Table 8.
Research Agenda for Sarcoidosis-Related HRQoL.
| Expansive patient perspective investigations. |
| Isolate determinants of racial disparities in sarcoidosis, develop proactive interventions for targeted reversal of identified disparities. |
| Characterize presentations and descriptors to help identify type and cause of fatigue in sarcoidosis. |
| Develop protocol for management of fatigue according to type and cause. |
| Investigations to characterize ‘flare’ types, relational causes and recovery. |
| Integrated mind–body strategy impacts on inflammation, pulmonary functioning, fatigue, and HRQoL. |
| Exercise and physical activity impact on inflammation and other biomarkers, HRQoL. |
| Testing muscle endurance with FI-2/FI-3 in correlation with fatigue and other assessment parameters. |
| Identify optimal parameters of physical training in sarcoidosis. |
| Impact of sarcoidosis-related psychological distress on patient perceptions of their loved ones’ anxiety and emotional distress. |
| Impact of home-based prescriptions for physical activity and exercise on depressive symptoms, fatigue, inflammation, and activity levels in patients with sarcoidosis. |
| Examine HRQoL in the context of morbidity and survival in sarcoidosis. |
| Examine HRQoL interventions on symptom distress and survival. |
| Examine exercise on HRQoL and survival as stratified for disease severity. |
| Development of sarcoidosis-specific patient-reported experience measure (PREM). |
| Development of sarcoidosis-specific patient engagement measure (PEM). |
Develop and test CME practice modules on:
|