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.

Self-compassion, typically operationalized as the total score of the Self-Compassion Scale (SCS; Neff, 2003b), has been shown to be related to increased psychological well-being and lower depression in students of the social sciences, users of psychology websites and psychotherapy patients. The current study builds on the existing literature by examining the link between self-compassion and depressive symptomatology in a sample representative of the German general population (n = 2,404). The SCS subscales of self-judgment, isolation, and over-identification, and the “self-coldness”, composite score, which encompass these three negative subscales, consistently differed between subsamples of individuals without any depressive symptoms, with any depressive syndromes, and with major depressive disorder. The contribution of the positive SCS subscales of self-kindness, common humanity, and mindfulness to the variance in depressive symptomatology was almost negligible. However, when combined to a “self-compassion composite”, the positive SCS subscales significantly moderated the relationship between “self-coldness” and depressive symptoms in the general population. This speaks for self-compassion having the potential to buffer self-coldness related to depression—providing an argument for interventions that foster self-caring, kind, and forgiving attitudes towards oneself.

Over these past years, German researchers have shown much interest for Costa and McCrae's five factor model as well as for their instrument: the NEO-Five-Factor Inventory . Nevertheless, results from a recent survey study using the German version of the NEO-FFI on a representative population sample (n = 1908) have reported problems to replicate the factor structure of the instrument. Insufficient psychometric indices of single items led to partly unsatisfactory scale values. A logical consequence of this was the development of a short version of the instrument with better psychometric properties. This article reports item and scale values of the NEO-FFI-30 for the German population sample. The five scales reach good internal consistency and are highly correlated with the original NEO-FFI scales. Furthermore, the influence of sociodemographic variables and correlations with the Giessentest appear to be very similar for both the original instrument and the short version. Moreover, the factor structure was replicated in an independent sample of 2508 adults. Results confirm the reliability, and factor and construct validity of this economic instrument without any significant loss in information.

The primary goal of this review was to determine whether one-to-one peer support programmes benefit cancer patients. The secondary goal was to assess the quality of the research methodology and of the peer programme description as reported in original research studies. MEDLINE and PsycINFO databases were systematically searched in order to identify relevant studies published between May 2007 and July 2014. Eligible articles were evaluated using pre-existing criteria based on the Consolidated Standards of Reporting Trials Statement Checklist. This review included 13 studies: four randomised controlled trials, one non-randomised comparative study and eight one-group descriptive studies. All studies reported high participant satisfaction with the peer support intervention, and the majority noted positive outcomes regarding psychological adjustment. The quality of the description of the peer support programmes as well as the research methodology of the studies was rated as fair. Methodological weaknesses included biased recruitment strategies and limited information regarding peer volunteers, non-users of peer support and those who withdrew from support programmes. One-to-one peer support programmes have the unique advantage of being a low-cost intervention approach, but also showing potential for relieving the health-care system by reallocating some aspects of the cancer care to community settings. Future research should address the methodological weaknesses in study design and reporting.

Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.

BackgroundPublished validation studies have reported different factor structures for the Self-Compassion Scale (SCS). The objective of this study was to assess the factor structure of the SCS in a large general population sample representative of the German population.MethodsA German population sample completed the SCS and other self-report measures. Confirmatory factor analysis (CFA) in MPlus was used to test six models previously found in factor analytic studies (unifactorial model, two-factor model, three-factor model, six-factor model, a hierarchical (second order) model with six first-order factors and two second-order factors, and a model with arbitrarily assigned items to six factors). In addition, three bifactor models were also tested: bifactor model #1 with two group factors (SCS positive items, called SCS positive) and SCS negative items, called SCS negative) and one general factor (overall SCS); bifactor model #2, which is a two-tier model with six group factors, three (SCS positive subscales) corresponding to one general dimension (SCS positive) and three (SCS negative subscales) corresponding to the second general dimension (SCS negative); bifactor model #3 with six group factors (six SCS subscales) and one general factor (overall SCS).ResultsThe two-factor model, the six-factor model, and the hierarchical model showed less than ideal, but acceptable fit. The model fit indices for these models were comparable, with no apparent advantage of the six-factor model over the two-factor model. The one-factor model, the three-factor model, and bifactor model #3 showed poor fit. The other two bifactor models showed strong support for two factors: SCS positive and SCS negative.ConclusionThe main results of this study are that, among the German general population, six SCS factors and two SCS factors fit the data reasonably well. While six factors can be modelled, the three negative factors and the three positive factors, respectively, did not reflect reliable or meaningful variance beyond the two summative positive and negative item factors. As such, we recommend the use of two subscale scores to capture a positive factor and a negative factor when administering the German SCS to general population samples and we strongly advise against the use of a total score across all SCS items.

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Objective: Fear of cancer recurrence (FCR) is characterized by the fear, worry or concern that cancer will come back or progress. The negative effects associated with FCR are consistently identified by cancer survivors as one of their most prominent unmet needs. Current measures of FCR can be long, complex and burdensome for survivors to complete. The objective of the present study is to develop and validate a one-item measure of FCR.Methods: The ability of the FCR-1 to detect change in FCR over time was analyzed using a repeated-measures ANOVA and paired-samples t-tests. Pearson correlations were used to measure the concurrent, convergent and discriminant validity of the FCR-1, and a ROC analysis was conducted to determine an optimal clinical cut-off score.Results: The FCR-1 was found to be responsive to change in FCR over time. It demonstrated concurrent validity with the FCRI (r = .395, P = .010), and convergent validity with the Mishel Uncertainty in Illness Scale (r = .493, P = .001) and the Reassurance Questionnaire (r = .325, P = .044). Discriminant validity was confirmed when the FCR-1 did not significantly correlate with unrelated measures. A ROC analysis pinpointed an optimal clinical cut-off score of 45.0. Conclusions:The FCR-1 is a promising tool that can be incorporated in clinical and research settings. Due to its brevity, the care needs of highly distressed patients can be met quickly and efficiently. In research settings, the FCR-1 can reduce the cognitive burden experienced by survivors. K E Y W O R D S breast cancer, cancer, fear of cancer recurrence, oncology, psycho-oncology, scale development, single-item measure, survivors, unmet needs, validation | BACKGROUNDAlthough nearly half of all Canadian women will be diagnosed with cancer during their lifetime, the majority of these women will survive their cancer due to early detection and advanced treatment options. 1 Despite good prognosis, many of these women will experience fear of cancer recurrence (FCR). At a 2-day colloquium at the University of Ottawa in 2015, researchers consensually defined FCR as the "fear, worry, or concern relating to the possibility that cancer will come back or progress." 2 FCR is very common, especially at the end of treatment; studies have demonstrated that it can affect anywhere between 22% and 96% of cancer survivors. 2-4 Survivors consistently include FCR in their top health-related concerns, and frequently identify help regarding FCR as one of their most prominent unmet needs in healthcare settings. 4-6 29:788-795. wileyonlinelibrary.com/journal/pon 4 | RESULTS | ResponsivenessOnly participants with FCR-1 scores at all 6 timepoints (n = 29) were included in the RM ANOVA analysis. The FCR-1 means at each session are summarized in Table 2. A repeatedmeasures ANOVA with a Greenhouse-Geisser correction was used as sphericity could not be assumed. The mean scores for FCR were statistically significantly different (F[3.425, 95.903] = 4.026, P = .007, η 2 = .126). Paired sample ttests were conducted to examine the dif...