Table 2.
Summary of Delphi voting on outcomes stratified by domain
| Delphi round 1 | Delphi round 2 | |
|---|---|---|
| Survival | ||
| Survival | No consensus | No consensus: for discussion* |
| Physiological or clinical outcomes | ||
| Cardiovascular functioning, symptoms, and conditions | No consensus | Include |
| Endocrine and metabolic functioning, symptoms, and conditions | No consensus | No consensus: exclude† |
| Hearing-related functioning, symptoms, and conditions | No consensus | Exclude |
| Gastrointestinal functioning, symptoms, and conditions | No consensus | No consensus: exclude† |
| Fatigue or exhaustion | Include | Include |
| Pain | No consensus | Include |
| Sleep-related functioning, symptoms, and conditions | No consensus | No consensus: for discussion* |
| Nervous system functioning, symptoms, and conditions | No consensus | Include |
| Cognitive functioning, symptoms, and conditions | Include | Include |
| Mental functioning, symptoms, and conditions | Include | Include |
| Taste or smell-related functioning, symptoms, and conditions | No consensus | Exclude |
| Kidney and urinary-related functioning, symptoms, and conditions | No consensus | No consensus: exclude† |
| Reproductive and sexual functioning, symptoms, and conditions | Exclude | Exclude |
| Respiratory functioning, symptoms, and conditions | Include | Include |
| Skin, hair or nail-related functioning, symptoms, and conditions | Exclude | Exclude |
| Post-exertion symptoms | No consensus | Include |
| Eye symptoms and conditions | NA | No consensus: exclude† |
| Muscle and joint symptoms and conditions | NA | No consensus: for discussion* |
| Life impact outcomes | ||
| Physical functioning, symptoms, and conditions | No consensus | Include |
| Social role—functioning and relationship problems | Include | No consensus: for discussion‡ |
| Work or occupational and study changes | No consensus | Include |
| Stigma | No consensus | Exclude |
| Satisfaction with life or personal enjoyment | Exclude | No consensus: for discussion* |
| Resource use outcomes | ||
| Health-care resource use | No consensus | No consensus: for discussion* |
| Family or carer burden | No consensus | No consensus: for discussion‡ |
All outcomes from round 1 were included in round 2, regardless of ratings in round 1. NA=not applicable (outcomes were added after the first Delphi round).
*
Outcome was given an overall GRADE rating of 7–9 by at least one, but not all, stakeholder groups and was therefore prioritised for discussion at the consensus meeting.
†
Outcome did not reach the required threshold for inclusion in all three stakeholder groups and was therefore excluded.
‡
Outcome was given an overall rating of 7–9 by 65% or more participants in all three stakeholder groups and was therefore included for discussion at the consensus meeting.