TABLE 1

Development of agreement over successive surveys

Survey#Survey 1#Agreement %Survey 2#Agreement %Survey 3#Agreement %
Respondents, n352731
Name of syndrome“chronic”67Chronic breathlessness26Chronic breathlessness77
“chronic” only needed15Chronic refractory breathlessness60Chronic refractory breathlessness23
“refractory”58Chronic persistent breathlessness14
“persistent”48
“intractable”3
“intolerable”3
Definition
 Chronicif using chronic or persistent, this should be individually assessed and not further defined80
1 month/3 month/from this point20
 Treatment of underlying  diseaseTreatment of underlying medical disease(s) is optimised63Treatment of underlying pathophysiology is optimised41Treatment of underlying pathophysiology is optimised32
The underlying medical disease(s) is receiving best possible treatment31The patient is receiving optimal evidence-based treatment for the underlying pathophysiology59Evidence-based treatment of underlying pathophysiology is optimised68
No preference6
 Negative consequences  of breathlessnessNone of the above# are needed for the definition55None needed37None needed for the definition23
Significant physical limitations33[breathlessness] contributing to physical limitations and/or a variety of adverse psychosocial, spiritual or other consequences59.3[breathlessness] contributing to physical limitations and/or a variety of adverse psychosocial, spiritual or other consequences77
Anxiety6[breathlessness] contributing to physical limitations3.7
Deconditioning3
  • Bold text indicates the questions reaching the pre-specified agreement threshold of 70%. #: see the survey in the supplementary material for details.