Validity of the Swedish version of the systemic sclerosis quality of life questionnaire (SSCQoL): A novel measure of quality of life for patients with systemic sclerosis.

Systemic sclerosis (SSc) is an autoimmune disease characterised by microvascular injury and excessive fibrosis of the skin and internal organs,1 which influences activities of daily life2 and quality of life (QoL).3 The Medical Outcome Study Short Form-36, the EuroQol-5 Domain (EQ-5D) and the Patient-Reported Outcomes Measurement Information System 29-item are generic health-related QoL instruments, valid to be used in SSc.4 However, disease-specific tools could be more sensitive to capture disease-related factors influencing QoL. The Systemic Sclerosis Quality of Life Questionnaire (SScQoL), developed by Reay5 using a needs-based QoL model, is an outcome for assessing disease impact on health and well-being. The SScQoL consists of 29 items, covering the themes: function, emotion, sleep, social and pain. Each item with ‘yes’‘no’ response options are scored 1 and 0, respectively. The SScQoL has been sufficiently translated …