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People living with chronic illness often report uncertainty about the future, fear of disease progression, fear of becoming physically disabled, and a reduced life expectancy as important sources of stress. However, little is known about psychological interventions targeting these concerns. The aim of this study is to illustrate an intervention to reduce emotional distress and concerns about the future in a patient with systemic sclerosis (SSc), a rare chronic rheumatic disease with serious consequences for most patients, and to present a preliminary report on its effectiveness using a single-case study design. Because of the complexity of symptoms and complaints due to SSc, the psychological intervention was embedded in an interdisciplinary care program also consisting of physical therapy, occupational therapy, and specialized nurse care.

Objective: To validate the Dutch translation of the Fear of Progression Questionnaire-Short Form (FoP-Q-SF) for patients with systemic sclerosis (SSc). Although concerns about the future are often expressed by patients with SSc, there is no valid quantitative measure available to assess the extent to which patients with SSc are troubled by those concerns., Methods: Measurement properties of the FoP-Q-SF were assessed using a cross-sectional design that included 215 patients with SSc. Patients completed the FoP-Q-SF as well as questionnaires on physical and psychological functioning. Psychometric properties of the FoP-Q-SF were assessed using the Consensus-Based Standards for the Selection of Health Status Measurement Instruments checklist., Results: The mean ± SD FoP-Q-SF score in patients with SSc was 30.05 ± 8.97. There were no indications of floor or ceiling effects. Confirmatory factor analysis supported the single-factor structure of the questionnaire (χ(2) [52] = 96.84, P < 0.001, root mean square error of approximation = 0.064, chi-square/df ratio = 1.86). Cronbach's alpha was 0.86 for the questionnaire. Most of our a priori hypotheses (11 of 12) were confirmed, supporting the construct validity of the questionnaire., Conclusion: A valid measure is now available to assess fear of disease progression in patients with SSc, which is significant since fear of progression is one of the most important stressors in this patient population., (Copyright © 2012 by the American College of Rheumatology.)

Objective: The prevalence of depressive symptoms is high in patients with systemic sclerosis (SSc, scleroderma). This study was conducted to determine which disease-related and psychosocial factors are associated with depressive symptoms, independent of sociodemographic factors., Methods: In total, 215 patients with SSc completed questionnaires on sociodemographics, physical functioning (HAQ-DI), pain (VAS), fatigue (CIS), psychosocial characteristics (CISS, ICQ, PRQ, ASE, FoP-Q-SF) and depressive symptoms (CES-D). Disease characteristics (disease duration, disease subtype, modified Rodnan Skin Score) were collected. Hierarchical linear regression analyses were conducted to assess associations with depressive symptoms., Results: The mean CES-D score was 12.9 (SD=9.7) and the prevalence of patients scoring>= 16 and>=19 were 32.1% and 25.1%, respectively. The variance explained by sociodemographics and disease characteristics was negligible (R(2)≤.09). Fatigue and pain were independently associated with depressive symptoms (R(2) change=.35). After adding psychological factors (R(2) change=.21), satisfaction with social support, emotion-focused coping and helplessness were also significantly associated with depressive symptoms. Higher fear of progression was associated with more depressive symptoms (P≤.01), and appearance self-esteem showed a marginally significant association (P=.08)., Conclusion: Depressive symptoms were common in the present sample of patients with SSc and were independently associated with pain, fatigue, social support, emotion-focused coping, helplessness and fear of progression. Results suggest that, in addition to assessment of disease characteristics, attention should be given also to psychosocial factors found to be associated with depressive symptoms. For the development and trialling of psychological interventions, fear of progression could be an important target., (Copyright © 2011 Elsevier Inc. All rights reserved.)