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Table 1 Steps taken to produce the patient-centred standards of care for adults with myositis

From: Patient-centred standards of care for adults with myositis

Step 1 - Initial information gathering from patients, relatives and caregivers
• Focus group at Myositis UK AGM, July 2014 (30 participants)
• Patient completed service evaluation questionnaire, March 2015
151 responses obtained
Step 2 - Statement drafting
• 15 draft statements reflecting optimum standards of care created by steering team.
• Each statement addressed perceived deficits in current care arrangements as identified by patients
Step 3 - Initial feedback
• Feedback on draft statements sought from:
Myositis UK AGM, July 2015 (75 participants)
Members of the UK Myositis Network (UKMYONET) (responses from 12 individuals received)
• Statements updated. One statement removed from process
Step 4 - Modified Delphi exercise - Round one
• 14 updated draft statements presented electronically to the Delphi panel (December 2015). Responses from 25 individuals received.
• Level of agreement and suggestions for improvement analysed:
Eight statements met predetermined consensus level (mean level of agreement ≥8.5)
Six statements failed to meet predetermined consensus level. These were updated based on 40 individual items of feedback
Step 5 - Modified Delphi exercise - Round two
• Updated statements (n = 6) re-presented to panel (April 2016)
• Three statements reached predetermined consensus level.
• Remaining three statements were removed from the process
Step 6 - Final production of the patient-centred Standard of Care
• Approved updated statements arranged into three themes (December 2016)
• Minor changes to grammar and readability of three statements
• Creation of suggested audit standards to accompany each statement
• Creation of plain language versions of each statement (January 2017)
  1. AGM = annual general meeting