Educational Priorities for Providing End-of-Life Care: Parent Perspectives.

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.

Enabling Precision Medicine in Cancer Care Through a Molecular Data Warehouse: The Moffitt Experience.

PURPOSE: The use of genomics within cancer research and clinical oncology practice has become commonplace. Efforts such as The Cancer Genome Atlas have characterized the cancer genome and suggested a wealth of targets for implementing precision medicine strategies for patients with cancer. The data produced from research studies and clinical care have many potential secondary uses beyond their originally intended purpose. Effective storage, query, retrieval, and visualization of these data are essential to create an infrastructure to enable new discoveries in cancer research. METHODS: Moffitt Cancer Center implemented a molecular data warehouse to complement the extensive enterprise clinical data warehouse (Health and Research Informatics). Seven different sequencing experiment types were included in the warehouse, with data from institutional research studies and clinical sequencing. RESULTS: The implementation of the molecular warehouse involved the close collaboration of many teams with different expertise and a use case-focused approach. Cornerstones of project success included project planning, open communication, institutional buy-in, piloting the implementation, implementing custom solutions to address specific problems, data quality improvement, and data governance, unique aspects of which are featured here. We describe our experience in selecting, configuring, and loading molecular data into the molecular data warehouse. Specifically, we developed solutions for heterogeneous genomic sequencing cohorts (many different platforms) and integration with our existing clinical data warehouse. CONCLUSION: The implementation was ultimately successful despite challenges encountered, many of which can be generalized to other research cancer centers.

The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic Pediatric Palliative Care Social Work During COVID-19.

This manuscript illuminates the nuanced ways in which the COVID-19 pandemic has impacted the pediatric palliative care social work role and clinical care in caring for children with life-limiting illnesses and their families throughout the country. The authors discuss memorable moments, logistical impacts, telehealth usage, decision-making experiences, end of life care, bereavement practices, specialized interventions, and self-care. The paper concludes with lessons learned and practical recommendations for the future.

Bibliotherapy and Bereavement: Harnessing the Power of Reading to Enhance Family Coping in Pediatric Palliative Care.

Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.

Comparison of advertising strategies between the indoor tanning and tobacco industries.

The indoor tanning industry is large and continues to grow, with 2007 domestic sales in excess of $5 billion. Advertising is central to shaping the consumer's perception of indoor tanning as well as driving industry demand. This article aims to identify key drivers of consumer appeal by comparing tanning advertising strategies to those used by tobacco marketers. Tobacco advertising was selected as a reference framework because it is both well documented and designed to promote a product with known health hazards. Two thousand advertisements from 4 large tobacco advertisement databases were analyzed for type of advertisement strategy used, and 4 advertising method categories were devised to incorporate the maximum number of advertisements reviewed. Subsequently, contemporary tanning advertisements were collected from industry magazines and salon websites and evaluated relative to the identified strategy profiles. Both industries have relied on similar advertising strategies, including mitigating health concerns, appealing to a sense of social acceptance, emphasizing psychotropic effects, and targeting specific population segments. This examination is a small observational study, which was conducted without rigorous statistical analysis, and which is limited both by the number of advertisements and by advertising strategies examined. Given the strong parallels between tobacco and tanning advertising methodologies, further consumer education and investigation into the public health risks of indoor tanning is needed.

GROalpha is highly expressed in adenocarcinoma of the colon and down-regulates fibulin-1.

PURPOSE: The growth-related oncogene alpha (GROalpha) is a secreted interleukin-like molecule that interacts with the CXCR2 G-protein-coupled receptor. We found that the mRNA and protein products of GROalpha are more highly expressed in neoplastic than normal colon epithelium, and we studied potential mechanisms by which GROalpha may contribute to tumor initiation or growth. EXPERIMENTAL DESIGN: Cell lines that constitutively overexpress GROalpha were tested for growth rate, focus formation, and tumor formation in a xenograft model. GROalpha expression was determined by Affymetrix GeneChip (241 microdissected colon samples), real-time PCR (n = 32), and immunohistochemistry. Primary colon cancer samples were also employed to determine copy number changes and loss of heterozygosity related to the GROalpha and fibulin-1 genes. RESULTS: In cell cultures, GROalpha transfection transformed NIH 3T3 cells, whereas inhibition of GROalpha by inhibitory RNA was associated with apoptosis, decreased growth rate, and marked up-regulation of the matrix protein fibulin-1. Forced expression of GROalpha was associated with decreased expression of fibulin-1. Expression of GROalpha mRNA was higher in primary adenocarcinomas (n = 132), adenomas (n = 32), and metastases (n = 52) than in normal colon epithelium (P < 0.001). These results were confirmed by real-time PCR and by immunohistochemistry. Samples of primary and metastatic colon cancer showed underexpression of fibulin-1 when compared with normal samples. There were no consistent changes in gene copy number of GROalpha or fibulin-1, implying a transcriptional basis for these findings. CONCLUSION: Elevated expression of GROalpha is frequent in adenocarcinoma of the colon and is associated with down-regulation of the matrix protein fibulin-1 in experimental models and in clinical samples. GROalpha overexpression abrogates contact inhibition in cell culture models, whereas inhibition of GROalpha expression is associated with apoptosis. Importantly, coexpression of fibulin-1 with GROalpha abrogates key aspects of the transformed phenotype, including tumor formation in a murine xenograft model. Targeting GRO proteins may provide new opportunities for treatment of colon cancer.