Annals of the American Thoracic Society
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Rationale Patients with pulmonary arterial hypertension (PAH) or their caregivers may seek information about their disease online, but the accuracy and quality of websites on PAH is not known. Objectives To assess the quality, reliability and accuracy of information on websites about PAH. Methods We searched Google, Yahoo, and Bing for "pulmonary arterial hypertension" and screened the first 200 sites from each search engine. ⋯ A minority of websites addressed exercise/rehabilitation, palliative care, pregnancy, and financial concerns relevant to patients. Conclusions Most internet websites on PAH were not easily readable, comprehensive, or transparent. Using a systematic appraisal approach, we identified the highest-quality internet websites with balanced and accurate coverage of relevant issues and treatment options for patients with PAH, which may be useful for patients, caregivers, and clinicians.
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Randomized Controlled Trial
Nurse-Led Palliative Care Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis.
Rationale: Patients with idiopathic pulmonary fibrosis (IPF) and their caregivers experience stress, symptom burden, poor quality of life, and inadequate preparedness for end-of-life (EOL) care planning as the disease progresses. The hypothesis for this study was that the early introduction of palliative care in the course of IPF would improve knowledge and preparation for EOL, patient-reported outcomes, and advance care planning in patients with IPF and their caregivers. Objectives: We sought to determine the feasibility, acceptability, and efficacy of a nurse-led early palliative care intervention entitled "A Program of SUPPORT" (Symptom management, Understanding the disease, Pulmonary rehabilitation, Palliative care, Oxygen therapy, Research participation, and Transplantation) in patients with IPF and their caregivers. ⋯ This nurse-led intervention demonstrated acceptability and efficacy in knowledge and advance care planning completion in patients and in knowledge, disease preparedness, and confidence in caregivers. Future research should identify additional strategies, including telemedicine resources to reach additional patients and their caregivers earlier in their disease course. Clinical trial registered with clinicaltrials.gov (NCT02929017).