Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis

Abstract

Palliative care services are underused in ILD and a supportive care decision aid can prompt consideration of palliative and supportive care needs.

A narrative literature review of palliative care regarding patients with idiopathic pulmonary fibrosis

“…Characteristics of the existing studies are summarized in Table . Countries where the studies were conducted were the UK, (Bajwah et al., , ; Duck et al., ; Sampson, Gill, Harrison, Nelson, & Byrne, ; Sharp et al., ), the USA (Liang et al., ; Lindell, Kavalieratos, Gibson, Tycon, & Rosenzweig, ; Lindell et al., , ; Rush, Berger, & Celi, ; Swetz, Carey, & Bundrick, ), Canada (Kalluri, Claveria, Haggag, & Richman‐Eisenstat, ; Kalluri et al., , ; Periyakoil, Skultety, & Sheikh, ), Japan (Arita et al., ), Finland (Rajala et al., ), Denmark (Overgaard et al., ) and Sweden (Ahmadi et al., ). The combined 19 studies comprised 1708 patients and 74 care partners.…”

“…The age range was between 52 and 78 years. The environments where patients received palliative care were home care (Arita et al., ; Bajwah et al., ; Duck et al., ; Kalluri et al., ; Lindell et al., , ; Overgaard et al., ; Periyakoil et al., ; Rajala et al., ; Sampson et al., ; Sharp et al., ; Swetz et al., ), inpatient ward (Arita et al., ; Rush et al., ), intensive care unit (Rajala et al., ), hospice care (Liang et al., ; Lindell et al., ) and outpatient respiratory centres (Ahmadi et al., ; Bajwah et al., ).…”

“…Retrospective studies were nine (Ahmadi et al., ; Arita et al., ; Kalluri et al., , ; Liang et al., ; Lindell et al., Rajala et al., ; Rush et al., ; Sharp et al., ). Ahmadi et al.…”

“…Retrospective studies were nine (Ahmadi et al, 2016;Arita et al, 2010;Kalluri et al, 2016Liang et al, 2017;Lindell et al, 2015Rajala et al, 2016Rush et al, 2017;Sharp et al, 2017). Ahmadi et al (2016) reported interstitial lung disease (ILD) was similar to IPF and end-of-life discussions with the patients were less common than for those with lung cancer (LC) (41% vs 59%).…”

Palliative care for patients with pulmonary fibrosis: symptom relief is essential

“…Sensitive advanced care planning, and timely patient-centred end of life care with much-needed counselling with patients and their caregivers, as well as appropriate pharmacotherapy to alleviate emotional and physical suffering, must be an integrated part of routine care of patients with PF-ILD. [20] Beyond idiopathic pulmonary fibrosis diagnosis: multidisciplinary care with an early integrated palliative approach is associated with a decrease in acute care utilization and hospital deaths LINDELL et al [9] Randomised clinical trial of an early palliative care intervention (SUPPORT) for patients with idiopathic pulmonary fibrosis (IPF) and their caregivers: protocol and key design considerations RUSH et al [21] Access to palliative care for patients undergoing mechanical ventilation with idiopathic pulmonary fibrosis in the United States SHARP et al [22] Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis https://doi.org/10.1183/13993003.02086-2018 Table 1 lists some of the current palliative care studies that are underway. While we are not aware of all clinical studies that are ongoing and/or have been completed, it is hoped that there are and/or will be more clinical studies addressing palliative care in this cohort of patients and provide evidence to enhance further understanding and management of PF-ILD and improve outcomes that are meaningful to these patients.…”