Innovations for the integration of palliative care for hematologic malignancies.

Specialist palliative care provides additional support to facilitate living well with a serious illness, like cancer, even while pursuing disease-directed therapy. For patients with hematologic malignancies, integrated specialist palliative care improves symptom burden, mood, and quality of life, with benefits even extending to caregivers. Despite this, patients with hematologic malignancies continue to have significant unmet palliative care needs and typically access palliative care late in their disease trajectories, if at all. In this paper, we will define specialist palliative care and review its benefits for patients with hematologic malignancies. We will discuss the unmet palliative care needs of this patient population and the barriers to integrating palliative care and oncologic care. Finally, we will explore innovations and areas of future research to enhance and optimize palliative care integration into usual cancer care treatment for patients with hematologic malignancies. We will explore the importance of ongoing clinical trials that are examining the correct "dose" of palliative care; the use of technology and telehealth; and the use of novel treatments for this patient population. Together, we will consider innovative avenues to provide palliative care to patients with hematologic malignancies and their caregivers.

Palliative care for patients with hematologic malignancies: are we meeting patients' needs early enough?

INTRODUCTION: Palliative care for patients with cancer, and more recently for patients with hematologic malignancies, has increasingly been shown to be beneficial, with mounting evidence pointing to its vast benefits both to patients and caregivers. Despite this, there is a significant gap in integration of palliative care into usual cancer care for patients with hematologic malignancies. AREAS COVERED: In this paper, we will define palliative care and discuss its benefits broadly for patients with hematologic malignancies. We will then discuss the late access to palliative care, the unmet needs in this patient population, and some of the barriers to access to palliative care. EXPERT OPINION: With all this information and the clear benefit for early integrated palliative care for patients with hematologic malignancies, there is a need for novel models of palliative care and cancer care integration. Given the various needs of patients with different hematologic malignancies, we propose how palliative care can meet the unique needs of patients with hematologic malignancy by disease subtype.

Analysis of the functional sequences in the promoter region of the human adhesion molecule close homolog of L1.

BACKGROUND: Close Homolog of L1 (CHL1) is a member of the L1 family of cell adhesion molecules. CHL1 gene is located on human chromosome 3 and has been linked to several pathologies, including 3p deletion syndrome, schizophrenia, and tumor growth and metastasis. OBJECTIVE: The goal of the present study was to determine which region of the CHL1 promoter is most competent in driving CHL1 gene expression. Methods: Five candidate DNA fragments in the promoter regions were selected by screening across six species for evolutionary conserved sequences. The activity of these five promoter regions was quantitatively evaluated using a GFP reporter gene in transfection experiments, performed in C6 glioma cells. RESULTS: Of the five promoter regions tested, three drove reporter GFP expression, with the conserved region 6 (CR6, Gene ID AC066595.5, 25851-26850) being the most active for transcription. CONCLUSION: The identification of the CR6 activity provides a better understanding of the regulatory mechanisms underlying CHL1 expression. It may help future discovery of therapeutic strategies that involve influencing critical promoter regions to drive transcriptional regulation of the mammalian CHL1 gene.HIGHLIGHTSConserved regions of CHL1 promoter sequences were identified by in-silico analysis.Five conserved regions were tested for gene regulatory activity using a reporter assay.Conserved regions CR5, CR6 and CR7 show gene regulatory function in a reporter assay.Co-transfection of CR5 and CR6 yielded the highest reporter activity.The core region of CR6 (CR6core) was identified as a cis-acting element.In-tandem promoter CR5core-CR6core was the best in a reporter assay.

When to Integrate Palliative Care in the Trajectory of Cancer Care.

OPINION STATEMENT: Palliative care provides an extra layer of support to patients and families facing a serious illness. To date, several studies support the use of early, integrated palliative care for patients with cancer, based upon documented improvements in quality of life, symptoms, mood, satisfaction, utilization, and even overall survival. Despite this, patients with cancer continue to have unmet palliative care needs, and palliative care services are often engaged late in their care, if at all. Amid this under-utilization, questions remain about the optimal timing and nature of palliative care integration. To answer this question, we briefly review the evidence based for palliative care in oncology, and discuss three approaches to optimizing the timing of palliative care integration: (1) prognosis-based, (2) needs-based, and (3) trigger-based models. Prognosis-based models most closely mirror the approach of randomized trials to date, but are overly dependent on prognostication, and may miss patients with unmet needs who do not meet standard definitions of poor-prognosis disease. Needs-based models may better capture patients in a personalized manner, based on actual needs, but require sophisticated screening systems to be integrated into routine care processes, along with clinician buy-in. This may lead to excessive referrals, which strain the already limited palliative care workforce. As such, a blended, trigger-based approach may be best, allowing one to utilize certain disease-based and prognosis-based triggers for referral, plus screening of unmet needs, to identify those patients most likely to benefit from integrated palliative care when they need it most.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Hematologic Malignancies.

Hematologic malignancies differ in several important ways from solid organ cancers, and warrant a unique approach to palliative care (PC) integration. As PC has moved upstream from end-of-life care, PC clinicians are increasingly asked to see patients with hematologic malignancies. Unfortunately, many PC specialists have limited knowledge of these diseases, and have had few prior opportunities to participate in their care. This article, written by hematologic oncologists and PC specialists, seeks to educate PC teams about the unique features of hematologic malignancies, to inform effective integration of PC into the care of these patients, their caregivers, and treating hematologists.

Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes.

PURPOSE: Electronic medical records increasingly allow patients access to clinician notes. Although most believe that open notes benefits patients, some suggest negative consequences. Little is known about the experiences of patients with cancer reading their medical notes; thus we aimed to describe this qualitatively. METHODS: We interviewed 20 adults with metastatic or incurable cancer receiving cancer treatment. The semistructured qualitative interviews included four segments: assessing their overall experience reading notes, discussing how notes affected their cancer care experiences, reading a real note with the interviewer, and making suggestions for improvement. We used a constant comparison approach to analyze these qualitative data. RESULTS: We found four themes. Patients reported that notes resulted in the following: (1) increased comprehension; (2) ameliorated uncertainty, relieved anxiety, and facilitated control; (3) increased trust; and (4) for a subset of patients, increased anxiety. Patients described increased comprehension because notes refreshed their memory and clarified their understanding of visits. This helped mitigate the unfamiliarity of cancer, addressing uncertainty and relieving anxiety. Notes facilitated control, empowering patients to ask clinicians more questions. The transparency of notes also increased trust in clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients identified medical jargon and repetition in notes as areas for improvement. CONCLUSION: Most patients thought that reading notes improved their care experiences. A small subset of patients experienced increased distress. As reading notes becomes a routine part of the patient experience, physicians might want to elicit and address concerns that arise from notes, thereby further engaging patients in their care.

The impact of remission status on patients' experiences with acute myeloid leukemia (AML): an exploratory analysis of longitudinal patient-reported outcomes data.

PURPOSE: Shared decision-making in acute myeloid leukemia (AML) requires understanding patients' longitudinal experiences of illness, but little is known about the impact of remission status on patient-reported outcomes (PROs). We aimed to explore the association between remission status and PROs 6-12 months following induction chemotherapy. METHODS: Forty-two patients completed three validated instruments characterizing symptom burden (Patient Care Monitor v2.0), distress (NCCN Distress Thermometer), and QOL (FACT-Leu), as part of a longitudinal observational study. We used regression models to explore the relationship between remission status and PROs, and explore differences by initial disease type (de novo versus secondary/relapsed AML). RESULTS: Those with secondary or relapsed AML at study onset had marked impairments in all measures compared to de novo AML patients. After 6 months, their mean distress score was 4.8 (> 4.0 warrants intervention), they reported a mean of 14.1 moderate/severe symptoms and had a mean QOL score of 113.6, compared to 1.0, 1.7, and 155.2, respectively, for those with de novo AML (p < .0001). Similarly, patients in relapse had a mean distress score of 5.3, a mean of 12.8 moderate/severe symptoms, and a mean QOL score of 113.4, compared to 1.8, 5.7, and 143.8, respectively, among those in remission (p < .005). These patterns persisted after adjusting for baseline differences (p < .0001). CONCLUSION: Remission is associated with markedly better patient well-being in AML. Patients with secondary or relapsed AML face more severe symptom burden, distress, and QOL issues after induction. Interventions are needed to improve AML patients' experiences of illness.