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This paper illustrates a rigorous approach to the initial phases of scale development when evaluating an existing construct, dyadic efficacy, in a new population. Cancer-related dyadic efficacy represents a couples' confidence in their conjoint abilities to manage the effects of cancer. Two samples of individuals diagnosed with cancer and their partners, along with a professional panel, contributed lay and content expertise, respectively. Thematic analysis was used to describe cancer-related dyadic efficacy and identify content domains. Cancer-related dyadic efficacy was conceptualized as multidimensional, consistent with relational functioning, and distinct from self-efficacy. A pool of 50 items was developed to assess eight content domains grouped into three main themes: dyadic efficacy for managing (a) illness intrusions, (b) emotional responses and (c) communication and care for children. This paper responds to calls for more rigorous reporting of the qualitative procedures required to establish a conceptual grounding for a new scale. [ABSTRACT FROM AUTHOR]

Compassion towards oneself and towards others has been associated with positive psychological outcomes, however, research is limited by the availability of valid psychometric measures, particularly in languages other than English. The current study translated (English to French) and validated the following measures: the Compassionate Engagement and Action Scales (CEAS), assessing self-compassion (CEAS-SC), compassion to others (CEAS-TO), and compassion from others (CEAS-FROM); the Compassion Scale (CS); and the Sussex-Oxford Compassion Scales for Self (SOCS-S) and Others (SOCS-O). French-speaking participants were recruited online (N = 384) and completed the translated measures as well as questionnaires assessing self-compassion, depression, anxiety, stress, insecure attachment, mindfulness, and well-being. Confirmatory Factor Analysis supports the original factor structures proposed for the CEAS-FROM (two-factor hierarchical), CS (four-factor hierarchical), SOCS-S and SOCS-O (five-factor hierarchical), with alternate factor structures proposed for CEAS-SC (three-factor) and CEAS-TO (two-factor). Results showed good internal consistency and convergent validity for all scales, supporting the use of total scores for the translated measures. [ABSTRACT FROM AUTHOR]

Objective: Clinical practice guidelines (CPGs) are evidence‐based tools well‐suited to translate the latest research evidence into recommendations for routine clinical care. Given the rapid expansion of psychosocial oncology research, they represent a key opportunity for informing the treatment decisions of overburdened clinicians, standardizing service delivery, and improving patient‐reported outcomes. Yet, there is little consensus on how clinicians can most effectively access these tools and little to no information on the current availability and scope of CPGs for the range of psychosocial symptoms and concerns experienced by patients with cancer. Method: Our environmental scan consisted of an academic and gray literature designed to identify currently available CPGs addressing a range of cancer‐related psychosocial symptoms. Results: Findings revealed a total of 23 existing psychosocial oncology CPGs that met full eligibility criteria. The gray literature search was found to be more effective at identifying CPGs (n = 22) compared to the academic search (n = 9). Conclusion: Several concerns arose from the systematic search. The limited publication of CPGs in peer‐reviewed journals may make clinicians and stakeholders more hesitant to implement CPGs due to uncertainties about the methodological rigor of the development process. Further, many existing CPGs are outdated or failed to be updated according to guideline recommendations, meaning that the recommendations may fall short of their purpose to translate up‐to‐date research findings. Future directions: Future research should seek to systematically assess the quality of existing psychosocial oncology CPGs and shed light on the current state of implementation and adherence in clinical practice in order to better inform guideline developers on the current needs of the psychosocial oncology community. [ABSTRACT FROM AUTHOR]

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Objective: Body concealment is a component of social avoidance among people with visible differences from disfiguring conditions, including systemic sclerosis (SSc). The study objective was to develop a measure of body concealment related to avoidance behaviors in SSc.Methods: Initial items for the Body Concealment Scale for Scleroderma (BCSS) were selected using item analysis in a development sample of 93 American SSc patients. The factor structure of the BCSS was evaluated in 742 Canadian patients with single-factor, 2-factor, and bifactor confirmatory factor analysis models. Convergent and divergent validity were assessed by comparing the BCSS total score with the Brief-Satisfaction with Appearance Scale (Brief-SWAP) and measures of depressive symptoms and pain.Results: A 2-factor model (Comparative Fit Index [CFI] 0.99, Tucker-Lewis Index [TLI] 0.98, Root Mean Square Error of Approximation [RMSEA] 0.08) fit substantially better than a 1-factor model (CFI 0.95, TLI 0.94, RMSEA 0.15) for the 9-item BCSS, but the Concealment with Clothing and Concealment of Hands factors were highly correlated (α = 0.79). The bifactor model (CFI 0.99, TLI 0.99, RMSEA 0.08) also fit well. In the bifactor model, the omega coefficient was high for the general factor (ω = 0.80), but low for the Concealment with Clothing (ω = 0.01) and Concealment of Hands (ω = 0.33) factors. The BCSS total score correlated more strongly with the Brief-SWAP Social Discomfort (r = 0.59) and Dissatisfaction with Appearance (r = 0.53) subscales than with measures of depressive symptoms and pain.Conclusion: The BCSS sum score is a valid indicator of body concealment in SSc that extends the concepts of body concealment and avoidance beyond the realms of body shape and weight to concerns of individuals with visible differences from SSc. [ABSTRACT FROM AUTHOR]

Skin self-examination (SSE) is a crucial preventive health behaviour in melanoma survivors, as it facilitates early detection. Physician endorsement of SSE is important for the initiation and maintenance of this behaviour. This study focussed on the preliminary validation of a new nine-item measure assessing physician support of SSE in melanoma patients. English and French versions of this measure were administered to 188 patients diagnosed with melanoma in the context of a longitudinal study investigating predictors and facilitators of SSE. Structural validity was investigated using exploratory factor analysis conducted in Mplus and convergent and divergent validity was assessed using bivariate correlations conducted in spss. Results suggest that the scale is a unidimensional and reliable measure of physician support for SSE. Given the uncertainty regarding the optimal frequency of SSE for at-risk individuals, we recommend that future psychometric evaluations of this scale consider tailoring items according to the most up-to-date research on SSE effectiveness. [ABSTRACT FROM AUTHOR]

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Aims: The NEO Five-Factor Inventory (NEO-FFI), a well-established 60-item questionnaire based on the Five-Factor Model (FFM) of personality, provides a valuable framework for the interdisciplinary approach to personality research and clinical practice. In response to the need for briefer personality measures, a 30-item version of the NEO-FFI (NEO-FFI-30) was developed and its factor structure replicated. Method: The study examines the psychometric quality of NEO-FFI-30 and provides population-based norms (n=1908 adults). Reliability coefficients, kurtosis, skewness, correlations and effect sizes illustrate the psychometric properties of the measure. Results: The relationships between neuroticism, extraversion, openness, agreeableness, conscientiousness and sociodemographic characteristics confirm previous research findings and speak to the validity of the brief version. Namely, women report higher neuroticism and agreeableness. Younger individuals indicate more extraversion but less agreeableness and conscientiousness. Finally, openness to experience was related to higher education. Percentile ranks are provided for the total sample and for subgroups by age and gender. Conclusions: The 30-item-version of the NEO-FFI constitutes an assessment tool comparable with the full-length instrument with regard to its psychometric properties. As such, the NEO-FFI-30 is a promising alternative to longer questionnaires, as well as to single-item measures of personality used in research and clinical practice. [ABSTRACT FROM AUTHOR]

Aim. It is common knowledge that disturbed interpersonal functioning is a key feature of borderline personality disorder (BPD). However, it remains uncertain whether patients with BPD have specific interpersonal behaviours that can be validly and objectively identified. This study examined the interpersonal behaviours of patients with BPD. Method. The narratives of interpersonal interactions of the 66 participants were rated using the Core Conflictual Relationship Theme (CCRT) method. Results. Results showed that once other Axis II disorders were controlled for, only three CCRT components significantly predicted scores on the Borderline Personality Disorder Scale: not wishing to be good as a CCRT Wish component, others not being untrustworthy as a response of other component, and not being open to others as a response of self component. However, while these findings were significant, the percentage of variance explained remained low. Conclusions. The authors argue that future research will need to examine subgroups within BPD if specific interpersonal behaviours are to be reconsidered. [ABSTRACT FROM AUTHOR]

Objectives: Peer-led support groups are an important resource for people living with many rare diseases, including scleroderma (systemic sclerosis, SSc). Little is known, however, about the accessibility of SSc support groups and factors that may discourage people from participating in these groups. The objective of this study was to identify reasons why people with SSc do not participate in SSc support groups., Methods: Canadians with SSc were recruited to complete the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. Data from respondents who answered the question "Have you participated in SSc support groups?" with "No" were analyzed. Frequencies of participants who responded (1) I'm not interested, (2) None are easily available, and (3) Other (please specify) were tallied. A content analysis approach was used to code the open-ended responses to this question., Results: A total of 280 respondents provided a reason for non-participation in SSc support groups. Key reasons for not participating in support groups included: (1) Not interested or no perceived need (36%); (2) No local support group available (35%); (3) Lack of awareness of the existence of SSc support groups (13%); (4) Practical barriers (6%); (5) Emotional factors (4%); (6) Uncertainty about whether to attend (4%); and (7) Negative perceptions about support groups (3%)., Conclusions: SSc organizations may be able to address current limitations in the accessibility and effectiveness of SSc support groups by implementing online support groups, as well as by providing support group leaders training to help establish and sustain successful SSc support groups.

Objectives: Appearance concerns are common in systemic sclerosis (SSc) and have been linked to younger age and more severe disease. No study has examined their association with sex or race/ethnicity., Methods: SSc patients were sampled from the Scleroderma Patient-centered Intervention Network Cohort. Presence of appearance concerns was assessed with a single item, and medical and sociodemographic information were collected., Results: Of 644 patients, appearance concerns were present in 72%, including 421 of 565 women (75%), 42 of 79 men (53%), 392 of 550 patients who identified as White (71%), 35 of 41 who identified as Black (85%), and 36 of 53 who identified as another race/ethnicity (68%). In multivariate analysis, women had significantly greater odds of reporting appearance concerns than men (odds ratio (OR)=2.97, 95% confidence interval (CI)=1.78-4.95, p<.001). Black patients had significantly greater odds of appearance concerns than White patients in unadjusted (OR=2.64, 95% CI=1.01-6.34, p=.030), but not multivariate analysis (OR=1.76, 95% CI=0.67-4.60, p=.250). Compared to a general population sample, appearance concerns were substantially more common in SSc, particularly for men across all age groups and for younger women. The most commonly reported features of concern were related to the face and head, followed by the hands and fingers; this did not differ by sex or race/ethnicity., Conclusions: Appearance concerns were common in SSc. Women were substantially more likely than men to have appearance concerns. Although non-significant in multivariate analysis, Black patients were more likely to have concerns than White patients, likely due to more severe changes in appearance.

Objectives: This article reports comparisons of the Giessen Test (GT) with the NEO-Five-Factor-Inventory (NEO-FFI) based on a dimensional as well as on a typological approach., Method: Data were collected from 1673 subjects (aged between 18 and 96 years) constituting a representative sample of the German population., Results: The results indicate only moderate agreement (ranging from .25 to .61) between the subscales of the two personality inventories. The correspondence seems to be somewhat higher, when the typological approach was used instead of the dimensional approach., Conclusions: The typological approach is less dependent on the underlying questionnaires and provides a useful extension of the dimensional approach.