What Do Patients Think about Palliative Care? a National Survey of Hematopoietic Stem Cell Transplant Recipients

Abstract Background: Palliative care (PC) benefits patients with cancer and those undergoing hematopoietic stem cell transplantation (HSCT), but remains under-utilized in HSCT. While transplant physicians have substantial concerns regarding how patients perceive PC, studies examining HSCT recipients' perceptions of PC are lacking. Methods: Between 11/2020-4/2021, the CIBMTR Survey Research Group conducted a multi-site cross-sectional survey of adult autologous and allogeneic HSCT recipients at 11 transplant centers in the United States who were 3-12 months post-transplant to assess their experience, knowledge, and perceptions of PC. Using validated questionnaires, we assessed patients' familiarity with PC, knowledge and perception of PC, unmet PC needs, quality of life, and symptom burden. We computed a composite score of patients' perceptions of PC (mean = 48.8, SD = 12.2). We used a generalized linear regression model to examine factors associated with patients' perceptions of PC. Results: Of 359 potentially eligible patients, 250 (69.6%) enrolled in the study and 249 were eligible for analysis. Median participant age was 58.1 years (IQR 16.6). Most were white (85.9%), non-Hispanic or Latino (95.2%), and male (53.0%). Overall, 63.1% underwent autologous HSCT. The most common diagnoses were multiple myeloma (42.2%), lymphoma (22.1%), leukemia (16.9%), and MDS/MPN (12.4%). Overall, 44.2% (110/249) of patients reported limited knowledge about PC and 51.0% (127/249) endorsed being familiar with PC. Most patients stated that when they hear the term PC, they feel hopeful (54%), and reassured (50%) while a minority reported feeling scared (21%), stressed (22%), or depressed (15%) [Figure 1]. Most endorsed that when a PC referral is suggested for them, they think their doctor really cares about what is happening to them (83%), and only 7% of patients stated that when a PC referral is suggested, they think their doctor has given up on them [Figure 2]. In multivariate analyses, patients who were more knowledgeable about PC were more likely to have a positive perception of PC (B = 7.54, SE=1.61, P < 0.001) compared to those who had less knowledge about PC. Patients with postgraduate education were more likely to have a negative perception of PC (B = -5.55, SE=2.60, P = 0.034) compared to those with high school education or less. Patients' demographics, HSCT type, diagnosis, unmet PC needs, quality of life, and symptom burden were not statistically significantly associated with their perceptions of PC. Conclusions: A substantial proportion of HSCT recipients report limited knowledge and familiarity with PC. Most patients reported positive perceptions of PC, and those who were more knowledgeable about PC were more likely to have positive perceptions of PC. These data do not support transplant physicians' concerns about how patients perceive PC and underscore the need for future interventions to further educate patients about PC to overcome barriers to PC utilization in HSCT. Figure 1 Figure 1. Disclosures Burns: Astellas Pharma Inc.: Research Funding; Medac GmbH: Research Funding; Sanofi: Research Funding; OncoImmune: Research Funding; Fate: Research Funding; Bristol Meyers Squibb: Research Funding; PrioThera: Research Funding; Kyowa Kirin International: Research Funding. Murthy: CRISPR Therapeutics: Research Funding. LeBlanc: Amgen: Consultancy, Other: travel; Pfizer: Consultancy, Other: Advisory Board; AstraZeneca: Consultancy, Honoraria, Other: Advisory board, Research Funding; Flatiron: Consultancy, Other: Advisory board; Agios: Consultancy, Honoraria, Other: Advisory board; Travel fees, Speakers Bureau; BMS/Celgene: Consultancy, Honoraria, Other: Travel fees, Research Funding, Speakers Bureau; Daiichi-Sankyo: Consultancy, Honoraria, Other: Advisory board; AbbVie: Consultancy, Honoraria, Other: Advisory board; Travel fees, Speakers Bureau; Helsinn: Consultancy, Research Funding; Duke University: Research Funding; Jazz Pharmaceuticals: Research Funding; UpToDate: Patents & Royalties; NINR/NIH: Research Funding; CareVive: Consultancy, Other, Research Funding; Otsuka: Consultancy, Honoraria, Other; American Cancer Society: Research Funding; Seattle Genetics: Consultancy, Other: Advisory board, Research Funding; Astellas: Consultancy, Honoraria, Other: Advisory board; Heron: Consultancy, Honoraria, Other: advisory board.

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Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation

JAMA ◽

10.1001/jama.2016.16786 ◽

2016 ◽

Vol 316 (20) ◽

pp. 2094 ◽

Cited By ~ 136

Author(s):

Areej El-Jawahri ◽

Thomas LeBlanc ◽

Harry VanDusen ◽

Lara Traeger ◽

Joseph A. Greer ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Stem Cell ◽

Hematopoietic Stem Cell Transplantation ◽

Stem Cell Transplantation ◽

Cell Transplantation ◽

Hematopoietic Stem Cell ◽

Hematopoietic Stem

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Are families the barrier? Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.112 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 112-112

Author(s):

Deena R. Levine ◽

Justin N. Baker

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Stem Cell ◽

Hematopoietic Stem Cell ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Cell Transplant ◽

Hematopoietic Stem ◽

Early Integration

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.

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Decreased Physical Activity in Autologous Stem Cell Recipients Leads to Reduced QOL Scores during Hospitalization

Blood ◽

10.1182/blood-2018-99-112149 ◽

2018 ◽

Vol 132 (Supplement 1) ◽

pp. 5895-5895

Author(s):

Candice Baldeo ◽

Yenny Moreno Vanegas ◽

Sharad Khurana ◽

Madiha Iqbal ◽

Abdel-Ghani Azzouqa ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Stem Cell ◽

Hematopoietic Stem Cell Transplantation ◽

Hematopoietic Stem Cell ◽

Research Funding ◽

Severe Neutropenia ◽

Hematopoietic Stem ◽

Activity Tracker

Abstract INTRODUCTION: Autologous hematopoietic stem cell transplantation can heavily impact the quality of life (QOL) of an individual. However, this procedure may be the only hope for a cure or a longer life for some individuals. When these patients develop severe neutropenia during transplantation, protective isolation is recommended to reduce the risk of infection. During protective isolation, patients may be confined to their hospital room which can decrease their physical activity. For autologous hematopoietic stem cell receipts (AHSCR), severe neutropenia may last several days to weeks. During this time, patients often experience social isolation, emotional encumbrances and also physical deconditioning.Data is inconsistent whether protective isolation does reduce the incidence of infections. In this study, we sought to investigate the impact of physical activity during hospitalization on Quality of Life in AHSCR with severe neutropenia using the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) questionnaire. METHODS: We conducted a prospective observational study of 15 patients admitted to Mayo Clinic Florida during November 2017 to May 2018 for autologous hematopoietic stem cell transplantation, wherein we monitored the activity of each patient during hospitalization by recording the number of steps taken each day by using an activity tracker worn by the patient. Informed consent was obtained on admission before enrolling patients. Patients completed a Quality of Life (QOL) questionnaire (FACT-BMT version 4) on admission and prior to discharge from the hospital. RESULTS: Of the 15 patients that were enrolled, 5 walked ≤ 100 steps/day (group A, median, 71) and 10 walked > 100 steps/day (group B, median, 406). While there was no difference in the median time to engraftment and length of hospital stay, the mean QOL score decreased from 89.2 on admission to 81.4 on discharge in less active neutropenia patients compared to the ones who were more active. (Table 1; Figure 1) CONCLUSION: Lack of physical activity decreases QOL in AHSCR. During hospitalization, AHSCR should be encouraged to increase their activity to improve QOL. Having an activity tracker may make it easier for patients to monitor their activity, and thus lead to a better QOL. Figure. Figure. Disclosures Sher: Affimed: Research Funding. Ailawadhi:Pharmacyclics: Research Funding; Janssen: Consultancy; Takeda: Consultancy; Amgen: Consultancy; Celgene: Consultancy.

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