Systemic sclerosis (scleroderma: SSc) is a rare, disfiguring connective tissue disease characterized by inflammation vascular injury, and fibrosis. Despite the significant physical disability, pain, disfigurement, negative prognosis, and lack of a cure associated with SSc, no psychosocial interventions have been developed and tested to guide these individuals in managing the daily challenges of living with a chronic illness and improving the quality of their lives. The proposed research will examine the efficacy of two psychological interventions designed to target important areas of daily living: pain, depression, and distress about disfigurement (Specific Aim #1). Individual differences in treatment outcome will be examined by determining whether clinical depression predicts the effects of professionally guide self-help materials (Specific Aim #2). Since psychological interventions requiring a trained professional can be costly and are often not available to the majority of patients, professional involvement in the proposed interventions will be minimal. Two hundred and one patients with systemic sclerosis who report symptoms of pain, depression, or distress about disfigurement will be recruited and randomized to one of three interventions: individual cognitive-behavioral therapy, self-help cognitive-behavioral intervention facilitated by a Psychologist, or a disease/health education intervention. Measures of pain, functioning, distress about disfigurement, and mood will be collected at baseline and following the 8-week intervention period by an individual blind to intervention assignment. Both the cognitive-behavioral self-help materials and the educational materials (8 written chapters and audiotapes) will be designed for home use but will be supplemented by individual sessions (2) and telephone contacts (2) with the professional. Patients will be followed for one year after completing the active intervention phase (Specific Aim #3). It is hypothesized that the therapist administered CB intervention and the self-help CB intervention will result in greater declines in pain, depression, and distress about disfigurement both at the end of the active intervention and at one year follow-up as compared to the disease/health educational intervention. Depression is expected to reduce the efficacy of the CB self-help intervention. These findings will increase our understanding of the quality of life of individuals with scleroderma and determine whether self-help interventions can be used effectively to manage pain, depression, and distress about disfigurement.
| Jewett, Lisa R; Malcarne, Vanessa L; Kwakkenbos, Linda et al. (2016) Development and Validation of the Body Concealment Scale for Scleroderma. Arthritis Care Res (Hoboken) 68:1158-65 |
| Jewett, Lisa R; Hudson, Marie; Haythornthwaite, Jennifer A et al. (2010) Development and validation of the brief-satisfaction with appearance scale for systemic sclerosis. Arthritis Care Res (Hoboken) 62:1779-86 |
| Knafo, Ruby; Thombs, Brett D; Jewett, Lisa et al. (2009) (Not) talking about sex: a systematic comparison of sexual impairment in women with systemic sclerosis and other chronic disease samples. Rheumatology (Oxford) 48:1300-3 |
| Heinberg, Leslie J; Kudel, Ian; White, Barbara et al. (2007) Assessing body image in patients with systemic sclerosis (scleroderma): validation of the adapted Satisfaction with Appearance Scale. Body Image 4:79-86 |
| Edwards, Robert R; Goble, Layne; Kwan, Amy et al. (2006) Catastrophizing, pain, and social adjustment in scleroderma: relationships with educational level. Clin J Pain 22:639-46 |
| Haythornthwaite, Jennifer A; Heinberg, Leslie J; McGuire, Lynanne (2003) Psychologic factors in scleroderma. Rheum Dis Clin North Am 29:427-39 |
| Benrud-Larson, Lisa M; Heinberg, Leslie J; Boling, Christy et al. (2003) Body image dissatisfaction among women with scleroderma: extent and relationship to psychosocial function. Health Psychol 22:130-9 |
| Benrud-Larson, Lisa M; Haythornthwaite, Jennifer A; Heinberg, Leslie J et al. (2002) The impact of pain and symptoms of depression in scleroderma. Pain 95:267-75 |
