Sunday, 21 April 2019

Quality of Life – Managed Markets Network

Updates from the annual ASH meeting, December 2018.

Integrating Contemporary Palliative Care in the Treatment of Blood Cancers

Surabhi Dangi-Garimella, PhD

“Placing patients in the context of his or her family” and “caring for the living” were how palliative care was defined by one of the speakers participating in the Special Symposium on Quality at the 60th American Society of Hematology Annual Meeting & Exposition, held December 1-4, 2018, in San Diego, California. The speakers were tasked with reviewing the difference in the quality of symptom management, palliative care, and end-of-life (EOL) care delivered to patients with blood cancer and patients with other life-threatening illnesses.

Integrated palliative care, which combines care coordination for comorbidities, behavioral health issues, and EOL care, was proved to lend both symptom control and psychosocial support.1 However, these services are not always readily accessible to patients, especially in rural areas and among populations with sparse access to medical care. Organizations like Project ECHO (Extension for Community Health Outcomes) are working to fill this gap.2

Additionally, controversy persists on whether patients with liquid cancers receive appropriate symptom management or whether they receive higher-intensity care, such as chemotherapy in the few weeks prior to death or a low hospice referral. Questions have also been raised over measuring the quality of symptom management and palliative care.

Palliative care is traditionally defined as “interdisciplinary care focused on improving the quality of life for persons of any age who are living with any serious illness, and for their families,” said Anthony O’Brien, MB, FRCPI, medical director of Marymount Hospice and consultant physician in palliative medicine at Cork University Hospital, Ireland, who was the first presenter.

Quality-of-life (QOL) is multifaceted and dynamic and changes over time. The traditional definition embraces patients of all ages and places the patient in the context of his or her family, O’Brien said.

O’Brien shared the clinical practice guidelines for quality palliative care, which he said are focused on life rather than death. The guidelines are:

  • Have a family-centered approach to care
  • Focus on physical, functional, psychological, practical, and spiritual consequences of a serious illness
  • Build on the belief that early integration of palliative care improves QOL for patients and their families

“This is not a sequential approach, rather an integrated/concurrent model of care, alongside potentially curative treatment” that the patient is receiving, he added, defining palliative care as caring for the living rather than caring for a bodily organ, age, or lack of response to treatment.

“Beyond evidence-based medicine, palliative care is a model of interpersonal medicine that is effective and has narrative competence, where we try to understand the patient’s narrative,” O’Brien said. Pointing out that several organizations, including the American Society of Clinical Oncology, are committed to integrating palliative care in the main frame of healthcare systems, he added that such integration is extremely beneficial to patients within the context of their QOL, mood, satisfaction with care, symptom burden, and “sometimes survival.”

O’Brien concluded his talk by highlighting the discomfort of treating physicians in broaching this discussion, as was documented by a study that interviewed hematologists on the topic.3 The authors found that despite the positive attitude toward palliative care, barriers included difficulty with defining the role of specialist palliative care services, which resulted in referral timing being determined by their personal confidence in providing EOL care. Additionally, the participating physicians indicated the lack of an inpatient palliative care unit as a barrier to offering palliative care to their patients. O’Brien firmly believes that families must plan for dying the same way they plan for the birth of a child, and he is a strong proponent of a frank dialogue between physicians and patients.

When it comes to measuring the quality of palliative services, however, Kelly Marie Trevino, PhD, assistant attending psychol- ogist at Memorial Sloan Kettering Cancer Center, wondered whether existing measures are meaningful and sufficient to fulfill patient needs. Trevino believes that quality measures can be used to evaluate the processes being implemented throughout the administration of care, not just toward EOL.

Although the National Quality Forum’s focus for quality of palliative care includes safety, benefit, equity, timeliness, patient-cen- teredness, and efficiency of care, Trevino listed the measures that care providers currently use:

  • Pain management: pain screening, pain assessment, patients treated with an opioid given a bowel regimen, and patients with advanced cancer assessed for pain during outpatient visit, with documentation of a discussion of spiritual/religious concerns that patients/caregivers did not want to mention
  • Dyspnea management: dyspnea screening and treatment
  • Care preference measures: patients in the intensive care unit who have documented care and treatment preferences
  • Quality of care with EOL measures: comfortable dying, hospitalized patients who die an expected death with an implantable cardioverter defibrillator that has been deactivated, family evaluation of hospice care, and bereaved family survey

Providing an update on where the field currently stands, Trevino said that some of the existing quality measures are acceptable, but gaps persist. She particularly pointed out gaps in EOL care measures and the importance of patient-reported outcomes in this process, which she said are often underutilized in healthcare.

“There is inadequate attention to the disease trajectory as well. So, integration of palliative care from the beginning of treatment to EOL is important.”


  1. Meyers FJ, Linder J, Beckett L, Christensen S, Blais J, Gandara DR. Simultaneous care: a model approach to the perceived conflict between investigational therapy and palliative care. J Pain Symptom Manage. 2004;28(6):548-556.
  2. Arora S, Smith T, Snead J, et al. Project ECHO: an effective means of increasing palliative care capacity. Am J Manag Care. 2017;23(SP7):SP267-SP271.
  3. Wright B, Forbes K. Haematologists’ perceptions of palliative care and specialist palliative care referral: a qualitative study. BMJ Support Palliat Care. 2017;7(1):39-45. doi: 10.1136/ bmjspcare-2014-000689.

Treating R/R CLL With Ibrutinib Alongside CAR T-Cell Therapy Reduces Toxicity, Findings Show
AJMC Staff

Patients with relapsed or refractory (R/R) chronic lymphocytic leukemia (CLL) may have a new treatment option with chimeric antigen receptor (CAR) T-cell therapy, and for patients who have already been treated with ibrutinib, continuing the targeted therapy may decrease cytokine release syndrome (CRS), based on results presented at the 60th American Society of Hematology Annual Meeting & Exposition, December 1-4, 2018, in San Diego, California.

Researchers led by Jordan Gauthier, MD, treated a total of 43 patients, starting with 24 patients with CLL were treated with ibrutinib until their condition worsened and the targeted therapy was stopped. These patients were then treated with JCAR014, a CAR T-cell therapy being developed by Juno Therapeutics.

Then, the research team treated a second cohort of 19 patients with ibrutinib; this group was similar in age and level of disease as the first group. The second cohort started ibrutinib and stayed on it during CAR T-cell therapy and for 3 months afterward.

Gauthier and his colleagues reported the following results:

  • 83% of the patients who took ibrutinib alongside CAR T-cell therapy had either a complete or partial response.
  • 59% of the patients who took ibrutinib prior to CAR T-cell treatment, but stopped beforehand, had a complete or partial response to therapy.
  • Administration of ibrutinib and JCAR014 was well-tolerated in most patients; ibrutinib was reduced or discontinued in 6 patients (35%) at a median of 21 days after the start of CAR T-cell infusion.
  • One patient in the cohort taking ibrutinib with CAR T-cell therapy died due to fatal cardiac arrhythmia. One patient in the cohort that stopped ibrutinib before CAR T-cell therapy died from severe CRS and neurotoxicity.
  • Although the percentage of patients with grade 1 CRS was the same between the 2 groups, the number was 26% higher in the group that stopped ibrutinib before CAR

    T-cell therapy.1

The authors said results must be confirmed in a larger study, but they expressed optimism with the findings. “To our knowledge, these are the most encouraging results that have been seen to date in humans with a combination of CAR T cells and a targeted agent,” Gauthier said in a press briefing.2 “While the CAR T cells expanded robustly in both groups and led to high rates of response, we did not observe a single case of severe CRS in patients receiving ibrutinib during CAR T therapy.”


  1. Gauthier J, Hirayama AV, Hay KA, et al. Efficacy and toxicity of CD19 CAR-T cells alone or in combination with ibrutinib for relapsed and/or refractory CLL. Presented at 60th American Society of Hematology Annu- al Meeting; December 1-4, 2018; San Diego, California. Abstract 299.
  2. ASH 2018: Concurrent ibrutinib may improve outcomes, reduce toxicity of CAR T-cell therapy in relapsed or refractory CLL. The ASCO Post.″ . Published December 2, 2018. Accessed December 18, 2018.

Teens, Young Adults With Public Insurance Linked to Worse Outcomes in Leukemia, Lymphoma
AJMC Staff

Adolescents and young adults (AYAs), defined as those 15 to 39 years of age, have not seen the same improvement in cancer survival as other age groups in recent decades. In addition, being uninsured or on public insurance, such as Medicaid, has been associated with worse overall survival than having commercial insurance.

Authors from the University of California, Davis, presented a study at the 60th American Society of Hematology Meeting & Exposition, held in San Diego, California, linking Medicaid to the California Cancer Registry to take a fresh look at these interrelated issues The research team identified AYAs diagnosed with non-Hodgkin lymphoma (NHL), Hodgkin lymphoma, (HL) acute lymphocytic lymphoma (ALL), and acute myeloid lymphoma (AML) between 2005 and 2014. These patients were classified by what type of insurance they had, including whether they had Medicaid at diagnosis or whether they were not in Medicaid and had to enroll after their received their diagnosis.

Of the 11,667 patients in the study, 4435 had NHL, 4161 had HL, 1549 had ALL, and 1522 had AML. Private insurance was most common among those with HL (66%) and NHL (60%), followed by AML (50%) and ALL (37%). Of the participants, 4059 had Medicaid, including 41% of this group who had been enrolled continuously, 43% who were enrolled upon diagnosis, and 15% who were not enrolled continuously throughout treatment. According to the authors, only 2% to 4% of patients, depending on diagnosis, remained uninsured.


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