Pacientes pediátricos oncológicos fora de possibilidades terapêuticas curativas / Pediatric oncology patients in palliative care: evaluation of symptoms, depression, fatigue and quality of life

RESUMO

Atualmente o câncer infantil é considerado uma doença potencialmente curável, atingindo índices de até 70% de cura. ... No Departamento de Pediatria do Hospital A.C. Camargo, 70 crianças foram acompanhadas em cuidados paliativos durante o período de agosto de 2003 a dezembro de 2006. Nossos objetivos incluíram validar nesta população um escore de predição de tempo de sobrevida previamente descrito, além de avaliar o impacto de sintomas, fadiga, depressão e qualidade de vida. Fatores que influenciaram o local do óbito também foram analisados. ... Os pacientes apresentaram, ao início do acompanhamento em cuidados paliativos, uma média de 10,5 sintomas, variando de 2 até 22 sintomas para um único paciente. Os dez sintomas mais prevalentes foram dor (68,6%), estar ou sentir-se nervoso (57,1%), estar ou sentir-se sonolento (55,7%), falta de energia (51,4%), sentimento de tristeza (48,6%), perda de apetite (47,1%), perda de peso (47,1%), boca seca (40,0%), náusea ou sensação de que poderia vomitar (40,0%) e estar ou sentir-se irritado/irritável (38,6%). ... As variáveis sintomas, fadiga, depressão e qualidade de vida não se mostraram significativas na análise múltipla e, por conseqüência, não houve necessidade de integrá-las a um novo escore. ... A predição de sobrevida, bem como do local do óbito, através da análise de variáveis de fácil obtenção, são dados importantes na busca para oferecer suporte e informação, além de possibilitar um planejamento melhor do cuidado prestado ao paciente e sua família neste momento tão difícil...

ABSTRACT

Childhood cancer is considered a curable disease reaching approximately 70% of survival. Unfortunately, despite the advances and technological resources available for treating childhood cancer, there are patients and families who may not be cured and will need comfort and dignity by incorporating palliative care assistance. At the Pediatric Department of Hospital A. C. Camargo 70 children in palliative care were followed and evaluated from August 2003 to December 2006. Our aims included the validation of a score predicting survival in this populations and evaluate the impact of symptoms, fatigue, depression and quality of life in the length of survival. Factors associated with location of death were also evaluated. The score predicting survival was validated in this population and included the following variables: diagnosis (leukemias/lymphomas or solid/central nervous system tumors), home care provider (the mother or other person), anemia (hemoglobin level less than 8.0 g/dl) and Play performance status score given by the home care provider (p<0.001). We were able to classify the patients into 3 categories according to the probability of survival at 60 days after the inclusion of palliative care. At the beginning of palliative care, patients presented a mean of 10.5 symptoms, ranging from 2 to 22 symptoms for one child. The ten symptoms with higher prevalence were: pain (68.6%), feeling nervous (57.1%), feeling drowsy (55.7%), lack of energy (51.4%), sadness (48.6%), lack of appetite (47.1%), weight loss (47,1%), dry mouth (40.0%), nausea (40.0%) and feeling irritable (38.6%). Data from patients with 7 to 12 years old, showed that none of them presented symptomatology for depression, 29.4% presented higher scores for fatigue and just one of them had unsatisfactory quality of life. Regarding adolescents (older than 12 years), 4 out of 9 adolescents who answered the questionnaires presented symptomatology for depression and 45.5% presented higher scores for fatigue. The variables symptoms, fatigue, depression and quality of life were not significantly associated with length of survival and therefore it was not necessary to develop a new score. Regarding location of death, 22.2% of our patients died at home and 27.0% died at our hospital with a less than 48 hours period of hospitalization. Age and number of symptoms were the only variables associated with location of death: a patient with 13 years old or older had 5.3 the odd of dying at the hospital when compared with the youngest (p=0,016) as well as a patient with 11 symptoms or more at the transition to palliative care had 3.1 the odd of dying at the hospital when compared with a patient with at most 10 symptoms (p=0,050). The improvement of the techniques to predict survival as well as to determine the odds of specific location of death through the analysis of variables configure important data in order to offer support and information. This can enable the health care team to offer a better care to the patient and his family in such a difficult period (AU)