Introduction
Methods
General methods
Participants
Template of health outcome descriptors
Development of draft health outcome descriptors
Refinement of health outcome descriptor content and structure
Online utility rating surveys
Data analysis
Results
Health outcome descriptors
ECIBC GDG interview feedback
Theme 1: health outcome descriptor development process
Theme 2: comprehensibility of health outcome descriptors
Other members suggested that the content should be at a lower reading level to facilitate use of health outcome descriptors by less educated members of the public:“The reading level should be increased. We cannot offend women.”
The panel was split regarding whether direct language and mention of negative health effects should be avoided to improve emotional sensitivity of the health outcome descriptors. There was mixed feedback about whether multiple versions of health outcome descriptors (e.g. for healthcare recipients, panel members, healthcare professionals, etc.) should be developed for a single guideline based upon the appropriateness of wording and emotional sensitivity for specific end-user populations.“If [health outcome descriptors] are to be used by the broad public I think they need re-wording for someone of a lower literacy level.”
Theme 3: data presentation
The health outcome descriptors were described as more representative when quantitative information was presented with only the minimum and maximum feasible data values, typically in the form of time periods and ranges.“Whether it be weeks, days or months; there can be a lot of variation [in timing of symptoms]. So, it seems a bit artificial to state a specific time”
Theme 4: health outcome descriptor structure & content
That GDG member recommended separating “Testing” and “Treatment” into two domains and explicitly stating when the domains are not relevant.“Most women that go for screening will not enter any kind of diagnostic efforts, let alone be treated. So, I find it very artificial to be reading up on health outcome descriptors that are directly related to the screening process, and then being pushed [to consider] the treatment area”
Theme 5: using health outcome descriptors
There was agreement among GDG members that if health outcome descriptors are used during panel discussion, panel chairs should refer to outcome definitions. Some of the GDG felt that if health outcome descriptors were to be used externally, attaching them to the recommendations or publishing them online was important for making them available to end-users.“I think [health outcome descriptors] have been very valuable to the [GDG] because it has made us discuss with you, and the rest of the [GDG], what we really mean.”
Theme 6: utility rating survey
After the first survey, it emerged that some participants were inappropriately making attribute-based comparisons (e.g. considering only physical or mental or emotional symptoms) or comparing the total number of implications described in each health outcome descriptor. The fact that a holistic strategy should be used to rate how the physical, emotional, and mental implications might affect overall health relative to the anchors was not sufficiently clear to participants Therefore, the instructions in the second survey were modified to better direct GDG members through the health utility rating process. Other comments from GDG members suggested that difficulties with the VAS may have manifested from problems with the initial outcome prioritization exercise carried out by the GDG:“The survey was problematic for me. I tried to complete it honestly but some of the [outcomes], did not lend themselves to the scale of dead and full health.”
“Some of [the outcomes] … why on earth are there health outcome descriptors for that? It becomes hard to rate if you don’t see [the outcome] as important”
Utility rating survey scores
Health outcome descriptor | 1st Survey mean score (SD) | 2nd Survey mean score (SD) | Levene’s F statistic | p-value |
---|---|---|---|---|
Accessibility to Information | 78 (18) | 88 (9) | 2.842 | 0.106 |
Awareness of Information | 73 (17) | 86 (14) | 4.474* | 0.045 |
Participation in Screening | 79 (15) | 84 (15) | 0.458 | 0.505 |
Informed Decision Making | 82 (16) | 89 (11) | 1.461 | 0.239 |
Satisfaction with Decision-Making | 80 (12) | 89 (12) | 3.271 | 0.084 |
Confidence with Decision-Making | 78 (18) | 88 (14) | 2.098 | 0.162 |
Abnormal Screening Result | 62 (24) | 78 (15) | 4.519* | 0.044 |
Recall for Assessment | 64 (27) | 74 (12) | 1.387 | 0.208 |
False Positive Screening Result | 68 (24) | 69 (17) | 0.032 | 0.861 |
Suspicious Indeterminate Calcification | 64 (21) | 68 (18) | 0.250 | 0.622 |
False Positive Biopsy Result | 67 (26) | 56 (19) | 1.387 | 0.252 |
Breast Cancer Detection | 60 (31) | 54 (19) | 0.327 | 0.573 |
Breast Cancer Stage | 60 (29) | 52 (8) | 0.783 | 0.386 |
Determination of Biomarker Status | 68 (20) | 66 (19) | 0.069 | 0.795 |
Interval Breast Cancer | 42 (28) | 40 (15) | 0.027 | 0.872 |
Over-Diagnosis & Over-Treatment | 54 (23) | 62 (18) | 0.887 | 0.357 |
False Negative Screening Result | 41 (29) | 43 (18) | 0.032 | 0.861 |
Radiation Exposure from Mammogram & Assessments Using Radiation | 69 (26) | 80 (19) | 1.281 | 0.270 |
Provision of Surgical Therapy | 62 (28) | 54 (15) | 0.743 | 0.395 |
Mastectomy | 49 (26) | 43 (16) | 0.428 | 0.520 |
Provision of Medical Therapy | 59 (28) | 47 (11) | 2.111 | 0.160 |
Provision of Radiotherapy | 57 (26) | 51 (13) | 0.533 | 0.473 |
Provision of Chemotherapy | 48 (25) | 44 (9) | 0.291 | 0.595 |
Other Cause Mortality | 10 (20) | 11 (22) | 0.028 | 0.869 |