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Protocol - Unmet Needs of Cancer Survivors

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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.

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

Availability

Available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
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
StandardNameIDSource
caDSR Common Data Elements (CDE) Cancer Outcome Survivor Unmet Needs Survey (SF- SUNS) Assessment Text 7533707 CDE Browser
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.

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 IDVariable DescriptiondbGaP Mapping
PX321201_Unmet_Needs_Cancer_Survivors_Access_Services_Close_Home
PX321201120000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Having access to cancer services close to my home show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Appointments_Specialists
PX321201130000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Getting appointments with specialists quickly enough (oncologist, surgeon, etc.) show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Body_Appearance
PX321201300000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with changes in how my body appears show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Care_Access_Specialists
PX321201150000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Having access to care from other health specialists (dieticians, physiotherapists, occupational therapists) show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Car_Parking_Afford
PX321201080000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Finding car parking that I can afford at the hospital or clinic show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Companion_Similar_Experience
PX321201190000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Finding someone to talk to who understands and has been through a similar experience show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Coping
PX321201290000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Coping with having a bad memory or lack of focus show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Dealing_People_Change
PX321201210000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with people accepting that having cancer has changed me as a person show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Dealing_People_Normal
PX321201200000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with people who expect me to be show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Dealing_Reduced_Support
PX321201220000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with reduced support from others when treatment has ended show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Depressed
PX321201230000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with feeling depressed show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Doctor_Nurse_Questions
PX321201160000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Making sure I had enough time to ask my doctor or nurse questions show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Fears_Spreading
PX321201020000 This part of the survey is about unmet needs more
that relate to finding information IN THE LAST MONTH. Dealing with fears about cancer spreading show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Feel_Normal
PX321201270000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with not being able to feel show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Financial_Assistance
PX321201070000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Finding what type of financial assistance is available and how to obtain it show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Health_Care_Team
PX321201170000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Getting the health care team to attend promptly to my physical needs show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Household_Bills
PX321201060000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Paying household bills or other payments show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_House_Work
PX321201110000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Doing work around the house (cooking, cleaning, home repairs, etc.) show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Information_Complementary_Alternative_Therapies
PX321201010000 This part of the survey is about unmet needs more
that relate to finding information IN THE LAST MONTH. Finding information about complementary or alternative therapies show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Insurance_Coverage
PX321201090000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Understanding what is covered by my medical insurance or benefits show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Lonely
PX321201260000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with feeling lonely show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Others_Emotion
PX321201180000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. This part of the survey is about unmet needs that relate to your relationships with others and your emotional heal show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Pension_Disability
PX321201050000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Having to take a pensions or disability allowance show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Positive
PX321201280000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Trying to stay positive show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Stressed
PX321201250000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with feeling stressed show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Test_Results
PX321201140000 This part of the survey is about unmet needs more
that relate to medical care IN THE LAST MONTH. Getting test results quickly enough show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Tired
PX321201240000 This part of the survey is about unmet needs more
that relate to your relationships with others and your emotional health IN THE LAST MONTH. Dealing with feeling tired show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Treatment_Effect
PX321201030000 This part of the survey is about unmet needs more
that relate to finding information IN THE LAST MONTH. Dealing with worry about whether the treatment has worked show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Work_Disability
PX321201100000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Knowing how much time I would need away from work show less
N/A
PX321201_Unmet_Needs_Cancer_Survivors_Worry_Earning_Money
PX321201040000 This part of the survey is about unmet needs more
you may have had about your job and finances IN THE LAST MONTH. Worry about earning money show less
N/A
Cancer Outcomes and Survivorship
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.