Patient insights on living with idiopathic inflammatory myopathy and the limitations of disease activity measurement methods – a qualitative study

Abstract

Background The idiopathic inflammatory myopathies (IIMs) are chronic autoimmune conditions, typically resulting in proximal muscle weakness and impacting upon quality of life. Accurate measurement of IIM disease activity is imperative for appropriate medical management and carrying out valid clinical trials. The International Myositis Assessment and Clinical Studies Group (IMACS) “Disease Activity Core Set Measures” are the current gold-standard of IIM disease activity assessment. Anecdotally, patients with an IIM report that the IMACS Core Set Measures and other available methods do not necessarily capture their perceived disease activity. Investigating the patient experiences of living with an IIM and their views on the accuracy of the IMACS Core Set Measures will provide valuable insights for both clinical and research purposes. Methods Eighteen interviews with patients with an IIM were carried out and analysed thematically, using a grounded theory approach. Experiences on living with an IIM and perceptions on the accuracy of disease activity measurement methods were explored. Results Interview analysis revealed four themes: 1) fatigue, 2) pain, 3) day-to-day symptom variation, 4) limitations of creatine kinase levels and manual muscle testing. Conclusions This study has provided valuable insights into patient experiences of living with an IIM. Aspects of IIM disease activity perceived not to be wholly measured by the IMACS Core Set Measures have also been identified. These findings have implications for future IIM clinical care and research, in particular providing justification for research into pain, fatigue and symptom variation.

Diagnostic delay of myositis: an integrated systematic review

“…All forms of myositis significantly impact the quality of life of those who are diagnosed, as they present with a broad range of debilitating symptoms requiring ongoing medical treatment. People with myositis report pain, fatigue, and day-to-day fluctuation of symptoms as being the most impactful symptoms [ 47 – 49 ]. Research examining people’s experiences with multiple sclerosis has found that delays in diagnosis may create a sense of uncertainty and, in many cases, a worsening of symptoms, leaving people in a state of ‘not knowing’ [ 50 ].…”

Fatigue as a common signature of inflammatory myopathies: clinical aspects and care.

“…Shorter activities, such as dressing, are usually more tolerated. It is not uncommon that patients cope with fatigue by tailoring their tasks to reduce the duration of exertion, limiting travel and planning rest periods after demanding activities (7).…”

“…Despite being a common symptom in myositis, fatigue is not routinely assessed during medical examinations, probably due to a poor awareness of it from both patients and clinicians (7). This is also a reason why there is paucity of validated, IMMs-specific scales to measure fatigue, although different methods and scales have been proposed.…”

“…Fatigue, in particular, is one of the main causes of significantly decreased quality of life (QoL). In a cohort of 95 patients with DM and PM, 89% of subjects reported fatigue and about a third considered fa-tigue the symptom that most impacted their QoL (6), interfering especially with those activities of daily life (ADL) that require sustained shoulder abduction (7). Despite the high frequency of this complaint in myositis, several aspects on this clinical characteristic are rather poorly defined and need to be better profiled.…”

Investigating characteristics of idiopathic inflammatory myopathy flares using daily symptom data collected via a smartphone app

“…Qualitative research indicates IIM flares are characterized by brief (i.e. 2–3-day) acute increases in symptom severity, including myalgia, weakness, and fatigue, compared with a baseline over recent days [ 12 ]. Daily patient-reported symptom data could potentially allow objective identification of such symptom-based flares using an a priori definition, similar to that of Parry et al in OA [ 3 ].…”