The experience of emotional distress among women with scleroderma.

Emotional distress is common among patients with chronic medical illnesses, but the nature of the distress is not well understood. Our objective was to understand patients' experiences of emotional distress by conducting in-depth interviews using the McGill Illness Narrative Interview with women affected by scleroderma (N = 16). We sought to determine how participants described their distress, what they believed caused it, and how they coped. We analyzed interview transcripts using thematic analysis. Many participants described distress associated with scleroderma, but the term depression was reserved for extraordinary, severe experiences. Instead, participants preferred more normal mood descriptors and often viewed their distress in keeping with the definition of "demoralization." Participants listed concrete symptoms and experiences that caused distress, and some added that stress could exacerbate scleroderma. Participants dealt with distress by not dwelling on their circumstances and working to maintain autonomy. Most preferred to not rely on psychologists and support groups.

Time to abandon small-sample cohort research in health psychology?

Comments on the original article, "Avoidant coping as a predictor of mortality in veterans with end-stage renal disease" by E. J. Wolf and D. L. Mori (see record 2009-06704-009), in which the authors report that among 61 patients with endstage renal disease (ESRD), avoidant coping more than doubled the odds of mortality in multivariable analysis. The authors concluded that evaluating coping style in patients with ESRD would be clinically useful and that interventions targeting avoidant coping should be investigated. In this commentary, the current authors note that Wolf and Mori's (2009) finding was based on a sample where only 23 patients died over 9 years, and results were evaluated using a Cox regression model with six covariates, a ratio of only 3.8 outcome events per variable--well below recommended thresholds (e.g., Babyak, 2004; Peduzzi et al., 1995). Beyond this, the model did not assess key variables typically included in studies of ESRD outcomes (e.g., transplant status, cardiovascular problems). Wolf and Mori chose to focus on the relationship between avoidant coping and mortality. However, bivariable correlations and confidence intervals reported or generated from data in the article showed that the association between avoidant coping and mortality (r=.28, 95% CI [.03 to .50]) was not significantly stronger than two other correlations that were in the opposite direction of what would have been expected: hypertension with mortality (r=-.39, 95% CI [-.15 to -.59]) and medication compliance with mortality (r=.16, 95% CI [-.10 to .40]). Oddities of this sort are often encountered in very small datasets and, as a result, stronger evidence must be accrued from larger, more robust samples.

Health-related quality of life in systemic sclerosis: a systematic review.

OBJECTIVE: A number of studies (all n <200) have assessed health-related quality of life (HRQOL) in patients with systemic sclerosis (SSc), but no systematic review of the effect of SSc on HRQOL has been done. The objective of this study was to systematically review the literature on HRQOL in SSc measured using the Medical Outcomes Trust Short Form 36 (SF-36). METHODS: A comprehensive search was conducted in August 2007 using Medline, CINAHL, and EMBase to identify original research studies reporting SF-36 scores of SSc patients. Selected studies were reviewed and characteristics of the study samples and SF-36 data were extracted. Bayesian meta-analysis and meta-regression were performed to obtain pooled estimates of SF-36 physical component summary (PCS) and mental component summary (MCS) scores for all patients as well as by limited and diffuse disease status. RESULTS: Twelve data sets with a total of 1,127 SSc patients were included in the systematic review. HRQOL was impaired in patients with SSc, with pooled SF-36 PCS scores being more than 1 SD below the general population (38.3; 95% credible interval [95% CI] 35.2, 41.5) and pooled SF-36 MCS scores being approximately 0.5 SDs below the general population (46.6; 95% CI 44.2, 49.1). SF-36 PCS scores were 3.5 points (95% CI -1.0, 8.0) lower in patients with diffuse compared with limited disease. CONCLUSION: This study provides robust evidence of the presence and magnitude of impairment in HRQOL in patients with SSc. Although the impairment appears greater in physical health, mental health impairment is also reported.

Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions.

OBJECTIVE: Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases. METHODS: HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression. RESULTS: SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud's manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions. CONCLUSION: HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.