BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.AimTo explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.DesignA qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.ResultsThirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.ConclusionsThe approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

Background: Interstitial lung diseases (ILDs) comprise a heterogeneous group of fibrotic, progressive pulmonary diseases characterized by poor end-of-life care and hospital deaths. In 2012, we launched our Multidisciplinary Collaborative (MDC) ILD clinic to deliver integrated palliative approach throughout disease trajectory to improve care. We sought to explore the effects of palliative care and other factors on location of death (LOD) of patients with ILD. Methods: The MDC-ILD clinic implemented a palliative care bundle including advance care planning (ACP), opiates use, allied health home care engagement, and use of supplemental oxygen and early caregiver engagement in care. Data from patients with ILD who attended the clinic and died between 2012 and 2019 were used to generate scores representing the components and duration of palliative care (palliative care bundle score) and caregiver involvement (caregiver engagement score). We examined the impact of these scores on patients’ LOD. Results: A total of 92 MDC-ILD clinic patients were included, 57 (62%) had home or hospice deaths. Patients who died at home or hospice had higher palliative care bundle scores (10.0 ± 4.0 vs 7.8 ± 3.9, P = .01) and caregiver engagement scores (1.7 ± 0.6 vs 1.3 ± 0.7, P = .01) compared to those who died in hospital. Patients were 1.13 times more likely to die at home or hospice following a 1-point increase in palliative care bundle score (95% CI: 1.01-1.29, P = .04) and 2.38 times more likely following a 1-point increase in caregiver engagement score (95% CI: 1.17-5.15, P = .02). Conclusions: Home and hospice deaths are feasible in ILD. Early initiation of palliative care bundle components such as ACP discussions, symptom self-management, caregiver engagement, and close collaboration with allied health home care supports can promote adherence to patient preference for home or hospice deaths.

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.

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