From: Unmet needs related to the quality of life of advanced cancer patients in Korea: a qualitative study
Category | Sheffield Profile for Assessment and Referral to care (SPARC) | Additional and revised items | |
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Communication and information issues | Communication within the medical field | 1. Have you talked to any of the people below about your condition? Primary care physician/nurse/persons of religion/social worker/family/other (Please write down the specifics for “other”) | · Do you want information about the state of your cancer, treatment method, side effects of your medications, and health care? · Do you want emotional empathy and a message of hope? · Did you understand the information received from the medical professionals correctly? · Would you like to receive more information about your medical or health condition from your medical professionals? · Were you able to freely express your opinion as a patient during the conversation with medical professionals? |
Communication about information delivery | |||
Physical symptoms | Have you ever struggled or suffered the following problems in the past month? 2. Pain, 3. Memory loss, 4. Headache, 5. Dry mouth, 6. Oral pain, 7. Shortness of breath, 8. Cough, 9. Nausea, 10. Vomiting, 11. Stool problems (constipation, diarrhea, incontinence), 12. Bladder problems, 13. General weakness, 14. Fatigue, 15. Night sleep disorder, 16. Daytime sleepiness, 17. Loss of appetite, 18. Weight change, 19. Difficulty swallowing 20. Worry about appearance change, 21. Anxious and impatient, 22. Symptoms do not seem to improve | · Added symptoms of numbness in hands and feet, edema, hair loss, and loss of memory. · Added items about standing and walking. · Needs a detailed list of symptoms according to the type of carcinoma and chemotherapy. | |
Mental issues | At the moment of cancer diagnosis | 23. Anxiety, 24. Depression, 25. Confusion, 26. Difficult to concentrate, 27. Loneliness, 28. Everything seems difficult, 29. Living seems to be meaningless, 30. The thought of ending everything, 31. My condition affects my sexual life | · Added denial, anger, resentment, sadness. · Experienced trauma. · Support consultation is required for cancer diagnosis. |
Chemotherapy process | · Added frustration and despair. · Need for supportive companion due to the experience of frustration while feeling ambivalent about restoring mental well-being. | ||
Religious and spiritual issues | 32. Worrying about death and dying 33. Religious or spiritual needs not being met | · Do you want to receive counseling (or prayer) from a religious person? | |
Independence and activity | 34. Nothing I can do alone (loss of independence) 35. Changes in daily life such as washing face, bathing, and toileting 36. Changes to everyday chores such as cooking and cleaning | · The word “activity” tends to be widely interpreted in a social sense rather than in a personal sense in Korea. | |
Family and social issues | 37. Sense of not being understood about what you want by others 38. Worrying about how your illness affects your family or others 39. Sense of inability to receive help from family or others 40. Need for more help than you can get from family or others | · Revision feedback on Question 37: Sense of unawareness of my health condition by family or others · Revision feedback on Question 38: Sense of burden (or guilt) on the family due to my cancer · Difficulty maintaining a role as a family member | |
· Has the area of my activity decreased due to my appearance changes? (Experience of disconnection) | |||
Treatment-related issues | Dietary restriction | 41. Treatment side effects 42. Worrying about long-term side effects of treatment | · Request information on health supplement food · Request information on eating habit improvement |
Exercises | · Demand for individualized exercise programs considering the patient’s condition | ||
Medicine side effects | · Demand for information on side effects and countermeasures for chemotherapy | ||
Personal issues | 43. Do you need assistance with personal business? 44. Would you like to speak with another expert about your condition or treatment? 45. Do you want more information about the following? My condition and care providing/treatment/other forms of assistance/financial assistance/other (Please write it down the specifics for the other) | · Need to consider the meaning of life–explore activities with sense of value |