How we studied this

Between November 2021 and February 2022, we surveyed physicians, advanced practice providers, and nurses at PFF-CCN sites nationwide. The survey, developed by the CCN Rural Health Outreach Committee, included both multiple-choice and open-ended questions. To keep results balanced, we analyzed one response per CCN site. Every site participated, giving us a 100% response rate.

Key takeaways from ILD providers

Many providers perceived that rural patients often face delays and fewer nearby services than urban patients:

• 57% said rural patients often experience delays in diagnosis
• 47% said rural patients often experience delays in treatment
• Only 13% reported an ILD multidisciplinary team meeting in surrounding rural areas
• Many reported limited access to pulmonary rehabilitation and clinical trials
• Approximately 40% said palliative care and hospice were only “sometimes” available in rural areas

What we heard in providers’ own words

When providers described what makes care harder or easier, three main challenges emerged:

• Getting to care and services: Long travel distances, fewer specialists, and difficulty accessing testing and treatments such as oxygen and pulmonary rehab.
• Fewer resources close to home: More time spent coordinating care, limited broadband and telehealth support in some areas, and less ILD awareness in certain communities.
• Patient concerns: A smaller number of responses mentioned worries about frequent visits, driving in cities, or traveling long distances.

What providers said can help

Providers also described strategies they are using to improve access:

• Partnering with local clinicians to coordinate care and services closer to home.
• Using the full multidisciplinary ILD team to share expertise and education.
• Telehealth, which can reduce travel and improve communication, although broadband access and policies remain barriers in some areas.

What’s next

Our findings increase awareness of the challenges rural patients may face when accessing ILD care and highlight practical strategies providers are using today. However, this study only focused on the perspectives of ILD providers practicing at PFF-CCN sites. We still need to hear directly from rural patients, caregivers, and healthcare providers about their experiences. Future studies should include patients, rural clinicians, and larger provider samples to identify solutions that improve access to care for everyone living with ILD.

This research was conducted as part of the CCN Rural Health Outreach Committee and supported by the PFF.

About the Pulmonary Fibrosis Foundation
At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.

As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.