Early referral to palliative care in IPF – pitfalls and opportunities in clinical trials

Abstract

Letter to the editorTo the Editors, BMC Respiratory Research Dear Drs. Bals and Tantisira, We read with great interest the study by Janssen et al. to assess feasibility of measuring the effect of a palliative care (PC) clinic referral on quality of life, anxiety and depression in Idiopathic Pulmonary Fibrosis (IPF) [1]. We would like to congratulate the authors for undertaking research in the much-needed area of IPF palliative care.The study was a pilot study and as such not powered to detect impact of intervention. The authors succeeded in demonstrating that this type of study is feasible but the intervention (referral to PC clinic) did not show any impact on health related quality of life (HrQoL) as measured by St. George respiratory Questionnaire (SGRQ) total score, and anxiety and depression (HADS) at 6 months. At 3 months follow up, SGRQ symptoms score and depression showed transient worsening in the intervention group.In any clinical trial, the goals are to recruit the target population without significant bias, apply standardized interventions and use the best measurement tool to detect the effect of interventions. The authors highlight to several important poinst to consider in understanding the results. First, selection bias may have limited the enrolment into the study. Off 55 eligible patients, only 22 (40%) consented to participate. This is in sharp contrast to recent trials in IPF [2,3] where all eligible patients

A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

“…Survey findings of educational needs for caregivers of patients with IPF reveal ‘disease progression/what to expect’, as their top informational need and caregivers experience major challenges when caring for someone with IPF [37]. In addition, caregivers requested more information from support groups for disease education, advance care planning and financial advice, and a preference for working with a primary contact in the ILD clinic and assistance working with insurance companies to help navigate the disease course [17,22 ▪▪ ,23 ▪▪ ,25 ▪▪ ]. As pulmonary fibrosis progresses, patients require increasing doses of supplemental oxygen therapy when they develop hypoxemia defined as oxygen saturation of 89% or less measured by arterial blood gas or pulse oximetry.…”

“…Patients experience intense symptom burden as the fibrosis progresses affecting patients' both physical and emotional well being [16]. This difficult symptom burden extends beyond the patient, to caregivers, families and friends [17,18].…”