Table 1.

Delphi Panel Characteristics

	Round 1 (Online Survey)
PatientsWith LAM
Response rate, No.	60
Female sex, No. (%)	60 (100)
LAM subtype, No. (%)
Sporadic LAM	55 (91.7)
TSC-associated LAM	5 (8.3)
Responded “I don’t know”	1 (1.7)
Age, mean ± SD, y	52.2 ± 11.4
Time since diagnosis, mean ± SD, y	8.1 ± 7.3
Home supplemental oxygen available, No. (%)	20 (33.3)
Uses supplemental oxygen at rest, No. (%)	4 (6)
Uses supplemental oxygen during exertion, No. (%)	20 (33.3)
Uses supplemental oxygen during sleep, No. (%)	19 (31.7)
Receives care from a pulmonologist at a designated LAM Center of Excellence, No. (%)	33 (55)
Has participated in a supervised pulmonary rehabilitation program, No. (%)	17 (28.3)
Currently participates in regular exercise or physical activity program, No. (%)	37 (61.7)

	Round 1 (Online Survey)	Round 2 (In-person Survey)
LAMExperts
Response/participation rate, No. of total (%)	16 of 16 (100)	14 of 16 (87.5)
Years working with patients with LAM and other chronic respiratory diseases, mean ± SD	13.5 ± 7.1	12.2 ± 6.5
Female sex, No. of total (%)	7 of 16 (44)	7 of 14 (50)
Geographic location, No. (%)
Northeast United States	1 (6)	1 (7)
Southeast United States	2 (13)	2 (14)
Mid-Atlantic United States	2 (13)	2 (14)
Central United States	4 (25)	4 (56)
Northwest United States	5 (31)	3 (21)
Europe	1 (6)	1 (7)
Australia	1 (6)	1 (7)
Occupation, No. (%)
Physician	12 (75)	10 (71)
Physical therapist	3 (19)	3 (21)
Nurse	1 (6)	1 (7)
Actively conducts research in LAM, No. of total (%)	14 of 16 (87.5)	12 of 14 (85.7)
Physician director of a designated LAM Center of Excellence, No. (%)	6 (37.5)	6 (42.9)

LAM = lymphangioleiomyomatosis; TSC = tuberous sclerosis complex.