Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study
Bibliographic record
Abstract
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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.013 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.012 | 0.008 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".