Benefit of wearing an activity tracker in sarcoidosis

Sarcoidosis causes many disabling symptoms, including fatigue and exercise limitations, which have been shown to improve by physical activity programs. The aim of this study was to estimate the effect of continuous activity monitoring using an electronic activity tracker (AT) on exercise performance and fatigue of sarcoidosis patients, compared to controls (cohort study), and the effect of additional personal coaching (randomized trial) over a period of 3 months. Fifty-four sarcoidosis patients received an AT (Group Ia: 27 with coaching and Group Ib: 27 without). A historical group of sarcoidosis patients (Group II;n= 41) who did not follow a physical activity program served as controls. Exercise performance of patients wearing an AT (Group I) improved compared with controls (Group II), including the 6MWD, % predicted ( increment 4.4 +/- 9.1 versus increment 0.7 +/- 5.0, respectively), and fatigue levels decreased ( increment -3.9 +/- 5.7 versus increment -1.8 +/- 5.3). Patients with coaching (Group Ia) showed greater improvement of exercise capacity over time than patients without coaching (Group Ib) as shown by the Steep Ramp Test results (watts: increment 20.2 +/- 33.8 versus increment 5.7 +/- 26.4; and SRT, VO(2)max, % predicted: increment 1.6 +/- 2.6 versus increment 0.7 +/- 2.3). Sarcoidosis patients wearing an AT achieved improvement of exercise performance and reduction of fatigue. We therefore recommend encouraging sarcoidosis patients to wear an AT to stimulate physical activity and reduce fatigue. The additional benefit of coaching needs to be explored in future studies

Predictors of fatigue in sarcoidosis: The value of exercise testing

Background Sarcoidosis patients often are troubled by dyspnea, exercise limitation, and fatigue. Many patients (up to 50–81%) suffer from sarcoidosis-associated fatigue. The etiology of fatigue in sarcoidosis is still unclear. Objective The aim of this study was to assess the relationship between fatigue and both exercise capacity and clinical characteristics in sarcoidosis patients. Additionally, we studied the predictive value of exercise test results and other relevant clinical characteristics for the independent variable of fatigue. Methods From November 2012 to September 2014, 201 sarcoidosis outpatients were referred to the Dutch ILD care foundation expertise team, 146 of whom were included in this retrospective cohort study. All patients completed the Fatigue Assessment Scale (FAS). Exercise capacity was assessed by the 6-min walking distance (6MWD) and steep ramp test (SRT) result. Clinical data were gathered from the medical records. Results Exercise capacity only showed a weak correlation with fatigue (r = 0.25, p = 0.002 for 6MWD % of predicted; r = 0.24, p = 0.003 for SRT). Fatigue was not correlated with the demographic variables of age, body mass index, or time since diagnosis. Inflammatory markers, lung function tests, and hand grip strength showed no significant correlations with fatigue. Backward multiple regression analysis showed that only female sex (t = −2,614, p = 0.01) and 6MWD % of predicted (t = −2.773, p = 0.006) were independent predictors of fatigue. However, the r2 indicated that these two variables together explained only 11% of the FAS score. Conclusions These results show that exercise capacity partly predicts patients’ fatigue scores. Fatigue was not explained by lung function test results, inflammatory markers, or other clinical parameters. Keywords: Exercise capacity, Fatigue, Sarcoidosi

Physical activity and training in sarcoidosis: Review and experience-based recommendations

Introduction: Sarcoidosis is a multisystemic inflammatory disorder with a great variety of symptoms, including fatigue, dyspnea, pain, reduced exercise tolerance and muscle strength. Physical training has the potential to improve exercise capacity and muscle strength, and reduce fatigue. The aim of this review and survey was to present information about the role of physical training in sarcoidosis and offer practical guidelines. Areas covered: A systematic literature review guided an international consensus effort among sarcoidosis experts to establish practice-basic recommendations for the implementation of exercise as treatment for patients with various manifestations of sarcoidosis. International sarcoidosis experts suggested considering physical training in symptomatic patients with sarcoidosis. Expert commentary: There is promising evidence of a positive effect of physical training. Recommendations were based on available data and expert consensus. However, the heterogeneity of these patients will require modification and program adjustment of the standard rehabilitation format for e.g. COPD or interstitial lung diseases. An optimal training program (types of exercise, intensities, frequency, duration) still needs to be defined to optimize training adjustments, especially reduction of fatigue. Further randomized controlled trials are needed to consolidate these findings and optimize the comprehensive care of sarcoidosis patients. Kyewords: Dyspnea, endurance, fatigue, muscle strength, physical training, pulmonary rehabilitation, sarcoidosis, recommendations, quality of lif

Validation of the King's Sarcoidosis Questionnaire (KSQ) in a Dutch sarcoidosis population

Background  The King's Sarcoidosis Questionnaire (KSQ) is a brief questionnaire assessing health status using five modules (General Health Status, Lung, Eyes, Skin, Medication) in patients with sarcoidosis. The KSQ was only validated in one English sarcoidosis cohort.Objective The aim of this study was to validate the KSQ in a Dutch sarcoidosis population. Methods The KSQ was translated according to international guidelines and tested in interviews with patients. Consecutive outpatients completed multiple questionnaires twice, two weeks apart. Construct validity, internal consistency and repeatability were determined. Results  Of the 98 patients included 85 had lung, 22 skin and 24 eye disease. There was good construct validity of the KSQ General Health Status module against the World Health Organization Quality of Life-BREF questionnaire. The Medication module correlated weak to moderate with most questionnaires. The correlations with organ-specific questionnaires varied from strong for Eyes (r=0.75), Skin (r=-0.62) to moderate for Lung (r=-0.45 with MRC breathlessness scale). Internal consistency was good for all KSQ modules (Cronbach's α 0.72-0.93). Intraclass correlation coefficients (0.70-0.90) and Bland-Altman plots showed good repeatability of the KSQ. Conclusion The Dutch KSQ is the first translation of the English KSQ, validated in a Dutch sarcoidosis population

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes.

Health-related quality of life (HRQoL), though rarely considered as a primary endpoint in clinical trials, may be the single outcome reflective of patient priorities when living with a health condition. HRQoL is a multi-dimensional concept that reflects the degree to which a health condition interferes with participation in and fulfillment of important life areas. HRQoL is intended to capture the composite degree of physical, physiologic, psychological, and social impairment resulting from symptom burden, patient-perceived disease severity, and treatment side effects. Diminished HRQoL expectedly correlates to worsening disability and death; but interventions addressing HRQoL are linked to increased survival. Sarcoidosis, being a multi-organ system disease, is associated with a diffuse array of manifestations resulting in multiple symptoms, complications, and medication-related side effects that are linked to reduced HRQoL. Diminished HRQoL in sarcoidosis is related to decreased physical function, pain, significant loss of income, absence from work, and strain on personal relationships. Symptom distress can result clearly from a sarcoidosis manifestation (e.g., ocular pain, breathlessness, cough) but may also be non-specific, such as pain or fatigue. More complex, a single non-specific symptom, e.g., fatigue may be directly sarcoidosis-derived (e.g., inflammatory state, neurologic, hormonal, cardiopulmonary), medication-related (e.g., anemia, sleeplessness, weight gain, sub-clinical infection), or an indirect complication (e.g., sleep apnea, physical deconditioning, depression). Identifying and distinguishing underlying causes of impaired HRQoL provides opportunity for treatment strategies that can greatly impact a patient's function, well-being, and disease outcomes. Herein, we present a reference manual that describes the current state of knowledge in sarcoidosis-related HRQoL and distinguish between diverse causes of symptom distress and other influences on sarcoidosis-related HRQoL. We provide tools to assess, investigate, and diagnose compromised HRQoL and its influencers. Strategies to address modifiable HRQoL factors through palliation of symptoms and methods to improve the sarcoidosis health profile are outlined; as well as a proposed research agenda in sarcoidosis-related HRQoL.The article is available via Open Access. Click on the 'Additional link' above to access the full-text.Published version, accepted version, submitted versio