Wiley, Arthritis Care and Research, 8(62), p. 1181-1189, 2010
DOI: 10.1002/acr.20187
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OBJECTIVE:: There is relatively little research on important patient-reported outcomes that affect quality of life in systemic sclerosis (SSc) and even less research on psychological, behavioral, and educational intervention strategies. The objective was to review existing evidence and to develop a consensus research agenda for behavioral health and psychological research in SSc. METHODS:: An international panel of recognized experts in behavioral and psychological health in SSc, rheumatologists, patients, and patient advocates was convened to identify areas of concern for patients with SSc and to develop a research agenda. As part of this process, the PubMed and PsychInfo databases were searched from inception for the keywords "scleroderma" in conjunction with keywords related to each identified topic area. All relevant original and review articles were examined. RESULTS:: Key areas where behavioral health and psychological approaches may be useful to assess and improve quality of life in SSc include depression, fatigue, pain, pruritus, body image distress, and sexual function. Less researched areas that warrant attention include sleep, fear of disease progression and dependency, family and couples relationships, and healthcare factors. CONCLUSION:: Qualitative and quantitative studies are needed to (1) develop and evaluate assessment tools for SSc patient-reported outcomes; (2) assess potential causal and maintaining factors, as well as trajectories, of important problems faced by patients; and (3) develop and test psychological, behavioral, and educational interventions to reduce distress and increase overall well-being. Collaborative approaches that include multiple centers and that actively involve patients and patient advocates in the research process are needed.