RESUMEN
Dyspnoea in chronic respiratory disease is a very frequent symptom with a significant impact on quality of life (QoL). The aim of palliative care is to improve and maintain the QoL of patients with life-threatening diseases and its early implementation is now recommended in many evolving pulmonary diseases. The effectiveness of symptomatic treatments to relieve refractory breathlessness (morphine, oxygen supply, hypnosis, pulmonary rehabilitation) is often limited. These measures are more effective if offered early in the holistic management of the patient. This article illustrates and describes, with the help of a clinical situation, these treatments options and the collaborations established between the palliative care and pneumology divisions.
La dyspnée en lien avec une maladie respiratoire chronique est un symptôme très fréquent avec un impact important sur la qualité de vie (QoL). Les soins palliatifs ont pour objectif d'améliorer la QoL et les symptômes des personnes atteintes de maladies potentiellement mortelles et sont recommandés dans la prise en charge usuelle de nombreuses pathologies pulmonaires évolutives. Les traitements symptomatiques de la dyspnée réfractaire (morphine, oxygène, hypnose, réadaptation respiratoire) ont souvent un effet limité. Ces mesures sont d'autant plus efficaces si elles sont proposées précocement dans la prise en charge holistique du patient. Cet article illustre et décrit, à partir d'une situation clinique, ces modalités thérapeutiques et les collaborations établies entre les soins palliatifs et la pneumologie.
Asunto(s)
Cuidados Paliativos , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Calidad de Vida , Disnea/etiología , Disnea/terapia , Disnea/diagnóstico , Morfina , Enfermedad Pulmonar Obstructiva Crónica/complicaciones , Enfermedad Pulmonar Obstructiva Crónica/terapiaRESUMEN
INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs).Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately. METHODS AND ANALYSIS: This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL.Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation. ETHICS AND DISSEMINATION: This study protocol received ethical approval on 24 May 2022 from the Commission cantonale d'éthique de la recherche sur l'être humain-Canton of Vaud. The identification number is 2021-02477.