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.

O impacto do transplante de células-tronco hematopoiéticas na qualidade de vida dos pacientes / The impact of hematopoietic stem cell transplantation on patients' quality of life

Resumo: Os objetivos desta dissertação foram descrever o impacto do transplante de células tronco hematopoiéticas na qualidade de vida de pacientes transplantados e elaborar um vídeo com seus relatos, demonstrando as estratégias de enfrentamento da doença que possibilitaram melhorar sua qualidade de vida. Para sua estruturação procurou-se atender as recomendações do Consolidated Criteria for Reporting Qualitative Research, o que foi realizado em duas etapas: na primeira foi feita uma pesquisa qualitativa, descritiva e exploratória, com cinco participantes, de julho a agosto de 2017, em um hospital paranaense que é referência para este tipo de tratamento no Brasil. Os dados foram obtidos por meio de entrevista semiestruturada, autoaplicada em suas residências e em formato de vídeo, com questões sobre a vivência da terapêutica. E, em seguida, tratados com a técnica de Análise de Conteúdo. Após, foi realizada a edição para a composição de um vídeo. Os resultados demonstraram que, nesse estudo, a idade para o transplante de células-tronco hematopoiéticas dos participantes variou entre 21 e 52 anos, e houve a predominância de diagnósticos de leucemias e anemia aplásica severa. Emergiram cinco categorias: o impacto do adoecimento na descoberta da doença; as dificuldades do tratamento e alterações na qualidade de vida; a família como o primeiro suporte no enfrentamento da doença; espiritualidade e religiosidade como estratégias de enfrentamento, e a superação e o sentimento de gratidão. A presente pesquisa concluiu que os impactos na percepção da qualidade de vida se deram nos âmbitos familiar, social, emocional e físico. E as estratégias de enfrentamento que o estudo mostrou foram o amparo e o acolhimento da família, a religiosidade e a espiritualidade.

Abstract: The objectives of this dissertation were to describe the impact of hematopoietic stem cell transplantation on the quality of life of transplanted patients and to elaborate a video with their reports, demonstrating the overcoming strategies of the disease that enabled them to improve their quality of life. The purpose of this study was to meet the recommendations of the Consolidated Criteria for Reporting Qualitative Research, which was carried out in two stages: a qualitative, descriptive and exploratory study that was carried out with five participants from July to August 2017, in a hospital in Paraná considered a reference for this type of treatment in Brazil. The data were obtained through semi-structured interviews, self-applied in their homes and in video format, with questions about the experience of the therapy. And then selected and edited with the Content Analysis technique. Afterwards, editing was done for the composition of a video. The results showed that in the present study, the age for the transplantation of the hematopoietic stem cells of the participants ranged from 21 to 52 years old and there was a predominance of diagnoses of leukemia and severe aplastic anemia. Five categories emerged the impact of illness on the discovery of the disease; the difficulties of treatment and changes in quality of life; the family as the first support in coping with the disease; spirituality and religiosity as overcoming strategies, and the overcoming and feeling of gratitude. The present study concluded that the impacts on the perception of the quality of life occurred in the family, social, emotional and physical environments. And the coping strategies that the study showed were the shelter and shelter of the family, religiosity and spirituality.

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.