Table 1 Steps taken to produce the 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)