Table 1 Responses to questionnaire from sites (n = 27)
Number of enrolled patients | 26 (19, 45) |
|---|---|
Approximate number of patients with IPF actively followed | |
< 25 | 0 |
25–50 | 1 (3.7) |
51–100 | 7 (25.9) |
> 100 | 19 (70.4) |
Approximate number of new patient appointments offered each week | |
0–5 | 3 (11.1) |
6–10 | 9 (33.3) |
11–15 | 7 (25.9) |
16–20 | 4 (14.8) |
> 20 | 4 (14.8) |
Number of ILD physician specialists at center (full- or part-time) | 6 (3, 8) |
Dedicated ILD nurse leader to coordinate clinical activities | 21 (77.8) |
Dedicated ILD nurse practitioner or physician assistant that independently sees patients with ILD | 11 (40.7) |
Patient calls handled by an ILD registered nurse or nurse practitioner | 17 (63.0) |
Most patients managed | |
By the enrolling site | 18 (66.7) |
Co-management with community pulmonologist | 9 (33.3) |
By community pulmonologist primarily | 0 |
Patients routinely participate in some form of remote monitoring | 6 (22.2) |
Telehealth | 3 (11.1) |
Remote pulmonary function test monitoring | 0 |
Electronic medical record system-based program at center | 1 (3.7) |
Othera | 2 (7.4) |
Patients routinely self-monitor their lung function (spirogram) at home | 2 (7.4) |
Time within which a patient with acute concern/deterioration can typically be seen | |
Same/next day if necessary | 20 (74.1) |
3 days | 1 (3.7) |
1 week | 3 (11.1) |
1–2 weeks | 1 (3.7) |
Otherb | 2 (7.4) |
Patient management | |
Each individual physician follows his/her own panel of patients | 20 (74.1) |
Team-based clinic (no assigned patients to a provider) | 2 (7.4) |
Hybrid model (e.g., individual patients assigned to specific physician but person on call handles all urgent calls) | 5 (18.5) |
Frequency of multidisciplinary conference to discuss patients | |
Weekly | 13 (48.1) |
Every other week (twice a month) | 5 (18.5) |
Monthly | 7 (25.9) |
Quarterly | 0 |
Never | 2 (7.4) |
Format of MDD | |
In person, all participants in same room | 20 (74.1) |
Remote, by conference call | 1 (3.7) |
Hybrid, some in room together and others call in | 4 (14.8) |
Access to chest radiologist (on site or at associated facility) | 26 (96.3) |
Access to lung pathologist (on site or at associated facility) | 27 (100) |
Pre-clinic meetings or care planning meetings | |
Regular scheduled meetings | 3 (11.1) |
As-needed meetings | 6 (22.2) |
No meetings | 18 (66.7) |
Routinely provide patients with graphs of their lung function while in clinic | 13 (48.1) |
Center has support group or refers patients to outside support group | 25 (92.6) |
Support group meets | |
Weekly | 1 (3.7) |
Every other week | 0 |
Monthly | 17 (63.0) |
Quarterly | 6 (22.2) |
Twice a year | 1 (3.7) |
Team member assigned to patient education | 10 (37.0) |
Routinely provides educational materials in clinic | 20 (74.1) |
Routinely refers patients to educational websites | 23 (85.2) |
Educational program/activity dedicated to patients and caregivers at least once a year | 17 (63.0) |
Local registry/database used for research or quality improvement | 18 (66.7) |
Started or completed an ILD-related quality improvement project in last 2 years | 11 (40.7) |
Outcomes self-assessment process in place | 2 (7.4) |
National Institutes of Health (NIH)-funded research in last 2 years (anyone at center or on team) | 18 (66.7) |
Center is a member of the Pulmonary Fibrosis Foundation Care Center Network | 24 (88.9) |
Institution has a lung transplant program | 18 (66.7) |
Written care protocols/clinical pathways for drug safety monitoring | 13 (50.0) |