Cognitive-behavioural therapy targeting fear of progression in an interdisciplinary care program: a case study in systemic sclerosis.

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.

An acceptance-oriented cognitive-behavioral therapy in multimodal rehabilitation: a pre-post test evaluation in highly distressed patients with rheumatic diseases.

OBJECTIVE: To examine the potential effectiveness of a multimodal rehabilitation program including an acceptance-oriented cognitive-behavioral therapy for highly distressed patients with rheumatic diseases. METHODS: An observational study employing a one-group pre-post test design (N=25). The primary outcome was psychological distress. Secondary outcomes were quality of life, illness acceptance, and coping flexibility. Group pre-to-post and pre-to-12 months follow-up treatment changes were evaluated by paired-samples t-tests and Cohen's effect sizes (d). Individual changes were evaluated by the reliable change index (RCI) and clinically significant change (CSC) parameters. RESULTS: Significant effects were found post-treatment and maintained at 12 months in psychological distress (d>0.80), illness acceptance (d=1.48) and the SF-36 subscales role physical, vitality, and mental health (d ≥ 0.65). No significant effects were found for coping flexibility and the SF-36 subscales physical functioning, bodily pain, social functioning, and role emotional. Both a reliable (RCI) and clinically significant (CSC) improvement was observed for almost half of the highly distressed patients. CONCLUSION: The patients enrolled in the multimodal rehabilitation program showed improved psychological health status from pre to post-treatment. PRACTICE IMPLICATIONS: A randomized clinical trial is needed to confirm or refute the added value of an acceptance-oriented cognitive-behavioral therapy for highly distressed patients in rehabilitation.

Cross-language measurement equivalence of the Center for Epidemiologic Studies Depression (CES-D) scale in systemic sclerosis: a comparison of Canadian and Dutch patients.

OBJECTIVES: Increasingly, medical research involves patients who complete outcomes in different languages. This occurs in countries with more than one common language, such as Canada (French/English) or the United States (Spanish/English), as well as in international multi-centre collaborations, which are utilized frequently in rare diseases such as systemic sclerosis (SSc). In order to pool or compare outcomes, instruments should be measurement equivalent (invariant) across cultural or linguistic groups. This study provides an example of how to assess cross-language measurement equivalence by comparing the Center for Epidemiologic Studies Depression (CES-D) scale between English-speaking Canadian and Dutch SSc patients. METHODS: The CES-D was completed by 922 English-speaking Canadian and 213 Dutch SSc patients. Confirmatory factor analysis (CFA) was used to assess the factor structure in both samples. The Multiple-Indicator Multiple-Cause (MIMIC) model was utilized to assess the amount of differential item functioning (DIF). RESULTS: A two-factor model (positive and negative affect) showed excellent fit in both samples. Statistically significant, but small-magnitude, DIF was found for 3 of 20 items on the CES-D. The English-speaking Canadian sample endorsed more feeling-related symptoms, whereas the Dutch sample endorsed more somatic/retarded activity symptoms. The overall estimate in depression scores between English and Dutch was not influenced substantively by DIF. CONCLUSIONS: CES-D scores from English-speaking Canadian and Dutch SSc patients can be compared and pooled without concern that measurement differences may substantively influence results. The importance of assessing cross-language measurement equivalence in rheumatology studies prior to pooling outcomes obtained in different languages should be emphasized.

Disease-related and psychosocial factors associated with depressive symptoms in patients with systemic sclerosis, including fear of progression and appearance self-esteem.

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.

Validity of the Fear of Progression Questionnaire-Short Form in patients with systemic sclerosis.

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.

Behavior change, acceptance, and coping flexibility in highly distressed patients with rheumatic diseases: feasibility of a cognitive-behavioral therapy in multimodal rehabilitation.

OBJECTIVE: To describe the development and feasibility of the integration of a cognitive-behavioral therapy (CBT) within a multimodal rehabilitation program for highly distressed patients with rheumatic diseases. METHODS: Development included the detailed specification of the theoretical and empirical-based underpinnings of the CBT and the comprehensive description of its design and content. Feasibility was assessed by percentage of eligible patients, attrition and attendance rates, and patient satisfaction. RESULTS: The developed CBT component seeks to decrease psychological distress and improve activities and participation across multiple life domains by accomplishing behavior change, acceptance, and coping flexibility. Motivational interviewing was applied to endorse patients' own reasons to change. Forty percent (35/87) of the eligible patients were admitted to the program. Attendance rate (>95%) was high. Patient satisfaction ranged from 6.8 to 8.0 (10-point scale). CONCLUSION: Integrating CBT within a multimodal rehabilitation program is feasible. An acceptable proportion of the intended patient sample is eligible and patient's attendance and satisfaction is high. PRACTICE IMPLICATIONS: Patients with impaired physical and psychosocial functioning despite adequate medical treatment pose a great challenge. Their treatment outcome may be improved by screening and selecting highly distressed patients and offering them a CBT embedded in multimodal rehabilitation program.

The coping flexibility questionnaire: development and initial validation in patients with chronic rheumatic diseases.

Coping flexibility may be beneficial for the adjustment in the context of a progressive and unpredictable course of chronic rheumatic diseases. The aim of this study was to develop and initially validate a self-report measure that assesses coping flexibility. Study participants were 147 outpatients with chronic rheumatic diseases (73% women, mean age 59 (range 20-79) years). Principal axis factoring analysis with oblique rotation was applied and internal consistency was determined. To investigate the initial validity of the coping flexibility questionnaire (COFLEX), hypothesised correlations with psychological and physical adjustment outcomes, pain, and coping strategies were examined. Factor analysis yielded a two-factor model of coping flexibility with acceptable internal consistency: versatility, the capability of switching between assimilative and accommodative coping strategies according to personal goals and situational demands (α = .88) and reflective coping, the capability of generating and considering coping options, and appraising the suitability of a coping strategy in a given situation (α = .70). Versatility was correlated with adaptive ways of coping and psychological adjustment, but not with physical adjustment and pain. Reflective coping was correlated with both adaptive and maladaptive ways of coping, but it was not correlated with adjustment outcomes. In conclusion, the current study suggests acceptable internal consistency of the COFLEX. Preliminary evidence of the validity of the versatility dimension is indicated, while the validity of reflective coping could not be firmly established. The associations of versatility with favourable adjustment to the disease warrant future confirmatory and validity research in larger samples of patients with chronic rheumatic diseases.

Addressing patient health care demands in systemic sclerosis: pre-post assessment of a psycho-educational group programme.

OBJECTIVES: Patients diagnosed with systemic sclerosis (SSc) report a high need for education and support. To address these needs, a short, group-based psycho-educational programme for patients with SSc was developed and evaluated. METHODS: A pre-post test design was utilised. Participants completed questionnaires on physical and psychological functioning. Furthermore, patients were asked to evaluate the content of the programme by questionnaire. RESULTS: Data from 41 patients were available for analysis. Patients reported less helplessness after the intervention, and higher acceptance of their limitations. However, no difference in depressed mood and physical functioning was observed. Patients reported high satisfaction with the content of the programme. CONCLUSIONS: Despite the limited changes in psychological and physical functioning, this psycho-educational programme addresses patients' needs reported in previous study and therefore contributes to the improvement of care for patients with SSc.

Longitudinal association between coping and psychological distress in rheumatoid arthritis: a systematic review.

OBJECTIVE: To examine the longitudinal association between coping and psychological distress in rheumatoid arthritis (RA). METHODS: Bibliographic databases up to July 2010 were searched for longitudinal studies with a follow-up of ≥6 months. Two reviewers assessed the methodological quality of the included studies. Study characteristics, coping strategies and coping-psychological distress associations were extracted. Coping strategies were categorised using a hierarchical taxonomy. A best-evidence synthesis determined the level of evidence for a prognostic association of coping with depression, anxiety and general distress. RESULTS: From an initial set of 2605 potentially relevant studies, 19 studies (14 cohorts) met the predefined selection criteria. In all, 10 studies were of 'high quality' (≥12 of 18 quality criteria). Unadjusted bivariate correlations showed that baseline approach-oriented coping correlated with lower psychological distress (r between 0.007-0.46, p values <0.05) and baseline avoidant-oriented coping correlated with higher psychological distress (r between 0.29-0.64, p values <0.05) at follow-up. Adjusted for baseline psychological distress, limited evidence was found that avoidant-oriented coping was longitudinally associated with an increase in psychological distress. Specifically, the categories helplessness, avoidance and wishful thinking were prognostically associated with increased general psychological distress. Approach-oriented coping was not associated with subsequent psychological distress. CONCLUSIONS: The prognostic value of coping strategies for later psychological distress in RA is weak. Limited evidence suggests that avoidant-oriented coping is associated with increased subsequent psychological distress. No evidence was found that approach-oriented coping protects against an increase of psychological distress.