While home mechanical ventilation (HMV) prolongs survival in selected groups of patients, its use is associated with progressive dependency in basic activities, and many users will require informal care in their homes. The workload assumed by the informal caregivers can have financial, physical, and psychological repercussions. Our objective was to study dependent patients on HMV, and to describe the impact of the situation on their caregivers.

In November 2007, we undertook a descriptive cross-sectional study of patients in stable condition who had been receiving HMV for at least 6 months. Using the Katz index, we identified dependent patients (class C and higher). In this group we studied social and economic variables, comorbidity, and need for care. The Zarit interview was used to evaluate the caregiver burden.

Of the 66 patients enrolled, 20 (30%) were dependent. The mean (SD) age in this group was 60 (12) years and 46% were women. These patients had been on HMV for a mean of 45 months, and 40% were using ventilatory support for over 12hours per day. Care was provided by women in the majority of cases (77%), and 58% were sole caregivers. The mean age of these carers was 51 years, and 70% of them also worked outside the home. In 7 cases (35%), the caregiver scored over 40 on the Zarit index.

One third of the patients required informal care in order to remain in their homes. Most of the caregivers were women, and one third were overburdened or were at risk of becoming so. Changes involving both physicians and the health authorities are needed to provide satisfactory care to this group of patients.

La ventilación mecánica domiciliaria (VMD) aumenta la supervivencia en grupos seleccionados de pacientes, pero se asocia a dependencia progresiva para las actividades básicas y muchos pacientes necesitarán cuidadores informales en su domicilio. Éstos asumen una carga de trabajo que puede tener repercusiones económicas, físicas y/o psíquicas. Nuestro objetivo ha sido estudiar a pacientes con VMD y dependencia, y describir el impacto sobre sus cuidadores.

En noviembre de 2007 estudiamos de forma descriptiva y transversal a pacientes con un mínimo de 6 meses en VMD, en situación estable. Se identificó a los dependientes aplicando el índice de Katz (índice C y superiores). En este grupo se estudiaron variables socioeconómicas, de comorbilidad y de necesidad de cuidados. Para establecer la sobrecarga del cuidador se aplicó el índice de Zarit.

De los 66 pacientes incluidos, 20 (30%) mostraban dependencia (edad media ± desviación estándar: 60±12 años; 46% mujeres), llevaban una media de 45 meses en VMD y el 40% recibía ventilación durante más de 12h al día. En los cuidadores, el 58% era cuidador único, la mayoría eran mujeres (77%), la edad media era de 51 años y un 70% trabajaba además fuera del domicilio. El índice de Zarit en 7 casos (35%) era superior a 40.

En nuestra serie, una tercera parte de los pacientes precisan cuidadores informales para poder permanecer en su entorno. El cuidador es mayoritariamente del sexo femenino, y un tercio tiene sobrecarga real o corre el riesgo de presentarla. Para adecuar la asistencia a este colectivo harán falta cambios que impliquen a los médicos y a la Administración sanitaria.