Ana Paula Mastropietro

Apoio psicológico na terminalidade: ensinamentos para a vida

In the middle of the growing denial of suffering in contemporary society, death is increasingly banished from the daily reality and confined to hospitals. This study aims to describe an experience of psychological intervention with a patient with acute lymphoid leukemia, a potentially fatal disease, focusing on the monitoring provided throughout their treatment, from diagnosis to lack of therapeutic possibilities, until the moment of his death in a ward of a general hospital in the context of palliative care . The body of the study consisted of the clinical material systematized on the basis of the psychological interventions carried out over a period of two years (2001-2003). An effort was made to understand the phases of mourning experienced by the patient and the possibility of psychological intervention as death approached. The possibility of being present throughout the stages of illness culminating in the moment of death represented a unique and transforming experience both for the patient and for the psychologist who assisted him at the time of his departure..

Relação entre renda, trabalho e qualidade de vida de pacientes submetidos ao transplante de medula óssea

Embora a literatura aponte a necessidade de avaliacao das condicoes de trabalho, suporte social e familiar dos pacientes submetidos ao transplante de medula ossea (TMO), sao poucas as pesquisas nacionais acerca da influencia do perfil socioeconomico sobre a qualidade de vida do paciente transplantado. Resultados de estudos internacionais nao sao conclusivos quanto a associacao entre estas variaveis e a readaptacao pos-TMO. O objetivo do presente estudo foi identificar possiveis relacoes entre renda, trabalho e qualidade de vida em pacientes submetidos ao TMO. A amostra foi composta por 62 pacientes adultos, com 4,3 anos de transplante em media. Para a coleta de dados foram utilizados: Instrumental de Avaliacao Socioeconomica, Entrevista de Recuperacao Pos-TMO, SF-36 e FACT-BMT. Os resultados mostraram que 43,5% dos pacientes tinham renda familiar de ate dois salarios minimos. A situacao de afastamento do trabalho foi encontrada em 46,7% dos pacientes. A variavel renda foi significativamente associada com qualidade de vida, sentimento de competencia pessoal e ajustamento psicologico do paciente.

Qualidade de Vida de Sobreviventes do Transplante de Medula Óssea (TMO): Um Estudo Prospectivo

This research aimed to analyze the quality of life of bone marrow transplantation (BMT) survivors. A longitudinal evaluation was carried out pre-BMT, immediately after BMT and post-BMT. The initial sample included 17 patients, 10 of who were evaluated in the three periods. The data collection instruments were: MOS SF-36 and FACT-BMT. The results revealed a significant decrease in quality of life when the patient left the nursing ward, especially in social and physical features. However, recovery in these aspects and improvement of others were observed, such as functional capacity post-BMT. No significant differences were observed between scores in the pre-BMT period and one year after the transplantation.

Impact of autologous hematopoetic stem cell transplantation on the quality of life of patients with multiple sclerosis.

OBJECTIVE To evaluate the impact of autologous hematopoetic stem cell transplantation (autoHSCT) in the health related quality of life (HRQL) in patients with multiple sclerosis. METHOD The sample consisted of 34 patients, over 18 years old, treated at a University Hospital in the state of São Paulo, Brazil. For data collection MOS SF-36 and EDSS scales were applied at three time points: admission of the patient, hospital discharge and 1 year posttransplantation. RESULTS 27 patients (79%) showed stabilization or neurological improvement 1 year posttransplantation. At this time point, there was statistically significant improvement in all domains of the HRQoL. When EDSS scores were correlated with the domains of the MOS SF-36 scale, statistically significant correlations were found with physical functioning at the three time points analysed. CONCLUSION In spite of the high risk of complications of the procedure, the HSCT had positive impact in the health related quality of life.

Bone Marrow Donation from the Perspective of Sibling Donors

Este estudio objetivo caracterizar el perfil socio demografico y describir la percepcion, de hermanos donadores de medula osea, acerca de la donacion. Se trata de estudio descriptivo, exploratorio y con recorte longitudinal. Participaron 20 donadores-relacionados de medula osea, con edades entre 18 y 42 anos (promedio=30,5 anos, de=7,47). Fueron utilizadas entrevistas, aplicadas antes e inmediatamente despues de la donacion. Fue realizado un analisis estadistico descriptivo de los datos socio demograficos y analisis de contenido categorial de los datos cualitativos. En las entrevistas antes de la donacion aparecieron como eventos causantes de estres: el enfermarse, el tratamiento del hermano y la responsabilidad de ser los donadores. En el periodo posterior a la donacion fue relatada ansiedad (en la vispera y en el dia de la donacion), dolor en el dia siguiente, y reconocimiento del apoyo del equipo como elemento facilitador del proceso de donacion. Frente a lo encontrado, se recomienda que el equipo planifique estrategias de intervencion que permitan atender las necesidades especificas de los donadores.

Repercussões psicológicas do transplante de medula óssea no doador relacionado

The development of bone marrow transplantation (BMT) in the last decades allowed the treatment of diseases which were invariably deadly beforehand. Among the types of transplantations recently accomplished, the allogenic demands the active participation of a member of the family, usually the brother, who donates the bone marrow. The aim of the present study is to analyze the psychological repercussions of this donation in the related donors. The sample was composed of ten subjects, linked to the Unit of Bone Marrow Transplantation of the HCFMRP-USP. The applied instruments were: interview script, scales e projective techniques. The results demonstrate that the level of anxiety of the subjects is the expected, but stress symptoms also appear. The individuals stated they felt anxious, painful and worried the day after the donation, but they believe that the donation was much easier than they had expected. Finally, in relation to the data of the projective techniques, higher levels of emotional susceptibility, sugestionability and dependence were detected.

Qualidade de vida e transplante de células-tronco hematopoéticas alogênico: um estudo longitudinal

Este estudo teve como objetivo avaliar a qualidade de vida de pacientes submetidos ao transplante de celulas-tronco hematopoeticas alogenico, comparando as fases pre-transplante de celulas-tronco hematopoeticas, o momento do isolamento protetor na Enfermaria e o pos-transplante de celulas-tronco hematopoeticas imediato. A amostra foi composta por sete pacientes (quatro homens e tres mulheres) submetidos ao transplante de celulas-tronco hematopoeticas no primeiro semestre de 2008. Na coleta de dados foi utilizado o Questionario Generico de Avaliacao de Qualidade de Vida (SF-36), aplicado individualmente em situacao face a face. A comparacao das medias obtidas nas fases pre-transplante de celulas-tronco hematopoeticas e Enfermaria evidenciou diferenca estatisticamente significante nos dominios Capacidade Funcional (p=0,022) e Dor (p=0,036). Comparando-se as etapas da Enfermaria e do pos-transplante de celulas-tronco hematopoeticas, evidenciou-se diferenca significativa no Estado Geral de Saude (p=0,036). Nao foram encontradas diferencas estatisticamente significantes entre as variaveis no pre e pos-transplante de celulas-tronco hematopoeticas. Desse modo, comparando-se as tres etapas do transplante foi possivel verificar que houve depreciacao da qualidade de vida durante o isolamento protetor na Enfermaria, seguida de recuperacao dos aspectos mensurados.

Impact of autologous hematopoietic stem cell transplantation on the quality of life of type 1 diabetes mellitus patients

Este estudo teve como objetivo avaliar a qualidade de vida relacionada a saude (QVRS) de pacientes com diabetes mellitus tipo 1 (DM1) submetidos ao Transplante de Celulas-Tronco Hematopoeticas (TCTH). O estudo e parte de um protocolo de pesquisa pioneiro no mundo, que testa a aplicabilidade do TCTH como nova abordagem terapeutica no DM1. Foram investigados 14 pacientes, que constituiram a populacao de pessoas internadas na enfermaria da Unidade de Transplante de Medula Ossea de um hospital universitario, no periodo de outubro de 2006 a dezembro de 2007. Os pacientes foram avaliados na admissao e no retorno ambulatorial 100 dias pos-transplante com o questionario de qualidade de vida SF-36. Os resultados mostraram que, 100 dias apos o transplante, a qualidade de vida apresentou valores superiores ao pre-TCTH, com diferencas significantes nos Aspectos Fisicos (p = 0,009), Vitalidade (p = 0,02) e Saude Mental (p = 0,04), evidenciando significativa apreciacao nesses dominios apos o procedimento. Os resultados sugerem que houve melhora na QVRS pos-TCTH.

Percepção de pacientes com diabetes mellitus tipo 1 sobre o transplante de células-tronco hematopoéticas

O objetivo deste estudo foi investigar a percepcao de pacientes com diabetes mellitus tipo 1 acerca do transplante de celulas-tronco hematopoeticas (TCTH). Participaram do estudo 12 pacientes, com idades entre 16 e 24 anos. Foi aplicado um roteiro de entrevista semiestruturada antes e um ano apos o TCTH. Os relatos foram submetidos a analise de conteudo tematica e agrupados em tres categorias: impacto do adoecimento, vivencia do TCTH e retomada do cotidiano. Os resultados evidenciaram que, apesar de se tratar de um procedimento altamente invasivo e ameacador, os participantes foram capazes de identificar ganhos e refletir sobre as perdas advindas dessa situacao-limite. Puderam perceber possibilidades de se beneficiarem do TCTH e vislumbraram no transplante uma oportunidade para alem das inevitaveis dificuldades e limitacoes impostas pela terapeutica.

Impacto da DECH crônica na qualidade de vida pós-TCTH alogênico

The aim of this work was to identify possible relationships between chronic Graft versus host disease (GVHD), quality of life and psychosocial adjustment in patients submitted to hematopoietic stem cell transplantation (HSCT). A cross-sectional correlation study was performed of a sample of 62 patients submitted to HSCT. To collect data we used the following instruments: Questionnaire for post-HSCT data, SF-36, FACT-BMT, HAD and LSSI. The standardized instruments were applied individually and the results listed according to the recommendations made in the literature for each technique, with the exception of the Post-HSCT questionnaire; this was recorded and later the contents accurately transcribed in full and the replies were submitted to thematic content analysis. The results obtained in other instruments were statistically analyzed to assess associations between variables and their respective degrees of statistical significance. The variable GVHD is predictive of a poorer quality of life and greater susceptibility to anxiety (χ2 = 4.56; p = 0.03) as patients suffering from GVHD had lower rates in most domains of the quality of life. This finding of a drop in the quality of life after HSCT is an indicator that should be taken into account by the healthcare team, as HSCT is becoming more and more important as a therapeutic option for many serious disease.