Background
Methods
Establish face and content validity
Literature review to identify items, domains and response scale
Focus group with AYA cancer survivors
Feedback from health professionals', researchers' and the general public
Revision of measure
Pilot testing
Establish psychometric properties
Description of the Cancer Needs Questionnaire - Young People (CNQ-YP)
Participants
Procedure
Statistical analysis
Psychometric evaluation
Factor analysis
Internal consistency
Test-retest reliability
Discriminative validity
Responsiveness
Acceptability
Results
Participants, response rates and consent bias
Demographic Characteristic | Non-consenters (n = 438) | Consenters (n = 139) | Test statistic | ||
---|---|---|---|---|---|
n (%)
|
n (%)
|
χ
2
|
df
|
p
| |
Female | 188 (43) | 89 (64) | 18.8 | 1 | < 0.01 |
Non-haematological | 243 (56) | 73 (53) | 0.31 | 1 | 0.58 |
≥ 2 years post-diagnosis | 293 (68) | 99 (71) | 0.56 | 1 | 0.45 |
Median (Q1-Q3)
|
Median (Q1-Q3)
|
z
|
p
| ||
Age at diagnosis | 22 (19-24) | 21 (18-23) | 2.24 | 0.03 |
Psychometric evaluation
Factor analysis
Internal consistency
Test-retest reliability
Revised factor analysis and internal consistency
Item number | Description of item | Factor loading | ||||||
---|---|---|---|---|---|---|---|---|
Factor 1
|
Factor 2
|
Factor 3
|
Factor 4
|
Factor 5
|
Factor 6
| |||
Factor 1 - Treatment Environment and Care (n = 116)
| ||||||||
Cancer treatment staff telling me: | 1 | about my diagnosis | 0.76 | |||||
2 | what might happen during treatment | 0.77 | ||||||
4 | whether I had the option to decline treatment | 0.54 | ||||||
5 | about the short-term side-effects of treatment | 0.73 | ||||||
6 | about the long-term side-effects of treatment | 0.65 | ||||||
7 | my chances of a full recovery | 0.78 | ||||||
8 | what would happen when treatment finished | 0.71 | ||||||
9 | whether I would be able to have children | 0.60 | ||||||
12 | whether my treatment was working | 0.87 | ||||||
13 | my test results as soon as possible | 0.87 | ||||||
14 | the way I felt was normal | 0.80 | ||||||
15 | how to manage my medication | 0.82 | ||||||
16 | what I could do to stay healthy | 0.67 | ||||||
17 | what to do if I noticed a particular side-effect | 0.74 | ||||||
Having cancer treatment staff who: | 20 | listened to my concerns | 0.89 | |||||
21 | treated me as an individual | 0.87 | ||||||
22 | were respectful | 0.93 | ||||||
23 | were approachable | 0.91 | ||||||
24 | were friendly | 0.91 | ||||||
25 | could have a laugh with me | 0.90 | ||||||
26 | explained what they were doing | 0.89 | ||||||
27 | spoke to me in a way that I could understand | 0.90 | ||||||
28 | let me talk about my feelings | 0.77 | ||||||
29 | let me ask questions | 0.90 | ||||||
30 | let me make decisions about my treatment | 0.74 | ||||||
31 | talked to me in private, without my family | 0.66 | ||||||
Being able to have: | 39 | time to myself | 0.55 | |||||
41 | privacy | 0.51 | ||||||
42 | pleasant surroundings | 0.52 | ||||||
43 | good food | 0.45 | ||||||
46 | a choice of cancer specialists | 0.64 | ||||||
47 | the same cancer staff throughout treatment | 0.63 | ||||||
48 | a choice of times for appointments | 0.64 | ||||||
Factor 2 - Daily Life (n = 116)
| ||||||||
Being able to: | 110 | make plans or think about the future | 0.51 | |||||
Coping with: | 102 | changes in my physical ability | 0.68 | |||||
103 | changes in my appearance | 0.69 | ||||||
107 | not being able to do the same things as other people my age | 0.75 | ||||||
117 | my parent/s being over-protective | 0.49 | ||||||
Managing: | 134 | pain | 0.65 | |||||
135 | medication | 0.48 | ||||||
136 | physical side-effects of treatment | 0.76 | ||||||
137 | feeling tired | 0.72 | ||||||
138 | loss of mobility | 0.65 | ||||||
142 | to take part in social activities | 0.71 | ||||||
143 | to travel to social events | 0.67 | ||||||
Factor 3 - Feelings and Relationships (n = 116)
| ||||||||
Feeling: | 84 | frustrated | 0.56 | |||||
86 | anxious or nervous | 0.73 | ||||||
Worrying about: | 91 | my cancer spreading | 0.76 | |||||
92 | my cancer returning | 0.66 | ||||||
93 | whether my cancer treatment has worked | 0.68 | ||||||
95 | having cancer treatment | 0.70 | ||||||
97 | how my family is coping | 0.68 | ||||||
Finding: | 98 | inner strength | 0.66 | |||||
Being able to: | 112 | accept my diagnosis | 0.60 | |||||
113 | be independent | 0.51 | ||||||
Coping with: | 125 | changes in my relationship with my partner | 0.53* | |||||
131 | changes in my relationships with my sibling/s | 0.59* | ||||||
Knowing how to: | 132 | ask my sibling/s for support | 0.51* | |||||
133 | give support to my sibling/s | 0.52* | ||||||
Factor 4 - Information and Activities (n = 116)
| ||||||||
Being able to: | 37 | spend time with people my own age | 0.44 | |||||
38 | talk to people my age who had been through a similar experience | 0.69 | ||||||
Being able to have: | 44 | leisure spaces and activities | 0.45 | |||||
Finding information that: | 75 | was specifically designed for me | 0.61 | |||||
81 | described relaxation techniques | 0.54 | ||||||
Factor 5 - Education (n = 65)
| ||||||||
Being able to: | 56 | attend classes | 0.69 | |||||
58 | get extensions or special consideration | 0.74 | ||||||
59 | get guidance about study options or future career paths | 0.56 | ||||||
Factor 6 - Work (n = 90)
| ||||||||
Knowing: | 71 | how much work I would miss | 0.67 | |||||
72 | how to ask managers/co-workers for support | 0.78 | ||||||
74 | that managers/co-workers had support to help them cope | 0.76 | ||||||
% of Total Variance
|
31%
|
13%
|
11%
|
8%
|
n/a
|
n/a
|
Description of factor | Number of items | Cronbach's alpha |
---|---|---|
Factor 1 - Treatment Environment/Care | 33 | 0.98 |
Factor 2 - Daily Life | 12 | 0.94 |
Factor 3 - Feelings/Relationships | 14 | 0.92 |
Factor 4 - Information/Activities | 5 | 0.83 |
Factor 5 - Education | 3 | 0.82 |
Factor 6 - Work | 3 | 0.89 |
Total Scale
|
70
|
0.98
|
Discriminative validity
Factor | Receiving Treatment | Finished Treatment | Wilcoxon rank sum | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
n
|
median
|
Q1
|
Q3
|
n
|
median
|
Q1
|
Q3
|
z
|
p
| |||
1 - Treatment Environment/Care | 17 | 1.8 | 1.1 | 2.1 | 116 | 1.5 | 1.2 | 2.2 | 0.32 | 0.75 | ||
2 - Daily Life | 17 | 2.3 | 1.1 | 3.2 | 115 | 1.4 | 1.0 | 2.2 | 1.46 | 0.14 | ||
3 - Feelings/Relationships | 17 | 2.4 | 1.6 | 2.6 | 115 | 1.5 | 1.2 | 2.3 | 1.81 | 0.07 | ||
4 - Information/Activities | 17 | 3.6 | 1.6 | 3.8 | 116 | 2.2 | 1.5 | 2.8 | 1.58 | 0.11 | ||
5 - Education | 11 | 1.3 | 1.0 | 2.0 | 67 | 1.7 | 1.0 | 2.7 | -0.92 | 0.36 | ||
6 - Work | 13 | 1.3 | 1.0 | 3.0 | 94 | 1.3 | 1.0 | 2.0 | 0.53 | 0.60 |
Potential responsiveness
Factor | Lowest possible score | Highest possible score | |
---|---|---|---|
n
|
n (%)
|
n (%)
| |
Factor 1 - Treatment Environment/Care | 133 | 11 (8.3) | 1 (0.8) |
Factor 2 - Daily Life | 132 | 36 (27) | 0 (0.0) |
Factor 3 - Feelings/Relationships | 132 | 19 (14) | 0 (0.0) |
Factor 4 - Information/Activities | 133 | 16 (12) | 6 (4.5) |
Factor 5 - Education | 78 | 33 (42) | 4 (5.1) |
Factor 6 - Work | 107 | 46 (43) | 4 (3.7) |