Chinoy, Hector

Dixon, William G.

Oldroyd, Alexander G. S.

Steen Krogh, Niels

Verstappen, Suzanne M. M.

Williams, Jacob

English

The University of Manchester - Institutional Repository

Remotely collected patient-reported data characterises the impact of idiopathic inflammatory myopathy flares upon work productivityAuthorsJacob WilliamsPost Graduate Department, Manchester Royal Infirmary, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UKSuzanne M.M. VerstappenCentre for Epidemiology Versus Arthritis, University of Manchester, Manchester, UKNiels Steen KroghZiteLab, Copenhagen, DenmarkWilliam G. DixonCentre for Epidemiology Versus Arthritis, University of Manchester, Manchester, UKDepartment of Rheumatology, Salford Royal Hospital, Northern Care Alliance, Manchester Academic Health Science Center, Salford, UKNational Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK Hector ChinoyCentre for Musculoskeletal Research, University of Manchester, Manchester Academic Health Science Centre, Manchester, UKDepartment of Rheumatology, Salford Royal Hospital, Northern Care Alliance, Manchester Academic Health Science Center, Salford, UKNational Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK Alexander G.S. OldroydCentre for Musculoskeletal Research, University of Manchester, Manchester Academic Health Science Centre, Manchester, UKNational Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK Keywords:MyositisPatient experienceObservational studiesQuality of lifeEpidemiologyMuscleDear Editor,Key message – Idiopathic inflammatory myopathy flares adversely impact work productivity.Idiopathic inflammatory myopathy (IIM) is characterised by chronic auto-immune mediated inflammation of skeletal muscle (myositis)[1]. Active myositis can result in weakness and functional impairment[1,2]. Fluctuations in disease activity due to “flares” are commonly reported by patients[3]. A small number of studies have investigated work productivity in IIM populations, all illustrating the detrimental impact of IIM[4-6]. Christopher-Stine et al. reported that a higher frequency of patient-reported IIM flares, retrospectively reported over the previous year, was associated with increased absenteeism and presenteeism in 215 adults with IIM[6]. Prospective collection of patient-generated health data using consumer devices has the potential to provide a clearer picture of how flares in IIM impact patients’ ability to work, via frequent and contemporaneous data collection. The MyoPAD Study recruited adults with IIM via the specialist neuromuscular clinic at Salford Royal Hospital, UK. Data collection began in August 2019 and was completed by February 2020. Participants were invited to complete daily, weekly and monthly questions via a smartphone-based app throughout the 91-day (13-week) study period. The weekly question set included dichotomous questions on IIM flare, work productivity, and work hours missed in the previous seven days; only responses to the weekly question set were included in this analysis. Primary work productivity outcomes were generated from the Work Productivity and Activity Impairment Specific Health Problem Questionnaire (WPAI-SHP) responses and included: 1) “absenteeism” - work time missed due to IIM,2) “presenteeism” - impairment while working due to IIM (expressed as a percentage with higher values representing higher degree of impairment) [7].Absenteeism and presenteeism were quantified for each participant in each study week across the cohort. An “IIM flare week” was defined according to each participant’s response to the presence (yes/no) of a flare during the week (“Have you experienced a flare of myositis in the last seven days?”). Weeks were only included in analysis if complete participant data was collected: total hours worked, total hours missed due to IIM, work impairment, and IIM flare occurrence.Twenty-one adult participants were included in the MyoPAD study, with thirteen reporting employment during the study period. The analysed cohort of thirteen participants (9, 69% female) had a median age of 45 years (IQR 38, 53) and a median IIM disease duration of four years (IQR 2, 6; range 1-26 years). The cohort consisted of six (46%) participants with dermatomyositis, three (23%) with polymyositis, two (15%) with immune-mediated necrotising myopathy, one (8%) with antisynthetase syndrome and one (8%) with juvenille-onset dermatomyositis. IIM flare and employment data was submitted on a total of 143 study weeks (85% of a potential total of 169 weeks – 13 weeks for the 13 participants).Participants reported that IIM flares occurred during 55 (38%) of the 143 total study weeks. Thirty-seven (26%) out of 143 study weeks were associated with at least 1 hour of work lost to IIM (absenteeism) (median per participant 21 hours per week, IQR 6, 60, range 1-60). Out of these 37 weeks, 28 (76%) coincided with a patient-reported IIM flare week; in contrast, only 9 (24%) coincided with a non-flare week.One hundred and forty one (99%) out of 143 study weeks were associated with a degree of impairment while working due to IIM (presenteeism). A median 22% (IQR 13, 41) impairment while working due to IIM per participant was reported across these study weeks. Median degree of work impairment was 33% (IQR 25, 86) during the 55 flare weeks, compared to 16% (IQR 5, 23) during the 88 non-flare weeks. Our results are summarised in Table 1.Patient-reported IIM flares occurred alongside work absenteeism and reduced work productivity. Work productivity impairment exists across the cohort, regardless of IIM flare status. Employers should aim to support their employees with IIM, with interventions tailored to the patient's key symptoms and the type of work they perform, for example, risk assessments around their current work or reducing work hours or manual tasks. These interventions should address both the motor and non-motor symptoms associated with IIM, such as fatigue and stress. Both occupational health and occupational therapist input could be used to address these barriers. Adequate medical therapy and disease control are paramount to minimising disease flares which may be associated with more time away from work.The analysis was performed with a small cohort of self-selecting participants; larger-scale prospective studies looking at work outcomes in IIM should be performed which could include further investigation to find other factors beyond disease flares which may affect presenteeism in IIM.Table 1 – Number of weeks with ≥1 hour work lost (absenteeism) and median degree of work impairment (presenteeism) according to participant-reported flare and non-flare status	Total	Flare week	Non-flare weekNumber (%)	143	55 (38)	88 (62)No. weeks with ≥1 hour work lost (%)	37 (26)	28 (51*)	9 (10†)Median degree of work impairment / % (IQR)	22% (13, 41)	33% (25, 86)	16% (5, 23)IQR = inter-quartile range* Percentage of flare weeks† Percentage of non-flare weeksAcknowledgementsThis research was funded by the NIHR Manchester Biomedical Research Centre (NIHR203308). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. This work was supported by funding from Versus Arthritis (Award Number: 21993 to A.O.).ReferencesOldroyd A, Lilleker J, Chinoy H. Idiopathic inflammatory myopathies - a guide to subtypes, diagnostic approach and treatment. Vol. 17, Clinical Medicine, Journal of the Royal College of Physicians of London. Royal College of Physicians; 2017. p. 322–8. Harris-Love MO, Shrader JA, Koziol D, Pahlajani N, Jain M, Smith M, Cintas HL, McGarvey CL, James-Newton L, Pokrovnichka A, Moini B, Cabalar I, Lovell DJ, Wesley R, Plotz PH, Miller FW, Hicks JE, Rider LG. Distribution and severity of weakness among patients with polymyositis, dermatomyositis and juvenile dermatomyositis. Rheumatology (Oxford) [Internet]. 2009 Feb;48(2):134–9. Oldroyd A, Dixon W, Chinoy H, Howells K. Patient insights on living with idiopathic inflammatory myopathy and the limitations of disease activity measurement methods – a qualitative study. BMC Rheumatol [Internet]. 2020 Dec 21;4(1):47. Regardt M, Welin Henriksson E, Sandqvist J, Lundberg IE, Schult ML. Work ability in patients with polymyositis and dermatomyositis: An explorative and descriptive study. Work [Internet]. 2016 Feb 18; 53(2):265–77. Cordeiro RA, Fischer FM, Shinjo SK. Work situation, work ability and expectation of returning to work in patients with systemic autoimmune myopathies. Rheumatology [Internet]. 2022 Jul 22;Christopher-Stine L, Wan GJ, Kelly W, McGowan M, Bostic R, Reed ML. Patient-reported dermatomyositis and polymyositis flare symptoms are associated with disability, productivity loss, and health care resource use. J Manag Care Spec Pharm [Internet]. 2020 Nov;26(11):1424–33. Reilly Associates WPAI scoring [Internet]; c2002, cited Aug 2023, Available from: http://www.reillyassociates.net/WPAI_Scoring.html

Remotely collected patient-reported data characterises the impact of idiopathic inflammatory myopathy flares upon work productivity

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Remotely collected patient-reported data characterises the impact of idiopathic inflammatory myopathy flares upon work productivity

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