Predictors of the Social Participation of Adults with Down Syndrome: An Analysis Based on the Biopsychosocial Model of the International Classification of Functioning, Disability, and Health.

OBJECTIVE: The aim of the study is to identify the predictors of social participation in Down syndrome adults from the biopsychosocial model of the International Classification of Functioning, Disability, and Health. METHODS: An exploratory, analytical, cross-sectional study was conducted with Down syndrome adults. The social participation was assessed using the Life Habits Assessment. The independent variables were determined using the International Classification of Functioning, Disability, and Health biopsychosocial model: body functions were assessed by body mass index, cognition function (Mini-Mental State Examination), and lower limbs muscle strength (Sit-to-Stand Test). Activities were assessed by the 8-Foot Up and Go Test. Environmental factors were assessed by the measure of the quality of the environment, and personal factors were assessed by age, sex, and education level. RESULTS: The total Life Habits Assessment score indicates that individuals show moderate restriction in social participation, with major restriction in the education, employment, and responsibilities domains. The 8-Foot Up and Go Test was the best social participation predictor variable, followed by Mini-Mental State Examination, and the Sit-to-Stand Test. Contextual factors were not predictors of participation. CONCLUSIONS: It was concluded that individuals with Down syndrome present the most restrictions to social participation in activities that involve social roles. The predictors influencing social participation are functional mobility, cognition, and lower limb muscle strength.

Satisfaction and Shared Decision Making in a Multidisciplinary Care Clinic for Patients with Differences in Sex Development.

INTRODUCTION: Patients with differences in sex development represent a complex pediatric population with varying psychosocial and medical needs. Due to the complexity of care, families likely benefit from multidisciplinary care allowing for coordination of psychosocial and health services. Unfortunately, there are few data on the experiences of families of patients with differences of sex development in a multidisciplinary setting, such as their satisfaction with health care or their level of shared decision making. METHODS: Patients and guardians seen in a multidisciplinary, differences in sex development clinic were asked to participate in an anonymous online survey of their satisfaction with health care delivery (Patient Satisfaction Questionnaire Short Form) and involvement in shared decision making (Shared Decision Making Questionnaire). Welch's t-test was used to compare mean survey scores to historical and contemporary control populations. RESULTS: In all, 22 guardians and 1 young adult patient completed surveys. Median patient age was 36 months. Patient diagnoses were diverse, with the most common diagnosis beings 46, XY DSD (34.8%). At the time of their clinic visit, 7 patients had undergone surgery. Mean satisfaction scores were higher than a primary care population and comparable to patients and patients' caregivers with chronic medical conditions. The mean shared decision making score was well above adult populations and similar to caregiver reports in pediatric outpatient clinics. CONCLUSIONS: Despite the complex treatment associated with differences of sex development, families are very satisfied with the quality of care they receive in a multidisciplinary setting and appear to feel personally invested in the decision making process.

MoonProt 3.0: an update of the moonlighting proteins database.

MoonProt 3.0 (http://moonlightingproteins.org) is an updated open-access database storing expert-curated annotations for moonlighting proteins. Moonlighting proteins have two or more physiologically relevant distinct biochemical or biophysical functions performed by a single polypeptide chain. Here, we describe an expansion in the database since our previous report in the Database Issue of Nucleic Acids Research in 2018. For this release, the number of proteins annotated has been expanded to over 500 proteins and dozens of protein annotations have been updated with additional information, including more structures in the Protein Data Bank, compared with version 2.0. The new entries include more examples from humans, plants and archaea, more proteins involved in disease and proteins with different combinations of functions. More kinds of information about the proteins and the species in which they have multiple functions has been added, including CATH and SCOP classification of structure, known and predicted disorder, predicted transmembrane helices, type of organism, relationship of the protein to disease, and relationship of organism to cause of disease.