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Background: A number of patients have complex care needs that arise from interactions among multiple factors, such as multimorbidity, mental health issues, and social vulnerability. These factors influence decisions about healthcare and health services. Shared decision-making (SDM), a collaborative process between patients and professionals, is known to improve the quality of the decision-making process. However, follow-up challenges of patients with complex care needs (PCCNs) can lead to SDM specificities., Objective: To identify specificities of SDM with PCCNs., Methods: We conducted a scoping review using the Joanna Briggs Institute (JBI) methodology. We conducted a systematic search across MEDLINE, CINAHL, PsycINFO, and Academic Search Complete databases. Empirical studies about SDM with PCCNs published between 1997 and 2023 were eligible for inclusion. We conducted a mixed thematic analysis using deductive (Ottawa Decision Support Framework and Interprofessional Shared Decision-Making Model) and inductive approaches. Following Arksey & O'Malley's and Levac et al.'s methodological recommendations, we consulted experts (researchers, healthcare professionals, and patient partners) to enhance the findings., Results: Twelve studies were included in the review. Overall, our results demonstrated the importance of recognizing some specificities of SDM with PCCNs, such as the simultaneous presence of multiple decisions and the multidisciplinary and intersectoral nature of the healthcare and health services they receive., Conclusion: This scoping review highlights some specificities that must be considered in SDM with PCCNs to maintain its already-known benefits and ensure positive health and decision-making outcomes., (© 2024. The Author(s).)

Background: Health measurement guides policies and health care decisions are necessary to describe and attain the quintuple aim of improving patient experience, population health, care team well-being, health care costs, and equity. In the primary care setting, patient-reported outcome measurement allows outcome comparisons within and across settings and helps improve the clinical management of patients. However, these digital patient-reported outcome measures (PROMs) are still not adapted to the clinical context of primary health care, which is an indication of the complexity of integrating these tools in this context. We must then gather evidence of their impact on chronic disease management in primary health care and understand the characteristics of effective implementation., Objective: We will conduct a systematic review to identify and assess the impact of electronic PROMs (ePROMs) implementation in primary health care for chronic disease management. Our specific objectives are to (1) determine the impact of ePROMs in primary health care for chronic disease management and (2) compare and contrast characteristics of effective ePROMs' implementation strategies., Methods: We will conduct a systematic review of the literature in accordance with the guidelines of the Cochrane Methods Group and in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for its reporting. A specific search strategy was developed for relevant databases to identify studies. Two reviewers will independently apply the inclusion criteria using full texts and will extract the data. We will use a 2-phase sequential mixed methods synthesis design by conducting a qualitative synthesis first, and use its results to perform a quantitative synthesis., Results: This study was initiated in June 2022 by assembling the research team and the knowledge transfer committee. The preliminary search strategy will be developed and completed in September 2022. The main search strategy, data collection, study selection, and application of inclusion criteria were completed between October and December 2022., Conclusions: Results from this review will help support implementation efforts to accelerate innovations and digital adoption for primary health care and will be relevant for improving clinical management of chronic diseases and health care services and policies., Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42022333513; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=333513., International Registered Report Identifier (irrid): DERR1-10.2196/48155., (©Maxime Sasseville, Wilfried Supper, Jean-Baptiste Gartner, Géraldine Layani, Samira Amil, Peter Sheffield, Marie-Pierre Gagnon, Catherine Hudon, Sylvie Lambert, Eugène Attisso, Victoria Bureau Lagarde, Mylaine Breton, Marie-Eve Poitras, Pierre Pluye, Pierre-Henri Roux-Levy, James Plaisimond, Frédéric Bergeron, Rachelle Ashcroft, Sabrina Wong, Antoine Groulx, Nicolas Beaudet, Jean-Sébastien Paquette, Natasha D'Anjou, Sylviane Langlois, Annie LeBlanc. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 18.08.2023.)

The management of patients with rare diseases (RD) presents many challenges including diagnosis, coordination of care, and orientation in the health system. For these patients, the general practitioner (GP) is not always the referring physician. The aim of this study was to determine the place of the GP in management of patients with RD. We used a qualitative study by case-study. From March to October 2020, semi-structured interviews were conducted by telephone with the families of adult patients with RD and intellectual disability, and with the health professionals involved in their management. Patients were recruited through RD reference centres, patient associations or GPs. The interviews were transcribed and analysed by two independent investigators. A grounded theory-based analysis was performed. Eight case studies were conducted with 20 participants. Our results highlighted the trajectory of the patients through the development of the career of the primary informal caregiver. The caregivers developed skills required for the management of the care recipient. Within this trajectory, the GP found his place depended on the skills he could provide, their interest in the disease, the skills developed by the caregiver, and the caregiver/care recipient needs. The GP was mostly consulted for routine care and administrative procedures, but when a trusting relationship was established, they also accompanied the patient and their family by providing appropriate medical, social or psychological support. The GP will be all the more a privileged actor in the care process that he will be involved in the coordination of all other actors, professional as non-professionals., Competing Interests: Declaration of competing interest The authors declare no conflict of interest., (Copyright © 2022 Elsevier Masson SAS. All rights reserved.)

Résumé Introduction. Cette étude évaluait l'impact d'un atelier équilibre en hôpital de jour gériatrique sur la prévention des chutes chez le sujet âgé. Méthode. Il s'agissait d'une étude prospective et monocentrique. Des tests moteurs ont été réalisés ainsi qu'un bilan psychologique à 2 mois (M2), à 6 mois (M6) et à 1 an (M12). Résultats. Soixante-cinq patients ont été inclus, d'âge moyen de 82,0 ans, dont 58 femmes. Il existait une amélioration significative des différents tests moteurs durant le suivi. La durée du Timed Up and Go (s), passait de 19,1 ± 8,2 à l'inclusion, à 15,8 ± 6,6 à M2 (P = 0,01 ), à 16,4 ± 6,9 à M6 (P = 0,04 inclusion vs M6) et à 16,3 ± 6,4 à M12 (P = 0,04 inclusion vs M12). Il existait aussi une amélioration psychologique significative. Le score à l'échelle Falls Efficacy Scale International-I passait de 11,6 ± 6,1 à l'inclusion à 8,2 ± 5,5 à M2 (P = 0,001), à 9,2 ± 6,0 à M6 (P = 0,02 inclusion vs M6) et à 9,0 ± 6,1 à M12 (P = 0,02 inclusion vs M12)., Conclusion: Cette étude souligne l'intérêt des ateliers équilibre en soins primaires. Abstract Introduction. Falls are a major public health problem as a result of the high frequency of these events and morbidity/mortality among elderly persons. A prevention policy is a potential means to reduce the incidence of falls. This study aimed to assess the impact of a balance workshop in a geriatric day-hospital (GDH) on the prevention of falls in olderadults., Method: This was a prospective, single centre study conducted in the GDH of a general hospital. Motor tests and a psychological assessment were performed at 2 months (M2), 6 months (M6)and 1 year (M12)., Results: Sixty-five patients were included, aged 82.0 ± 7.7 years. Fifty-eight were women (89.2%). The statistical analyses showed a significant improvement in all motor tests during the follow-up at the defined intervals. The Timed Up and Go test (s) significantly decreased between inclusion, 19.1 ± 8.2, and M2, 15.8 ± 6.6 (P = 0.01 inclusion vs M2), then was stable at M6, 16.4 ± 6.9 (P = 0.04 inclusion vs M6) and at M12, 16.3 ± 6.4 (P = 0.04 inclusion vs M12). There was also significant psychological improvement throughout follow-up. The score on the Falls Efficacy Scale International-I decreased from 11.6 ± 6.1 at inclusion to 8.2 ± 5.5 at M2 (P = 0.001 inclusion vs. M2), 9.2 ± 6.0 at M6 (P = 0.02 inclusion vs. M6), and 9.0 ± 6.1 at M12 (P = 0.02 inclusion vs. M12)., Conclusion: This study highlights the value and the need for balancing workshops in primary care.

Down syndrome (DS) is a genetic neurodevelopmental disorder. In individuals with DS, a multidisciplinary approach to care is required to prevent multiple medical complications. The aim of this study was to describe the rehabilitation, medical care, and educational and social support provided to school-aged French DS patients with varying neuropsychological profiles. A mixed study was conducted. Quantitative data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Qualitative data were collected by semi-structured face-to-face interviews and focus groups. Ninety-five DS subjects with a mean age of 10.9 years were included. Sixty-six per cent had a moderate intellectual disability (ID) and 18.9% had a severe ID. Medical supervision was generally multidisciplinary but access to medical specialists was often difficult. In terms of education, 94% of children under the age of six were in typical classes. After the age of 15, 75% were in medico-social institutions. Analysis of multidisciplinary rehabilitation conducted in the public and private sectors revealed failure to access physiotherapy, psychomotor therapy and occupational therapy, but not speech therapy. The main barrier encountered by patients was the difficulty accessing appropriate facilities due to a lack of space and long waiting lists. In conclusion, children and adolescents with DS generally received appropriate care. Though the management of children with DS has been improved considerably, access to health facilities remains inadequate., (Copyright © 2021. Published by Elsevier Masson SAS.)

Background: In France, the Ministry of Health has implemented a comprehensive program for rare diseases (RD) that includes an epidemiological program as well as the establishment of expert centers for the clinical care of patients with RD. Since 2007, most of these centers have entered the data for patients with developmental disorders into the CEMARA population-based registry, a national online data repository for all rare diseases. Through the CEMARA web portal, descriptive demographic data, clinical data, and the chronology of medical follow-up can be obtained for each center. We address the interest and ongoing challenges of this national data collection system 10 years after its implementation., Methods: Since 2007, clinicians and researchers have reported the "minimum dataset (MDS)" for each patient presenting to their expert center. We retrospectively analyzed administrative data, demographic data, care organization and diagnoses., Results: Over 10 years, 228,243 RD patients (including healthy carriers and family members for whom experts denied any suspicion of RD) have visited an expert center. Among them, 167,361 were patients affected by a RD (median age 11 years, 54% children, 46% adults, with a balanced sex ratio), and 60,882 were unaffected relatives (median age 37 years). The majority of patients (87%) were seen no more than once a year, and 52% of visits were for a diagnostic procedure. Among the 2,869 recorded rare disorders, 1,907 (66.5%) were recorded in less than 10 patients, 802 (28%) in 10 to 100 patients, 149 (5.2%) in 100 to 1,000 patients, and 11 (0.4%) in > 1,000 patients. Overall, 45.6% of individuals had no diagnosis and 6.7% had an uncertain diagnosis. Children were mainly referred by their pediatrician (46%; n = 55,755 among the 121,136 total children referrals) and adults by a medical specialist (34%; n = 14,053 among the 41,564 total adult referrals). Given the geographical coverage of the centers, the median distance from the patient's home was 25.1 km (IQR = 6.3 km-64.2 km)., Conclusions: CEMARA provides unprecedented support for epidemiological, clinical and therapeutic studies in the field of RD. Researchers can benefit from the national scope of CEMARA data, but also focus on specific diseases or patient subgroups. While this endeavor has been a major collective effort among French RD experts to gather large-scale data into a single database, it provides tremendous potential to improve patient care., (© 2021. The Author(s).)

Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder with a characteristic behavioural phenotype. A multidisciplinary approach to care is required to prevent multiple medical complications in individuals affected by PWS. The aim of this study was to describe the rehabilitation, medical care, educational and social support provided to school-aged French PWS patients with varying neuropsychological profiles. Data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Nineteen PWS subjects with a mean age of 9.2 years were included. The mean full-scale intellectual quotient (IQ) was 58 (Wechsler scale). There were frequent dissociations between verbal and performance IQ that were not associated with a specific profile. We also observed lower autonomy and communication scores (5.3 years and 5.9 years equivalent, respectively, Vineland scale), the absence of hyperactivity (Conners scale), and the presence of behavioural abnormalities (CBCL scale). Multidisciplinary medical supervision was generally coordinated by the paediatric endocrinologist and did not always include follow-up with all of the recommended specialists, in particular with a paediatric psychiatrist. Analysis of multidisciplinary rehabilitation conducted in public and private-sector establishment revealed failings in psychological support, occupational therapy and dietary follow-up. Regarding education, most children younger than 10 years were in normal schools, while older individuals were often cared for in medico-social institutions. In conclusion, children and adolescents with PWS generally received appropriate care. Though there have been considerable improvements in the management of children with PWS, reference centres should continue reinforcing the coordination of multidisciplinary supervision., (Copyright © 2020. Published by Elsevier Masson SAS.)