RESUMO
OBJECTIVES: The aim of this study was to identify future research agendas that reflect the concerns and unexplored areas of interest for patients with life-threatening cancer, their relatives and the clinical specialists during the cancer trajectory. METHODS: Six focus group discussions were conducted addressing two different cancer trajectories: primary malignant brain tumour and acute leukaemia. For each of the two cancer trajectories, separate FGIs were carried out with patients, relatives and clinical specialists to identify important concerns, challenges and uncertainties. The FGIs were video/audio-recorded, transcribed and thematically analysed within and across FGI groups to construct research topics. Finally, the literature was reviewed for existing evidence concerning the identified research topic(s) to strengthen the suggested research agendas. RESULTS: New research agendas related to high-grade glioma brain tumour and acute leukaemia with corresponding research questions were formulated within the topics of supportive care/palliation, education/information, rehabilitation, complementary and alternative therapy and organization of health care. CONCLUSION: User involvement in identifying research agendas has the potential to improve quality of care for patients and caregivers across the cancer trajectory, while minimizing the gap in research between the healthcare user and healthcare provider.
Assuntos
Neoplasias Encefálicas/terapia , Terapias Complementares , Atenção à Saúde , Glioma/terapia , Leucemia/terapia , Cuidados Paliativos , Educação de Pacientes como Assunto , Pesquisa , Adulto , Idoso , Neoplasias Encefálicas/reabilitação , Cuidadores , Feminino , Grupos Focais , Glioma/reabilitação , Pessoal de Saúde , Humanos , Leucemia/reabilitação , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de VidaRESUMO
For many years, the right hemisphere (RH) was considered as nondominant, especially in right-handers. In neurosurgical practice, this dogma resulted in the selection of awake procedure with language mapping only for lesions of the left dominant hemisphere. Conversely, surgery under general anesthesia (possibly with motor mapping) was usually proposed for right lesions. However, when objective neuropsychological assessments were performed, they frequently showed cognitive and behavioral deficits after brain surgery, even in the RH. Therefore, to preserve an optimal quality of life, especially in patients with a long survival expectancy (as in low-grade gliomas), awake surgery with cortical and axonal electrostimulation mapping has recently been proposed for resection of right tumors. Here, we review new insights gained from intraoperative stimulation into the pivotal role of the RH in movement execution and control, visual processes and spatial cognition, language and nonverbal semantic processing, executive functions (e.g., attention), and social cognition (mentalizing and emotion recognition). These original findings, which break with the myth of a nondominant RH, may have important implications in cognitive neurosciences, by improving our knowledge of the functional connectivity of the RH, as well as for the clinical management of patients with a right lesion. In brain surgery, awake mapping should be considered more systematically in the RH. Moreover, neuropsychological examination must be achieved in a more systematic manner before and after surgery within the RH, to optimize care by predicting the likelihood of functional recovery and by elaborating specific programs of rehabilitation.