TABLE 2.
Frequency of Mentions, Median Disturbance Rating, and Saturation of Symptoms and Impacts for Patients With Desmoid Tumors From Concept Elicitation Interviews by Interview Group (n = 31)
| Overall Symptoms or Impactsa | Frequency of Mentions |
Median Disturbance Rating |
Interview Group Where First Mentioned |
||
|---|---|---|---|---|---|
| Group 1 (Interviews 1–10) |
Group 2 (Interviews 11–20) |
Group 3 (Interviews 21–31) |
|||
| Symptoms | |||||
| Disfigurement/altered appearance | 25 | 5.00 | X | ||
| Nerve pain (localized/radiating) | 22 | 6.00 | X | ||
| Decreased range of motion | 21 | 4.00 | X | ||
| Muscle pain (localized/radiating) | 20 | 6.75 | X | ||
| Fatigue | 20 | 5.00 | X | ||
| Nausea | 18 | 4.50 | X | ||
| Hair thinning | 18 | 5.75 | X | ||
| Scarring | 16 | 2.25 | X | ||
| Lack of energy | 15 | 5.50 | X | ||
| Soreness/muscle aches | 14 | 3.50 | X | ||
| Discomfort | 14 | 6.00 | X | ||
| Hot flashes | 13 | 4.50 | X | ||
| Weight loss | 12 | 4.00 | X | ||
| Weakness | 12 | 6.00 | X | ||
| Gastrointestinal issues/dysfunction | 12 | 5.00 | X | ||
| Diarrhea | 11 | 6.50 | X | ||
| Chemo brain | 11 | 5.75 | X | ||
| Nerve damage/pain | 11 | 2.50 | X | ||
| Stiffness | 10 | 3.00 | X | ||
| Dizziness | 10 | 5.25 | X | ||
| Easily full with small amount of food | 9 | 6.50 | X | ||
| Vomiting | 9 | 7.00 | X | ||
| Hand-foot syndrome | 9 | 8.00 | X | ||
| Mouth sores | 8 | 8.50 | X | ||
| Skin sensitivity | 7 | 6.50 | X | ||
| Swelling | 6 | 5.00 | X | ||
| Bloody bowel movements | 5 | 5.50 | X | ||
| Ovarian cysts | 5 | 5.00 | X | ||
| Darkening of skin | 5 | 2.50 | X | ||
| Fever | 4 | 3.00 | X | ||
| Difficulty eating | 3 | 6.00 | X | ||
| Endometriosis | 2 | 5.50 | X | ||
| Renal/kidney failure | 1 | 10.00 | X | ||
| Impacts | |||||
| Fear | 26 | 6.50 | X | ||
| Difficulty sleeping | 24 | 7.50 | X | ||
| Concern about lack of knowledge among health professionals | 23 | 8.00 | X | ||
| Anxiety | 22 | 6.75 | X | ||
| Ongoing medical uncertainty | 22 | 6.50 | X | ||
| Lack of information from health care providers | 20 | 6.50 | X | ||
| Concern for other family members | 20 | 6.25 | X | ||
| Inability to do daily activities | 20 | 6.75 | X | ||
| Depression | 20 | 8.00 | X | ||
| Frustration | 18 | 7.00 | X | ||
| Isolation | 17 | 7.00 | X | ||
| Financial difficulties | 16 | 8.00 | X | ||
| Anger | 15 | 6.50 | X | ||
| Hopelessness | 14 | 8.50 | X | ||
| Stress/difficulty over making treatment decisions | 14 | 6.50 | X | ||
| Inability to do work | 14 | 6.75 | X | ||
| Altered body image/function | 12 | 4.75 | X | ||
| Treatment dissatisfaction | 12 | 7.75 | X | ||
| Low self-esteem | 10 | 6.50 | X | ||
| Worry over becoming pregnant | 7 | 6.00 | X | ||
| No. of new symptoms in each group | 32 | 0 | 1 | ||
| % of total new symptoms (total = 33) | 97 | 0 | 3 | ||
| No. of new impacts in each group | 20 | 0 | 0 | ||
| % of total new impacts (total = 20) | 100 | 0 | 0 | ||
a
Descending frequency of mentions.