Palliative Care in Pulmonary Fibrosis
Condition: Idiophatic Pulmonary Fibrosis
MeSH terms: Pulmonary Fibrosis; Fibrosis
Study type: Interventional

Summary: 
      The investigators will examine the effect of introducing palliative in patients with
      end-stage idiopathic pulmonary fibrosis, refractory to the pharmacological treatment or not
      deemed to be treated, on patient-reported outcomes and end-of-life care. The investigators
      will randomly assign patients who receive either early palliative care integrated with
      standard respiratory care or standard respiratory care alone.

      Quality of life and symptoms will assessed at baseline and at 12 weeks The primary outcome
      will be the change in the quality of life and symptoms at 12 months.
    

Detailed description: 
      Advanced fibrosing interstitial lung disease (ILD) is a group of often progressive and
      incurable conditions.

      The most common form of ILD, idiopathic pulmonary fibrosis (IPF), is associated with poor
      survival, and high symptom burden and poor quality of life as the disease progresses.

      ILD represents an increasing proportion of patients with chronic hypoxemic respiratory
      failure.

      Despite this poor prognosis, palliative care remains underused in patients with ILD. This may
      be due to under-recognition of the palliative care needs and symptom burden, or unfamiliarity
      and discomfort with palliative therapies.

      Though oncology has largely embraced earlier integration of palliative care, which has
      translated into improvements in end-of-life (EOL) care for patients with lung
      cancer,palliative and EOL care for non-malignant diseases are now gaining increased
      attention.

      In pulmonary disease, this research has mainly focused on COPD and demonstrated a significant
      burden of unmet palliative care needs and lower quality of EOL care compared with patients
      with cancer. Similar attention is only beginning to be paid to ILD, but symptom burden and
      quality of EOL care in patients with ILD have yet to be quantified, and furthermore none has
      so far investigated the possible role of palliative care in these patients.

      The investigators will examine with the present study the effect of introducing palliative in
      patients with end-stage idiopathic pulmonary fibrosis, refractory to the pharmacological
      treatment or not deemed to be treated, on patient-reported outcomes and end-of-life care. The
      investigators will randomly assign patients who receive either early palliative care
      integrated with standard respiratory care or standard respiratory care alone.

      Quality of life and symptoms will assessed at baseline and at 12 weeks The primary outcome
      will be the change in the quality of life and symptoms at 12 months.
    

Intervention name(s): palliative care program; standard respiratory care
Intervention type(s): Other; Other
Intervention description(s): The program includes psychological support, spiritual care and respiratory therapist support; the usual standard pharmacological care plus oxygen therapy
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care