Pathways from symptoms to medical care: A descriptive study of symptom development and obstacles to early diagnosis in brain tumour patients

Abstract

Background. The time between experiencing symptoms and treatment in cancer diseases is a time of insecurity and despair. Brain tumour disease is a severe disease with dramatic manifestations and it is important that this time be kept as short as possible. Methods. A consecutive sample of 28 patients with malignant gliomas and their spouses were interviewed about symptom development, help-seeking and experiences of medical care. The cumulative development of their symptoms was described and factors acting as obstacles to medical care were identified. Results. Most spouses witnessed months of global dysfunction preceding the symptom leading to physician consultation. The patient factors 'less alien symptoms', 'personality change' and 'avoidance'; the spouse factors 'spouse's passivity' and 'spouse's successive adaptation'; and the physician factors 'reasonable alternative diagnosis', 'physician's inflexibility' and 'physician's personal values' were identified as obstacles on the pathway to appropriate medical care. The importance of acknowledging the power of the spouse as a provider of substantial information from everyday life facilitating differential diagnosis is stressed.