The Importance of Quality of Life for Patients Living With Myelodysplastic Syndromes

Thomas, Mary L.; Crisp, Nicole; Campbell, Karen

doi:10.1188/12.cjon.s1.47-57

Cited by 16 publications

(31 citation statements)

References 50 publications

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“…Importantly, the second track also includes discussions about future problems, treatment choices, hospital admissions, LSTs, and place of death. The palliative care approach has shown to benefit symptom control 37 and quality of life, 38 to decrease ED visits, hospital and ICU admissions and in-hospital deaths, 39,40 and might even prolong survival. 41 In the integrated care approach, multidisciplinary discussions and communication across specializations within and outside the medical field are crucial to satisfy care needs.…”

Section: A Proactive Integrated Care Approachmentioning

confidence: 99%

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach

Verhoef

Nijs

Ootjers

et al. 2019

Am J Hosp Palliat Care

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Purpose: Patients with hematological malignancies (HM) have more unpredictable disease trajectories compared to patients with advanced solid tumors (STs) and miss opportunities for a palliative care approach. They often undergo intensive diseasedirected treatments until the end of life with frequent emergency department (ED) visits and in-hospital deaths. Insight into end-of-life trajectories and quality of end-of-life care can support arranging appropriate care according to patients' wishes. Method: Mortality follow-back study to compare of end-of-life trajectories of HM and ST patients who died <3 months after their ED visit. Five indicators based on Earle et al. for quality of end-of-life care were assessed: intensive anticancer treatment <3 months, ED visits <6 months, in-hospital death, death in the intensive care unit (ICU), and in-hospice death. Results: We included 78 HM patients and 420 ST patients, with a median age of 63 years; 35% had Eastern Cooperative Oncology Group performance status 3-4. At the ED, common symptoms were dyspnea (22%), pain (18%), and fever (11%). After ED visit, 91% of HM patients versus 76% of ST patients were hospitalized (P ¼ .001). Median survival was 17 days (95% confidence interval [CI]: 15-19): 15 days in HM patients (95% CI: 10-20) versus 18 days in ST patients (95% CI: 15-21), P ¼ .028. Compared to ST patients, HM patients more often died in hospital (68% vs 30%, P < .0001) and in the ICU or ED (30% vs 3%, P < .0001). Conclusion: Because end-of-life care is more aggressive in HM patients compared to ST patients, a proactive integrated care approach with early start of palliative care alongside curative care is warranted. Timely discussions with patients and family about advance care planning and end-of-life choices can avoid inappropriate care at the end of life.

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Section: A Proactive Integrated Care Approachmentioning

confidence: 99%

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach

Verhoef

Nijs

Ootjers

et al. 2019

Am J Hosp Palliat Care

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“…In 2000, quality of life (QoL) was included in the International Working Group Standard Response Criteria for the evaluation of MDS therapies (Cheson et al , ). However, despite the long‐standing general consensus regarding the importance of QoL in this patient population (Greenberg et al , ; Malcovati et al , ), empirically based information remains scarce (Caocci et al , ; Thomas et al , ).…”

mentioning

confidence: 99%

Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes

et al. 2014

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SummaryThe primary objective of this study was to investigate factors associated with fatigue severity in newly diagnosed patients with higher-risk myelodysplastic syndromes (MDS). The secondary objectives were to assess symptom prevalence and to examine the relationships between fatigue, quality of life (QoL) and overall symptom burden in these patients. The analyses were conducted in 280 higher-risk MDS patients. Pre-treatment patient-reported fatigue was evaluated with the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale and QoL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). Female gender (P = 0Á018), poor performance status (i.e., ECOG of 2-4) (P < 0Á001) and lower levels of haemoglobin (Hb) (P = 0Á026) were independently associated with higher fatigue severity. The three most prevalent symptoms were as follows: fatigue (92%), dyspnoea (63%) and pain (55%). Patients with higher levels of fatigue also had greater overall symptom burdens. The mean global QoL scores of patients with the highest versus those with the lowest levels of fatigue were 29Á2 [standard deviation (SD), 18Á3] and 69Á0 (SD, 18Á8), respectively and this difference was four times the magnitude of a clinically meaningful difference. Patient-reported fatigue severity revealed the effects of disease burden on overall QoL more accurately than did degree of anaemia. Special attention should be given to the female patients in the management of fatigue.

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“…The psychological burden on MDS patients can be huge (Thomas et al 2012). These patients must live with uncertainty on their disease trajectory and often live in fear of disease progression to AML.…”

Section: Time Outmentioning

confidence: 99%

Myelodysplastic syndromes: update and nursing considerations

Kelly

Meenaghan

Dowling

2015

Cancer Nursing Practice

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This article provides nurses with an update of current management approaches and care for patients with myelodysplastic syndromes (MDS), a complex group of disorders of the bone marrow. MDS has wide ranging effects on patients' lives. Understanding the impact of a diagnosis of MDS on a patients' quality of life (QOL) is a key nursing role and requires discussion which includes consideration of a patient's physical, mental, emotional and social well being. Many treatment options are now available to treat MDS and nurses have an important role educating patients on recognising and managing treatment side effects. While many promising developments in the management of MDS are now available to patients, nurses need to ensure that patients and families have a realistic understanding that the treatments they are being given are for non-curative intent.

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The Importance of Quality of Life for Patients Living With Myelodysplastic Syndromes

Cited by 16 publications

References 50 publications

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach

Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes

Myelodysplastic syndromes: update and nursing considerations

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