Table 2 Survey resultsa (Q1–Q7 were demographic questions)
Items | All | Rare cancer (Group A) | Younger (Group B) | Non-rare cancer age ≥ 40 (Group C) | p-value |
|---|---|---|---|---|---|
Before treatment | |||||
Time from the first consultation to diagnosis was < 1 month (Q8) | 71.5% | 66.4% | 66.2% | 71.9% | A − C: p = 0.03 B − C: p = 0.07 |
Time from diagnosis to the first treatment was < 1 month (Q9) | 62.2% | 72.3% | 52.5% | 62.0% | A − C: p < 0.01 B − C: p = 0.01 |
I was able to talk about cancer or life as a cancer patient with someone after diagnosis (Q10) | 76.3% | 77.9% | 89.0% | 75.9% | A − C: p = 0.41 B − C: p < 0.01 |
My doctor advised me of the possibility of obtaining a second opinion (Q11) | 34.9% | 35.2% | 27.9% | 35.1% | A − C: p = 0.98 B − C: p = 0.01 |
I received a second opinion (Q12) | 19.5% | 21.9% | 19.4% | 19.4% | p = 0.54 |
I received enough information from medical staff before making treatment decision (Q13–1) | 75.0% | 75.7% | 65.4% | 75.2% | A − C: p = 0.77 B − C: p = 0.02 |
I am content with my choice of treatment (Q13–2) | 79.0% | 81.4% | 76.1% | 78.9% | p = 0.45 |
I was informed about the possibility of infertility before treatment (age < 40) (Q14) | 52.0% | ||||
I took some actions for fertility preservation (age < 40) (Q15) | 8.9% | ||||
I changed or discontinued treatment due to financial reasons (Q16) | 4.9% | 4.2% | 11.1% | 4.8% | A − C: p = 0.55 B − C: p = 0.03 |
I altered my financial plans or sought assistance from others to cover my medical expenses (Q17) | 26.9% | 28.4% | 53.1% | 26.1% | A − C: p = 0.47 B − C: p < 0.01 |
During treatment | |||||
I received enough information about the treatment schedule (Q18–1) | 75.1% | 75.7% | 72.0% | 75.1% | p = 0.55 |
I was able to anticipate the likely side effects of treatment (Q18–2) | 61.9% | 63.6% | 58.4% | 62.0% | p = 0.66 |
I had detailed discussions with medical staff about my treatment (Q18–3) | 67.5% | 72.6% | 57.8% | 67.5% | A − C: p = 0.06 B − C: p = 0.04 |
Medical staff listened and tried to understand my concerns (Q18–4) | 71.9% | 79.7% | 71.6% | 71.4% | A − C: p < 0.01 B − C: p = 0.98 |
My wishes regarding the treatment were respected (Q18–5) | 73.9% | 77.3% | 75.4% | 73.7% | p = 0.33 |
Medical staff responded to my pain or discomfort promptly (Q18–6) | 75.0% | 79.6% | 72.0% | 74.8% | p = 0.07 |
Relevant information was shared among medical staff (Q18–7) | 69.1% | 72.0% | 63.7% | 69.0% | A − C: p = 0.26 B − C: p = 0.05 |
I received treatment from a doctor with expertise (Q18–8) | 78.7% | 80.0% | 85.7% | 78.4% | A − C: p = 0.53 B − C: p = 0.03 |
I felt comfortable talking to the medical staff besides my doctor (Q18–9) | 48.8% | 53.7% | 52.2% | 48.5% | p = 0.32 |
I am satisfied with treatment I received (Q18–10) | 77.3% | 77.5% | 83.5% | 77.1% | A − C: p = 0.85 B − C: p = 0.04 |
Medical staff offered enough information regarding aspects of daily life while admitted (applicable patients only) (Q18–11) | 71.1% | 75.7% | 73.5% | 70.7% | p = 0.20 |
I visited a referral hospital without any trouble (applicable patients only) (Q18–12) | 82.5% | 80.8% | 79.5% | 82.7% | p = 0.79 |
I was transferred to my preferred hospital (applicable patients only) (Q18–13) | 79.2% | 78.3% | 75.5% | 79.4% | p = 0.72 |
I was asked on every consultation if I had pain during or after treatment (Q19) | 65.3% | 71.1% | 64.8% | 65.0% | p = 0.10 |
I was able to discuss my concerns about the changes in appearance due to treatment (Q20) | 28.3% | 32.0% | 46.3% | 27.6% | A − C: p = 0.08 B − C: p < 0.01 |
Overall experience from diagnosis through to treatment (0–10, average) (Q21) | 7.9 | 8.0 | 7.8 | 7.9 | p = 0.96 |
I was engaged in paid employment at the time of diagnosis (Q22) | 44.2% | 50.0% | 81.7% | 42.9% | A − C: p = 0.02 B − C: p < 0.01 |
I told my colleagues about my diagnosis (applicable patients only) (Q23) | 81.0% | 85.8% | 95.3% | 79.9% | A − C: p = 0.13 B − C: p < 0.01 |
My colleagues considered and managed the situation so that I could keep working while receiving treatment (applicable patients only) (Q24) | 65.0% | 69.8% | 68.6% | 64.5% | p = 0.15 |
I utilized existing resources to balance my treatment and work (applicable patients only) (Q25) | 36.1% | 34.0% | 51.4% | 35.5% | A − C: p = 0.78 B − C: p < 0.01 |
I received some advice from the medical staff about continuing to work (applicable patients only) (Q26) | 39.5% | 36.6% | 54.9% | 38.9% | A − C: p = 0.61 B − C: p < 0.01 |
I resigned or closed business due to treatment (applicable patients only) (Q27–1-1) | 19.8% | 19.6% | 20.5% | 19.8% | p = 0.96 |
I took leave of absence but did not resign or close business (applicable patients only) (Q27–1-2) | 54.2% | 54.3% | 57.1% | 54.0% | p = 0.72 |
After treatment (items related to survivorship) | |||||
I feel that cancer treatment for the general public has improved compared to a few years ago (Q28–1) | 75.6% | 73.5% | 69.5% | 75.8% | A − C: p = 0.43 B − C: p = 0.03 |
I feel that there is sufficient support, services, and places for cancer patients and their families to discuss their concerns about cancer (Q28–2) | 47.7% | 46.1% | 39.5% | 48.0% | A − C: p = 0.51 B − C: p < 0.01 |
I am aware of cancer counseling and support centers (Q29) | 66.4% | 63.3% | 67.5% | 66.5% | p = 0.35 |
I am aware of peer support (Q30) | 27.3% | 22.3% | 19.2% | 27.8% | A − C: p = 0.05 B − C: p < 0.01 |
I know what clinical trials are (Q31) | 39.7% | 37.5% | 44.3% | 39.7% | p = 0.40 |
I am aware of genome-based cancer treatments (Q32) | 17.0% | 13.5% | 16.3% | 17.1% | A − C: p = 0.04 B − C: p = 0.75 |
I am a burden on my family because of my cancer (patients only) (Q33–1) | 47.2% | 53.1% | 58.1% | 46.6% | A − C: p = 0.08 B − C: p < 0.01 |
I am a burden on people outside of my family because of my cancer (patients only) (Q33–2) | 21.4% | 30.2% | 40.0% | 20.3% | A − C: p < 0.01 B − C: p < 0.01 |
I received too much unnecessary attention after my cancer diagnosis (patients only) (Q33–3) | 12.3% | 13.2% | 22.6% | 11.9% | A − C: p = 0.47 B − C: p < 0.01 |
I feel discriminated against by people outside of my family because I have cancer (patients only) (Q33–4) | 5.3% | 5.2% | 15.4% | 4.9% | A − C: p = 0.88 B − C: p < 0.01 |
I am able to consult with medical staff when feeling pain or discomfort (patients only) (Q33–5) | 46.5% | 47.8% | 36.2% | 46.8% | A − C: p = 0.80 B − C: p < 0.01 |
I am able to consult with medical staff when experiencing mental distress (patients only) (Q33–6) | 32.8% | 33.3% | 22.0% | 33.1% | A − C: p = 0.94 B − C: p < 0.01 |
I am able to go about my daily life now (patients only) (Q33–7) | 70.5% | 69.2% | 66.8% | 70.7% | p = 0.50 |
I have sufficient support to relieve my physical pain and mental distress (patients only) (Q34–1) | 43.0% | 42.1% | 37.1% | 43.1% | A − C: p = 0.80 B − C: p = 0.05 |
I have no physical distress caused by cancer or cancer treatment (patients only) (Q34–2) | 55.4% | 49.4% | 49.8% | 56.0% | p = 0.25 |
I have no pain caused by cancer or cancer treatment (patients only) (Q34–3) | 71.5% | 63.7% | 65.6% | 72.2% | A − C: p = 0.02 B − C: p = 0.16 |
I have no mental distress due to cancer or cancer treatment (patients only) (Q34–4) | 62.0% | 57.0% | 48.9% | 62.8% | A − C: p = 0.18 B − C: p < 0.01 |
I have no difficulties going about my daily life due to pain and discomfort from cancer or cancer treatment (patients only) (Q34–5) | 69.2% | 66.5% | 59.8% | 69.7% | A − C: p = 0.48 B − C: p < 0.01 |