Skip to main content

Table 2 Final patient-centred standards of care for adults with myositis and accompanying plain language versions of the standards

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

Patient-centred standards of care Plain language version of standards
Domain 1: Presentation, referral and diagnosis
  Myositis should be considered in patients with unexplained weakness, fatigue, rash, myalgia or arthralgia
• Testing of serum CK is a useful screening tool, but can be normal in some scenarios
9.1 When I first developed symptoms of myositis, was the correct diagnosis considered early?
  GPs should identify patients presenting with features of myositis (e.g. muscle weakness, raised CK +/− rash) and refer to a specialist as soon as this diagnosis is considered 8.8 Was I referred to an appropriate specialist quickly?
Domain 2: Care arrangements and the interaction between myositis specialists and other healthcare professionals
  Patients with myositis should be under the care of a specialist with specific expertise and experience in managing myositis
• This could be either directly or as part of a formal shared-care agreement with a local physician
9.5 Am I under the care of a specialist (either directly or under shared-care) who is experienced and competent in the management of patients with myositis?
  Patients with myositis should continue to be periodically reviewed by a myositis specialist for as long their disease is active or muscle strength continues to deteriorate
• This could be either directly or as part of a formal shared-care agreement with a local physician
9.1 Do I see my specialist with sufficient frequency to meet my needs?
  The services for patients with myositis should include access to ongoing specialist physiotherapy, occupational therapy and speech and language therapy
• This could be integrated in to the specialist clinic or via a formal shared-care agreement between specialist and non-specialist (local) therapists
9.2 Do I have adequate support from other health professionals (including physiotherapists, occupational therapists and speech and language therapists) that have experience in managing patients with myositis?
  There should be clear protocols defining how patients with myositis should seek urgent advice.
• For example, the specialist centre might provide a dedicated telephone advice line for patients and other healthcare professionals
8.9 Should the need arise, am I able to obtain appropriate urgent medical advice regarding my myositis or its treatment?
Domain 3: Disease management and holistic care
  When considering starting patients with myositis on immunosuppression, detailed discussion regarding the potential benefits and possible side effects must take place.
• This could be reinforced by other members of the multidisciplinary team (e.g. pharmacist)
• Formal shared-care agreements with GPs should also be in place
8.8 Before I am offered treatments for my myositis, do I understand the relevant benefits and potential risks?
  Healthcare professionals should specifically address extra-muscular symptoms such as pain, fatigue and depression at each consultation 8.7 Are issues such as pain, fatigue or low mood addressed in addition to my muscle weakness during consultations with my specialist?
  Services for patients with myositis should provide holistic care that addresses physical and psychological aspects of disease and its social implications
• For example, this may include difficulties with employment
8.7 If required, do I have access to support with how myositis affects my day-to-day life (for example, the effect on my job)?
  Patients with myositis should be signposted to appropriate information resources and patient groups 9.3 Have I been made aware of relevant myositis information resources and patient groups?
  Patients with myositis should be offered participation in clinical trials as part of routine practice 8.8 Have I been offered participation in clinical trials for myositis?
  1. Mean level of agreement is shown adjacent to each standard of care and is derived from responses on a ten point Likert scale. GPs = general practitioners