scholarly journals Myelodysplastic Syndromes: Have You Seen Your Patient Beyond His Hemoglobin?

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4660-4660
Author(s):  
Raíssa Pires Camargo Ebert ◽  
Mariana Munari Magnus ◽  
Cristina Bueno Terzi ◽  
Antonio Luis Eiras Falcão ◽  
Fernando Ferreira Costa ◽  
...  
Keyword(s):  
End Of Life ◽  
Myelodysplastic Syndromes ◽  
Household Income ◽  
Laboratory Data ◽  
Great Part ◽  
International Prognostic Scoring System ◽  
Team Approach ◽  
Asymptomatic Patients ◽  
Edmonton Symptom Assessment Scale

Abstract Background: Palliative care (PC) is a patient-centered care model that aims to relief suffering by establishing a plan of care that integrates physical, psychosocial, cultural, familial and spiritual issues during the course of disease's evolution. Thus, PC applies not only to patients who face a diagnosis beyond the possibility of cure, but to all those who experience significant symptoms throughout the course of the disease. Myelodysplastic syndromes (MDS) are a heterogeneous group of myeloid neoplasms characterized by cytopenias and an elevated risk of developing acute leukemia. As MDS display a wide genetic heterogeneity, patients have a variable clinical presentation, ranging from asymptomatic patients to individuals with severe cytopenias and high-risk disease. MDS are more prevalent in the elderly population, which usually experience several morbidities; thus, MDS frequently lead to notable symptoms and deterioration of quality-of-life, making most of them eligible to PC in addition to standard hematologic care. In spite of that, previous studies demonstrated that patients with hematologic malignancies appear to have restricted access to PC services and receive more aggressive therapies at the end of life. Aims: To evaluate eligibility criteria for PC in a cohort of MDS patients and correlate with clinical and laboratory data. Methods: Clinical and demographic data of MDS patients were collected through interviews using a standardized questionnaire: time from diagnosis, number of morbidities, need for seeking the emergency during the last 12mo, delirium events, wounds, dysphagia, recurrent falls, adverse events to medication, quality of communication with the medical team, fears regarding the disease and its complications, religious support, age, gender, monthly household income and level of schooling. Specific PC scores were also applied: Edmonton Symptom Assessment Scale (ESAS) and Palliative Performance Scale (PPS). Clinical and laboratory data were collected: hemoglobin (Hb), platelet and neutrophil counts, Revised International Prognostic Scoring System (IPSS-R) and transfusion burden. Statistical univariate and multivariate analysis were performed. P value <.05 was considered statistically significant. This research was approved by the Institutional and National Review Board; written informed consent was obtained from all subjects. Results:Thirty-six patients were evaluated: median age 68y (21-90), sex 16F/20M. According to ESAS, tiredness and anxiety were the most relevant symptoms in MDS patients [median (min-max)]: pain 0 (0-10), tiredness 4.5 (0-10), drowsiness 1.5 (0-10), nausea 0 (0-7), lack of appetite 0 (0-10), shortness of breath 0 (0-10), depression 0 (0-10), anxiety 3.5 (0-10), best wellbeing 2.5 (0-8). Younger patients (<60y, n=10) had a worse ESAS for best wellbeing (5 (2-8)) when compared to older individuals (≥60y, n=26): (2 (0-7)), p=.007, and tended to have worse ESAS scores for tiredness: 8.5 (0-10) vs 3.5 (0-10), p=.56. Importantly, ESAS for tiredness was not correlated to Hb levels, the number of red blood cell transfusions nor with IPSS-R (all p>.05). ESAS for drowsiness was significantly higher in patients with two (5 (0-10)) and ≥three morbidities (3 (0-8) vs those with only one morbidity (0 (0-10)): p=.01 and p=.03, respectively. ESAS for best wellbeing was better in individuals with higher household income 0 (0-0) vs patients with lower financial resources 3 (0-7), p=.04). PPS median was 90% (60-100%) and negatively correlated with transfusion burden (r=0.407, p=.01) and with the need for seeking the emergency in the past 12mo (r=-0.332, p=.04). Finally, despite facing a potential life-threatening disease, 94.4% of the patients reported that their doctors had never talked to them about aspects related to end-of-life care. Conversely, 75% of them reported fears and doubts regarding this phase. Conclusions: In our casuistic of MDS patients, tiredness was the most important symptom observed. Surprisingly, it was not correlated with Hb levels and transfusion burden, suggesting that Hb levels alone should not be used to justify symptoms. The number of morbidities and lower household income also impacted ESAS scores. Finally, a great part of the patients revealed miscommunication with their hematologists regarding end-of-life planning. Our data indicate that MDS patients might benefit from a PC multidisciplinary team approach. Disclosures Costa: Novartis: Consultancy.

Quality of End-of-Life Care for the Myelodysplastic Syndromes: Findings from a Large National Database

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3287-3287
Author(s):  
Sean A. Fletcher ◽  
Angel M. Cronin ◽  
Amer M. Zeidan ◽  
Oreofe O. Odejide ◽  
Steven D. Gore ◽  
...  
Keyword(s):  
Marital Status ◽  
End Of Life ◽  
Solid Tumors ◽  
Myelodysplastic Syndromes ◽  
Research Funding ◽  
National Database ◽  
Icu Admission ◽  
Eol Care ◽  
Over Time

Abstract Background: End-of-life (EOL) care has been shown to be more intensive for blood cancers compared to solid tumors (e.g. Hui, Cancer, 2014); however, data are sparse regarding predictors of intensive care unit (ICU) use in the last 30 days of life and hospice enrollment among patients with specific hematologic malignancies. Moreover, little is known about EOL care specifically for the myelodysplastic syndromes (MDS), which are distinguished among the blood cancers by their relative indolence in many patients and high rate of transfusion dependence. Methods: We conducted a retrospective analysis using the Surveillance Epidemiology and End Results (SEER)-Medicare database. Patients ≥ 65 years of age who had a primary diagnosis of MDS between 2006 and 2011, lived for at least 30 days after their diagnosis, and died prior to December 31, 2012 were eligible for inclusion. Outcomes were two well-established quality measures for EOL care in oncology (Earle, JCO, 2003; Keating, Cancer, 2010): ICU admission within the last 30 days of life (an indicator of poor quality), and enrollment in hospice for any length of time (an indicator of good quality). After determining their overall prevalence, we fit multivariable logistic regression models to investigate sociodemographic and clinical associations (see table) with each outcome. Results: A total of 6,955 MDS patients were eligible. Overall, 28% were admitted to the ICU in the last month of life, and 49% had enrolled in hospice. In multivariable analyses, transfusion-dependent patients were more likely to be admitted to the ICU and less likely to enroll in hospice (both p<0.001). There was no significant association with marital status or time from diagnosis to death for either outcome. Patients who died in later years had a higher prevalence of ICU admissions (p=0.05) and were more likely to enroll in hospice (p<0.001). Additional multivariable associations are shown below. *Adjusted for all variables listed as well as marital status and time from diagnosis to death Conclusions: Only about half of the MDS patients in our cohort were enrolled in hospice; however, the odds of enrollment increased over time. Interestingly, the odds of ICU admission within the last 30 days of life also increased over time, a trend that has been seen in solid tumors (e.g. Wright, JCO, 2014). As bone marrow failure in MDS can lead to reversible sepsis and the need for temporary blood pressure support, it is difficult to determine if this trend truly represents a worsening in quality of EOL care. Finally, our finding that transfusion-dependent MDS patients were less likely to receive hospice suggests that one reason for suboptimal enrollment is that the current hospice model-which largely disallows transfusions-is not meeting the specific palliative needs of this population. Table 1. Table 1. Disclosures Gore: Celgene: Consultancy, Honoraria, Research Funding. Davidoff:Celgene: Consultancy, Research Funding. Steensma:Incyte: Consultancy; Amgen: Consultancy; Celgene: Consultancy; Onconova: Consultancy.

Quality of Life in Myelodysplastic Syndromes and Physicians' Perception.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 3822-3822
Author(s):  
Esther Natalie Oliva ◽  
Valeria Santini ◽  
Poloni Antonella ◽  
Vincenzo Liso ◽  
Daniela Cilloni ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Myelodysplastic Syndromes ◽  
Conflicts Of Interest ◽  
Univariate Analysis ◽  
Laboratory Data ◽  
Well Being ◽  
Prognostic Scores ◽  
Experimental Drugs ◽  
Therapeutic Choice

Abstract Abstract 3822 Poster Board III-758 BACKGROUND The heterogeneous nature of myelodysplastic syndromes (MDS), age- and disease-related factors (complications and progression to acute leukemia) are associated with the complexity of quality of Life (QoL). Patients are offered mainly non-curative or experimental drugs and/or supportive care. The exploration of QoL in MDS is a prerequisite for adequate therapeutic choice. METHODS We designed an observational study in MDS patients with IPSS risk score ≤2 to evaluate determinants of QoL and its correlates. Clinical and laboratory data were collected up to 18 months and QoL instruments (QOL-E v.2, LASA scale, and EQ-5D) were completed by patients and physicians (both blind to each other's responses) at baseline, months 1, 3, 6, 12, and 18. After diagnosis, treatment was assigned based on investigators' judgment. RESULTS Of 148 patients enrolled (mean age 72 years, 56% males), 115 (78%) patients were anemic at diagnosis and 38 (26%) had already received transfusions. Mean (± SD) Hb was 10.3 ± 2.1, ANC 2.3 ± 1.9×103/μL and PLT count 155 ± 118×103/μL. Charlson's Comorbidity Score was > 1 in 33 (22%). Physical and functional QoL, health, energy, activity and general states were generally poor (<65). In 94 cases ECOG PS was assigned a 0 (best) value, though 36 patients had a physical QoL-E score < 60. Surprisingly, there were significant correlations between patients' and physicians' QoL-E scores in all but those regarding the disturbances due to dependency on hospital and staff and to the inability to travel. However, MDS-specific well-being was systematically overestimated by physicians in the MDS-specific domain (p<0.0001). After 12 months, 94 patients have completed the QoL instruments. There was a transient increase in Hb with parallel changes in QoL and no significant change at 12 months (only MDS-specific QoL-E scores worsened from 79 ± 17 to 73 ± 22, p=0.005). At univariate analysis, Hb correlated with all QoL-E and LASA activity scores at baseline. After 12 months, Hb correlated with social, fatigue, MDS-specific, health status and LASA scales, while transfusion dependence with MDS-specific QOL-E scores (p<0.01). At multivariate analysis (Table), major determinants of QoL at baseline were comorbidities, IPSS, and Hb; at 12 months QoL was independently predicted by age, comorbidities, transfusion-dependence and mainly by Hb, while thrombocytopenia (PLT < 50000 microliters) and neutropenia did not seem to have a relevant impact. CONCLUSIONS QoL, together with prognostic scores, should guide therapeutic choice in MDS. Avid research in MDS tends to focus on younger and fit patients to offer more aggressive or novel therapies with the aim of increasing survival. However, patients of advanced age with comorbidities complicated with severe anemia and transfusion-dependence represent a fragile category with particularly poor QoL that actually require special therapeutic attention to favor transfusion-independence and possibly an hemoglobin response. Disclosures: No relevant conflicts of interest to declare.

Integrating Frailty, Comorbidity, and Quality of Life in the Management of Myelodysplastic Syndromes

2016 ◽  
pp. e337-e344 ◽  
Author(s):  
Gregory A. Abel ◽  
Rena Buckstein
Keyword(s):  
Quality Of Life ◽  
Myelodysplastic Syndromes ◽  
Hematopoietic Cell Transplantation ◽  
Bone Marrow Failure ◽  
International Prognostic Scoring System ◽  
Hypomethylating Agents ◽  
Hematopoietic Growth Factors ◽  
Related Factors ◽  
Hematopoietic Stem

Myelodysplastic syndromes (MDS) are a group of acquired hematopoietic stem cell disorders that manifest with progressive bone marrow failure and have a propensity to transform into leukemia. Although an increase in biologic understanding of MDS has led to improved patient risk stratification and prognostication, advances in treatment have lagged behind. While hematopoietic cell transplantation (HCT) is a potentially curative option for some, most affected patients continue to be treated with supportive care or with drugs that offer temporary palliation such as hematopoietic growth factors, DNA hypomethylating agents, or immunomodulatory therapy. For several groups, such as those with intermediate-risk disease as classified by the Revised International Prognostic Scoring System (IPSS-R) or those with higher-risk disease for whom hypomethylating agents have failed, optimal treatment remains uncertain. Inclusion of patient-related factors such as frailty and comorbid conditions into risk assessment can improve prognostication beyond the disease-associated variables included in systems such as the IPSS-R. This article focuses on approaches to assessing and integrating frailty, comorbidities, and quality of life into the treatment of patients with MDS.

scholarly journals Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

2016 ◽  
Vol 176 (8) ◽  
pp. 1095 ◽  
Author(s):  
Melissa W. Wachterman ◽  
Corey Pilver ◽  
Dawn Smith ◽  
Mary Ersek ◽  
Stuart R. Lipsitz ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review

2019 ◽  
Vol 97 (1) ◽  
pp. 113-175 ◽  
Author(s):  
CATHERINE J. EVANS ◽  
LUCY ISON ◽  
CLARE ELLIS‐SMITH ◽  
CAROLINE NICHOLSON ◽  
ALESSIA COSTA ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Service Delivery ◽  
Older People ◽  
End Of Life ◽  
Rapid Review ◽  
Service Delivery Models ◽  
Delivery Models

scholarly journals A descriptive analysis of end-of-life discussions for high-grade glioma patients

2021 ◽  
Author(s):  
Ai Chikada ◽  
Sayaka Takenouchi ◽  
Yoshiki Arakawa ◽  
Kazuko Nin
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Patient Participation ◽  
High Grade Glioma ◽  
Team Approach ◽  
High Grade ◽  
Care Providers ◽  
Patient Goals ◽  
Significant Difference ◽  
Eol Care

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, &gt;80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.

Sign in / Sign up

Export Citation Format

Share Document