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Table 3 Survey participants’ perceptions about what information should be in a practice guideline and in what stages of guideline development they should participate

From: Understanding optimal approaches to patient and caregiver engagement in the development of cancer practice guidelines: a mixed methods study

Importance of Information in Practice Guidelines (n = 21)

Frequency

Development Stage

Is it important to include the following in a practice guideline report?

Yes

Maybe

No

 Topic selection

Information regarding how the practice guideline topic was selected

10 (50.0%)

7 (35.0%)

3 (15.0%)

 Guideline development group

Information about the doctors, nurses and researchers who were part of the practice guideline development group

10 (50.0%)

4 (20.0%)

6 (30.0%)

 Literature review

Information on the quality of the research that was reviewed and considered

17 (80.9%)

1 (4.8%)

3 (14.3%)

 Creating a draft document

Research that supports the various recommendation options considered in the draft practice guideline document

18 (85.7%)

0 (0.0%)

3 (14.3%)

Information about benefits and harms of the treatment options considered

20 (95.2%)

0 (0.0%)

1 (4.8%)

 Internal and external review

Information about who was involved in the review of the draft practice guideline document

11 (52.4%)

4 (19.0%)

6 (28.6%)

 Creating a final document

A summary of how the practice guideline development group made their decisions and reached their final recommendations

14 (66.7%)

5 (23.8%)

2 (9.5%)

Participation in Stages of Practice Guideline Development (n = 17)a

Frequency

Development Stage

Is it important for patients to participate in the following stages of practice guideline development?

Yes

Maybe

No

 Topic selection

The selection of the practice guideline topic

12 (70.6%)

4 (23.5%)

1 (5.9%)

 Literature review

The collection of research to inform the practice guideline topic

8 (47.1%)

6 (35.3%)

3 (17.6%)

 Creating a draft document

The development of a practice guideline draft document and its recommendations

7 (41.2%)

6 (35.3%)

4 (23.5%)

 Internal and external review

The review of a draft practice guideline document and its recommendations

10 (58.8%)

5 (29.4%)

2 (11.8%)

 Creating a final document

Making changes to a practice guideline draft document based on feedback from the expert review

13 (76.5%)

3 (17.6%)

1 (5.9%)

The creation of a patient/survivor/caregiver version of the final practice guideline document and its recommendations

16 (94.1%)

1 (5.9%)

0 (0.0%)

  1. aFour survey respondents indicated that they did not think it is important for patients/ survivors/ caregivers to participate in practice guideline development and therefore did not respond to the “Participation in the Various Stages of Practice Guideline Development” questions above