Table 4.
Comparison of numbers of meaningful concepts used by survivors and caregivers
| Meaningful concepts | Mean (SD) of frequency | Wilcoxon rank-sum test | |||
| Survivors | Caregivers | Normal approximation z-score |
95% CI | P value | |
| Pain interference | n=18 | n=13 | |||
| Hard to sit* | 0.22 (0.43) | 0 (0) | 3.5 | 0.79 to 2.79 | <0.001 |
| Hard to run | 0.33 (0.69) | 0 (0) | 3.85 | 0.88 to 2.70 | <0.001 |
| Needed help walking | 0.17 (0.51) | 0 (0) | 3.09 | 0.45 to 1.99 | 0.002 |
| Hard to do sports/exercise | 0.78 (0.94) | 0.23 (0.83) | 2.7 | 0.60 to 3.80 | 0.007 |
| Hard to pay attention | 1.22 (1.52) | 0.23 (0.60) | 2.67 | 0.56 to 3.66 | 0.008 |
| Felt angry | 0.50 (0.71) | 0.01 (0.28) | 2.61 | 0.49 to 3.44 | 0.009 |
| Hard to stay standing | 0.33 (0.49) | 0.08 (0.28) | 2.13 | 0.13 to 3.18 | 0.033 |
| Walked carefully | 0.33 (0.14) | 0.08 (0.28) | 1.69 | −0.22 to 3.02 | 0.09 |
| Pain so bad had to take medicine | 0.44 (0.70) | 1.08 (1.19) | −1.61 | −3.38 to 0.33 | 0.107 |
| Felt grumpy | 0.28 (0.67) | 0.54 (0.18) | −1.47 | −3.52 to 0.51 | 0.143 |
| Hurt a lot | 1.39 (0.31) | 2.00 (0.41) | −1.33 | −3.01 to 0.57 | 0.182 |
| Fatigue | n=21 | n=13 | |||
| Kept me from having fun | 0.33 (0.58) | 0 (0) | 4.14 | 1.10 to 3.08 | <0.001 |
| Got tired easily | 0.19 (0.40) | 0 (0) | 3.62 | 0.76 to 2.54 | <0.001 |
| Too tired to eat | 0.14 (0.36) | 0 (0) | 3.17 | 0.54 to 2.28 | 0.002 |
| Too tired to walk* | 0.19 (0.51) | 0 (0) | 3.33 | 0.58 to 2.23 | 0.001 |
| Too tired to talk | 0.19 (0.51) | 0 (0) | 3.22 | 0.55 to 2.29 | 0.001 |
| Too tired to read (for school) | 0.14 (0.48) | 0 (0) | 3.01 | 0.39 to 1.86 | 0.003 |
| Too tired to go up and down stairs | 0.10 (0.30) | 0 (0) | 3.15 | 0.43 to 1.83 | 0.002 |
| Trouble doing schoolwork | 0.95 (1.16) | 0.23 (0.44) | 2.42 | 0.40 to 3.78 | 0.016 |
| Felt weak | 0.38 (0.67) | 0.77 (0.28) | 1.94 | −0.02 to 2.98 | 0.052 |
| Too tired to think* | 0.21 (0.41) | 0.08 (0.28) | 1.87 | −0.07 to 2.95 | 0.061 |
| Body moves slower* | 0.05 (0.22) | 0.54 (0.66) | −3.55 | −4.46 to 1.29 | <0.001 |
| Fell asleep at school* | 0 (0.0) | 0.08 (0.28) | −2.98 | −2.11 to 0.43 | 0.003 |
| Too tired to enjoy things I like to do | 0.05 (0.22) | 0.31 (0.13) | −2.23 | −3.85 to 0.25 | 0.025 |
| Felt irritable* | 1.00 (1.30) | 1.85 (1.57) | −1.62 | −3.40 to 0.33 | 0.106 |
| Psychological stress | n=19 | n=14 | |||
| Worried something bad would happen | 0.37 (0.76) | 0 (0) | 3.85 | 0.88 to 2.71 | <0.001 |
| Felt scared | 0.37 (0.83) | 0 (0) | 3.87 | 0.89 to 2.71 | <0.001 |
| Too many things to do | 0.16 (0.37) | 0 (0) | 3.54 | 0.69 to 2.38 | <0.001 |
| Unable to remember answers, even for questions I knew answer to | 0.16 (0.37) | 0 (0) | 3.51 | 0.68 to 2.39 | <0.001 |
| Felt fearful | 0.11 (0.32) | 0 (0) | 3.23 | 0.49 to 1.98 | 0.001 |
| Felt secure | 0.11 (0.32) | 0 (0) | 3.25 | 0.49 to 1.98 | 0.001 |
| Felt in control of my life | 0.16 (0.50) | 0 (0) | 3.31 | 0.50 to 1.96 | 0.001 |
| Unable to manage things in my life | 0.11 (0.32) | 0 (0) | 3.25 | 0.49 to 1.98 | 0.001 |
| Felt panicky | 0.07 (0.27) | 0 (0) | 1.75 | −0.18 to 3.11 | 0.081 |
| Felt like fighting | 0 (0) | 0.36 (0.63) | −4.23 | −3.58 to 1.31 | <0.001 |
| Lost temper easily | 0 (0) | 0.36 (0.63) | −4.01 | −3.64 to 1.25 | <0.001 |
| Felt annoyed | 0 (0) | 0.14 (0.36) | −3.42 | −2.63 to 0.71 | 0.001 |
| Thinking was slow | 0 (0) | 0.14 (0.53) | −3.17 | −1.88 to 0.44 | 0.002 |
| Trouble concentrating | 0 (0) | 0.14 (0.36) | −3.24 | −2.69 to 0.66 | 0.001 |
| Small things upset me | 0 (0) | 0.07 (0.27) | −3.06 | −1.91 to 0.42 | 0.002 |
| Felt nervous | 0 (0) | 0.07 (0.27) | −3.10 | −1.90 to 0.43 | 0.002 |
| Too much going on | 0 (0) | 0.07 (0.27) | −2.98 | −1.93 to 0.40 | 0.003 |
| Felt angry | 0.05 (0.23) | 0.79 (1.25) | −2.66 | −4.00 to 0.61 | 0.008 |
| Felt under pressure | 0.37 (1.01) | 1.00 (1.24) | −1.79 | −3.69 to 0.17 | 0.073 |
| Felt distressed | 0.63 (0.96) | 1.29 (1.27) | −1.62 | −3.58 to 0.34 | 0.104 |
| Felt stressed | 0.47 (0.77) | 0.79 (0.70) | −1.61 | −3.43 to 0.37 | 0.108 |
| Stigma | n=14 | n=8 | |||
| Others my age avoided me | 0.64 (1.86) | 0 (0) | 3.20 | 0.53 to 2.21 | 0.001 |
| Felt different from others my age | 1.07 (1.64) | 0.25 (0.46) | 1.17 | −0.71 to 2.78 | 0.243 |
| Tended to blame myself for my problems | 0 (0) | 0.25 (0.46) | −3.34 | −3.94 to 0.79 | 0.001 |
| Others my age bullied me | 0.50 (1.09) | 0.88 (0.64) | −1.88 | −3.70 to 0.06 | 0.042 |
| Others my age seemed uncomfortable | 0.29 (1.07) | 0.63 (0.92) | −1.54 | −3.58 to 0.43 | 0.125 |
| Feel embarrassed about condition | 0.07 (0.27) | 0.26 (0.74) | −1.16 | −3.23 to 0.83 | 0.245 |
| Because of condition, others were mean to me | 0.21 (0.80) | 0.16 (0.46) | −1.00 | −3.06 to 1.00 | 0.320 |
| Meaning and purpose | n=20 | n=16 | |||
| Expect to enjoy future life | 0.20 (0.09) | 0 (0) | 3.65 | 0.87 to 2.88 | <0.001 |
| Expect good things to happen | 0.15 (0.28) | 0 (0) | 3.80 | 0.77 to 2.42 | <0.001 |
| Life is filled with important things | 0.06 (0.25) | 0 (0) | 2.57 | 0.49 to 3.61 | 0.010 |
| Have goals for myself | 1.05 (1.32) | 0.31 (0.48) | 2.31 | 0.30 to 3.67 | 0.021 |
| Expect to achieve what I want in life | 0.3 (0.47) | 0.06 (0.25) | 2.12 | 0.13 to 3.40 | 0.034 |
| Want to help others* | 0.9 (1.25) | 0.25 (0.58) | 2.04 | 0.07 to 3.47 | 0.041 |
| Expect to succeed at what I try | 0.3 (0.57) | 0.06 (0.25) | 1.72 | −0.21 to 3.21 | 0.086 |
| Things I need to do in life | 0.2 (0.41) | 0.06 (0.25) | 1.38 | −0.49 to 2.82 | 0.166 |
| Satisfied with purpose in life | 0 (0) | 0.25 (0.57) | −3.54 | −3.09 to 0.89 | <0.001 |
| Things I want to do in life | 0.25 (0.44) | 0.88 (0.72) | −3.33 | −4.43 to 1.15 | 0.001 |
| Expect to have success in future | 0 (0) | 0.13 (0.34) | −3.23 | −2.58 to 0.63 | 0.001 |
| Know where I am going in life | 0.10 (0.31) | 0.44 (0.51) | −2.53 | −4.06 to 0.52 | 0.011 |
| Make plans for future | 0.05 (0.22) | 0.25 (0.45) | −1.91 | −3.44 to 0.05 | 0.056 |
| Expect to have family in the future | 0.70 (1.83) | 0.75 (0.86) | −1.51 | −3.49 to 0.45 | 0.131 |
| Life is filled with things that interest me | 0.25 (0.55) | 0.56 (0.72) | −1.52 | −3.47 to 0.44 | 0.129 |
| Have goals for future | 0.25 (0.55) | 0.50 (0.63) | −1.57 | −3.24 to 0.36 | 0.116 |
*New concepts generated from the semistructured interviews.