Results of a Qualitative Study to Develop a Patient Reported Outcome Measure for Patients with 4 Subtypes of Soft Tissue Sarcoma

Table 4

Patient descriptions of STS disease symptoms.

Symptom	Descriptions from patient interviews
Abdominal pain	It, but it was like dull ache that would then become a very, very strong ache, like the worst, um, oh, it was almost like I felt like somebody had punched me in the abdomen, would be the best way to describe it. [, female, leiomyosarcoma, abdomen]
Pressure in abdomen	Pressure is just a feeling of your insides pushing outwards, whereas sometimes it then gets worse and it actually hurts. [, female, undifferentiated sarcoma, uterus]
Feel full after eating only a small amount of food	I felt like the food wouldn’t go in, I did not feel full—I felt like I needed to eat more, it just couldn’t get in there. [, female, synovial sarcoma, mediastinum, abdomen and lung]
Bloating	I only ate a third of what I should eat, and then it feels like I should have, like, I’ve eaten like a full-on. [, female, synovial sarcoma, mediastinum, abdomen and lung]
Gastrointestinal pain	When you mention stomachache, can you describe that a little bit more, like where exactly was it located and what did it feel like? Um, it felt low down in my abdominal area, um, you know, I felt nauseous and, um, I guess I sometimes would kind of cramp up a little bit. [, female, leiomyosarcoma, abdomen]
Muscle pain	It’s not sharp pain, it’s just like if you overworked a muscle, that kind of pain. [, female, leiomyosarcoma, lower back]
(Females only) heavy menstrual flow	It started out as spotting all the time, um, and then it just got heavier until, um, I had to wear a pad all the time, um, when I was bleeding a lot, because the tumor was emerging. [, female, leiomyosarcoma, vagina]
Bone pain occurs	[Bone pain occurs] frequently for how often I experience it, and I’m going to put moderate for the last 24 hours, because I was feeling it in—my hands were hurting, my shoulders are hurting. [, female, leiomyosarcoma, lower back]
(Females only) painful menstruation	Is painful menstruation related to your tumor or is it a treatment-related side effect? That was for tumor. How important is that the painful menstruation improve? That was important, but it’s not life-threatening. [, female, undifferentiated sarcoma, uterus]
Shortness of breath	Then one morning, this happened really quickly, I had what I thought was an asthma attack, because I was having such a hard time breathing, it was just incredible breathing. [, female, synovial sarcoma mediastinum, abdomen and lung]
Chest pain	When the tumor was at its largest it was 21 centimeters, very large and I felt chest pain and pressure. [, female, leiomyosarcoma, abdomen]
Cough	it comes out of nowhere, um, it’s like everything dries up all of a sudden—and it’s occasional that it happens. [, female, leiomyosarcoma, lower back]