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? | |