Characteristic / N(152) / %
Age (years)
Mean (sd) / 63.9 (11.0)
Median (IQR) / 64 (55, 73)
Gender
Male / 77 / 50.7
Remoteness area
Major City / 75 / 49.3
Regional / 76 / 50.0
Remote/very remote / 1 / 0.7
Marital status a
Married/de facto / 107 / 70.4
Not married/de facto / 45 / 29.6
Country of birth
Australia / 124 / 81.6
Other / 28 / 18.4
First language
English / 145 / 95.4
Other / 7 / 4.6
Employment situation b
Working / 43 / 28.3
Retired / 69 / 45.4
Other / 40 / 26.4
Site of disease c
Colon / 82 / 53.9
Rectum / 57 / 37.5
Overlapping / 15 / 9.9
Disease stage
I / 12 / 7.9
II / 36 / 23.7
III / 104 / 68.4
Treatment
Surgery / 13 / 8.6
Surgery + Chemotherapy / 92 / 60.5
Surgery + Chemo + Radiotherapy / 47 / 30.9

Table 1: Patient characteristics

a Includes never married, separated/divorced and widowed

b Other includes sick leave, not employed, home duties and studying

c Multiple response, so does not add to 152

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Table 2: Descriptives for BSI and QLQ-C30 scales and items and their associations with days since end of treatment

Measures / n / Mean / SD / rhoa / 95%CI for rho
BSI Standardised Community Norms
Somatization / 151 / 54.1 / 8.9 / -0.11 / (-0.26, 0.04)
Depression / 151 / 47.4 / 8.1 / -0.01 / (-0.19, 0.16)
Anxiety / 151 / 45.6 / 7.9 / 0.06 / (-0.10, 0.21)
Global Severity Index / 151 / 49.2 / 9.0 / -0.05 / (-0.21, 0.11)
EORTC QLQ-C30
Global / 151 / 68.9 / 19.5 / 0.20 / (0.04, 0.35)
Physical / 151 / 82.6 / 16.2 / 0.10 / (-0.06, 0.26)
Role / 151 / 73.0 / 26.7 / 0.19 / (0.04, 0.35)
Emotional / 151 / 82.3 / 17.9 / -0.02 / (-0.19, 0.13)
Cognitive / 151 / 78.4 / 21.7 / -0.08 / (-0.25, 0.08)
Social / 151 / 74.5 / 23.6 / 0.18 / (0.02, 0.33)
Fatigue / 151 / 35.8 / 22.6 / -0.19 / (-0.33, -0.03)
Nausea/vomiting / 151 / 8.2 / 14.3 / -0.28 / (-0.42, -0.13)
Pain / 151 / 18.0 / 24.8 / -0.04 / (-0.18, 0.10)
Dyspnoea / 151 / 14.6 / 22.6 / -0.01 / (-0.17, 0.14)
Insomnia / 150 / 28.2 / 26.1 / -0.04 / (-0.21, 0.11)
Appetite loss / 151 / 16.1 / 23.7 / -0.16 / (-0.32, -0.01)
Constipation / 150 / 15.6 / 25.5 / 0.00 / (-0.16, 0.16)
Diarrhoea / 150 / 20.2 / 24.7 / -0.12 / (-0.28, 0.06)
Financial problems / 151 / 18.1 / 26.9 / 0.00 / (-0.16, 0.16)

a Spearman’s rank correlation coefficient for days since end of treatment with BSI-18 and QLQ-C30 scale/item scores. Associations are statistically significant if the 95%CI for the estimate does not include zero.

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Table 3: Comparison between Survivor Care and general population samples on QLQ-C30

Unadjusted mean
Scale/item / SurvivorCare / General population / Adjusted differencea / 95%CI for adjusted difference / p-value / Evidence-based effect sizeb
Physical / 82.6 / 84.8 / -0.9 / (-4.7, 2.9) / 0.66 / trivial
Role / 73.0 / 84.6 / -12.9 / (-18.1, -7.7) / <0.001 / small
Emotional / 82.3 / 72.5 / 4.4 / (0.0, 8.8) / 0.051
Cognitive / 78.4 / 83.2 / -7.9 / (-12.2, -3.6) / <0.001 / small
Social / 74.5 / 84.0 / -11.2 / (-16.3, -6.2) / <0.001 / medium
Fatigue / 35.8 / 29.5 / 9.0 / (4.5, 13.5) / <0.001 / small
Nausea/vomiting / 8.2 / 6.2 / 5.1 / (2.4, 7.7) / <0.001 / small
Pain / 18.0 / 26.6 / -8.6 / (-14.0, -3.3) / 0.002 / small
Dyspnoea / 14.6 / 14.3 / 1.0 / (-3.7, 5.7) / 0.68 / trivial
Insomnia / 28.2 / 28.7 / 4.3 / (-1.4, 10.0) / 0.14 / small
Appetite loss / 16.1 / 10.9 / 8.7 / (4.4, 13.0) / <0.001 / small
Constipation / 15.6 / 11.1 / 5.3 / (0.9, 9.8) / 0.019 / small
Diarrhoea / 20.2 / 8.3 / 15.6 / (11.7, 19.6) / <0.001 / at least medium
Financial problems / 18.1 / 12.1 / 9.9 / (4.8, 15.0) / <0.001 / small
Global health status / 68.9 / 63.2 / 4.2 / (-0.3, 8.6) / 0.065 / small

a Difference from general population (N=421) on QLQ-C30 scales and items adjusted for age, sex and marital status

b Based on guidelines for trivial, small, medium and large effects provided in Table 4 of Cocks et al 2011 [28] (no estimate provided for Emotional functioning and estimates for large effects not provided for Diarrhoea and Financial problems)

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Table 4: Associations for CR29 summary scores with BSI and QLQ-C30 scale scoresa

Measure / Urinary summary / Bowel summary / Psychological summary
Estimate / 95%CI for estimate / Estimate / 95%CI for estimate / Estimate / 95%CI for estimate
BSI
Somatization / 0.20 / (0.04, 0.34) / 0.21 / (0.05, 0.36) / 0.32 / (0.17, 0.45)
Depression / 0.26 / (0.10, 0.41) / 0.24 / (0.08, 0.39) / 0.51 / (0.38, 0.64)
Anxiety / 0.21 / (0.03, 0.37) / 0.25 / (0.07, 0.40) / 0.43 / (0.28, 0.56)
QLQ-C30
Physical functioning / -0.32 / (-0.48, -0.16) / -0.34 / (-0.48, -0.20) / -0.46 / (-0.58, -0.31)
Role functioning / -0.15 / (-0.31, 0.01) / -0.31 / (-0.45, -0.16) / -0.39 / (-0.52, -0.25)
Emotional functioning / -0.15 / (-0.30, 0.01) / -0.24 / (-0.40, -0.07) / -0.52 / (-0.63, -0.38)
Cognitive functioning / -0.11 / (-0.28, 0.03) / -0.30 / (-0.45, -0.13) / -0.38 / (-0.52, -0.24)
Social functioning / -0.06 / (-0.21, 0.09) / -0.28 / (-0.42, -0.12) / -0.51 / (-0.64, -0.39)
Fatigue / 0.19 / (0.03, 0.34) / 0.33 / (0.16, 0.49) / 0.49 / (0.36, 0.60)
Nausea/vomiting / -0.01 / (-0.17, 0.15) / 0.15 / (-0.03, 0.31) / 0.18 / (0.04, 0.32)
Pain / 0.14 / (-0.02, 0.29) / 0.37 / (0.22, 0.51) / 0.39 / (0.25, 0.52)

a All medium-sized associations are in bold for emphasis. Associations are statistically significant if the 95%CI for the estimate does not include zero.

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AppendixS1: Relative frequencies (%) for responses to the QLQ-CR29

Item / N / Not at all / A little / Quite a bit / Very much
1 / Urinate frequently, day / 151 / 32 / 37 / 28 / 3
2 / Urinate frequently, night / 151 / 34 / 50 / 15 / 1
3 / Leakage of urine / 151 / 72 / 24 / 3 / 0
4 / Pain during urination / 151 / 93 / 5 / 1 / 1
5 / Abdominal pain / 151 / 69 / 24 / 4 / 2
6 / Buttock/anal area/rectum pain / 151 / 72 / 20 / 5 / 3
7 / Bloating / 151 / 61 / 30 / 7 / 1
8 / Blood in stools / 149 / 93 / 4 / 1 / 0
9 / Mucus in stools / 148 / 84 / 11 / 3 / 0
10 / Dry mouth / 151 / 45 / 45 / 9 / 1
11 / Hair Loss / 151 / 63 / 30 / 7 / 1
12 / Problems with taste / 150 / 44 / 32 / 15 / 7
13 / Worried about future health / 150 / 29 / 43 / 20 / 7
14 / Worried about weight / 151 / 41 / 43 / 15 / 1
15 / Felt less physically attractive / 151 / 55 / 30 / 10 / 5
16 / Felt less feminine/masculine / 151 / 62 / 26 / 5 / 7
17 / Dissatisfied with body / 151 / 57 / 28 / 10 / 4
Stoma (n=56)
19 / Flatulence / 55 / 34 / 50 / 11 / 4
20 / Leakage of stools / 55 / 39 / 48 / 9 / 2
21 / Sore skin around stoma / 55 / 38 / 46 / 9 / 5
22 / Frequent bag changes, day / 55 / 48 / 30 / 16 / 4
23 / Frequent bag changes, night / 55 / 66 / 25 / 5 / 2
24 / Embarrassment due to stoma / 54 / 48 / 30 / 5 / 13
25 / Problems caring for stoma / 55 / 70 / 20 / 7 / 2
No stoma (n=95)
19 / Flatulence / 87 / 32 / 36 / 23 / 1
20 / Leakage of stools / 88 / 64 / 27 / 1 / 0
21 / Sore skin around anal area / 88 / 59 / 25 / 6 / 2
22 / Frequent bowel movements, day / 88 / 30 / 38 / 22 / 3
23 / Frequent bowel movements, night / 88 / 65 / 25 / 1 / 1
24 / Embarrassment due to bowel movements / 88 / 57 / 28 / 3 / 4
Men only (n=77)
25 / Interested in sex / 71 / 29 / 48 / 13 / 3
26 / Impotence / 71 / 35 / 23 / 10 / 23
Women only (n=75)
27 / Interested in sex / 63 / 61 / 19 / 3 / 1
28 / Pain/ discomfort during intercourse / 50 / 48 / 11 / 4 / 4

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Appendix S2: Relative frequencies (%) for moderate/high needs ranked by prevalence

Item / n / %
7 / I need to know that all my doctors talk to each other to coordinate my care / 104 / 68.4
6 / I need to feel like I am managing my health together with the medical team / 87 / 57.2
4 / I need the very best medical care / 85 / 55.9
8 / I need any complaints regarding my care to be properly addressed / 84 / 55.3
5 / I need local health services that are available when I require them / 70 / 46.1
3 / I need information provided in a way I can understand / 57 / 37.5
18 / I need more accessible hospital parking / 51 / 33.6
19 / I need help managing my concern about the cancer coming back / 50 / 32.9
9 / I need access to complementary and/or alternative therapy services / 46 / 30.3
1 / I need up to date information / 44 / 28.9
11 / I need help to manage ongoing side effects and/or complications of treatment / 44 / 28.9
28 / I need an ongoing case manager to whom I can go to find out about services whenever they are needed / 36 / 23.7
2 / My family and/or partner needs information relevant to them / 34 / 22.4
12 / I need help to adjust to changes in my quality of life as a result of my cancer / 27 / 17.8
15 / I need help to find out about financial support and/or government benefits to which I am entitled / 26 / 17.1
10 / I need help to reduce stress in my life / 25 / 16.4
16 / Due to my cancer, I need help getting life and/or travel insurance / 23 / 15.1
20 / I need emotional support to be provided for me / 23 / 15.1
24 / I need to talk to others who have experienced cancer / 20 / 13.2
21 / I need help to know how to support my partner and family / 18 / 11.8
31 / I need to help to cope with others not acknowledging the impact that cancer has had on my life / 18 / 11.8
32 / I need help to deal with my own and/or others expectations of me as a "cancer survivor" / 17 / 11.2
26 / I need help to adjust to changes to the way I feel about my body / 16 / 10.5
27 / I need help to address problems with my/our sex life / 14 / 9.2
30 / I need help to cope with changes to my belief that nothing bad will ever happen in my life / 13 / 8.6
14 / I need assistance with getting and/or maintaining employment / 12 / 7.9
22 / I need help to deal with the impact that cancer has had on my relationship with my partner / 12 / 7.9
33 / I need help to try to make decisions about my life in the context of uncertainty / 12 / 7.9
29 / I need help to move on with my life / 11 / 7.2
35 / I need help to make my life count / 9 / 5.9
23 / I need help with developing new relationships after my cancer / 7 / 4.6
17 / Due to my cancer, I need help accessing legal services / 6 / 3.9
25 / I need help to handle the topic of cancer in social and/or work situations / 6 / 3.9
34 / I need help to explore my spiritual beliefs / 3 / 2.0
13 / I need help with having a family due to fertility problems / 2 / 1.3

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