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Idiopathic pulmonary fibrosis and other forms of fibrosing interstitial lung disease (F-ILD) are life-altering conditions that increasingly deprive patients and their caregivers of their quality of life and force them to alter their life plans. Comprehensive supportive care for patients with F-ILD embraces a holistic approach, based on the development of a strong partnership between patients, caregivers and the healthcare team. It seeks to identify patients' needs and honor their wishes, and aims to help patients maintain their quality of life at the highest level possible, prevent or alleviate suffering and ensure a dignified death. To achieve these aims, comprehensive care should encompass: disease modifying treatments; physical, emotional and educational support; symptom relief; well-timed discussions and implementation of end-of-life care. In this perspective, we focus on the most recent insights in these, including but not limited to pulmonary rehabilitation, supplementary oxygen, dealing with cough, dyspnea, fatigue and advance care planning. We discuss some of the barriers to implementation of comprehensive supportive care and offer possible solutions. We conclude by identifying lines of inquiry and research needed to improve the implementation and delivery of comprehensive supportive care to patients with F-ILD and their caregivers.
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Wijsenbeek et al. (2019) studied this question.
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