Protocol - Unmet Needs of Cancer Survivors
Description
A 30-item short-form version of the Survivor Unmet Needs Survey (SF-SUNS) which assesses unmet needs across four domains relevant to cancer care: information needs (3 items); work and financial needs (8 items); access and continuity of care needs (6 items); and coping, sharing, and emotional needs (13 items).
Specific Instructions
The study subjects include patients who have been identified as someone who has been diagnosed with cancer. Patient self-reported concerns and the level of support required are measured using a Likert-type scale:
0 – no unmet need
1 – low unmet need
2 – moderate unmet need
3 – high unmet need
4 – very high unmet need
Each sub-scale score is generated by adding each item response, then dividing by the total number of items in that domain.
Availability
Protocol
We would like to know what unmet needs you have had IN THE LAST MONTH as a result of having cancer now or in the past. An unmet need is a need that you have not been able to satisfy.
For each question, place an X next to the number that best describes your level of unmet need IN THE LAST MONTH. Please answer each question, even if you feel there is no way to solve the problem or you do not have any unmet needs.
0 | No unmet need – This was not a problem for me as a result of having cancer now or in the past. |
1 | Low unmet need – I needed a small amount of help with this problem but was not able to get it. |
2 | Moderate unmet need – I needed a moderate amount of help with this problem but was not able to get it. |
3 | High unmet need – I needed a high amount of help with this problem but was not able to get it. |
4 | Very high unmet need – I needed a very high amount of help with this problem but was not able to get it. |
We know that your unmet needs may change over time. In this survey, we want to know only about the unmet needs you have had IN THE LAST MONTH.
Please go to the next page to begin the survey.
A. Unmet Information Needs: This part of the survey is about unmet needs that relate to finding information IN THE LAST MONTH.
No Unmet Need | Low Unmet Need | Moderate Unmet Need | High Unmet Need | Very High Unmet Need | |
For each statement, place an X after the choice that best describes your level of unmet. | |||||
1. Finding information about complementary or alternative therapies | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
2. Dealing with fears about cancer spreading | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
3. Dealing with worry about whether the treatment has worked | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
B. Unmet Work and Financial Needs: This part of the survey is about unmet needs you may have had about your job and finances IN THE LAST MONTH.
No Unmet Need | Low Unmet Need | Moderate Unmet Need | High Unmet Need | Very High Unmet Need | |
For each statement, place an X next to the choice that best describes your level of unmet. | |||||
4. Worry about earning money | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
5. Having to take a pensions or disability allowance | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
6. Paying household bills or other payments | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
7. Finding what type of financial assistance is available and how to obtain it | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
8. Finding car parking that I can afford at the hospital or clinic | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
9. Understanding what is covered by my medical insurance or benefits | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
10. Knowing how much time I would need away from work | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
11. Doing work around the house (cooking, cleaning, home repairs, etc.) | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
C. Unmet Needs for ACCESS and Continuity of Care: This part of the survey is about unmet needs that relate to medical care IN THE LAST MONTH.
No Unmet Need | Low Unmet Need | Moderate Unmet Need | High Unmet Need | Very High Unmet Need | |
For each statement, place and X next to the choice that best describes your level of unmet need. | |||||
12. Having access to cancer services close to my home | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
13. Getting appointments with specialists quickly enough (oncologist, surgeon, etc.) | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
14. Getting test results quickly enough | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
15. Having access to care from other health specialists (dieticians, physiotherapists, occupational therapists) | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
16. Making sure I had enough time to ask my doctor or nurse questions | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
17. Getting the health care team to attend promptly to my physical needs | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
D. Unmet Coping, Sharing and Emotional Needs: This part of the survey is about unmet needs that relate to your relationships with others and your emotional health IN THE LAST MONTH.
No Unmet Need | Low Unmet Need | Moderate Unmet Need | High Unmet Need | Very High Unmet Need | |
For each statement, place an X next to the choice that best describes your level of unmet need. | |||||
18. Telling others how I was feeling emotionally | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
19. Finding someone to talk to who understands and has been through a similar experience | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
20. Dealing with people who expect me to be “back to normal” | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
21. Dealing with people accepting that having cancer has changed me as a person | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
22. Dealing with reduced support from others when treatment has ended | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
23. Dealing with feeling depressed | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
24. Dealing with feeling tired | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
25. Dealing with feeling stressed | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
26. Dealing with feeling lonely | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
27. Dealing with not being able to feel ‘normal’ | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
28. Trying to stay positive | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
29. Coping with having a bad memory or lack of focus | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
30. Dealing with changes in how my body appears | [ ] 0 | [ ] 1 | [ ] 2 | [ ] 3 | [ ] 4 |
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| Major equipment | No |
| Specialized training | No |
| Specialized requirements for biospecimen collection | No |
| Average time of greater than 15 minutes in an unaffected individual | No |
Mode of Administration
Self-administered questionnaire
Lifestage
Adult, Senior
Participants
Cancer survivors, aged 18 years or over
Selection Rationale
The Survivor Unmet Needs Survey (SF- SUNS) is one of the only measures of unmet needs that was developed and evaluated using a population-based sample of cancer survivors.
Language
English
Standards
| Standard | Name | ID | Source |
|---|
Derived Variables
None
Process and Review
Not Applicable
Protocol Name from Source
Survivor Unmet Needs Survey (SF- SUNS)
Source
Campbell HS, Hall AE, Sanson-Fisher RW, Barker D, Turner D, Taylor-Brown J, et al. Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS). Support Care Cancer 2014: 22: 1071-9. doi: 10.1007/s00520-013-2061-7. Epub 2013 Nov 29. PMID: 24292016.
General References
Taylor K. Bulsara M, Monterosso L. Test-Retest Reliability of the Short Form Survivor Unmet Needs Survey. Asia Pac J Oncology Nurs 2018:5:165-71.
Taylor K, Chan RJ, Monterosso L, Models of survivorship care provisions in adult patients with haemotological cancer: An integrative literature review. Support Care Cancer 2015: 23: 1447-58.
Carey M, Anderson A, Sanson-Fisher R, Lynagh M, Paul C, Tzelepis F, et al. How well are we meeting haematological cancer survivors’ preferences for involvement in treatment decision making? Patient Educ Couns 2012; 88: 87-92.
1Tian L, Cao X, Feng X. Evaluation of psychometric properties of needs assessment tools in cancer patients: A systematic literature review. PLoS One. 2019 Jan 8;14(1):e0210242. doi: 10.1371/journal.pone.0210242. eCollection 2019. PubMed PMID: 30620770; PubMed Central PMCID: PMC6324833.
Hall A, D'Este C, Tzelepis F, Sanson-Fisher R, Lynagh M. The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties. BMC Health Serv Res. 2014 May 9;14:211. doi: 10.1186/1472-6963-14-211. PubMed PMID: 24886475; PubMed Central PMCID: PMC4026596.
Protocol ID
321201
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX321201_Unmet_Needs_Cancer_Survivors_Access_Services_Close_Home | ||||
| PX321201120000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Appointments_Specialists | ||||
| PX321201130000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Body_Appearance | ||||
| PX321201300000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Care_Access_Specialists | ||||
| PX321201150000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Car_Parking_Afford | ||||
| PX321201080000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Companion_Similar_Experience | ||||
| PX321201190000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Coping | ||||
| PX321201290000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Dealing_People_Change | ||||
| PX321201210000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Dealing_People_Normal | ||||
| PX321201200000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Dealing_Reduced_Support | ||||
| PX321201220000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Depressed | ||||
| PX321201230000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Doctor_Nurse_Questions | ||||
| PX321201160000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Fears_Spreading | ||||
| PX321201020000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Feel_Normal | ||||
| PX321201270000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Financial_Assistance | ||||
| PX321201070000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Health_Care_Team | ||||
| PX321201170000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Household_Bills | ||||
| PX321201060000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_House_Work | ||||
| PX321201110000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Information_Complementary_Alternative_Therapies | ||||
| PX321201010000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Insurance_Coverage | ||||
| PX321201090000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Lonely | ||||
| PX321201260000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Others_Emotion | ||||
| PX321201180000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Pension_Disability | ||||
| PX321201050000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Positive | ||||
| PX321201280000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Stressed | ||||
| PX321201250000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Test_Results | ||||
| PX321201140000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Tired | ||||
| PX321201240000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Treatment_Effect | ||||
| PX321201030000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Work_Disability | ||||
| PX321201100000 | This part of the survey is about unmet needs more | N/A | ||
| PX321201_Unmet_Needs_Cancer_Survivors_Worry_Earning_Money | ||||
| PX321201040000 | This part of the survey is about unmet needs more | N/A | ||
Measure Name
Unmet Needs of Cancer Survivors
Release Date
December 17, 2020
Definition
The Short-Form Survivor Unmet Needs Survey (SF- SUNS) is a self-reported questionnaire that assesses unmet needs across four domains relevant to cancer care: information needs; work and financial needs; access and continuity of care needs; and coping, sharing and emotional needs.
Purpose
Addressing needs of cancer survivors is central to the aims of achieving successful outcomes for patients such as quality of life and satisfaction.
Keywords
cancer, Patient satisfaction, satisfaction with cancer care, Cancer outcomes and survivorship, unmet needs, cancer survivor, Short-Form Survivor Unmet Needs Survey (SF-SUNS)
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 321201 | Unmet Needs of Cancer Survivors |
Publications
There are no publications listed for this protocol.