¿Qué saben los pacientes adultos con fibrosis quística de su enfermedad? Adherencia al tratamiento

Introduction

Cystic fibrosis (CF) has an increased of the survival due to the multidisciplinary advance. We have proposed to discover if the patients of the Unit of adults of CF know and fulfill their usual treatment, with the aim of seeing what level of knowledge they have their disease and its implications.

Material and methods

We have carried out a simple blind, cross-sectional descriptive study, with ordinal qualitative variable in an adult CF Unit who answered a questionnaire in which they were asked about the treatment of the disease and its administration, toxic habits, knowledge of their disease and concern about their present or future.

Results

The questionnaire was answered by 35 (40%) during the years 2000–2001, with a mean age of 31.43 ± 8.49 years. When asked about their knowledge of the disease, 94.3% (33 patients) considered they were informed about it and 91.4% (32 patients) said the information was adequate. What concerned them the most was the deterioration of their quality of life (14.3%-5 patients), concern about the future (11.4%-4 patients), the limitations in their daily life (8.6%-3 patients) and mortality or having recurrences (2.9%-1 patient). Four patients (11.4%) did not answer this question.

Conclusions

most of the patients who answered the survey knew about their disease, its treatment and were clear about their concerns for the future. However, less than half of all the patients answered, which indicates that more investigations are necessary to find the causes of this problem.