Essential Components of an Interstitial Lung Disease Clinic

Abstract

Background Management of patients with interstitial lung disease (ILD) requires subspecialized, comprehensive, multidisciplinary care. The Pulmonary Fibrosis Foundation established the Care Center Network (CCN) in 2013 with identified criteria to become a designated CCN site. Despite these criteria, the essential components of an ILD clinic remain unknown. Research Questions How are ILD clinics within the CCN structured? What are the essential components of an ILD clinic according to ILD physician experts, patients, and caregivers? Study Design and Methods This study had 3 components. First, all 68 CCN sites were surveyed to determine the characteristics of their current ILD clinics. Second, an online, three-round modified Delphi survey was conducted between October and December 2019 with 48 ILD experts participating in total. Items for round one were generated using expert interviews. During rounds 1 and 2, experts rated the importance of each item on a 5-point Likert scale. The a priori threshold for consensus was greater than 75% of experts rating an item as important or very important. In round 3, experts graded items that met consensus and ranked items deemed essential for an ILD clinic. Third, ILD patient and caregiver focus groups were conducted and analyzed for content to determine their perspectives of an ideal ILD clinic. Results Forty items across four categories (members, infrastructure, resources and multidisciplinary conference) achieved consensus as essential to an ILD clinic. Patient and caregiver focus groups identified three major themes: comprehensive, patient-centered medical care; expanded access to care; and comprehensive support for living and coping with ILD. Interpretation The essential components of an ILD clinic are well-aligned between physician experts and patients. Future research can use these findings to evaluate the impact of these components on patient outcomes and inform best-practices for ILD clinics throughout the world.

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

“…Eight studies involved direct patient and/or caregiver input. Of these, three utilized focus groups: one involved interstitial lung disease (ILD) patients and caregivers [22 ▪▪ ], one involved caregivers only of IPF patients [23 ▪▪ ] and one focused on caregivers of patients with cancer [24 ▪ ]. This study on caregivers of patients with cancer was included, as the diseases are both serious illnesses and have similar disease course trajectories.…”

“…The remaining seven articles sought input from healthcare professionals and researchers who care for patients with pulmonary fibrosis. This included three reviews [30 ▪ –32 ▪ ], (with one being a systematic review) [30 ▪ ], two Delphi studies [22 ▪▪ ,33 ▪ ], (one being a dual study with the previously described focus group) [22 ▪▪ ], one retrospective study [34 ▪ ] and one commentary on COVID-19 impact on caregivers [35 ▪ ]. The purpose of this manuscript is to describe recent literature on unmet caregivers needs from the patient and caregiver perspective to bring attention to resources that are necessary to help caregivers care for themselves as well as the patient with pulmonary fibrosis.…”

“…In a focus group with ILD patients and caregivers to determine perspective of an ideal ILD clinic [22 ▪▪ ], the authors identified three themes. The first was the need for a comprehensive patient centred medical centre.…”

Organization of pulmonary hypertension care in non‐expert care settings: Lessons learned from a multi‐site study

“…While our study centered on one disease requiring highly specialized care, our qualitative methods approach to understanding the scope of available structures and processes outside expert centers may inform other clinical problems for which guidance on care organization is focused on expert centers, such as interstitial lung disease, 53 epilepsy, 54 or amyotrophic lateral sclerosis 55 . Furthermore, many of our findings such as the importance of pharmacist integration into clinical teams and the need to bolster care coordination efforts are likely directly applicable to other complex diseases requiring specialized care.…”

Diagnosis and Pharmacologic Management of Fibrotic Interstitial Lung Disease

“…A multidisciplinary approach has been demonstrated to improve interobserver agreement and confidence level when diagnosing ILDs, and may even lead to a change in the initial diagnosis [ 53 , 54 , 55 , 56 , 57 ]. A recent Delphi survey and patient focus-group analysis identified the multidisciplinary conference as an essential component of an ILD clinic [ 58 ]. Multidisciplinary discussion (MDD) can be particularly important when HRCT findings are nonspecific, or there is discrepancy between the identified radiographic and histopathologic patterns [ 59 ].…”