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Background
In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the diagnostic process. The ZSE-DUO study aims to assess the benefits of a combination of a physician focusing on somatic aspects with a mental health expert working side by side as a tandem in the diagnostic process.
Study design
This multi-center, prospective controlled study has a two-phase cohort design.
Methods
Two cohorts of 682 patients each are sequentially recruited from 11 university-based German Centers for Rare Diseases (CRD): the standard care cohort (control, somatic expertise only) and the innovative care cohort (experimental, combined somatic and mental health expertise). Individuals aged 12 years and older presenting with symptoms and signs which are not explained by current diagnoses will be included. Data will be collected prior to the first visit to the CRD’s outpatient clinic (T0), at the first visit (T1) and 12 months thereafter (T2).
Outcomes
Primary outcome is the percentage of patients with one or more confirmed diagnoses covering the symptomatic spectrum presented. Sample size is calculated to detect a 10 percent increase from 30% in standard care to 40% in the innovative dual expert cohort. Secondary outcomes are (a) time to diagnosis/diagnoses explaining the symptomatology; (b) proportion of patients successfully referred from CRD to standard care; (c) costs of diagnosis including incremental cost effectiveness ratios; (d) predictive value of screening instruments administered at T0 to identify patients with mental disorders; (e) patients’ quality of life and evaluation of care; and f) physicians’ satisfaction with the innovative care approach.
Conclusions
This is the first multi-center study to investigate the effects of a mental health specialist working in tandem with a somatic expert physician in CRDs. If this innovative approach proves successful, it will be made available on a larger scale nationally and promoted internationally. In the best case, ZSE-DUO can significantly shorten the time to diagnosis for a suspected rare disease.
The sociomotor framework outlines a possible role of social action effects on human action control, suggesting that anticipated partner reactions are a major cue to represent, select, and initiate own body movements. Here, we review studies that elucidate the actual content of social action representations and that explore factors that can distinguish action control processes involving social and inanimate action effects. Specifically, we address two hypotheses on how the social context can influence effect-based action control: first, by providing unique social features such as body-related, anatomical codes, and second, by orienting attention towards any relevant feature dimensions of the action effects. The reviewed empirical work presents a surprisingly mixed picture: while there is indirect evidence for both accounts, previous studies that directly addressed the anatomical account showed no signs of the involvement of genuinely social features in sociomotor action control. Furthermore, several studies show evidence against the differentiation of social and non-social action effect processing, portraying sociomotor action representations as remarkably non-social. A focus on enhancing the social experience in future studies should, therefore, complement the current database to establish whether such settings give rise to the hypothesized influence of social context.