Table 2 Representation of themes from interviews and coverage by EORTC QLQ-C30 and EORTC EN-24

Phyiscal health

1. Gastrointestinal symptoms

1. Gastrointestinal symptoms

EORTC QLQ-C30

EORTC QLQ-EN24

1.1 Bloated feeling of the abdomen

X

1.2 Pressure in the abdomen

1.2 Heaviness in the abdomen^a

1.3 Feeling a mass in the abdomen

1.3 Swelling of the abdomen^a

1.4 Bowel movement problems

1.4 Problems with defecation

1.4.1 Constipation

1.4.1 Constipation

X

1.4.2 Diarrhoea

1.4.2 Diarrhoea

X

1.4.3 Tingling sensation in hips when I need to open my bowels

1.5 Lack of appetite

1.5 Lack of appetite^b

X

1.6 Gastro-esofageal reflux

1.7 Nausea/ vomiting

1.7 Nausea/ vomiting^b

X

1.8 Abdominal pain

1.8 Abdominal pain

1.9 Rectal bleeding^a

2. Sexual problems

2. Sexual problems

2.1 Decreased ability to reach an orgasm

2.2 Decreased interest in sex

X

2.3 Less sexual enjoyment

X

2.4 Vaginal dryness

2.4 Vaginal dryness^a

X

2.5 Vagina feels short or tight^a

X

2.6 Pain during sex

X

3. Gynaecological symptoms

3. Gynaecological symptoms

3.1 Heavy periods

3.1 Heavy periods^a

3.2 Abnormal vaginal bleeding

3.2 Abnormal vaginal bleeding^a

3.3 Vaginal discharge^a

4. Urinary problems

4. Urinary problems

4.1 Needed a catheter/ catheterising

4.2 Urinary incontinence

4.2 Urgency to go to the toilet to urinate

X

4.3 Urinating frequently

X

4.4 Pain when passing urine

X

5. Hormonal problems

5. Hormonal problems

5.1 Menopausal symptoms (“hot flushes, night sweats, insomnia, anxiety, sexual problems, vaginal dryness”)

5.2 Experiencing menopausal symptoms because I cannot take hormone-replacement therapy

5.2 No treatments possible for menopausal symptoms

5.3 Going into menopauze early

5.4 Pain in muscles and joints

X

6. Neurological symptoms

6. Neurological symptoms

6.1 Numbness

6.1 Numbness^b

X

6.2 Tingling

6.2 Tingling in feet

X

7. Functional impairment

7. Functional impairment

7.1 Impairments in ADL

7.1 Impairment in ADL (Needed help with ADL)

X

7.2 Impairments in mobility

7.2 Impairment in mobility

7.3 Physical impairment

7.3 Physical impairment^b

X

8. Lack of energy

8. Lack of energy

8.1 Feeling tired

8.1 Feeling tired^b

X

8.2 Need to rest

X

8.3 Feeling weak and lacking energy

8.3 Feeling weak and lacking energy^b

X

9. Trouble sleeping

9. Trouble sleeping^b

X

9.1 Trouble sleeping because of having to go to bathroom frequently

9.2 Trouble sleeping because of worries

10. Pain

10. Pain

X

10.1 Circumstances of pain

10.1.1 Postoperative pain

10.1.2 Pain when lifting heavy things

10.2 Different locations of pain

10.2.1 Pain of the lump

10.2.2 Pain in area of surgery

10.2.3 Back pain

X

10.3 Need to take pain medication

10.3 Need to take pain medication^b

11. Radiotherapy related problems

11. Radiotherapy related problems^b

11.1 Burning and painful skin

11.1 Burning and painful skin^b

11.2 Blisters of skin

11.3 Ulcer near the anus

12. Chemotherapy related issues

12. Chemotherapy related issues^b

12.1 Feeling ill

12.1 Feeling ill^b

12.2 Lower resistance to infection

12.2 Lower resistance to infection^b

12.3 Hair problems

12.3 Hair problems^b

X

12.4 Nail problems

12.5 Eye problems

12.6 Mouth problems

12.6 Mouth problems^b

12.7 Nose problems

12.8 Skin problems

12.8 Skin problems^b

13. Weight problems

13.Weight problems

13.1 Weight gain

13.1 Weight gain

13.2 Weight loss

13.2 Weight loss

14. Respiratory problems

14. Respiratory problems

14.1 Shortness of breath

14.1 Shortness of breath^b

X

14.2 Trouble breathing on exertion

15. Symptoms related to metastasis or local treatment for metastasis

15.1 Eating problems

15.2 Mouth problems

15.3 Problems with speaking

16. Local effects of tumour

16.1 Fistulation^a

16.2 Mass protruding from vagina^a

16.3 Deep venous thrombosis

16.4 Leg problems

X

17. Surgery effects

17. Surgery effects

17.1 Herniation

17.2 Improvement of quality of life after treatment

17.2 Improvement of quality of life after treatment

17.3 Nephrostomy

17.4 Swelling of legs

X

18. Infertility

Mental health

1.Fears/Worries

1. Anxiety/Worries

X

1.1 Fear of recurrence

1.1.1 Scanxiety

1.1.1 Scanxiety^b

1.1.2 Fear of recurrence

1.1.2 Fear of recurrence^b

1.1.3 Anxiety due to delay of diagnosis and treatment

1.1.4 Anxiety after initial misdiagnosis

1.2 Fear of death

1.2 Fear of death^b

1.3 Fear for treatment

1.4 Fears about having sex

1.5 Worried about your condition’s impact on loved ones

1.5 Worried about patient’s condition’s impact on loved ones^b

2. Dislike of changed appearance/Changed body image

2. Changed body image

2.1 Hair loss

X

2.2 Scars^b

2.3 Physical deformity

2.3 Physical deformity^b

2.4 Felt less attractive

2.4 Felt less attractive

X

2.5 Felt less feminine

X

2.6 Less self-esteem

2.7 Felt body is changing

3. Felt constantly reminded about your condition

4. Living with uncertainty

4. Living with uncertainty^b

4.1 Uncertainty regarding treatment

4.2 Uncertainty regarding the future

4.2 Uncertainty regarding the future^b

5. Felt distressed by the lack of knowledge about sarcoma

5. Felt distressed by the lack of knowledge about sarcoma^b

6. Desire to have contact with fellow patients

6. Desire to have contact with fellow patients^b

7. Change in emotions

7. Change in emotions

7.1 Feeling sad

7.1 Feeling sad^b

7.2 Being more emotional

8. Felt stigmatized

8. Felt stigmatized^b

9. Shock of diagnosis

9. Shock of diagnosis

9.1 Sarcoma diagnosis comes unexpectedly after initial misdiagnosis

10. Dealing with (risk of) infertility

11. Lack of psychosexual support

11.1 Sexual problems are rarely discussed spontaneously

Social health

1. Loss of independence

1. Loss of independence^b

X

2. Relationship with others

2. Relationship with others

X

2.1 Losing contact with friends or family

2.1 Losing contact with friends or family^b

2.2 Isolation

2.2 Isolation ^b

2.3 Lack of understanding from others

2.3 Lack of understanding from others^b

3. Limitation in activities

3. Limitation in activities

3.1 Limitation in social activities

3.1 Limitation in social activities ^b

X

3.2 Limitation in leisure activities or hobbies

3.2 Limitation in leisure activities or hobbies^b

X

3.3 Difficulty doing activities with (grand) children

4. Financial difficulties because of medical costs and medical aid

4. Financial difficulties because of loss of income & medical costs^b

X

5. Changes in work or study capacity

5. Changes in work

5.1 Had to change function at work

5.1 Change in career

5.2 Limitations in work/study

5.2 Limitations in work

X

5.3 Not being able to work

5.3 Not being able to work^b

6. Having a changed life

6. Having a changed life^b