Factores relacionados con el proceso de información en pacientes con cáncer avanzado

Abstract

Objective: Our goal was to determine the degree of knowledge advanced cancer patients have about their condition while being cared for by a Hospital Palliative Care Team (HPCT) in a tertiary referral hospital, and the factors associated therewith. Methods: A prospective observational study was carried out in a cohort of patients cared for by an HPCT. All of them complied with the following inclusion criteria: over 18 years of age, good understanding and use of the Spanish language, PPS ≥ 30, absence of cognitive impairment that could potentially hamper the interviewing process, and signing of an informed consent form. A semi-structured interview was performed during which medical history data were obtained. A scale was developed to assess degree of knowledge about their disease in patients with advanced cancer. Scores ranged from 0 to 4, with 1 or 0 being assigned to different aspects of the condition involved. Basic descriptive statistics were used to express quantitative variables as mean (standard deviation) and median (interquartile range) values, and qualitative variables as proportions. In order to study the association of qualitative variables the Chi-squared or Fisher’s exact tests were used; the Mann–Whitney U-test was used to compare mean values for independent groups. The analysis was performed using the SPSS v.15 package. Results: Fifty interviews were performed; 82% of subjects were correctly informed about their illness, and 76% knew it was a serious disease, although only 47% of patients knew that the goal of their treatment was not total recovery, and only 39% were aware that they could not be cured. After analyzing the relationship between the factors under study and the degree of knowledge about the course of disease, clinically relevant differences were found (differences ≥ 0.8 points within the scale), which were statistically significant with respect to educational background (low: 2.1 ± 1.3 vs. high: 3.3 ± 0.9; p = 0.03) and number of visits to the emergency room over the previous six months (≤ 2 visits, 1.9 ± 1.2 vs > 2 visits, 2.8 ± 1.3; p = 0.02). Conclusions: In this cohort of patients knowledge was poor about disease prognosis; consequently, patients could hardly take part in the important decisions required about the end of their lives. Although these data may not be extrapolated, they do suggest the need for greater efforts by professionals in assessing the need for information patients have about their disease. Also, the study highlights the need for developing a tool to help standardize the process of assessing and recording degree of disease knowledge. A disease knowledge scale is proposed to assess knowledge regarding diagnosis, severity, treatment goals, and end-of-life awareness. Further studies are needed to evaluate its usefulness for clinical practice, and to help carry out informative studies.