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

David E. Victorson*, David Cella, Heidi Grund, Marc A. Judson

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

15 Scopus citations

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 languageEnglish (US)
Pages (from-to)89-101
Number of pages13
JournalQuality of Life Research
Volume23
Issue number1
DOIs
StatePublished - Feb 2014

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

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