Abstract
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.
Original language | English (US) |
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Pages (from-to) | 89-101 |
Number of pages | 13 |
Journal | Quality of Life Research |
Volume | 23 |
Issue number | 1 |
DOIs | |
State | Published - Feb 2014 |
Funding
Acknowledgments This research was supported by J & J Pharmaceutical Services. The contents represent original work and have not been published elsewhere. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.
Keywords
- Conceptual model
- Health-related quality of life
- Mixed methods research
- Patient reported outcomes
- Sarcoidosis
ASJC Scopus subject areas
- Public Health, Environmental and Occupational Health