Evaluation of the quality of life of adult patients admitted to the bone marrow transplantation unit.

INTRODUCTION: The complexity of treatment and extended therapy duration associated with bone marrow transplantation directly affect the psychological well-being of the patients, create anxiety, and reduce their quality of life. The aim of our study was to evaluate the quality of life of patients admitted to the bone marrow transplantation unit. METHODS: This prospective and descriptive study was conducted between January and June 2021 in an adult BMT unit in Turkey. The sociodemographic characteristics of the patients were recorded. The patient's quality of life was measured twice using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) scale at the beginning of the study and 30 days later. SPSS 15 was used for the analysis. RESULTS: A total of 40 patients were included in the study. The mean age was 46 years. Most of the patients were diagnosed with multiple myeloma and 58% had at least one comorbid disease. Most of the patients (78%) were receiving myeloablative therapy. High dose melphalan regimen was the most commonly applied regimen (25%). Thrombocytopenia was the most common side effect (14%). Although there was no change in the quality of life, it was found that the social/family well-being scores increased (p < 0.05). CONCLUSIONS: In our study, it was observed that the number of comorbid diseases was higher in patients with bone marrow transplantation. The incidence of side effects may be high in these patients. We believe that clinical pharmacists have an important role in monitoring adverse effects and improving the quality of life in bone marrow transplantation units.

"Is this the GVHD?" A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service.

BACKGROUND: Graft-versus-host disease (GVHD) is a significant cause of morbidity and mortality following allogeneic stem cell transplantation. These patients face unique challenges due to the complexity of GVHD which can affect multiple organ systems, and the toxicity of treatments. Despite the known impact on quality of life (QOL), qualitative data within the bone marrow transplantation (BMT) literature is rare, and there has been no qualitative work exploring patient experience of specialist healthcare provision for GVHD in the United Kingdom. METHODS: We conducted a primary explorative qualitative study of the experience of QOL issues and multidisciplinary care in patients with chronic GVHD following allogeneic stem cell transplantation. Eight patients were identified using convenience sampling from specialist BMT outpatient clinics. Following consent, patients were interviewed individually via telephone. Transcripts of interviews were analyzed using an inductive thematic approach. RESULTS: Mean participant age was 61-years-old (range 45-68), with a mean time post-transplant of 3 years at time of interview (range 3 months-15 years). Five key QOL themes were identified: (1) 'Restricted as to what I can do'; (2) Troubling symptoms-'you can sort of get GVHD anywhere'; (3) Confusion/uncertainty over GVHD symptoms-'Is this the GVHD?'; (4) Unpredictable course and uncertainty about the future; and (5) Adapting to the sick role. In addition, four themes related to experience of service provision were identified: (1) personal care and close relationship with BMT nurses; (2) efficiency versus long waits-'On the case straight away'; (3) information provision-'went into it with a bit of a rosy view'; and (4) the role of support groups. CONCLUSIONS: These qualitative data reflect the heterogeneity of experiences of the GVHD patient population, reflecting the need for a flexible and nuanced approach to patient care with emphasis on comprehensive information provision. We have identified the key role that BMT specialist nurses within the multidisciplinary team play in supporting patients. We advocate future research should focus on ways to meet the complex needs of this patient group and ensure that the personal care and close relationships are not lost in service redesigns embracing remote consultations.

Addressing the psychosocial needs of young people with thalassaemia undergoing bone marrow transplantation.

Beta thalassaemia major is an inherited condition that causes severe anaemia. Patients with the condition require regular blood transfusions. One curative treatment option available is bone marrow transplantation, but a bone marrow transplant is a high-risk, painful procedure requiring prolonged hospitalisation. Undergoing such a disruptive treatment can be a source of great anxiety for young people and their families, who will need honest, sensitive and empathetic communication, person-centred care, support to socialise and access education, involvement in decision-making and signposting to financial support. This article discusses the role of children's nurses in addressing the psychosocial needs of young people with thalassaemia who undergo bone marrow transplantation and in supporting young people's families.

Desde el corazón de un padre. Luces y sombras durante la leucemia / From the heart of a father. Lights and shadows during leukemia

La leucemia es un tipo de cáncer hematológico que provoca una proliferación anormal de leucocitos. Con el relato biográfico que se presenta a continuación se pretende describir las vivencias de una persona que mantiene una actitud positiva para afrontar las dificultades y cambios que surgen a raíz del diagnóstico. Para ello, se ha realizado un estudio cualitativo de carácter fenomenológico siguiendo la metodología de Amezcua y Hueso. El informante es Paco, por haber vivido junto a su hijo el proceso completo de la enfermedad. Dicho relato sigue un hilo conductor: antecedentes, primeras pruebas y diagnóstico, afrontamiento personal y familiar, reacciones frente a la hospitalización, donación de médula, pensamientos y creencias durante el proceso, recomendaciones y futuro. Conocer esta historia ayuda a personas que se encuentren en la misma situación y desde el punto de vista sanitario, permite mejorar la asistencia y humanizar los cuidados

Leukemia is a type of hematologic cancer that causes abnormal leukocyte proliferation. The biographical account presented below is intended to describe the experiences of a person who maintains a positive attitude to face the difficulties and changes that arise as a result of the diagnosis. For this, a qualitative study of phenomenological character has been carried out following the methodology of Amezcua and Hueso. The informant is Paco, for having lived with his son, the whole process of the disease. This story follows a very clear guiding thread: past, first tests and diagnosis, personal and family coping, reactions to hospitalization, bone marrow donation, thoughts and beliefs during the process, recommendations and future. Knowing this story, helps people who are in the same situation and from a health point of view, it allows to improve assistance and humanize care

Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease: A Qualitative Study.

Importance: Bone marrow transplant (BMT) is a potentially curative treatment for sickle cell disease (SCD). Patient and caregiver attitudes toward BMT for SCD and the willingness to accept risks of BMT vary, but these attitudes are not well understood. Objective: To understand patient and caregiver perceptions of and attitudes toward BMT for SCD and decision-making about BMT. Design, Setting, and Participants: Qualitative study of interview transcripts from a convenience sample. Transcripts were from adults with SCD and caregivers of patients with SCD recruited from national and regional SCD conferences, symposia, and sickle cell clinics in 2 cities. Interview transcripts were used from the needs assessment phase to develop a patient-decision aid in 2013 to 2014 (group 1) and from the baseline point in 2015 to 2016 (group 2) of the parent trial, a randomized clinical trial of adults and caregivers of patients with SCD to evaluate the effectiveness of a patient decision aid. Main Outcomes and Measures: Participant perspectives on decision-making regarding BMT for SCD. Results: Fifty-seven transcripts from adults with SCD and 50 transcripts from caregivers of patients with SCD were included. Median (interquartile range [IQR]) age of adults with SCD was 34 (21-50) years in group 1 and 30 (23-38) years in group 2. The median (IQR) age of caregivers was 42.5 (31-52) years in group 1 and 41 (35-46.5) years in group 2. Most transcripts from adults with SCD (75.0% in group 1 and 72.4% in group 2) and caregivers of patients with SCD (76.7% in group 1 and 85.0% in group 2) were from female participants. Bone marrow transplant was perceived as a treatment option associated with serious risks. Reported attitudes toward BMT occurred on a continuum ranging from unfavorable to favorable. Participants reported serious decisional dilemma regarding BMT for SCD. Most participants expressed interest in learning about BMT or curative treatments. Conclusions and Relevance: This qualitative study found a continuum in attitudes toward BMT for SCD and highlights the complexity of decision-making in BMT for SCD. Patients and families with SCD expressed an interest in learning about BMT. Future prospective studies of patient decision-making regarding BMT, especially in the context of emerging curative and novel disease-modifying therapies for SCD, are warranted.

Pediatric bone marrow transplantation: Psychopathologic features in recipients along with siblings.

OBJECTIVE: To analyze the development of psychopathology in recipients along with their donor and nondonor siblings and the relationship with the bone marrow transplantation (BMT) process. METHODS: All children were interviewed using the Kiddie Schedule for Affective Disorders and Schizophrenia to assess psychopathology. The depression and anxiety symptoms and self-esteem of children and adolescents were evaluated using the Children's Depression Inventory, State-Trait Anxiety Inventory for Children, State-Trait Anxiety Inventory, and Rosenberg Self-Esteem Scale. RESULTS: In this study, the depressive symptom level was found significantly higher in the donor group compared with the nondonor group. State anxiety symptoms were higher in the BMT group (P < .05). There were no significant differences in trait anxiety symptoms. Self-respect was higher in children in the donor group compared with those in the BMT group (P < .05). During the transplant process, children with bone marrow transplants had a higher prevalence of depression, anxiety disorder, and attention-deficit/hyperactivity disorder, and nondonor siblings had a higher prevalence of depressive disorder, anxiety disorder, and attention-deficit/hyperactivity disorder compared with society in general. CONCLUSION: Physicians should deal with the family as a whole, not just their patient, and should be aware of the psychiatric risk of other siblings during the assessment.

Enhancing Advance Care Planning Conversations by Nurses in a Bone Marrow Transplantation Unit.

OBJECTIVES: To describe the impact of advance care planning (ACP) education on nurses' confidence in ACP knowledge and practice and to identify barriers to facilitate ACP conversation in a bone marrow transplantation unit. SAMPLE & SETTING: 60 nurses working in the bone marrow transplant unit at Oregon Health and Science University, an academic medical center. METHODS & VARIABLES: The aim of this quality improvement project was to increase ACP conversations by nurses. The authors used a single-group pre-/post-test design to assess the effectiveness of a 30-minute educational intervention in changing nurses' confidence and practice. Group interviews were conducted to identify barriers to ACP. RESULTS: The educational intervention increased nurses' confidence in knowledge about ACP. The number of nurses who discussed ACP with patients also increased, but it was not statistically significant. Lack of time, inefficient workflow, and concerns about questioning providers' understanding of patient preferences were identified as barriers for nurses engaging in and documenting ACP conversations. IMPLICATIONS FOR NURSING: In addition to appropriate education, strategies that help tailor ACP practice to fit into nurse workflow and promote collaboration with other healthcare team members are needed to change nurses' ACP practice.

Relationship between paid leave, financial burden, and patient-reported outcomes among employed patients who have undergone bone marrow transplantation.

PURPOSE: The US does not have universal paid family and medical leave. We examine the direct effects of access to paid leave on patient-reported health, quality of life (QOL), and perceived stress of employed patients who underwent bone marrow transplantation (BMT) to treat advanced blood cancer as well as the indirect effects through reductions in the financial burden (FB) that patients face. METHODS: Our cross-sectional observational study took place at three US transplantation centers in 2014 and 2015. All English-speaking cancer patients 6-month post-BMT were mailed a 43-item survey assessing financial situation, employer benefits, and patient-reported health outcomes. The sample includes the 171 respondents who were employed at the time of BMT. RESULTS: Seemingly unrelated regression analysis confirms that patient access to paid leave was associated with reductions in all three measures of FB, and lower levels of financial hardship were related with improved health, QOL, and perceived stress outcomes. For self-reported health and perceived stress outcomes, all of the effects of patient paid leave operate indirectly through reductions in FB. For QOL outcomes, there is both a direct effect (over 80%) of paid leave and an indirect effect through reduction of FB. CONCLUSION: We found that paid leave affected health outcomes for BMT patients mostly through alleviating FB. These findings suggest universal paid leave policies in the US might alleviate financial hardship and have positive effects on the self-reported QOL of employed patients facing intensive medical treatments.

Efeitos da invisibilidade do adoecimento hematológico no Transplante de Medula Óssea a partir do conceito de Dasein / [Effects of the invisibility of hematological illness on Bone marrow transplantation based on the concept of Dasein]

Este artigo resulta da experiência como psicóloga residente numa unidade de transplante de medula óssea. O objeto da pesquisa foi a invisibilidade do adoecimento e suas reverberações. Foi realizado um estudo de caso, cujo referencial teórico é o conceito de Dasein, de M. Heidegger. Este se refere à forma como o ser se coloca no mundo, considerando-o sempre numa relação seja com o outro, seja com a própria finitude, a partir da linguagem. Como resultados, observou-se que a invisibilidade produz repercussões não só para o paciente, como para o entorno. Para estes pacientes, muitas vezes é o transplante que lhes coloca em uma relação mais direta com a doença, reforçando sua concretude e gravidade. Portanto, reconhecer esse fenômeno tem efeitos no trabalho clínico, proporcionando um espaço de escuta e uma presença que os auxilia a construir seus próprios modos de lidar com as experiências advindas do tratamento.

The present paper have been made of the experiences as a psychologist resident in a bone marrow transplantation center. The objective was to analyze the hematological disease's invisibility and their reverberation on the patients in treatment. The method utilized was the case study with patients that show this kind of question during the appointments, where we analyze their speech using the Dasein's concept of Heidegger. This refers to the way the being puts itself in the world, returning its experiences as central to this understanding; considering it always in a relation, be it with the world, or with the finitude, by the language. As results, it was observed that invisibility produces a difficulty in identifying itself as having a serious illness and of being able to locate this illness in the body, with repercussions not only for the patient, but also for other people. It also refers to what each one understands by being sick in its singularity. For these patients, it is often the transplant that puts them in a direct contact with the disease, because its effects increase their concreteness and gravity. Therefore, invisibility is a face of this procedure that deserves attention and recognizing this phenomenon generates a better understanding in the clinical work providing a space of listening and a presence that helps them to construct their own ways of dealing with the experiences coming from the treatment.

Hematopoietic stem cell transplantation and quality of life during the first year of treatment.

OBJECTIVE: to evaluate the quality of life of adult patients with hematological cancer comparing Hematopoietic Stem Cell Transplantation modalities during the first year of treatment. METHOD: this is an observational and longitudinal research with 55 participants. Data collection was performed in six steps: before transplantation, pancytopenia, before hospital discharge, after 100, 180 and 360 days, in a reference hospital in Brazil for this treatment. The international instruments Quality of Life Questionnaire - Core 30 and Functional Assessment Cancer Therapy - Bone Marrow Transplantation were validated and translated into Portuguese (Brazil). RESULTS: the mean age of participants was 36 years, 65% (n = 36) had leukemia diagnosis and 71% (n = 39) had undergone allogenic transplantation. In the Quality of Life Questionnarie - Core30 instrument, the pain symptom was significant between the first and second stages, and loss of appetite between the third and fourth stages, both in the allogenic group. In the Functional Assessment Cancer Therapy - Bone Marrow Transplantation, the functional well-being domain was significant between the third and fourth stages, also in the allogenic group. CONCLUSIONS: although the aggressiveness of treatment affects quality of life, patients consider it satisfactory after the first year. There are few significant differences between autologous and allogenic patients, and both groups have recovered in the course of the process.

Islam, The Holy Qur'an, and Medical Decision-Making: The Experience of Middle Eastern Muslim Families with Children Undergoing Bone Marrow Transplantation in the United States.

Some Arabic-speaking Muslim family members of children requiring bone marrow transplantation receive medical care for their children in the United States. Muslim family members' use of Islam in the course of their child's bone marrow transplantation was studied using grounded theory, a qualitative research method. Eighteen members of Middle Eastern Muslim families with a total of 13 children receiving bone marrow transplantation were interviewed by an Arabic-speaking healthcare provider. Interviews were coded by an interdisciplinary team. Seven key themes were identified.

The effects of bone marrow mononuclear cell transplantation on the quality of life of children with cerebral palsy.

BACKGROUND: Quality of life (QOL) is an important factor in evaluating the effectiveness of treatment in children with cerebral palsy (CP). The aim of this study was to evaluate the effects of autologous bone marrow mononuclear cells (BM MNCs) on the QOL of children with CP. METHODS: From December 2015 to December 2016, 30 children with CP aged from 2 to 15 years received two intrathecal infusions of BM MNCs, one at baseline and the other 3 months later, at Vinmec International Hospital. The motor function and muscle tone of the patients were evaluated using the Gross Motor Function Measure (GMFM)-88 and Modified Ashworth Score, respectively. Their QOL was assessed at baseline and 6 months after the first BM MNC transplant using the Vietnamese version of the Cerebral Palsy Quality of Life Questionnaire for children (CP QOL-Child)-the parental proxy report, which comprises seven domains. Nineteen mothers (mean age: 32.9±4.9 years) and 11 fathers (mean age: 36.1±6.8 years) were invited to complete the CP QOL-Child assessment before and after the transplantations, Paired t-tests and multivariate regression analyses were used to evaluate the changes in QOL and GMFM scores and to identify the key factors correlated with the QOL score. RESULTS: Significant changes were observed in the children's gross motor function and muscle spasticity, as evidenced by the GMFM-88 total score, scores for each of its domains, the GMFM-66 percentile and the muscle tone (P < 0.001). Six months after the transplantations, the QOL scores of children with CP were markedly increased (P < 0.001) for all the domains, except for the domain of access to services. In the multivariate regression analysis, significant associations were found between higher age of children and higher QOL except for feeling about functioning and pain and impact of disability domains. Gross Motor Function Classification System (GMFCS) level was negatively correlated with the score of pain and impact of disability domain, while the GMFM-88 scores were positively correlated with the QOL in terms of feelings about functioning and family health domain (P < 0.05). CONCLUSION: The QOL of the children with CP was noticeably improved 6 months after BM MNC transplantation and was accompanied by improvements in gross motor function and muscle tone. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02574923 . Registered on October 14, 2015.

Use of Virtual Reality to Distract From Pain and Anxiety.

OBJECTIVES: To determine the effects of a virtual reality intervention on pain and anxiety in patients undergoing a bone marrow aspiration and biopsy procedure. SAMPLE & SETTING: 97 adults in an outpatient cancer center in the midwestern United States. METHODS & VARIABLES: In this quasiexperimental study, participants were assigned to either the experimental group (use of virtual reality goggles) or the control group (standard treatment). Vital signs, pain, and anxiety were measured before and after the procedure. T tests and chi-square tests were used to compare the two groups based on demographic data, pain, anxiety, and total amount of medication used during the procedure. RESULTS: Participants who wore virtual reality goggles during a bone marrow aspiration and biopsy procedure did not experience a statistically significant decrease in pain and anxiety. However, the experimental and control groups showed a decrease in pain and anxiety levels from pre- to postprocedure. IMPLICATIONS FOR NURSING: Virtual reality goggles may be a feasible, noninvasive alternative to traditional pharmacologic treatment. The cost of any intervention would need to be considered. Virtual reality should be researched and adapted to benefit patients in appropriate settings.

Role of Early Palliative Care Interventions in Hematological Malignancies and Bone Marrow Transplant Patients: Barriers and Potential Solutions.

INTRODUCTION: Despite advances in palliative care management of physical, psychological, and emotional symptoms along the spectrum of chronic conditions, early palliative care interventions are not used frequently and comprehensively in bone marrow transplant units. METHODS: The literature review of PubMed articles in English published until December 2017. RESULTS: Patients with hematologic malignancies and bone marrow transplant interventions are a heterogeneous group. The majority experience symptoms associated with induction or condition regimens. Curative intent of treatment is the norm. Pain, mucositis, nausea and vomiting, diarrhea, psychological, spiritual, and emotional concerns may not be properly and comprehensively tackled by primary oncology and bone marrow transplant teams. Quality of life may be decreased due to the presence of these symptoms. Obstacles to early palliative care interventions include overestimation of survival, focus on curative intent with underestimation of palliative care needs, lack of a comprehensive understanding of hematologic malignancies and bone marrow transplant process on the side of palliative care providers, and logistical restrictions. Potential interventions include education of oncologists, palliative care providers, patients, integration of models of care pre- and posttreatment and bone marrow transplantation, development of guidelines, institutional commitment and leadership in creating new initiatives, clinical research activities to measure outcomes, and community-based participatory research. CONCLUSIONS: Early palliative care interventions are beneficial for patients with hematologic malignancies and bone marrow transplant processes. Better understanding of barriers to its implementation and development of creative initiatives is of paramount importance. New research endeavors should focus on providers' attitudes toward patients and communities.

Translation and validation of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) version 4 quality of life instrument into Arabic language.

BACKGROUND: Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) has been translated from English into several languages. Currently, there is no validated translation of FACT-BMT in Arabic. Here, we are reporting the first Arabic translation and validation of the FACT-BMT. METHODS: The study was approved by the Institutional Research Advisory Council. The Arabic translation followed the standard Functional Assessment of Chronic Illness Therapy (FACIT.org) translation methodology (with permission). Arabic FACT-BMT (50- items) was statistically validated. Cronbach's alpha for internal consistency, Spearman's rank correlation coefficients method for Inter-scale correlations and Principal Component Analysis for factorial construct validity was used. RESULTS: One hundred and eight consecutive relapsed /refractory lymphoma patients who underwent high dose chemotherapy and autologous stem cell transplant were enrolled. There were 68 males (63%) and 40 females (37%) with a median age of 29 years (range 14-62). After Arabic questionnaire pre-testing (Cronbach's alpha 0.744), the study included 108 patients. Cronbach's alpha for the entire FACT-BMT indicated an excellent internal consistency (0.90); range (0.67 to 0.91). Cronbach's alpha for sub-groups of social (0.78), emotional (0.67) and functional wellbeing was (0.88). Cronbach's alpha for bone marrow transplant (0.81), FACT-General (0.89), and FACT- Trial Outcome Index (TOI); (0.91) also revealed excellent internal consistency. Patients had high scores in all domains of quality of life, indicating that most patients were leading a normal life. This translation of FACT-BMT in Arabic was reviewed and approved for submission by the FACIT.org. CONCLUSIONS: Our data reports the first translated, validated and approved Arabic version of FACT-BMT. This will help large numbers of Arabic speaking patients undergoing stem cell/bone marrow transplantation, across the globe.

Polyphenolic Compounds Alter Stress-Induced Patterns of Global DNA Methylation in Brain and Blood.

SCOPE: Stress is a known contributor to various forms of disease in humans and animals, although mechanisms are still unknown. In animals, psychosocial stress-induced depression/anxiety phenotypes are coincidental with increased inflammation in both brain and blood. The authors recently showed that a novel treatment with a select bioactive polyphenol preparation promotes resilience to stress-mediated depression/anxiety phenotypes mice. Moreover, selective bioactive phenolic compounds within the polyphenol preparation are identified that are effective in mitigating the behavioral effects of bone marrow transplantation from stressed mice. METHODS AND RESULTS: Here, an animal model of adult stress and bone marrow transplantation is used to identify an epigenetic signature of repeated social defeat stress (RSDS) that is passed through bone marrow hematopoietic progenitor cells to naïve mice, revealing the maintenance of epigenetic memory following stress both centrally and peripherally. Further, polyphenols are administered to naïve and stress-susceptible mice, demonstrating that polyphenol treatment in mice from both susceptible and naïve donors alters global DNA methylation in the central nervous system and periphery and likewise has an effect on human blood cells after immune challenge. CONCLUSIONS: Findings highlight the enduring molecular memory of stress and the possible mechanism by which select bioactive polyphenols may promote resiliency to stress. Polyphenols may be an efficacious alternative to traditional pharmacological treatments in psychiatry.

Hematopoietic stem cell transplantation and quality of life during the first year of treatment / Transplante de células-tronco hematopoiéticas e qualidade de vida durante o primeiro ano de tratamento / Trasplante de Células Tronco Hematopoyéticas y calidad de vida durante el primer año de tratamiento

ABSTRACT Objective: to evaluate the quality of life of adult patients with hematological cancer comparing Hematopoietic Stem Cell Transplantation modalities during the first year of treatment. Method: this is an observational and longitudinal research with 55 participants. Data collection was performed in six steps: before transplantation, pancytopenia, before hospital discharge, after 100, 180 and 360 days, in a reference hospital in Brazil for this treatment. The international instruments Quality of Life Questionnaire - Core 30 and Functional Assessment Cancer Therapy - Bone Marrow Transplantation were validated and translated into Portuguese (Brazil). Results: the mean age of participants was 36 years, 65% (n = 36) had leukemia diagnosis and 71% (n = 39) had undergone allogenic transplantation. In the Quality of Life Questionnarie - Core30 instrument, the pain symptom was significant between the first and second stages, and loss of appetite between the third and fourth stages, both in the allogenic group. In the Functional Assessment Cancer Therapy - Bone Marrow Transplantation, the functional well-being domain was significant between the third and fourth stages, also in the allogenic group. Conclusions: although the aggressiveness of treatment affects quality of life, patients consider it satisfactory after the first year. There are few significant differences between autologous and allogenic patients, and both groups have recovered in the course of the process.

RESUMO Objetivo: avaliar a qualidade de vida dos pacientes adultos com câncer hematológico comparando as modalidades de Transplante de Células-Tronco Hematopoiéticas durante o primeiro ano de tratamento. Método: pesquisa observacional, longitudinal, com 55 participantes; coleta de dados em seis etapas: pré-transplante, pancitopenia, pré-alta hospitalar, pós 100, 180 e 360 dias, em um hospital referência no Brasil para esse tratamento. Foram utilizados os instrumentos internacionais Quality of Life Questionnarie-Core 30 e Functional Assessment Cancer Therapy- Bone Marrow Transplantation, validados e traduzidos para a língua portuguesa (Brasil). Resultados: média de idade 36 anos, 65% (n=36) apresentaram diagnóstico de leucemia e 71% (n=39) submeteram-se ao transplante alogênico. No instrumento Quality of Life Questionnarie - Core30, o sintoma dor foi significante entre a primeira e a segunda etapa, e perda de apetite entre a terceira e a quarta etapa, ambos no grupo alogênico. No instrumento Functional Assessment Cancer Therapy- Bone Marrow Transplantation, o domínio bem-estar funcional apresentou-se significante entre a terceira e a quarta etapa, também no grupo alogênico. Conclusões: embora a agressividade do tratamento afete a qualidade de vida, os pacientes a consideram satisfatória após o primeiro ano. Há poucas diferenças significantes entre autólogos e alogênicos, e ambos se recuperam no decorrer do processo.

RESUMEN Objetivo: evaluar la calidad de vida de los pacientes adultos con cáncer hematológico comparando las modalidades de Trasplante de Células Tronco Hematopoyéticas durante el primer año de tratamiento. Método: investigación observacional, longitudinal, con 55 participantes; recogida de datos en seis etapas: pre trasplante, pancitopenia, pre alta hospitalaria, después de 100, 180 y 360 días, en un hospital referencia en Brasil para este tratamiento. Fueron utilizados los instrumentos internacionales Quality of Life Questionnarie-Core 30 y Functional Assessment Cancer Therapy- Bone Marrow Transplantation, validados y traducidos para la lengua portuguesa (Brasil). Resultados: media de edad 36 años, 65% (n=36) presentaron diagnóstico de leucemia y 71% (n=39) se sometieron al trasplante alogénico. En el instrumento Quality of Life Questionnarie - Core30, el síntoma dolor fue significativo entre la primera y la segunda etapa, y la pérdida de apetito entre la tercera y la cuarta etapa, ambos en el grupo alogénico. En el instrumento Functional Assessment Cancer Therapy- Bone Marrow Transplantation el dominio bienestar funcional se presentó significativo entre la tercera y la cuarta etapa, también en el grupo alogénico. Conclusiones: a pesar de que la agresividad del tratamiento afecta la calidad de vida, los pacientes la consideraron satisfactoria después del primer año. Existen pocas diferencias significativas entre autólogos y alogénicos, y ambos se recuperan en el transcurso del proceso.

Espiritualidade e religiosidade em mães de crianças com câncer hematológico / Spirituality and religiosity in mothers of children with hematologic cancer / Espiritualidad y religiosidad en madres de niños con cáncer hematológico

Espiritualidade e religiosidade constituem fontes significativas de suporte emocional e social para familiares de crianças gravemente doentes, sobretudo no caso de doenças potencialmente terminais. O transplante de células-tronco hematopoiéticas (TCTH) é um dos tratamentos mais arrojados e promissores que surgiram nas últimas décadas para doenças onco-hematológicas. Trata-se de procedimento altamente invasivo e que envolve risco de morte em decorrência de seus efeitos adversos. Por isso, exige o envolvimento intenso de um cuidador familiar durante todas as suas etapas, o que expõe esse membro da família a estressores contínuos. O objetivo deste estudo foi investigar o sentido atribuído à espiritualidade e religiosidade por mães de crianças com câncer hematológico submetidas ao transplante de células-tronco hematopoéticas.Trata-se de uma pesquisa qualitativa, de delineamento descritivo-exploratório, com fundamentação fenomenológica. Foram entrevistadas dez mães. As entrevistas individuais foram audio gravadas e, posteriormente, transcritas e submetidas à análise compreensiva dos relatos. Espiritualidade e religiosidade emergiram nas falas das participantes, coloridas pelas diferentes crenças religiosas professadas, como fonte de apoio e alento para a cuidadora familiar, auxiliando-a a suportar as adversidades inerentes à situação de ser acompanhante de paciente submetido a procedimento de alto risco. Os resultados corroboram a importância da religiosidade e da espiritualidade como recursos de enfrentamento.

Spirituality and religiosity are important sources of emotional and social support for families of severely ill children, specially when it comes to potentially terminal illnesses. Hematopoietic stem cell transplantation is one of the most daring and promising alternatives that have emerged in the last decades to treat onco-hematological diseases. It is a highly invasive procedure and involves risk of death due to its adverse effects, therefore, it requires close involvement of a family caregiver during allof its stages, which exposes this family member to continuous stressors. The goal of this study was to investigate the meaning attributed to spirituality and religiosity by mothers of hematologic cancer patients undergoing hematopoietic stem cell transplantation. This is a qualitative research, with a descriptive-exploratory design and a phenomenological fundamentation. Ten mothers whose children had undergone hematopoietic stem cell tranplantation were interviewed. Individual interviews were audio-taped and later transcribed and subjected to the comprehensive analysis of the reports. Spirituality and religiosity emerged from the speeches of the participants colored by different professed religious beliefs as a source of support and encouragement for familycaregivers, helping them to deal with the adverse situation of being companion of a patient undergoing a high-risk procedure. Results corroborated that spirituality and religiosity are important coping resources.

Espiritualidad y religiosidad constituyen una importante fuente de apoyo emocional y social para las familias de niños gravemente enfermos, especialmente en lo que se refiere a enfermedades potencialmente terminales. El trasplante de células madre hematopoyéticas es uno de los tratamientos más audaces y más prometedores que han surgido en las últimas décadas para enfermedades onco-hematológicas. Es un procedimiento altamente invasivo que implica riesgo de muerte debido a sus efectos adversos. Por lo tanto, se requiere la participación activa de un cuidador familiar durante todas sus fases, lo que expone a este miembro de la familia a continuos factores de estrés. El objetivo de este estudio fue investigar el significado dado a la espiritualidad y la religiosidad de las madres de niños con cáncer hematológico sometidos a trasplante de células madre hematopoyéticas. Se trata de un estudio cualitativo, con diseño descriptivo y exploratorio y fundamentación fenomenológica. Se entrevistaron a diez madres. Las entrevistas individuales fueron grabadas en audio y posteriormente transcritas y sometidas a análisis comprehensiva de los informes. La espiritualidad y la religiosidad surgieron en los discursos de las participantes, coloreado por las diferentes creencias religiosas profesas como fuente de apoyo y aliento a las madres cuidadoras, lo que ayuda a soportar las dificultades inherentes a la situación de ser compañera de un paciente sometido a un procedimiento de alto riesgo. Los resultados confirman la importancia de la espiritualidad y la religiosidad como recurso de afrontamiento