Interstitial lung disease (ILD) comprises a large and heterogeneous group of disorders that often lead to progressive fibrosis and premature death. Oxygen supplementation is typically used in patients with advanced lung disease with resting hypoxemia; however, there is a paucity of evidence guiding the use of supplemental oxygen in ILD, and significant heterogeneity in clinical practice. It remains unclear whether supplemental oxygen improves clinically meaningful outcomes, and the role of ambulatory oxygen supplementation in isolated exertional hypoxemia is particularly controversial. In some regions, the lack of robust data creates barriers to funding support and access to supplemental oxygen for patients with ILD. Further research into the role of oxygen supplementation is needed to optimize the comprehensive care of this patient population.

Patient centered care (PCC) and interprofessional collaboration (IPC) remain important goals for all healthcare systems. While these tenets are a cornerstone of training for nursing and allied health professionals (AHPs), their role in internal medicine resident (IMR) training is unstructured and limited. We performed a narrative review to answer two questions, firstly ‘what is known about the attitudes and behaviors of internal medicine (IM) physicians and trainees with respect to PCC and IPC and how does this compare to AHPs?’ and secondly, ‘what evidence based interventions have been trialed to promote PCC and IPC in medical training?’ We searched databases including Cochrane, Medline, Embase, CINAHL and MedPortal. We reviewed 102 publications and found that medical residents tend to value PCC less than non-physician trainees. Hierarchical professional attitudes and a poor understanding of AHP roles are barriers to IPC, whereas diminished time for direct patient care, neglect of the patient’s context and social determinants of health, and lack of self-reflection are barriers to PCC. Published educational interventions for IMRs and AHPs have included classroom sessions, structured ward- and clinic-based interprofessional (IP) work, post-discharge care, home visits, and reflective practice. Interventions were evaluated using questionnaires/surveys, focus groups, tests, primary outcome assessments and ethnographic analysis. The most promising interventions are those that allow learners time for multidisciplinary observation, holistic patient assessments, engagement in care transitions and reflective practice. Based on the review findings we have made recommendations for integration of IPC and PCC training into IMR curricula. Future educational interventions should allow IMR observerships in a multidisciplinary team, introduce residents to the patient’s environment through home visits, incorporate patient/family perspectives in care, and include narrative reflections as part of professional development. Based on our findings and recommendations, these experiences can provide IMRs with much-needed exposure to collaborative, patient-centric care early in postgraduate training.

Patient-reported outcome measures (PROMs), tools to assess patient self-report of health status, are now increasingly used in research, care and policymaking. While there are two well-developed disease-specific PROMs for interstitial lung diseases (ILD) and idiopathic pulmonary fibrosis (IPF), many unmet and urgent needs remain. In December 2019, 64 international ILD experts convened in Erice, Italy to deliberate on many topics, including PROMs in ILD. This review summarises the history of PROMs in ILD, shortcomings of the existing tools, challenges of development, validation and implementation of their use in clinical trials, and the discussion held during the meeting. Development of disease-specific PROMs for ILD including IPF with robust methodology and validation in concordance with guidance from regulatory authorities have increased user confidence in PROMs. Minimal clinically important difference for bidirectional changes may need to be developed. Cross-cultural validation and linguistic adaptations are necessary in addition to robust psychometric properties for effective PROM use in multinational clinical trials. PROM burden of use should be reduced through appropriate use of digital technologies and computerised adaptive testing. Active patient engagement in all stages from development, testing, choosing and implementation of PROMs can help improve probability of success and further growth.

Rationale: Even though idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012, we implemented a multidisciplinary collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early integrated palliative approach, focusing on early symptom management and advance care planning. Objectives: To evaluate the differences in resource use and associated costs of end-of-life care between patients with IPF who received early integrated palliative care and patients with IPF who received conventional treatment. Methods: Using administrative health data, we identified all patients in the Province of Alberta, Canada, who presented to a hospital with an IPF diagnosis between January 1, 2012, and December 31, 2018, and died within this time frame. We compared three groups of patients: those who received MDC care (our clinic patients), specialist care (SC; respirologist), or non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were healthcare resource use and costs in the year before death. Results: Of 2,768 patients across the three study groups, in the last year of life, MDC patients were more than three times as likely as SC patients to have received antifibrotic therapies (odds ratio [OR], 3.0; 95% confidence interval [CI], 1.8–5.2), almost twice as likely to have received pulmonary rehabilitation (OR, 1.9; 95% CI, 1.1–3.4), and 36% more likely to have received opiates (OR, 1.4; 95% CI, 0.8–2.3). The median total healthcare costs in the last 3 months of life were approximately C$7,700 lower for MDC patients than for those receiving SC, driven primarily by fewer hospitalizations and emergency department visits. MDC patients were also less likely to die in the hospital (44.9% MDC vs. 64.9% SC vs. 66.8% NSC; P < 0.001) and had the highest rates of no hospitalization in the last year of life. Conclusions: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver palliative care for patients with IPF. MDC teams within such models can address the high burden of unmet needs for symptom management, advance care planning, and community support in this complex population.

Introduction: Advance care planning is recommended in chronic respiratory diseases, including Idiopathic Pulmonary Fibrosis. In practice, uptake remains low due to patient, physician and system-related factors, including lack of time, training and guidance on timing, components and content of conversations. Our aim was to explore perspectives, experiences and needs to inform a framework. Methods: We conducted a qualitative study in western Canada, using semi-structured interviews and inductive analysis. Patient, caregiver and health care professional participants described advance care planning experiences with Idiopathic Pulmonary Fibrosis. Results: Twenty participants were interviewed individually: 5 patients, 5 caregivers, 5 home care and 5 acute care health care professionals. Two categories, perceptions and recommendations, were identified with themes and subthemes. Participant perceptions were insufficient information and conversations occur late. Recommendations were: have earlier conversations; have open conversations; provide detailed information; and plan for end-of-life. Patients and caregivers wanted honesty, openness and clarity. Professionals related delayed timing to poor end-of-life care and distressing deaths. Home care professionals described comfort with and an engaged approach to advance care planning. Acute care professionals perceived lack of clarity of roles and described personal, patient and caregiver distress. Interpretation: Analysis of diverse experiences provided further understanding of advance care planning in Idiopathic Pulmonary Fibrosis. Advance care planning is desired by patients and caregivers early in their illness experience. Health care professionals described a need to clarify role, scope and responsibility. Practical guidance and training must be available to care providers to improve competency and confidence in these conversations.