Abstract Rationale Idiopathic Pulmonary Fibrosis (IPF) is a progressive, life-limiting disease requiring multidisciplinary, coordinated management. While guidelines recommend care by specialized centers, more information is needed about how patients define a high-quality care experience, and how perceived communication, decision-making, and support differ between general pulmonologists and IPF specialists. This study explored patient perspectives on interactions with healthcare teams and identified factors that contribute to trust, satisfaction, and confidence in care. Methods A mixed-methods study was conducted with adults diagnosed with IPF using semi-structured qualitative interviews and quantitative surveys focused on non-interventional, experiential insights. Participants shared perspectives on provider communication, shared decision-making, access to care, care coordination, engagement of care partners, and perceived provider expertise. Quantitative data were summarized using descriptive statistics, and qualitative transcripts were analyzed thematically. Data were anonymized and securely stored to protect participant confidentiality. Results Participants emphasized that high-quality IPF care extends beyond clinical expertise to include timely access, strong communication, and partnership between the healthcare team, patients, and care partners. While all participants felt their providers took their concerns seriously and explained treatment options clearly, additional components were identified as essential to a supportive care experience: - Timely two-way communication through portals, email, or phone, especially for symptom changes and medication support. Delayed responses led to frustration and anxiety. - Inclusion of care partners, defined broadly as trusted individuals, not necessarily family, during clinic visits to support information recall, advocacy, and shared understanding. - Accurate visit summaries and accessible post-visit notes were viewed as critical to reinforce complex discussions and enable proactive care. - Personalized roles in decision-making: while 88% of participants reported active involvement, not all wished to assume a leadership role; preferences ranged from shared responsibility to deferring to specialized expertise. - Resources that enhance confidence: educational materials from trusted sources, clinical trial coordinators, and peer support groups contributed to emotional resilience and disease understanding. When comparing provider types, only 12.5% strongly agreed that their general pulmonologist could answer all IPF-related questions, compared with 62.5% for IPF specialists, reflecting greater perceived disease-specific knowledge and confidence in specialized care. Conclusions Patients value care that is not only clinically competent but also responsive, accessible, and inclusive of care partners. IPF specialists are perceived as better equipped to address disease-specific needs, reinforcing the benefits of referral to specialty centers. Flexible shared decision-making, tailored to individual preferences, and timely communication are key to a truly patient-centered IPF care model. This abstract is funded by: This research was supported by Avalyn Pharma Inc.
Kervitsky et al. (Fri,) studied this question.