ArticleThe American journal of hospice & palliative care2022
Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.
Article in The American journal of hospice & palliative care, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 22 citations in OpenAlex.
- The roles and experiences of informal caregivers in non-malignant respiratory disease at the end of life: A thematic synthesis of qualitative studies.Palliative & supportive care · 2026Pooled it
- "Good health" and care needs in idiopathic pulmonary fibrosis/progressive pulmonary fibrosis: the COCOS-IPF patient-led European focus groups.ERJ open research · 2026Article
- What is the appropriate timing for advance care planning according to patients and their relatives? A scoping review.PloS one · 2026Article
- Patient education and self-management in interstitial lung disease: why and what, now how?ERJ open research · 2025Article
- Article
- Advance care planning in patients with respiratory failure.European respiratory review : an official journal of the European Respiratory Society · 2024Review
- Consideration points in the decision making in chronic respiratory diseases.Journal of rural medicine : JRM · 2024Article
- Supporting self-management for patients with Interstitial Lung Diseases: Utility and acceptability of digital devices.PLOS digital health · 2024Article
- A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).PloS one · 2024Article
- Palliative care and end of life management in patients with idiopathic pulmonary fibrosis.Multidisciplinary respiratory medicine · 2023Article
- Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study.Palliative medicine reports · 2023Article
- End-of-life care for idiopathic pulmonary fibrosis patients with acute exacerbation.Respiratory research · 2022Article
- When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers.Palliative medicine · 2022Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionAdvance 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.
methodsWe 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.
resultsTwenty 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.
interpretationAnalysis 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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