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

From: ‘I thought I had fibroids, and now I don’t’: a mixed method study on health-related quality of life in uterine sarcoma patients

Patient HCP   
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 abdomena   
1.3 Feeling a mass in the abdomen 1.3 Swelling of the abdomena   
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 appetiteb X  
1.6 Gastro-esofageal reflux    
1.7 Nausea/ vomiting 1.7 Nausea/ vomitingb X  
1.8 Abdominal pain 1.8 Abdominal pain   
  1.9 Rectal bleedinga   
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 drynessa   X
  2.5 Vagina feels short or tighta   X
  2.6 Pain during sex   X
3. Gynaecological symptoms 3. Gynaecological symptoms   
3.1 Heavy periods 3.1 Heavy periodsa   
3.2 Abnormal vaginal bleeding 3.2 Abnormal vaginal bleedinga   
  3.3 Vaginal dischargea   
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 Numbnessb   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 impairmentb X  
8. Lack of energy 8. Lack of energy   
8.1 Feeling tired 8.1 Feeling tiredb X  
8.2 Need to rest   X  
8.3 Feeling weak and lacking energy 8.3 Feeling weak and lacking energyb X  
9. Trouble sleeping 9. Trouble sleepingb 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 medicationb   
11. Radiotherapy related problems 11. Radiotherapy related problemsb   
11.1 Burning and painful skin 11.1 Burning and painful skinb   
11.2 Blisters of skin    
11.3 Ulcer near the anus    
12. Chemotherapy related issues 12. Chemotherapy related issuesb   
12.1 Feeling ill 12.1 Feeling illb   
12.2 Lower resistance to infection 12.2 Lower resistance to infectionb   
12.3 Hair problems 12.3 Hair problemsb   X
12.4 Nail problems    
12.5 Eye problems    
12.6 Mouth problems 12.6 Mouth problemsb   
12.7 Nose problems    
12.8 Skin problems 12.8 Skin problemsb   
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 breathb 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 Fistulationa   
  16.2 Mass protruding from vaginaa   
  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 Scanxietyb   
1.1.2 Fear of recurrence 1.1.2 Fear of recurrenceb   
  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 deathb   
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 onesb   
2. Dislike of changed appearance/Changed body image 2. Changed body image   
2.1 Hair loss    X
  2.2 Scarsb   
2.3 Physical deformity 2.3 Physical deformityb   
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 uncertaintyb   
4.1 Uncertainty regarding treatment    
4.2 Uncertainty regarding the future 4.2 Uncertainty regarding the futureb   
5. Felt distressed by the lack of knowledge about sarcoma 5. Felt distressed by the lack of knowledge about sarcomab   
6. Desire to have contact with fellow patients 6. Desire to have contact with fellow patientsb   
7. Change in emotions 7. Change in emotions   
7.1 Feeling sad 7.1 Feeling sadb   
7.2 Being more emotional    
8. Felt stigmatized 8. Felt stigmatizedb   
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 independenceb 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 familyb   
2.2 Isolation 2.2 Isolation b   
2.3 Lack of understanding from others 2.3 Lack of understanding from othersb   
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 hobbiesb 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 costsb 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 workb   
6. Having a changed life 6. Having a changed lifeb   
  1. ADL activities of daily living
  2. aOnly reported for uterine sarcoma patients
  3. bReported for sarcoma patient population as a whole