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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

Life Stage

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
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