A conceptual model of health-related quality of life in sarcoidosis.

PURPOSE: Sarcoidosis is a multisystem disease that commonly affects the lung, eye, skin, and lymphatic systems. Organ function has been a major focus of treatment outcome with less attention given to more subjective impacts, such as health-related quality of life (HRQL). The purpose of this paper is to present a conceptual model of HRQL in sarcoidosis, which was developed through patient and clinician input.
METHODS: We surveyed sarcoidosis clinical experts (n = 5) regarding disease-specific symptoms and their impact on their patient's lives. We also conducted three sarcoidosis patient focus groups (n = 22) that reflected major sarcoidosis typologies (lung, skin, and eye). Data were coded and summarized using qualitative methodologies.
RESULTS: Clinicians highlighted the following domains as being important (relative frequencies for comments are in parentheses): emotional distress (17%), lung problems (14%), pain (14%), physical limitations (14%), fatigue (10%), social limitations (10%), eye problems (7%), skin problems (7%), sleep disturbance (3%), and constitutional symptoms (3%). Similarly, patients highlighted the following domains: social limitations (14%), skin problems (12%), pain (10%), coping (10%), emotional distress (9%), lung problems (8%), eye problems (7%), negative impact of corticosteroids (7%), physical limitations (6%), fatigue (6%), sleep disturbance (3%), constitutional symptoms (2%), comorbidities (2%), other systems affected (2%), environmental factors (1%), and positive impact of corticosteroids (1%).
CONCLUSIONS: Clinician and patient responses overlapped in several domains, including emotional distress, physical and social limitations, and sarcoidosis-specific impacts, such as eye, skin, and lung problems. These findings support the HRQL impact of sarcoidosis and provide the basis for a conceptual model which has the potential to inform new patient-reported outcomes measures for this population.