Background
Methods
The measure
Phase 1: Relevance, face and content validity
Cultural relevance
Relevance to target population
Phase 2: Psychometric evaluation of the SUNS
Sample
Procedure
Measures
Patient, disease and treatment characteristics
Depression, anxiety and stress
Statistical analysis
Construct validity
Convergent validity
Known-groups (discriminant) validity
Internal reliability
Test-retest reliability
Floor and ceiling effects
Sample size
Results
Response rates
Participant and non-participant characteristics
Characteristics | Participants (n = 715)a
| Non-participants (n = 1242)a
| Chi-squared χ2(df), p
| ||
---|---|---|---|---|---|
N | % | N | % | ||
Cancer Type
| 11.05(3), 0.011
| ||||
Non-Hodgkin’s Lymphoma (NHL) | 397 | 59% | 667 | 56% | |
Leukemia | 129 | 19% | 194 | 16% | |
Myeloma | 108 | 16% | 203 | 17% | |
Other lymphoma | 42 | 6.2% | 123 | 10% | |
Age at diagnosis
| 25.12(4), <0.001
| ||||
15-39 | 54 | 8.0% | 169 | 14% | |
40-49 | 71 | 11% | 144 | 12% | |
50-59 | 179 | 26% | 263 | 22% | |
60-69 | 236 | 35% | 341 | 29% | |
70+ | 136 | 20% | 270 | 23% |
Psychometric properties of the SUNS
Construct validity
Domains from original measure | Item | Factor 1 | Factor 2 | Factor 3 | Factor 4 | Factor 5 |
---|---|---|---|---|---|---|
Information
| Finding information about what signs to look for and when to be concerned | 0.34 |
0.51
| |||
Knowing which sources of information to trust |
0.59
| |||||
Finding information about all my treatment choices, including no treatment at all | 0.38 |
0.61
| ||||
Finding information about complementary or alternative therapies | 0.31 |
0.51
| ||||
Dealing with fears about cancer spreading | 0.32 |
0.62
| ||||
Dealing with worry about whether the treatment has worked | 0.33 |
0.59
| ||||
Dealing with feelings of worry (anxiety) between follow-ups | 0.43 |
0.55
| ||||
Dealing with not feeling sure that the cancer has gone | 0.34 |
0.49
| ||||
Financial concerns
| Worry about earning money |
0.75
| ||||
Having to take a pension or disability allowance |
0.76
| |||||
Paying household bills or other payments |
0.84
| |||||
Adapting to living on a pension or disability allowance |
0.82
| |||||
Paying non-medical costs related to my cancer (travel, accommodation, special foods, etc.) |
0.62
| |||||
Finding what type of financial assistance is available and how to obtain it |
0.46
| |||||
Finding car parking that I can afford at the hospital or clinic |
0.43*
| 0.34 | ||||
Understanding what is covered by my medical insurance or benefits |
0.43*
| 0.30 | ||||
Knowing how much time I would need away from work |
0.56
| |||||
Doing work around the house (cooking, cleaning, home repairs etc.) |
0.39
| |||||
Doing yard work (lawn mowing, etc.) | 0.33 |
0.39
| ||||
Access and continuity of care
| Finding information about who I should contact if I have a problem or concern |
0.50
| ||||
Finding information about cancer and its effects in a way I can understand |
0.52
| 0.41 | ||||
Finding out what is involved in follow-up care |
0.54
| 0.37 | ||||
Making sure my family doctor could get information from specialists |
0.65
| |||||
Making sure I was treated in a hospital or clinic that was as physically pleasant as possible |
0.67
| |||||
Having access to cancer services close to my home |
0.50
| |||||
Having access to cancer services at night and on weekends |
0.71
| |||||
Getting appointments with my family doctor quickly enough |
0.63
| |||||
Getting appointments with specialists quickly enough (oncologist, surgeon etc.) |
0.79
| |||||
Getting follow-up tests quickly enough |
0.85
| |||||
Getting test results quickly enough |
0.79
| |||||
Having access to care from other health specialists (e.g. dieticians, physiotherapists, occupational therapists) |
0.68
| |||||
Making sure I had choices about which hospital or clinic I could go to |
0.75
| |||||
Making sure health care workers had access to my medical information when planning services for me |
0.85
| |||||
Feeling comfortable in the waiting room |
0.63
| |||||
Making sure I had enough time to ask my doctor or nurse questions |
0.81
| |||||
Making sure all my health care workers had all the medical files related to my cancer care |
0.87
| |||||
Getting the health care team to attend promptly to my physical needs |
0.78
| |||||
Finding health care professionals who were friendly and could have a joke with me |
0.84
| |||||
Making sure the health care team understood and was aware of my feelings and emotional needs |
0.70
| |||||
Making sure I was treated like a person, not just another case |
0.77
| |||||
Understanding the information I was given |
0.67
| |||||
Relationships
| Dealing with the way other people react to my new priorities and my different outlook on life |
0.58
| ||||
Dealing with losses and changes in my relationships |
0.48
| |||||
Telling others how I was feeling physically | 0.37 |
0.50
| ||||
Telling others how I was feeling emotionally | 0.42 |
0.49
| ||||
Talking to my family and friends about how they were feeling | 0.35 |
0.44
| ||||
Finding someone to talk to who understands and has been through a similar experience | 0.36 |
0.45
| ||||
Dealing with people who expect me to be “back to normal” | 0.47 |
0.52
| ||||
Dealing with people not knowing what to say or how to behave | 0.35 |
0.53
| ||||
Dealing with people who expect me to feel happy or relieved when treatment has ended |
0.49*
| 0.43 | ||||
Dealing with people not understanding what I’m going through |
0.61*
| 0.47 | ||||
Dealing with how people are not able to cope with my illness | 0.42 |
0.51
| ||||
Dealing with people accepting that having cancer has changed me as a person | 0.52 |
0.54
| ||||
Dealing with reduced support from others when treatment has ended | 0.38 |
0.46
| ||||
Dealing with strains in relationships |
0.50*
| 0.39 | ||||
Finding someone to listen to me even if there is nothing they can do | 0.47 |
0.48
| ||||
Emotional Health
| Dealing with people not understanding how my physical abilities have changed |
0.54
| 0.37 | |||
Dealing with feeling like I am a burden to my family and friends |
0.60
| |||||
Dealing with feeling depressed |
0.79
| |||||
Dealing with feeling tired |
0.73
| |||||
Dealing with feeling stressed |
0.76
| |||||
Dealing with feeling worried (anxious) |
0.78
| |||||
Dealing with feeling lonely |
0.61
| |||||
Dealing with feeling vulnerable |
0.76
| |||||
Dealing with worry about the emotional well-being of my family |
0.64
| |||||
Dealing with grief and loss |
0.70
| |||||
Dealing with feelings about death and dying |
0.78
| |||||
Dealing with not feeling able to set future goals or make long-term plans |
0.82
| |||||
Dealing with losing confidence in my own abilities |
0.87
| |||||
Dealing with feeling a loss of control |
0.91
| |||||
Coping with feelings of despair |
0.88
| |||||
Coping with feeling like a different person |
0.83
| |||||
Dealing with not feeling happy or relieved when treatment has ended |
0.69
| |||||
Dealing with not being able to feel ‘normal’ |
0.84
| |||||
Trying to stay positive |
0.84
| |||||
Trying to keep a sense of hope |
0.84
| |||||
Dealing with feeling guilty about what I have put others through |
0.78
| |||||
Dealing with being told I had cancer |
0.63
| |||||
Wanting to reflect on what I have achieved |
0.66
| |||||
Dealing with not wanting to do the things I used to do |
0.83
| |||||
Knowing how to relax |
0.79
| |||||
Dealing with feelings of isolation |
0.70
| |||||
Coping with having a bad memory or lack of focus |
0.79
| |||||
Dealing with changes in how my body appears |
0.67
| |||||
Dealing with changes in my physical ability |
0.78
| |||||
Coping with going back into the ‘real’ world |
0.73
| |||||
Coping with things not going back to how they were before I had cancer |
0.85
| |||||
Dealing with missing important events like holidays |
0.70
| |||||
Support for finding meaning or new purpose in life |
0.73
|
Known-groups (discriminant) validity
Cancer recurrence
|
Age at diagnosis
|
Current treatment of chemotherapy, radiation, bone marrow/stem cell harvest/transplant, hormone or antibody)
| |||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Yes
|
No/unsure
| <60 years | ≥60 years | Yes | No | ||||||||||
Domain | n | Median | n | Median | p-valuea
| n | Median | n | Median | p-valuea
| n | Median | n | Median | p-valuea
|
Information
| 149 | 0.38 | 499 | 0.38 | 0.13 | 291 | 0.63 | 350 | 0.13 | <0.001* | 147 | 0.50 | 525 | 0.25 | 0.07 |
Financial concerns
| 151 | 0.36 | 502 | 0.18 | 0.02* | 293 | 0.36 | 353 | 0.09 | <0.001* | 149 | 0.36 | 526 | 0.18 | 0.005* |
Access and continuity of care
| 154 | 0.14 | 508 | 0.09 | 0.01* | 295 | 0.14 | 356 | 0.05 | <0.001* | 152 | 0.18 | 532 | 0.09 | 0.05 |
Relationships
| 154 | 0.33 | 509 | 0.27 | 0.25 | 293 | 0.53 | 358 | 0.07 | <0.001* | 151 | 0.40 | 533 | 0.27 | 0.28 |
Emotional Health
| 155 | 0.68 | 509 | 0.33 | 0.02* | 294 | 0.55 | 357 | 0.21 | <0.001* | 151 | 0.58 | 534 | 0.30 | 0.008* |
Convergent validity
Internal consistency
Domain | Number of participants answering all domain itemsa
| Cronbach’s alpha | Number of participants answering >70% of domain itemsb
| n (%) lowest score | n (%) highest score | Median (First Quartile and third Quartile) |
---|---|---|---|---|---|---|
Information | 652 | 0.93 | 686 | 267 (39) | 0 (0.0) | 0.38 (0.0, 1.14) |
Financial concerns | 650 | 0.92 | 689 | 267 (39) | 2 (0.3) | 0.18 (0.0, 0.82) |
Access and continuity of care | 647 | 0.97 | 698 | 285 (41) | 1 (0.1) | 0.09 (0.0, 0.55) |
Relationships | 680 | 0.97 | 698 | 252 (36) | 3 (0.4) | 0.27 (0.0, 1.07) |
Emotional health | 625 | 0.99 | 698 | 173 (25) | 1 (0.1) | 0.36 (0.03, 1.21) |