Sarcoidosis and Work Participation: The Need to Develop a Disease-Specific Core Set for Assessment of Work Ability

Abstract

Objective Sarcoidosis, an inflammatory multi-organ disease with a wide variety of clinical manifestations, affecting people of working age. Patients suffer from a broad spectrum of physical symptoms of varying severity that impact function including cognitive impairment and disabling fatigue. The Dutch Sarcoidosis Society identified a knowledge gap in various facets related to work ability. The aim of this study was to assess sarcoidosis patients’ perceived problems related to work performance, employer, and disability evaluations. Methods A cross-sectional web-based anonymous survey was conducted among Dutch sarcoidosis patients recruited through sarcoidosis patient societies and outpatient sarcoidosis clinics. This investigation queried work performance, employer support, and disability evaluations. Results The study sample included 755 patients of whom 43% ( n = 328) had undergone disability evaluation and were significantly more likely to experience extrapulmonary symptoms, severe fatigue, reduced exercise capacity along with memory problems and concentration problems with higher mean FAS and SFNSL-scores. Of these 328, 37% ( n = 121) perceived they had not been listened to or taken seriously at assessments, and 38% ( n = 124) disagreed with the outcome of disability assessments by benefits authorities; 75% ( n = 93) appealed or requested re-assessment. Discussion A better understanding of sarcoidosis-related impact on work ability and quantification of disease burden is needed. Education for medical examiners and employers on sarcoidosis may improve quality of assessments and work accommodations. Development of guidelines for benefit authorities, which consider the broad impact of sarcoidosis beyond that of reduced pulmonary function, including extra-pulmonary assessment like fatigue, cognitive difficulties, as well as other organ involvement are needed.

Comprehensive Care for Patients with Sarcoidosis

“…In a recent survey with over 1000 respondents, 95% of patients reported sarcoidosis-related symptoms, and self-reported symptom burden of sarcoidosis was high [17]. Due to this high symptom burden, uncertain prospects, and sometimes social isolation and inability to work, sarcoidosis has a huge impact on lives of patients [3,13,18]. In a Dutch government survey, more than 60% of sarcoidosis patients (n = 150) considered their general health moderately to severely impaired.…”

“…Only 7% answered that their health problems had no influence on their social life [19]. Furthermore, almost 50% of patients in a recent study (n = 755) were partially or totally unable to work due to their sarcoidosis, highlighting the considerable impact of sarcoidosis on daily life [18]. A Swedish national registry evaluation of 3347 sarcoidosis patients aged 25-59 years, suggested 8% lower income and 26 lost work days in the year of diagnosis compared with age matched controls [20].…”

“…Several support measures to improve QoL for sarcoidosis patients have been suggested in the past years. Better information and education are vital to optimize care for sarcoidosis [13,18,27,45,46]. Even in the current internet era, patients state that they cannot find enough reliable information about their disease online [19,27] Moreover, the complexity and heterogeneity of sarcoidosis may complicate communication and knowledge transfer between healthcare providers and patients [13].…”

“…Nevertheless, a multidisciplinary team is needed to improve efficiency of care and outcomes for patients, as many organs can be affected and symptoms are wide-ranging [7,107]. While it is quite obvious that other medical specialists contribute their expertise in cases of extra pulmonary sarcoidosis, healthcare providers such as occupational health physicians, pain specialists or specialist nurses should not be forgotten [7,18] (Figure 2). Work participation is lower in patients with sarcoidosis; patients have more health-related sick days and a substantial income loss compared with the normal population [3,4,18,20].…”

Health-Related Quality of Life in Sarcoidosis

“…135,136 It has been translated into over 20 different languages [137][138][139] and is the most commonly used instrument for assessing fatigue in sarcoidosis. 34,35,44,45,50,67,79,81,83,84,88,[134][135][136]138,[140][141][142][143][144][145][146][147][148][149][150][151][152][153][154][155][156] Five questions address mental fatigue, and the other five address physical fatigue. Each question is rated on a five-point scale for a total score of 10 to 50 points (higher scores indicate worse fatigue).…”