Fibrotic interstitial lung disease - palliative care needs: a World-Café qualitative study

Abstract

ObjectivesThe importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland.MethodsImplementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy.ResultsPalliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services.ConclusionPatients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF)

“…Practical information needs include information on medication use and potential side effects, (30) supplemental oxygen use, nutrition, exercise (61), management of cough and breathlessness (5), insurance cover, travel advice particularly for those on oxygen, trusted online information resources (12) legal and practical advice for disease progression and end-of-life and palliative care planning for patients (16, 54) with F-ILD (28). Patients living alone expressed the most direct and urgent need for information about future care planning (5) There is an emerging need for information on research related the outcomes of clinical trials for IPF.…”

“…It is understood that access to information and education from a diverse range of sources enhances patients and carers coping strategies. (28, 49) Education and reliable information are the bedrock of patient care and help to empower patients to play an active role in their care. (49)…”

“…Caregivers often felt inadequately prepared for the caregiving role and expressed a need for information and education on strategies to help their family member manage IPF and for some they require information on palliative care and advanced care planning (ACP). (28) (27)…”

“…The European Patient IPF Charter and the Irish Thoracic Society Position Statement on the management of IPF have identified an urgent need to involve palliative care in IPF. (16, 28) The National Institute of Health and Care Excellence (NICE) guidance is that patients with IPF should have access to palliative and supportive care services to manage symptoms. (55, 76) Startingly, despite these recommendations, patients with IPF do not receive optimal palliative care over the course of their disease resulting in high symptom burden and decreased quality of life for patients with ILD.…”

“…(60, 79) There is increasing evidence that patients with IPF do not always have access to palliative care input and when it is introduced the timeline is rarely optimal. (17, 28)There continues to be poor referral and access to palliative care specialists with some healthcare professionals reporting a lack of training in palliative care, (53) insufficient communication training in facilitating these conversations, variations in the disease trajectory (54) and patients preferences to have these conversations. (6, 47, 80) In one study HCPs reported that palliative care was not initiated until the later stages of PF/IPF with a fifth reporting that palliative care was only initiated at end of life.…”