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Table 2 Proportion of patients with NDM requiring resources in the UK

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

Health resourcea

Round 1 (n = 5, 1 drop-out)

Round 2 (n = 4, 1 drop-out)

BSC – Mean % of patients requiring resource (range)

Mexiletine – Mean % of patients requiring resource (range)

Difference (%)

BSC:mexiletine ratiob

% Agreement that HRU is on average lower for patients treated with mexiletine among panel (% agreement among responders)

Physiotherapy

39.0 (15–60)

23.0 (5–60)

−16.0

1.7

60% (75%)

Occupational therapist

15.0 (5–25)

6.0 (0–15)

−9.0

2.5

60% (75%)

Speech therapy

5.0 (0–15)

1.0 (0–5)

−4.0

5.0

40% (50%)

Day case attendances

60.0 (0–100)

60.0 (0–100)

0.0

0

NA

Wheelchair

4.2 (0–20)

4.2 (0–20)

0.0

0

NA

Walking stick

7.2 (0–30)

2.2 (0–10)

−5.0

3.3

60% (75%)

Walking frame

0.4 (0–2)

0.0 (0–0)

−0.4

0

60% (75%)

Hospital admission for fracture

3.0 (0–10)

1.0 (0–5)

−2.0

3.0

60% (75%)

Overall BSC:mexiletine (NaMuscla) ratio

1.9

60% (75%)

Mental health support

38 (20–60)

14 (5–20)

−24

2.7

83% (100%)

  1. Key: BSC Best supportive care (defined as any supportive care that symptomatic adult patients with NDM may receive that does not involve symptom-modifying pharmacological treatment; includes, for example, the use of supportive medication [e.g. pain killers], mobility aids, physiotherapy or speech therapy), HRU Healthcare resource utilization, NDM Non-dystrophic myotonia
  2. aThe rows in bold indicate resources for which there was consensus
  3. bThe ratio was calculated by dividing the mean proportion of patients receiving BSC that require a resource by the mean proportion of patients treated with mexiletine (NaMuscla) that require the resource