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Table 8 Matching INQoL Domains to EQ-5D

From: Improving the understanding of how patients with non-dystrophic myotonia are selected for myotonia treatment with mexiletine (NaMuscla): outcomes of treatment impact using a European Delphi panel

ED-5Q domain

INQoL domaina

CR1

% agreement among panel (% of responders)b

CR2

% agreement among panel (% of responders)c

Usual activities

The things you do – leisure and work activities

Yes

89% (100%)

NA

NA

Pain/discomfort

Your pain

Yes

89% (100%)

NA

NA

Anxiety/depression

How you feel/emotions

Yes

78% (87.5%)

NA

NA

Mobility

The locking of your muscles

No

44% (50%)

No

37.5% (43%)

Your muscle weakness

No

55% (62.5%)

No

50% (71%)

How tired you feel/fatigue

No

22% (25%)

NA

NA

Your independence

No

11% (12.5%)

NA

NA

The way you look/body image

No

11% (12.5%)

NA

NA

Self-care (washing and dressing)

The things you do – daily activities

No

44% (50%)

NA

NA

At the moment, does your muscle condition affect your ability to do the following activities: daily activities (for example, washing, dressing and housework)

NA

NA

Yes

75% (86%)

Your independence

No

44% (50%)

NA

NA

How important to you is the effect of your muscle condition on your level of independence

NA

NA

No

12.5% (14%)

The way you look/body image

No

11% (12.5%)

NA

NA

  1. The rows highlighted in bold indicate domains for which consensus was reached
  2. Key: CR1 Consensus Round 1, CR2 Consensus Round 2, INQoL Individualized Neuromuscular Quality of Life Questionnaire, NA Not applicable
  3. aExperts could map multiple domains of the INQoL to one domain of the EQ-5D, however, they could map each unique domain of the INQoL only once
  4. bEight of the nine invited experts completed round one of the Delphi; one expert dropped out
  5. cSeven of the eight invited experts completed round two of the Delphi; one expert dropped out