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Protocol - Supportive Care Needs - Cancer

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Description

The Supportive Care Needs Survey- Short Form (SCNS- SF34) is a 34 item, validated measure of cancer-specific perceived needs across five domains: psychological, health systems and information, physical and daily living, patient care and support, and sexuality. Patients rate their level of need for help in the past month, scale ranges from 1 (no need/not applicable) to 5 (high need). 

Specific Instructions

Response Scale: For each item, respondents are asked to indicate their level of need for help over the last month as a result of having cancer, using the following response options:

No need Some need
Not applicable Satisfied Low need Moderate need High need
1 2 3 4 5

The five response options are described as follows:

1 = No Need:

Not applicable

This was not a problem for me as a result of having cancer.

2 = No Need:

Satisfied

I did need help with this, but my need for help was satisfied at the time.

3 = Some Need:

Low need for help

This item caused me little concern or discomfort.

I had little need for additional help.

4 = Some Need:

Moderate need for help

This item caused me some concern or discomfort. I had some need for additional help.

5 = Some Need:

High need for help

This item caused me a lot of concern or discomfort.

I had a strong need for additional help.

Protocol

To help us plan better services for people diagnosed with cancer, we are interested in whether or not needs which you may have faced as a result of having cancer have been met. For every item on the following pages, indicate whether you have needed help with this issue within the last month as a result of having cancer. Put an x next to the number which best describes whether you have needed help with this in the last month. There are 5 possible answers to choose from:

NO NEED 1. Not applicable - This was not a problem for me as a result of not having cancer.
2. Satisfied - I did need help with this, but my need for help was satisfied at the time
SOME NEED 3. Low need - This item caused me concern or discomfort. I had little need for additional help
4. Moderate need - This item caused me concern or discomfort. I had some need for additional help.
5. High need - This item caused me concern or discomfort. I had a strong need for additional help.

For example

In the last month, What was your level of need for help with:

2. Being informed about things you can do to help yourself to get well

No need Some need
Not applicable Satisfied Low need Moderate need High need
 [ ] 1  [ ] 2  [ ] 3  [X] 4  [ ] 5

If you put the [x] where we have, it means you did not receive as much information as you wanted about things you could do to help yourself get well, and therefore needed some more information.

Now please complete the survey on the next 2 pages.

In the last month, which was your level of need for help with:

No need Some need
Not applicable Satisfied Low need Moderate need High need

1. Pain

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

2. Lack of energy/ tiredness

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

3. Feeling unwell a lot of the time

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

4. Work around the home

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

5. Not being able to do the things you used to do

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

6. Anxiety

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

7. Feeling down or depressed

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

8. Feelings of sadness

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

9. Fears about the cancer spreading

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

10. Worry that the results of treatment are beyond your control

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

11. Uncertainty about the future

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

12. Learning to feel in control of your situation

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

13. Keeping a positive attitude

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

14. Feelings about death and dying

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

15. Changes in sexual feelings

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

16. Changes in your sexual relationships

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

17. Concerns about the worries of those close to you

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

18. More choice about which cancer specialists you see

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

19. More choice about which hospital you attend

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

20. Reassurance by medical staff that the way you feel is normal

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

21. Hospital staff attending promptly to your physical needs

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

22. Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

23. Being given written information about the important aspects of care

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

24. Being given information (written, diagrams, drawings) about aspects of managing your illness and side-effects at home

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

25. Being given explanations of those tests for which you would like explanations

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

26. Being adequately informed about the benefits and side-effects of treatments before you choose to have them

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

27. Being informed about your test results as soon as feasible

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

28. Being informed about cancer which is under control or diminishing (that is, remission)

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

29. Being informed about things you can do to help yourself to get well

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

30. Having access to professional counseling (eg, psychologist, social worker, counsellor, nurse specialist) if you, family or friends need it

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

31. To be given information about sexual relationships

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

32. Being treated like a person not just another case

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

33. Being treated in a hospital or clinic that is as physically pleasant as possible

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

34. Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow-up

 [ ] 1  [ ] 2  [ ] 3  [ ] 4  [ ] 5

Thank you for completing this survey

Availability

Available

Personnel and Training Required

None

Equipment Needs

The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). The survey has been successfully adapted for electronic administration via touchscreen computer. Each item should be presented one at a time in exactly the same format as the pen-and-paper version to ensure the integrity of the data collected.

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

Participants

Adults diagnosed with cancer

Selection Rationale

The Supportive Care Needs Survey-short form (SCNS-SF34) is an instrument that assesses the perceived needs of people diagnosed with cancer across five domains.

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Cancer Outcome Supportive Care Needs Survey -Short Form 34 (SCNS-SF34) Assessment Text 7533702 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Supportive Care Needs Survey -Short Form 34 (SCNS-SF34)

Source

Boyes A. W., Girgis A., Lecathelinais L. C. (2009). Brief assessment of adult cancer patients' perceived needs: Development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). Journal of Evaluation in Clinical Practice, 15(4):602-606. doi: 10.1111/j.1365-2753.2008.01057.x.

General References

Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, the Supportive Care Review Group (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88:217–225

Boyes A, Girgis A, Lecathelinais C (2009) Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract 15:602–606

Boyes, A. W., Girgis, A., D'Este, C., & Zucca, A. C. (2012). Prevalence and correlates of cancer survivors' supportive care needs 6  months after diagnosis: a population-based cross-sectional study. BMC cancer, 12, 150.

Carey M, Lambert S, Smits R, Paul C, Sanson-Fisher R, Clinton-McHarg T (2012) The unfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients. Support Care Cancer 20:207–219

Richardson A, Medina J, Brown V, Sitzia J (2007) Patients’ needs assessment in cancer care: a review of assessment tools. Support Care Cancer 15:1125–1144

Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, et al (the Supportive Care Review Group). The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer 2000; 88:226-37

Schofield, P., Gough, K., Lotfi-Jam, K. and Aranda, S. (2012), Validation of the Supportive Care Needs Survey—short form 34 with a simplified response format in men with prostate cancer. Psycho-Oncology, 21: 1107–1112.

Smith AB, King M, Butow P, et al. The prevalence and correlates of supportive care needs in testicular cancer survivors: a cross-sectional study. Psychooncology. 2013;22(11):2557–2564. doi:10.1002/pon.3323

Protocol ID

321101

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Access_Professional_Counseling
PX321101300000 In the last month, which was your level of more
need for help with: Having access to professional counseling (eg, psychologist, social worker, counsellor, nurse specialist) if you, family or friends need it show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Anxiety
PX321101060000 In the last month, which was your level of more
need for help with: Anxiety show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Choice_Hospital
PX321101190000 In the last month, which was your level of more
need for help with: More choice about which hospital you attend show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Choice_Specialists
PX321101180000 In the last month, which was your level of more
need for help with: More choice about which cancer specialists you see show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Depressed
PX321101070000 In the last month, which was your level of more
need for help with: Feeling down or depressed show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Energy
PX321101020000 In the last month, which was your level of more
need for help with: Lack of energy/ tiredness show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Explanations_Tests
PX321101250000 In the last month, which was your level of more
need for help with: Being given explanations of those tests for which you would like explanations show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Fear_Cancer_Spreading
PX321101090000 In the last month, which was your level of more
need for help with: Fears about the cancer spreading show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Feelings_Death_Dying
PX321101140000 In the last month, which was your level of more
need for help with: Feelings about death and dying show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Feel_Control
PX321101120000 In the last month, which was your level of more
need for help with: Learning to feel in control of your situation show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Feel_Unwell
PX321101030000 In the last month, which was your level of more
need for help with: Feeling unwell a lot of the time show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Future_Uncertainty
PX321101110000 In the last month, which was your level of more
need for help with: Uncertainty about the future show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Hospital_Staff_Confide
PX321101340000 In the last month, which was your level of more
need for help with: Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow-up show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Hospital_Staff_Physical_Needs
PX321101210000 In the last month, which was your level of more
need for help with: Hospital staff attending promptly to your physical needs show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Hospital_Staff_Sensitivity
PX321101220000 In the last month, which was your level of more
need for help with: Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Information_Managing_Illness
PX321101240000 In the last month, which was your level of more
need for help with: Being given information (written, diagrams, drawings) about aspects of managing your illness and side-effects at home show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Information_Sexual_Relationships
PX321101310000 In the last month, which was your level of more
need for help with: To be given information about sexual relationships show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Informed_Benefits_Side_Effects_Treatments
PX321101260000 In the last month, which was your level of more
need for help with: Being adequately informed about the benefits and side-effects of treatments before you choose to have them show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Informed_Cancer_Under_Control
PX321101280000 In the last month, which was your level of more
need for help with: Being informed about cancer which is under control or diminishing (that is, remission) show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Informed_Help_Yourself
PX321101290000 In the last month, which was your level of more
need for help with: Being informed about things you can do to help yourself to get well show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Informed_Test_Results
PX321101270000 In the last month, which was your level of more
need for help with: Being informed about your test results as soon as feasible show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Pain
PX321101010000 In the last month, which was your level of more
need for help with: Pain show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Positive_Attitude
PX321101130000 In the last month, which was your level of more
need for help with: Keeping a positive attitude show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Reassurance_Medical_Staff
PX321101200000 In the last month, which was your level of more
need for help with: Reassurance by medical staff that the way you feel is normal show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Sadness
PX321101080000 In the last month, which was your level of more
need for help with: Feelings of sadness show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Sexual_Feelings
PX321101150000 In the last month, which was your level of more
need for help with: Changes in sexual feelings show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Sexual_Relationships
PX321101160000 In the last month, which was your level of more
need for help with: Changes in your sexual relationships show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Treated_Hospital_Clinic
PX321101330000 In the last month, which was your level of more
need for help with: Being treated in a hospital or clinic that is as physically pleasant as possible show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Treated_Like_Person
PX321101320000 In the last month, which was your level of more
need for help with: Being treated like a person not just another case show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Treatment_Effect
PX321101100000 In the last month, which was your level of more
need for help with: Worry that the results of treatment are beyond your control show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Unable_Do_Things
PX321101050000 In the last month, which was your level of more
need for help with: Not being able to do the things you used to do show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Work_Around_Home
PX321101040000 In the last month, which was your level of more
need for help with: Work around the home show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Worries_Close_Persons
PX321101170000 In the last month, which was your level of more
need for help with: Concerns about the worries of those close to you show less
N/A
PX321101_Supportive_Care_Needs_Cancer_Last_Month_Written_Information
PX321101230000 In the last month, which was your level of more
need for help with: Being given written information about the important aspects of care show less
N/A
Cancer Outcomes and Survivorship
Measure Name

Supportive Care Needs - Cancer

Release Date

December 17, 2020

Definition

The Supportive Care Needs Survey Short Form (SCNS-SF34) is a 34-item questionnaire used to measure the perceived support needs of adult cancer patients across five domains: psychological, health system and information, physical and daily living, patient care and support, and sexuality.

Purpose

Survey to provide a direct and comprehensive assessment of the multidimensional perceived needs of patients with cancer. Modules are currently available for breast cancer, melanoma, prostate cancer, colostomy, and access to health care and ancillary support services.

Keywords

Supportive care needs, unmet needs, supportive care, cancer patients, needs assessment, psychological wellbeing, cancer survivorship, survivorship, patient care and support, psychological needs, physical and daily activity, questionnaires, validity

Measure Protocols
Protocol ID Protocol Name
321101 Supportive Care Needs - Cancer
Publications

There are no publications listed for this protocol.