Table 3 Demographic and disease characteristics at time of interview

Mean age (years), n (range)

44 (21–61)

Sex, n (%)

Men

5 (62.5)

Women

3 (37.5)

Ethnicity, n (%)

Hispanic/Latino

5 (62.5)

Non-Hispanic/Latino

3 (37.5)

Race, n (%)

White

4 (50)

Multi-racial

1 (12.5)

Asian, Native Hawaiian, or Pacific Islander

1 (12.5)

Mexican American

1 (12.5)

Hispanic

1 (12.5)

Highest level of education, n (%)

Completed high school

3 (37.5)

College or university

1 (12.5)

Undergraduate or bachelor’s degree

2 (25.0)

Graduate degree

2 (25.0)

Time since SS diagnosis, n (%)

 < 2 years

2 (25.0)

2–5 years

2 (25.0)

 > 5 years

4 (50.0)

Time since mSS diagnosis, n (%)

 < 2 years

4 (50.0)

2–5 years

2 (25.0)

 > 5 years

2 (25.0)

Original site of metastasis, n (%)*

Pulmonary

7 (87.5)

Bone

2 (25.0)

Liver

1 (12.5)

Mediastinal mass

1 (12.5)

Abdomen

1 (12.5)

Pelvis

1 (12.5)

Pancreas

1 (12.5)

Subsequent metastatic relapses, n (%)*

Pulmonary

1 (12.5)

Right axillary mass

1 (12.5)

Anterior mediastinal

1 (12.5)

N/A

5 (62.5)

Grade of cancer, n (%)

High

5 (62.5)

Low

1 (12.5)

Unknown

2 (25.0)

Current ECOG performance status, n (%)

1

8 (100)

Treatment received for local SS, n (%)*

Surgery^†

5 (62.5)

Chemotherapy^‡

4 (50.0)

Radiotherapy

3 (37.5)

Other (immunotherapy)

1 (12.5)

Treatment received for mSS, n (%)

Chemotherapy^‡

5 (62.5)

Surgery^†

1 (12.5)

Other (clinical trial n = 3, immunotherapy n = 1)

4 (50.0)

Treatment received for recurrent mSS, n (%)*

Surgery^†

2 (25.0)

Chemotherapy^‡

4 (50.0)

Other (clinical trial n = 5, immunotherapy n = 1, iron n = 1)

6 (75.0)

Line of treatment for mSS, n (%)

2L + 

7 (87.5)