Patient Experience Research in Malignant Hematology: describing the lived experience of illness with acute myeloid leukemia Thomas W. LeBlanc, MD, MA, MHS, FAAHPM Associate Professor of Medicine Division of Hematologic Malignancies Director, Cancer Patient Experience Research Program (CPEP)
Outline Thought exercise epro data Quality and outcomes data in hematologic malignancies Novel interventions to address unmet needs 2
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Your Choices Intensive induction chemotherapy Low-dose chemotherapy Clinical trial Supportive care Hospice care 8
https://seer.cancer.gov/statfacts/html/amyl.html
MATRIX BLUE PILL RED PILL PIC 10
Markedly different risk Induction chemo = 30 days in the hospital Profound neutropenia for > 1 week Risk of invasive fungal infections, severe bacterial sepsis 2-5% risk of death from treatment Must be followed by several rounds of consolidation chemotherapy in order to cure Most patients are in and out of the hospital, develop various infections, and require intermittent transfusions Usually a 4-6 month process altogether 11
Outcomes age 60+ Wheatley, et al, BJH 2009 12
Juxtaposition Remission rates with initial induction chemo are 50-85%, depending on the situation this improves longevity and QoL, even if relapse is expected later Some patients are definitively CURED with these intensive regimens, especially those under age 60 The upfront focus on cure is often very appropriate 13
Long-term Survival age < 60 Schlenk RF, et al. N Engl J Med 2008;358:1909-1918. 14
What s Missing from the Story Patient issues: What s the patient experience like? How does it differ across the major treatment paradigms? What happens when it doesn t go well? What are their palliative care needs? Clinician issues: Why aren t more being referred to palliative care? What do the doctors think about palliative care? 15
Our Study Longitudinal, observational, mixed-methods approach Subjects: AML patients starting a new course of inpatient chemotherapy Setting: inpatient hematologic malignancies ward, Duke University Hospital Measures: 1. Electronic patient-reported outcomes (epros) Weekly while hospitalized; monthly thereafter 2. Semi-structured qualitative interviews At baseline, then quarterly thereafter 16
Assessments Symptoms by the Patient Care Monitor (PCM) v2.0 Validated 80-item (86 in women) review of systems assessment tool QoL by the FACT-Leu 27 items in FACT-G, across 4 QoL domains (emotional, physical, social, functional); +17 items in leukemia scale Distress by the NCCN Distress Thermometer Single question, 0 to 10 point scale associated questions about which issues are contributing to the distress (yes/no) 17
epro Symptom Assessments PCM 2.0 18
epro Distress Thermometer 19
de novo AML (N = 19) Secondary/Relapsed AML (N = 23) Total (N = 42) Age Mean (SD) 62.1 (14.3) 56.8 (12.5) 59.2 (13.5) Female, n (%) 9 (47.4) 11 (47.8) 20 (47.6) Marital status, n (%) Married 12 (63.2) 17 (73.9) 29 (69.0) Divorced 2 (10.5) 3 (13.0) 5 (11.9) Single 1 (5.3) 3 (13.0) 4 (9.5) Widowed 4 (21.1) 0 (0.0) 4 (9.5) Highest level of education completed, n (%) High school diploma or 8 (42.1) 6 (26.1) 14 (33.3) equivalent Some college 3 (15.8) 4 (17.4) 7 (16.7) Vocational-technical degree 2 (10.5) 1 (4.3) 3 (7.1) Associate s degree 1 (5.3) 6 (26.1) 7 (16.7) Bachelor s degree 1 (5.3) 3 (13.0) 4 (9.5) Graduate degree 4 (21.1) 3 (13.0) 7 (16.7) Race, n (%) Caucasian/white 18 (94.7) 19 (82.6) 37 (88.1) Black or African American 0 (0.0) 2 (8.7) 2 (4.8) American Indian/Alaska 0 (0.0) 1 (4.3) 1 (2.4) native Asian 1 (5.3) 0 (0.0) 1 (2.4) More than one race 0 (0.0) 1 (4.3) 1 (2.4) Ethnicity, n (%) Not Hispanic or Latino 19 (100.0) 23 (100.0) 42 (100.0) If relapsed, what is the number of prior treatment No relapse 19 (100.0) 13 (56.5) 32 (76.2) 1 0 (0.0) 1 (4.3) 1 (2.4) 2 0 (0.0) 5 (21.7) 5 (11.9) 3 or more 0 (0.0) 4 (17.4) 4 (9.5) Risk, n (%) Favorable risk 7 (36.8) 1 (4.3) 8 (19.0) Intermediate risk 2 (10.5) 6 (26.1) 8 (19.0) Adverse risk 10 (52.6) 16 (69.6) 26 (61.9)
Prevalent Moderate/Severe Symptoms Symptom Frequency Fatigue 48-83% Diarrhea 59-64% (weeks 2-3) Insomnia 32-44% Dry mouth 35-50% Fever 30-48% (weeks 2-4) Nausea 30-43% (vomiting <<10%) Pain 32-35% (weeks 2-3) Helplessness 18-26% Sadness/depression 17-26% 23
Kayastha N, et al. Supp Care Cancer, 2017 29
Kayastha N, et al. Supp Care Cancer, 2017 30
Kayastha N, et al. Supp Care Cancer, 2017 31
Typical Assumptions 1. Treatment-induced symptoms will improve in a few weeks regardless, so time is the best medicine 2. Oncologists already do a good job of managing acute treatment-related symptoms 3. Achieving remission is associated with feeling better overall 32
Challenging Assumptions These findings suggest that: 1. There are several distinct, treatable symptoms that occur predictably during induction 2. Symptoms are not all resolved by the 4 th week 3. Standard-of-care approaches leave patients with persistent symptoms during induction 4. Patients w/relapsed disease, or secondary/therapy-related AML do much worse 33
Targets for Intervention Feasible targets for intervention include: Diarrhea (weeks 2 and 3) Insomnia, throughout hospitalization Nausea throughout Dry mouth (and mouth sores) in weeks 2-4 Physical pain in weeks 2 and 3 Mood/distress 34
WHAT ACTUALLY HAPPENS 35
54% 36
81% 37
39% 38
43% 39
11 40
57,230 40,610 41
Unmet End-of-Life Needs in Hematologic Malignancies 81% Solid tumors Heme-malignancy Solid tumors All p-values < 0.001 54% 43% 47% 47% 39% 43% 33% 16% 14% 8% 4% ER visits Hospital admission Hospital death ICU admission ICU death chemo use Hui, et al. Cancer 2014
Outcomes: The Quality Measures Gap Patients with blood cancers are more likely to: 1,2 receive chemotherapy in the last 14 days of life spend time in an ICU in the last 30 days of life Patients with blood cancers are less likely to: access consultative palliative care services 3 use hospice services 4 Or, are more likely to die within 7 days of enrollment, or within 24 hrs of enrollment 5 Median LOS of 11 days, vs. 19 for solid tumors 5 1. Howell, DA, et al. Destined to die in hospital? Systematic review and meta-analysis of place of death in haematological malignancy. BMC Pall Care, 2010. 2. Hui, et al. Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study. Cancer 2014 3. Howell DA, et al. Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data. Palliat Med 2011. 4. Odejide, et al. Hospice use among patients with lymphoma: impact of disease aggressiveness and curability. JNCI, 2015. 5. LeBlanc TW, Abernethy AP, Casarett DJ. What Is Different About Patients With Hematologic Malignancies? A Retrospective Cohort Study of Cancer Patients Referred to a Hospice Research Network. Journal of Pain and Symptom Management, 2014 43
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What the literature tells us 1. Unique barriers to EOL care 2. Clinicians are different 3. Hospice doesn t work well in hematology 45
Blood Cancers are Different Remarkable prognostic heterogeneity (uncertainty) Some entirely curable with chemotherapy Others more like chronic, indolent diseases; More likely to die of something else Some confer a dismal prognosis, yet cure remains possible When curative-intent treatments do not work, much misery may result Sometimes almost kill to cure LeBlanc TW, JOP 2014 46
Unique Barriers to EOL Care Identifying the end-of-life phase is more difficult 1 Survey data on heme docs perspectives about barriers to EOL care: 2 Unrealistic patient expectations (97.3%) Clinician concern about taking away hope (71.3%) Unrealistic clinician expectations (59%) 1. Odejide O, et al. End-of-life care for patients with blood cancers: a series of focus groups with hematologic oncologists. JOP 2014 2. Odejide O, et al. Barriers to quality end-of-life care for patients with blood cancers. JCO, 2016 47
The Doctors are Different Survey of 120 hematologic and 120 solid tumor oncologists at MD Anderson Heme docs more likely to: Favor systemic therapy with moderate toxicity and no survival benefit Have a sense of failure with dz progression Heme docs less comfortable discussing: death and dying Hospice referral Hui D, et al. Differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor oncology specialists. The Oncologist, 2014. 48
The Doctors are Different 3 tertiary centers w/ established PC programs Surveys and semi-structured interviews to better understand barriers to PC referral 66 interviewees; 23 heme, 43 solid tumor Most blood cancer specialists viewed palliative care as just end-of-life care, or hospice Frequent concerns about philosophical issues: non-palliative goals, not wanting another clinician to intrude on the patient-doctor relationship, etc. LeBlanc TW, et al. Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study. Journal of Oncology Practice, 2015. 49
Hospice Doesn t Work for Us National survey study of 349 hematologic oncologists Key messages: Hospice care is helpful overall (68.1%) Home hospice care is inadequate for blood cancer patients needs (46%) >50% said they would be more likely to refer patients to hospice if transfusions were more available Odejide O, et al. Cancer, 2017.
LeBlanc and El-Jawahri. ASH Education Book, 2015 51
DOES PALLIATIVE CARE WORK IN HEMATOLOGY? 52
Yoong JAMA IM 17(34) 2013
Different Focus Patients talk about different things with their oncologist than they do with their palliative care specialist Three primary foci of palliative care visits in oncology: 1. Symptom management 2. Engaging patients in emotional work 3. Serving as communication bridge Back AL, et al. Clinician roles in early integrated palliative care for patients with advanced cancer: a qualitative study. Journal of Palliative Medicine, 2014. 54
Unmet Symptom Needs in Hematologic Malignancies 50% 33% 36% 41% Heme-Malignancy Metastatic Solid Cancer Feeling nervous Irritable Feeling sad Feeling worried Manitta V, et al. The symptom burden of patients with hematological malignancy: a cross-sectional observational study. JPSM 2011.
Symptom Burden Manitta V, et al. The symptom burden of patients with hematological malignancy: a cross-sectional observational study. JPSM 2011. 56