helpful and effective and suggested only a few edits. A retrospective chart review is currently under way. The purpose of this chart review is to systematically document and compare the record of management of rapidly escalating symptoms of pain and/or dyspnea and/or agitation prior to and after instituting the EOL Rapid Response Model of Care. Care of the EOL patient experiencing symptoms of pain, dyspnea, and agitation is challenging. The EOL Rapid Response Model of Care outlines a process of care and provides recommendations and templated physician orders for rapid titration of opioids.

Analgesics, Opioid↗