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01-02-2014 | Uitgave 1/2014

Quality of Life Research 1/2014

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

Tijdschrift:
Quality of Life Research > Uitgave 1/2014
Auteurs:
David E. Victorson, David Cella, Heidi Grund, Marc A. Judson

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.

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