A national Danish proof of concept on feasibility and safety of home -based intensive chemotherapy in patients with acute myeloid leukemia.

Technological advances have made it possible to offer home-based chemotherapy to patients without health care professionals being present. Prior studies on effects of home-based treatment lack inclusion of patients with hematologic malignancies. We present data from a multicenter single-arm feasibility and safety study of home-based intensive chemotherapy in patients with newly diagnosed acute myeloid leukemia and their quality of life and psychological wellbeing. This national study included patients from six sites in Denmark who received intensive chemotherapy on programmed CADD Solis infusion pumps through a central venous catheter and were also managed as outpatients during treatment-induced pancytopenia. Data are presented from 104 patients, receiving 272 treatments with 1.096 (mean 4.57, SD 3.0) home infusion days out of 1.644 treatment days (67 %). Sixty-two of 168 (36.9 %) reinduction and consolidation treatment cycles ensuing pancytopenia phases were solely handled in the outpatient clinic. Patients reported high satisfaction with home-based treatment, which had a positive influence on their ability to be involved in their treatment and be socially and physically active. No unexpected events occurred during the intervention. Overall, patients improved in all quality of life outcomes over time. Home-based intensive chemotherapy treatment was feasible and safe in this population. ClinicalTrials.gov identifier: NCT04904211.

Quality of life in elderly patients with acute myeloid leukemia: patients may be more accurate than physicians.

BACKGROUND: The aim of this study was to evaluate changes in quality of life scores and their association with therapy and survival in unselected elderly patients with acute myeloid leukemia. DESIGN AND METHODS: From February 2003 to February 2007, 113 patients aged more than 60 years with de novo acute myeloid leukemia were enrolled in a prospective observational study. Two different quality of life instruments were employed: the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - C30 (EORTC QLQ-C30) and a health-related quality of life questionnaire for patients with hematologic diseases (QOL-E). RESULTS: Forty-eight patients (42.4%) received intensive chemotherapy and 65 (57.6%) were given palliative treatments. Age greater than 70 years (P=0.007) and concomitant diseases (P=0.019) had a significant impact on treatment allocation. At diagnosis, general quality of life was affected [median QOL-E standardized score 54, interquartile range 46-70; median EORTC global score 50, interquartile range 41-66]. Most patients were given a good ECOG Performance Status (< 2), which did not correlate with the patients' perception of quality of life. At multivariate analysis, palliative approaches (P=0.016), age more than 70 years (P=0.013) and concomitant diseases (P=0.035) each had an independent negative impact on survival. In a multivariate model corrected for age, concomitant diseases and treatment option, survival was independently predicted by QOL-E functional (P=0.002) and EORTC QLQ-C30 physical function (P=0.030) scores. CONCLUSIONS: Quality of life could have an important role in elderly acute myeloid leukemia patients at diagnosis as a prognostic factor for survival and a potential factor for treatment decisions.

Intervención psicológica en un caso de leucemia mieloide aguda con problemas de adaptación a la hospitalización y trastorno psicótico inducido por substancias / Psychological intervention in some hospitalary-adaptation problems and in a substance-induced psychotic disorder experienced by an acute myeloid leukaemia inpatien

El diagnóstico de una enfermedad hemato-oncológica supone un impacto físico, psicológico, emocional y social que genera sufrimiento en el individuo y en su entorno. El modelo de intervención psicológica preventiva trata de disminuir el malestar emocional y maximizar la adaptación y el bienestar a través de empoderar al paciente y aumentar su percepción de control. En el presente artículo se expone el caso de un joven con Leucemia Mieloide Aguda, con experiencia de malestar psicofisiológico, déficit en apoyo social, problemas de adaptación y de escasa comprensión inicial de información médica, determinados por la enfermedad e influyentes en la misma, con consecuentes riesgos de empeoramiento del estado de salud. El trastorno psicótico inducido por cannabis con ideas delirantes respecto al personal sanitario fue una de las complicaciones psicopatológicas principales, que en caso de no haberse detectado precozmente, podría haber influido seriamente en la adherencia al tratamiento médico y en la relación de ayuda. Al superar progresivamente las diferentes situaciones amenazantes, se produjeron en el paciente cambios positivos tanto del concepto de sí mismo, como de las relaciones interpersonales y de la propia filosofía de vida, llevándole a una mejor adaptación a la enfermedad. En conclusión, el objetivo fundamental de la actuación terapéutica no es únicamente minimizar el impacto negativo de la enfermedad o abordar las complicaciones psicopatológicas, sino también, favorecer que el paciente utilice sus mejores estrategias para aumentar su bienestar en tal situación (AU)

Hemato-oncological disease involve some physical, psychological, emotional and social impacts producing individual and global suffering. Preventive psychological interventions minimize stress and provide adaptation and well-being by empowering patient resources and increasing control perception. In this article we expose an acute myeloid leukemia impatient, whose experience of psychophysiological distress stemmed form a lack of social support, form adaptation problems and from scarce understanding of medical information as well as form consecutive risks of worsening in health. After overcoming gradually different threatening situations, some positive changes in self-concept, in the interpersonal relationships and in his own philosophy of life occurred. This led the patient to a better adaptation to the illness. In conclusion, the main goal of the therapeutic intervention does not only deal with decreasing the negative impact of the disease or tacking the psychopathological difficulties but also helping the patient to use his best strategies to improve well-being (AU)

[Conceptions of the acute myeloid leukemia patient concerning fatigue]. / Concepções do portador de leucemia mielóide aguda frente à fadiga.

The present work is a study with the objective of learning the conceptions of the patient bearer of acute myeloid leukemia (AML) concerning to fatigue symptoms and their repercussions in his/her daily life as well as the actions performed in order to minimize the fatigue. It is a descriptive and exploratory study of qualitative character carried out with hospitalized patients. Eight (8) adult subjects with diagnosis of AML were interviewed. The data were examined according to the technique of content analysis. The results found led to the elaboration of three categories: Conceptions regarding fatigue, Change in lifestyle and Actions taken in order to minimize fatigue. It was concluded that it is possible to identify the fatigue dimension in the daily life of these patients and also optimize measures in order to minimize this symptom. We recommend to health professionals a better understanding of fatigue in order to provide better care so that it is possible to guarantee a higher quality of life for these patients.

Demandas de atenção de um paciente na unidade de transplante de medula óssea / Demands for attention experienced by a patient in a bone marrow transplants unit

A capacidade de direcionar atenção é essencial para o funcionamento efetivo da vida diária, pois permite a pessoa manter atividade intencionada, apesar de distrações do ambiente. Este estudo de abordagem qualitativa teve como objetivo identificar as demandas de atenção vivenciadas por um paciente portador de leucemia mielóide aguda, submetido a Transplante de Medula Óssea (TMO), seguindo o referencial teórico de atenção e demandas de atenção. Os dados foram obtidos por meio de entrevista semi-estruturada e observação assistemática, com posterior análise de conteúdo temático. Os resultados apontaram que o paciente em TMO está exposto a muitas demandas de atenção, como: ausência da família, o medo da morte, incerteza do futuro, espaço físico restrito, afastamento do trabalho, excesso de manuseio da equipe de enfermagem, entre outras.

Social support and survival in patients with acute myeloid leukaemia.

GOAL OF WORK: The purpose of the study was to assess the effect of the reported availability of social support on the 2-year survival of patients with acute myelogenous leukaemia (AML). MATERIALS AND METHODS: Fifty patients with newly diagnosed AML were asked to rate the level of available social support after diagnosis was made, but before the start of chemotherapy. Social support was assessed with the F-SozU, and information about confounding variables (age, functional status, intensity of chemotherapy, cytogenetic risk group) was collected. Univariate and multivariate Cox regression analyses were used to analyze predictors of 2-year survival. MAIN RESULTS: Higher levels of available social support predicted better survival, even after controlling for age, functional status, dosage of chemotherapy, and cytogenetic risk group. Within social support, the availability of instrumental support showed more consistent associations with 2-year survival than the availability of emotional support. CONCLUSIONS: For patients with AML, the availability of social support is relevant for decreased mortality, after accounting for age, functional impairment, dosage of chemotherapy and cytogenetic risk group.

[Health and psychosocial aspects of quality of life in patients undergoing autologous progenitor stem cell transplantation]. / Zdravotní a psychosociální aspekty kvality zivota nemocných s akutní myeloidní leukémií po autologní transplantaci periferních kmenových bunek.

BACKGROUND: The haematopoietic stem cell transplantation is a specific therapy used not only for the treatment of haematooncological diseases, but also for the treatment of the solid tumours and some of the non-malignant diseases. The haematopoietic stem cell transplantation has an influence on the course of the disease and the quality of life as any other curative method. The authors explore the quality of life in 12 adult patients with acute myeloid leukaemia undergoing autologous progenitor stem cell transplantation at the Department of Clinical Haematology of the 2nd Department of Internal Medicine of Charles University Hospital in Hradec Králové. METHODS AND RESULTS: The European Quality of Life Questionnaire EQ-5D was used in evaluating effects of the selected healthy and psychosocial aspects on the quality of life (age, sex, level of education, religion, smoking abuse, polymorbidity, marital status and lapse time from transplantation). The results show that quality of life significantly depends on the age, level of education, smoking abuse, religion and polymorbidity. Effects of other aspects on the quality of life were not revealed. CONCLUSIONS: The global quality of life in our adult patients with acute myeloid leukaemia undergoing autologous progenitor stem cell transplantation at the Department of Clinical Haematology of 2nd Department of Internal Medicine of Charles University Hospital in Hradec Králové is on greatly good level (mean EQ-5D score was 75.1% and mean EQ-5D VAS was 67.5%).

Beginning treatment for pediatric acute myeloid leukemia: the family connection.

There is a loud silence on psycho-oncology research in relation to pediatric Acute Myeloid Leukemia (AML). This article is part of a series that begins to address the psycho-social hiatus. The present article documents the less obvious, often hidden, aspect of beginning treatment for pediatric AML--the "behind the scenes" experience of the home and family connection. The findings are from the first stage of a five year longitudinal study that examines through qualitative research the experience of childhood leukemia from the perspective of the child, siblings and parents. Open-ended interviews, audio-recorded and transcribed verbatim, were thematically analyzed with the assistance of the Non-numerical Unstructured Data by processes of Indexing Searching and Theory-building (NUD*IST) computer program. The findings emphasize the disruption to normalcy in relation to home life, school, and work, which is exacerbated for families who relocate for specialist treatment. The findings emphasise the need for support for families coping with childhood AML.

Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience.

Despite the plethora of clinical literature on the medical treatment for paediatric acute myeloid leukaemia (AML), there is a dearth of psycho-social literature on how families cope with either the disease or its treatments. The present article seeks to make a contribution by placing psychosocial aspects of childhood AML on the agenda. The findings are from a 5-year longitudinal, qualitative study on the psychosocial aspects of paediatric leukaemia. Qualitative data is gathered from open-ended interviews at three points in time on the experience of illness. The holistic findings from T1 present the impact of diagnosis and early treatment for childhood AML from the perspective of mothers, father, sibling and child patients. The study is also following up families with related disorders, thus it is possible to assess difference to other haematological groups. The findings indicate that the families bring scant prior understanding of the illness, and experience the diagnosis with fear and seriousness as a confrontation with death. At the point of entering treatment they are in a profound sense of shock and grief, which is exacerbated by a distressing, all pervading, sense of uncertainty. Families can be overwhelmed by the exhaustion of attending to the escalating practical demands of the situation combined with fatigue, worry and poor nutrition. All families find dealing with the invasive procedures and aggressive drug protocols emotionally challenging. However, in spite of the difficulties, parents have a strong desire to be with their child and find any separation painful. Families come to view the ward as a comfort zone where they have the support of the health and allied health team and the camaraderie of others experiencing a similar situation. However, even this support has to be qualified by the need for personal space, the difficulty of handling complex emotions, and the fear of being overwhelmed by difficulties other families face. The insights argue strongly for sensitive support for all individuals coping with childhood AML.

Decision-making and quality of life in older adults with acute myeloid leukemia or advanced myelodysplastic syndrome.

Older patients with acute myeloid leukemia (AML) and advanced myelodysplastic syndrome (aMDS) must decide between receiving intensive induction chemotherapy (IC) or nonintensive chemotherapy/best supportive care (NIC). Little information exists about what factors influence treatment decisions and what quality of life (QOL) is associated with treatment choices. We prospectively examined 43 patients 60 years or older who were interviewed at diagnosis and periodically over 1 year. IC choice was associated with younger age (66 vs 76 years, P=0.01) and AML diagnosis, but not with performance status, comorbidities, or QOL. In total, 63% of all patients reported not being offered other treatment options despite physician documentation of alternatives. Patient and physician estimates of cure differed significantly: 74% of patients estimated their chance of cure to be 50% or greater, yet for 89% of patients physician estimates of cure were 10% or less. IC patients experienced decreased QOL at 2 weeks, but rebounded to baseline and to NIC levels by 6 weeks. Initial QOL is not associated with treatment choice in older AML and aMDS patients. Regardless of treatment choice, patients report not being offered treatment options and overestimate their chances of cure. In IC patients, QOL decreases during hospitalization but rebounds after discharge.

Conversion disorder with convulsion and motor deficit mimicking the adverse effects of high-dose Ara-C treatment in a posttransplant acute myeloid leukemia patient: a case report and review of the literature.

In this communication, we report an acute leukemia patient who developed conversion disorder mimicking the adverse effects of high-dose cytosine arabinoside (Ara-C) treatment after the patient received high-dose Ara-C treatment. A 21-year-old woman, with acute recurrent leukemia after bone marrow transplantation, received high-dose Ara-C treatment and 10 days later was referred for psychiatric consultation because of an abrupt onset of convulsion. On neurologic examination, she showed convulsion of all the limbs without loss of consciousness. All limbs looked paretic; however, tendon reflexes in all limbs were normal and pathological reflex was not recognized. When her hand was dropped onto her own face, it fell next to her face but not on her face. Laboratory data were unremarkable. She had no history of psychiatric illness or drug or alcohol abuse. The patient explained that she knew about the recurrence of her own leukemia and the news of the death of a close friend due to leukemia at the same time, which was a shocking event for her, focusing her attention on her own fears of dying from the same disease. Conversion disorder in cancer patients is not common; however, appropriate diagnosis is very important to avoid inappropriate examinations and treatments. In leukemia patients receiving chemotherapy, various kinds of signs and symptoms may develop due to the adverse effects of chemotherapy and/or infection. Therefore, conversion disorder might be overlooked and inappropriate treatment and examinations might be performed. Clinicians should consider conversion disorder in the differential diagnosis when patients develop unexplained neurological symptoms.

The burden and outcomes associated with four leukemias: AML, ALL, CLL and CML.

Given the recent advances in the treatment of hematologic malignancies and the many other treatments on the horizon, physicians and payers will be faced with the critical decisions of when to use new treatments in the clinical pathway and how to allocate healthcare resources. This review will provide an overall context for the clinical, economic and quality of life burden of leukemia, as well as provide cross-analysis among the four major types of leukemia: acute lymphocytic leukemia, chronic lymphocytic leukemia, acute myeloid leukemia and chronic myeloid leukemia.

The patient's perspective: a qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour.

In recent years there has been an increased focus on cancer patients' information needs. The majority of the studies have led to the conclusion that most patients want as much information as possible about their disease and treatment. These studies have been large survey studies, and most of the patients enrolled in them have been out-patients. Very little is known about the information needs of severely ill cancer patients being treated as in-patients-such as those with acute myeloid leukaemia (AML). As part of a larger study dealing with AML patients' illness narratives, this work describes the information needs from the patients' perspective and their information-seeking behaviour. In-depth ethnographic interviews were conducted with each of 21 patients on two occasions: at the time of diagnosis and again 2-5 months later. Most patients did not recall much information from the time of diagnosis, except the diagnosis itself and the feelings it had aroused in them. All patients had basic medical knowledge about their disease. However, many patients-especially the elderly-expressed no need to receive further medical details about their disease. Avoiding information, in particular about the prognosis, was explained as a strategy to maintain hope. Most patients attached more importance to information about problems affecting their everyday life and how other persons had coped with their illness. They did not seek medical information on their own, although especially younger patients expressed the feeling that they "ought" to do this. There was a discrepancy between their expressed attitudes regarding the need for medical information in general and their actual information-seeking behaviour. Being informed and seeking information are discussed as society's expectations of today's cancer patient.

Between parent and child: negotiating cancer treatment in adolescents.

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital, founded the Kenneth B. Schwartz Center. The Schwartz Center is a non-profit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and sustenance to the healing process. The center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. Cancer in adolescents presents an extra dynamic of psychosocial complexity. The case of a 19-year-old woman with acute myelocytic leukemia is discussed. Her disease was refractory to allogeneic transplantation, and she died with severe graft-versus-host disease. Ms. P and her mother established very different relationships with the team which supported them through the transitions in her care, and Ms. P was able to die at home, with hospice care. The personal connection with the team enabled a degree of positive adjustment through the nightmare of loss. The epidemiology of cancer in adolescents and paradigms of care are reviewed. Psychosocial aspects of adolescence, opportunities for personal growth and support, and the challenge of end-of-life care are discussed.

Fatigue as an important aspect of quality of life in patients with acute myeloid leukemia.

Quality of life (QL) was evaluated in 101 patients with AML undergoing intensive and prolonged treatment at 12 sequential time points by using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C 30 questionnaire and the profile of mood states scale (POMS). For those patients having completed the course of inpatient treatment (n=37), QL improved from the beginning of chemotherapy to the end of inpatient treatment. Patients who subsequently went off protocol did not differ significantly in their self-assessed QL when compared with patients who completed therapy. Fatigue was more closely related to QL than nausea/emesis or appetite loss, but did not correlate with hemoglobin levels.

The final phase in acute myeloid leukaemia (AML): a study of cause of death, place of death and type of care during the last week of life.

The aim of this study was to increase the knowledge of the final phase in acute myeloid leukaemia (AML), a period which entails many complex medical and psychosocial decisions. Data on cause and place of death were gathered through a retrospective review of medical and nursing records of 106 patients with AML who had died during 1995-1997. We focused on the actual phase of the disease and to what extent the patients were prescribed palliative care. With increased knowledge of the dying process in AML there are options to discuss which approach would be the most preferred final phase for an AML patient.

Associations between coping and survival time of adult leukemia patients receiving allogeneic bone marrow transplantation: results of a prospective study.

BACKGROUND: To investigate associations between coping strategies and length of survival in a sample of 52 adult leukemia patients receiving allogeneic bone marrow transplantation (BMT). METHODS: 52 adult patients, diagnosed with acute (AML) and chronic myeloid leukemia (CML) admitted for allogeneic BMT to a university hospital BMT unit in preparation for a transplantation of genotypically matched HLA donor marrow, were interviewed immediately after informed consent and prior to preparatory treatment for transplantation. Semistructured interviews were conducted and recorded for analysis to assess coping styles and were evaluated by a new content analytic coping measure [Ulm Coping Manual (UCM)]. Patients were a random sample of all eligible patients on the BMT unit between May 1990 and May 1994. RESULTS: Complete audiotaped interviews were rated by blind raters, employing a newly developed content analysis for the identification of patients' coping strategies. Multivariate analysis using a Cox model revealed three pretransplant variables that demonstrated a statistically significant influence on 5-year survival: Stage of Disease at transplant (P < .012), Distraction (P < .007), and Fighting Spirit as coping modalities (P < .013). CONCLUSIONS: The results of this prospective study document the impact of certain psychological variables, notably coping style on survival with BMT. This suggests the necessity of utilizing psychosocial interventions to address stress and anxiety in patients awaiting transplantation in order to reduce anxieties and to employ more effective coping techniques to deal more appropriately with their situation and to enhance Fighting Spirit. The effects on survival of such psychosocial interventions need to be tested in a randomized controlled study.